For Jessica

A couple of weeks ago, a friend of mine and I were talking about a study she’d just read, which concluded that people without children were happier than people with children; or, to put it more precisely, despite what conventional wisdom holds, the study found that having children did not increase anyone’s happiness.

At which all I could do was burst out laughing.  Because, well.  Duh. 

Only an academic would undertake a study like this, defining happiness as something along the lines of “satisfaction with life” and “feeling rewarded by your work.” If there’s an occupation more likely to make you feel incompetent and unrewarded than being a parent, I have never heard of it.

If you weren’t an academic, you might define happiness as the experience of being fully alive. To know grace, and despair, and the kind of hardness you have to learn to stand against; to watch your family fail you when you need them the most, and have your ex-husband look around, shrug his shoulders, and hold out his hand to help you up again.

Right.  Your ex-husband, so that you can learn a bit of gratitude, just enough to appreciate him, which you didn’t manage the first time around.

These are things you’d never know if you hadn’t had your daughter.  Things you wouldn’t have had to know, and learn the hard way, bitterly.

If the medical resident hadn’t sat down while you held your baby girl in the neonatal intensive care unit and said, “Your daughter’s brain is massively deformed.”

The daughter you loved even before she was born.  When she was an abstraction, a positive sign on a pregnancy test, before she kicked you in the ribs, long before she ever drew her first breath. Love you did not know you were capable of feeling, primal and angry and powerful, you would kill ten men and Satan if you had to.

But the universe doesn’t ask that from you. 

When your daughter is nine months old, a neurosurgeon will say to you, “We believe resecting the left side of her brain will help control the seizures.”

The seizures that she has all day, every day, dozens, hundreds; she was born with a massively deformed brain, what did you expect?

You think a minute, and you realize the doctor is saying they are going to take out half your daughter’s brain, and throw it away, so much trash, and you’re supposed to sign the consent form for this. 

And after the surgery, when the seizures come back, you will sit across the table from the man who is now your ex-husband, the man you adored, but life can kick the ass out of any romance, even yours, and you will order a very large glass of tequila, and you will say, “What the hell are we supposed to do now?”

And you hope the answer is going to be about slaying ten men and Satan, because you’re capable of that.  Yes.  Heroic action? You are totally down with that. But the answer is, you are going to go home and do the best you can to make a life out of what you’ve been given. 

And no one is going to give you any instructions, or any feedback, so no matter how well you’re doing, or how badly you’re screwing up, you won’t know either thing until maybe – maybe – at the end of your life, fifty years from now, you’ll be able to look back with some perspective and go, “Eh, should have done that differently.”

So you do the best you can.  You raise your daughter, and she is three years old before she learns to walk, seven years old before she learns to use a toilet, and mothers all around you are blathering their worry that their babies aren’t talking by twelve months, and you don’t even know what universe they live in, because in your universe, you had surgeons take out the left side of your daughter’s brain and throw it away.

You just got back from the hospital the fourth time or maybe the sixth time your daughter’s shunt has had to be revised – that is, yanked out and a new one put in because it stopped working, which means the pressure builds inside her skull, which could kill her – and the man (the man, you weren’t picking any goddamned boys this time, this time you found yourself a man) he says he’s not ready for someone like you. It’s just too intense.

What he means is he can’t deal with your daughter.  This is a story you will go through more agonizing times than you can count, with friends, with family, with work, with other men who don’t trust you when you say all you really want is to just get laid.  They will all say it differently, but you know why they’ve cut and run.  Hell, you would have, too.  If someone had told you ahead of time what was going to happen now?  Baby, you would have been on the next plane to Bolivia and fighting extradition every step of the way.

But they didn’t tell you ahead of time, and by the time you figured out that being her mother was going to make your life look like a nuclear bomb had detonated in the middle of it, it was too late, because she’s your daughter and you loved her even before she was born, so you’re a little biased and you can’t always see her clearly, and what you see is a high-spirited, ebullient girl with a stubborn streak, and other people see a slow-moving, cognitively-impaired kid who can’t be budged once she makes up her mind.

Well, screw them.

You say that a lot.  Screw them.

So, no, most times you’re not thinking about how happy this is making you. 

Sometimes, in fact, you’re thinking about how a long time ago, you were kind of a charming young woman who read a lot and married a nice guy, and you planned to go to Paris. 

And you never got there.

And somehow, maybe during the thirteenth hospital stay, or perhaps the fifteenth, your life had narrowed down to a few good things.  Your work, and your daughter.  Your three old friends, who knew you way back when you were kind of charming, and your three new friends, whom you refer to as the one who calls you “hard,” the one who calls you “contentious,” and the one who calls you “inflexible.”

Because it’s funny, and while they mean it, they don’t mind it, they even seem to admire it.  Your friends are warped, too.  Hey, it happens.

“You need to get some Mike’s hard lemonade,” your daughter says when you’re at the grocery store, because you once told her that you had one at your friend Diane’s house, and you liked it, and in your daughter’s world, if you do anything you like once, you must do it many many times, because that is wonderful.

People look at you funny when she points to the Mike’s, like you’re an alcoholic raising one, but you think screw them, and you buy the Mike’s and it stays in the fridge for three months before you throw it out, but it makes your daughter happy.

You would do anything to make your daughter happy.  To make her whole, and to promise her that she will never have to go to the hospital again, but despite all the effort and practice, you’re just not that good at lying.

When you bring her to the hospital for the eighteenth time, or maybe it’s the twentieth, and she says, “I want roses, like a princess.  Red ones,” you make sure she has them, even though it destroys your budget for the month.  Raising your daughter makes it impossible to also hold a steady job, so you freelance, despite the fact that you’re not really cut out for writing about things normal people are interested in.

And you find out, interestingly enough, that there are so many not-normal people in the world that you don’t ever have to write for the normal ones if you don’t want to.  Which is a huge relief.  It’s a club and the password requires an appreciation for dark humor, and you have to have been through gut-wrenching grief to get here, and you look at the people who don’t know, and you realize, for the first time, that you don’t want to be them: innocent, unknowing, unformed, unrealized, their lives entirely unlived.

You bring your daughter home from the hospital, and she says, “Next time I want carnations,” and you know there will be a next time, and it makes your heart hurt.

Still, you are so not ready when the next time comes.  It’s a mugger, and you’re not even walking after dark.

You’re at the hospital for another MRI, routine. You know all the rules by now, and the names of the nurses, and the questions they’re going to ask.  And you know the MRI is going to take one hour, ninety minutes tops, because it always has.

And you know from long experience that when something deviates from the norm, the news will not be good.  In the world you don’t get to live in, people get good news all the time, but not in the universe that made your daughter.

Three hours later, the nurse comes in and makes some remark about it taking a while to get the pictures, and you know she’s lying but you don’t push, because she’s not allowed to say, and she won’t.

So even though no one tells you that you should, you wait by the phone the next day, and the neurologist calls just like you knew he would, and he says, “There’s been an unexpected finding,” and even though you knew it would happen, it catches you in the gut and you sit down, hard, and you think I can’t stand it.

The sky has fallen down many times in your daughter’s short life, the sky with all the stars in it, and you have picked up the pieces more times than you can remember, and you have climbed the ladder and put them back in place, where you think they should go, and you get things in backwards and out of sequence, but you do the best you can, and you climb down off the ladder, and you’re at peace with your work.  You wish it could be better, but there’s only one of you, and the sky is so vast, it takes a while to put it back together again, and you did the best you could.

And you just went through all that work, and here is the goddamned sky scattered all over the carpet again. 

The neurologist describes the new problem, like having a massively deformed brain is not enough for one child to bear.  You process what he is saying: there’s a hole in your daughter’s spinal cord.  He calls it a channel, and he gives the medical name for it, so you can look it up on the computer and give yourself a heart attack, and then he says he would like a neurosurgeon to consult, and you say, sure, because what are you going to say?  I can’t do this anymore?

So you tell your daughter she has a hole in her spine, and she takes the news gracefully, the way she has taken everything you’ve ever told her about herself, you have a massively deformed brain, you have seizure disorder, there is no cure for your disease, and oh yes, your all-time favorite surgeons took out the left side of your brain when you were nine months old.  

There is one secret thing you never tell her.  You never tell her how afraid you are that this is the last time.  The last birthday.  The last kiss good night.  The last time you will ever sing the Mockingbird Song to her, the way you have done every night for thirteen years. 

You have never done anything for thirteen years before.

The neurosurgeon is a pleasant man, which is a change from the usual run of neurosurgeons, and he describes what sounds to you like a horrifyingly high-risk surgical procedure, and which he calls an intervention that he has performed before.  You don’t push him with questions like, How many times? Because you don’t want to know.  Because it will break your heart or terrify you, and you don’t have the stamina for that.  Not today.

He turns to the computer, calling up the MRI, and you focus on his hands, and you decide that he has competent hands, artist’s hands, and it’s a good thing, too, because you are trusting your daughter to those hands.

He wants you to look at the image on the computer, but the image makes you want to throw up, you don’t want to look at it, but the doctors always make you look.

And you see the place where they took out the left side of her brain and threw it away, and he shows you the hole in her spinal cord that goes on and on and on, tracing it the length of her spine, and you can’t stand it anymore, not even to be polite, so you stare at the floor, and you notice your sandal is scuffed and you wish you wish wish wish he hadn’t made you look, and you hope you can hold it together until he leaves, and you can bolt to the nearest bathroom and be sick.

He smiles kindly and schedules surgery for August 10th, which is too soon, much too soon because you can’t even conceive of what he is going to do, and it is going to take you a long time to wrap your mind around it, and it’s also too far away, much too far away, because you would like to sleep until it’s over, and there’s just no possibility that you can get away with staying in bed that long.

You look up at your daughter, and you see her face is stark white, and you know she is scared out of her mind, she has understood everything that has taken place here and it was so much easier when she was little, and she didn’t, and she would just smile at her hands and coo.

Her father is barking questions at the surgeon, agitated and pacing, and the surgeon answers him patiently, prefacing each response with the phrase, “That’s a good question,” along with a nod and a smile, like your ex-husband is a good student, while you sit there, a lump, bovine, you couldn’t form a question if it would save you from a firing squad.

You are trying to think of what to say to your daughter, and all you can think is I don’t want to lose you, baby girl, I don’t want to lose you I don’t want to lose you lose you lose you.

Which doesn’t seem particularly helpful.  So you shake hands with the doctor, and before the nurse starts asking all the questions on the H&P, you tell your daughter that the surgeon is going to try to keep the hole in her spine from getting worse, and that means some surgery, and maybe five days in the hospital.  And you must do a good job of not communicating your deep dread and fear, because she says, “Okay.  Will people bring me presents?”

Yes, you say.  Yes.  It will be required.  You hug her, and she says, “You have your stars on.”

Those are your earrings, and the very first time you wore them, your daughter exclaimed with delight, “Now we can wish upon a star every day!  Twice!”

And so you wish upon the stars, right there in the examining room, that you will live happily ever after, and have good work to do, the wishes you always wish, and then you’re ready to face the nurse, and to answer the questions she has, knowing how gut-wrenching it is to go over your daughter’s medical history with someone who doesn’t know her, knowing that your daughter will pepper you with as many questions as the nurse will.

At home, you try not to think about August 10th.  You know it will come too soon, and not soon enough.  You make a note to buy more crossword puzzles, because that is all you can do when your daughter is undergoing an intervention the surgeon has performed before, and you didn’t have the courage to ask him how many times.

At dusk, your daughter says, “Time for fireflies!”

And you know the drill, that you can’t watch the fireflies without a snack, so you ask if she would like ice cream or a cookie, and she says, “I would like ice cream and a cookie, and some Diet Coke, and I will want my princess figures, and I will get the door for you,” and you don’t even try to argue about the ice cream and the cookie, or suggest that milk would be better than Diet Coke. What if this is the last time you look at the fireflies together?  You don’t want to be the jackass who screws it up.

She gets the door, and you bring the cookies and the ice cream, and go back for the Diet Coke and the princess figures, and she settles onto the patio chair with a sigh of contentment.  And you look up at the stars in the sky, and you wish you knew something about astronomy, because then you could tell your daughter which one was the evening star, and you would tell her that that is the star to wish upon.  But you don’t know; they all look alike to you.  And maybe it’s better that the stars you wish upon are the ones you can see whenever you want to, wherever you are, even if it’s the intensive care unit on the fifth floor of the children’s hospital.

“I see a firefly!” she shouts.  “The first one tonight!  How many do you think there will be?”  Before you can answer, she says, “Where do fireflies live during the day?”

You admit you don’t know, and she says, “We will look it up on the computer tomorrow.” 

And you do, and you find out that fireflies are rapacious predators, but nothing shocks you anymore, not even that.  You don’t tell your daughter this finding.  And the calendar moves one day closer to August 10th, and the number of times you go into the bathroom to throw up increases by a factor of two

A long time ago you stopped raging at the universe for doing this to your daughter, and years before she was born, you stopped believing in a benevolent god, but right now you would like to hurl some curses at a supremely powerful being, to have the satisfaction of getting an answer back.  You would take on Satan and ten men, but no one asks you do to that.  No one has ever asked you to do that. 

They asked you to do this instead, this infinitely harder thing.  And you think about that study, and you laugh out loud again, and your daughter asks why you are laughing, and you say, “Sometimes, girlfriend, I can’t believe how badly people miss the point.”

“What does that mean?”

“It means I don’t care that I’ve never seen Paris.”

She’s accustomed to your moods, so she nods, and she turns on the radio. “It’s your favorite song!” she says.  “Isn’t that lucky?”

And you hug her hard, but she’s used to that, too, and she lets you, and even lets you sing along without complaining (“this time only, mom!”), and you are lucky, probably the luckiest woman living, and happier than you have ever been, but not in any way an academic would understand, or even conceive.  Your joy is bigger than the universe and contains all the sorrow of a lifetime, and has nothing whatsoever to do with feeling sufficiently rewarded for your work.


Many people have asked, so I have made For Jessica available as a paperback and as an ebook. Click here for the Amazon link (Kindle and paperback versions) . Other ebook options are available here. All proceeds go to support Jessica.



  1. Amazing. Knife in the heart amazing. Laugh out loud amazing. I will never be the same after reading this. This piece, like both you and Jess, is a gift to the world. I wish to God you didn't have any reason to write this. I wish you were that foolish academic who thinks that what he/she studies matters. But since you aren't, and this isn't that kind of world, all I can say is that you are a blessing, and Jess is lucky to have you.

  2. Thank you, Jennifer. I will be praying for you and waiting to hear good news on August 10.

  3. You are one of the most incredible human beings I know. I am totally in awe of your strength, your love and your amazing heart. Please know that you and Jessica are and always will be in our prayers and thoughts. I am honored to say that you are my friend.

  4. After wiping away my tears, I just had to write a comment to you, Jennifer. This is the moist poignant and beautifully written piece I have ever read. You are an infinitely loving and courageous mother. And Jessica sounds like the most delightful child. I will be thinking of both of you every day. I only wish I could be there to offer you the support and comfort you need.

  5. I am so very grateful to you for not only writing this post, but for doing it so beautifully. Every word and every emotion felt so real and so raw. I have a child with special needs and when I am feeling most sorry for myself, I remind myself that he is healthy. I don't have to worry about last birthdays or last good night songs – not that I know about anyway. So thank you too for a swift kick in the ass. I don't pray – if I did I would pray for both of you – but I do practice yoga and can tell you I will be dedicating my practice to you and your brave daughter.

  6. One of the most genuine pieces I have ever read. It touches me on many levels, personally, as I relate to some, and my thoughts are with the two of you; the real heroes of human kind.

  7. Jennifer,

    I am awed by your talent for telling it straight with no chaser.

    Love to you and Jessica, and when you are ready, email date and time and I'll fight the ten men and Satan with you and Jessica.

  8. My daughter was not born with a brain deformity or a seizure disorder. In fact, she's perfect, and I'm the one with the brain that doesn't work right. Interestingly though, I lover her just that much, and in largely the same way. Thank you.

  9. Jennifer, thank you for sharing this breathtaking piece. You moved and humbled the mother, writer, and friend in me. Holding you and Jessica close and sending you the light of a thousand fireflies.

  10. What a beautiful, heart-wrenching piece, deeply moving. May you and your daughter continue your valiant fight with love and courage. My prayers are with you.

  11. Your courage, strength and honesty brought tears to my eyes and you write beautifully. Thank you for sharing.

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  13. Didn't start tearing up till I started reading the responses to your words. I'm thinking of you now and will be thinking of you for quite some time–because of your words. So very powerful. Give a hard hug to Jessica from me, too.

  14. I barely could finish reading this. It's hard to see the screen through the tears. This is one of the most beautifully written essays I have ever read. I am a nurse and I have worked in a pediatric hospital filled with special needs children. This should be posted in every staff lounge to remind us of what parents really go through. Now I'm going to go hug by own children . . . . Thank you for sharing and I will keep you and your daughter in my prayers.

  15. Jennifer, that is such a gorgeous piece of writing about your daughter, your experience of parenthood – so wise and real and heartbreaking and beautiful. Thank you for sharing that with us.

  16. Thank you courageous mama. I pray that all the energy of so many women reading this and feeling their hearts swell will fuel you for the important work that you do each day. No researcher can measure what feelings are generated by being a mother. With gratitude, Lara.

  17. So beautiful. You're such a wonderful writer, and a great and courageous mom. I've been keeping you and Jess in my prayers and will keep doing that.

  18. You, your daughter and your essay are going to be swirling around my head for … probably ever. I’m not a religious person, but I will be hoping with all my being for the universe to send you and your daughter (and your ex) as much good energy as possible in the day, months and years to come. I initially sent the one word comment, “stunning,” because I was stunned, in every way possible: intellectually, spiritually and artistically. Finally, it occurs to me that if the universe is to send a person like your daughter to any mother in the world, it *must* be to a person like you. Because we mere mortals can barely comprehend your essay, let alone your reality.

  19. Your writing is clear and true, your feelings for your daughter deep and vast. I am overtaken by the beauty rawness of your post, and your family’s collective courage. Fight on.

  20. Thank you. Two of my boys are Special Needs. Not physical. Strangely, even though I don't have to worry about "the last day" the feelings are the same…. the wrenching worry, the bitterness at the universe, the overwhelming tenderness in the face of a child's innocent questions. I never had to worry about "the last day" but I have spent many years worrying about "the parting" and now, with my second son, its coming.

  21. Simply incredible: you, your daughter, and the road you've traveled. May you feel every wish and prayer sent your way on August 10–and may you feel them now.

  22. Thank you. My son has a life-shortening disorder as well as a neurological one, and this resonates so strongly with my experience. I admire your courage in sharing this.

  23. Thank you. From the wordless place that has been shaken by your words, thank you.

    Everyone is right. This is one of the most beautiful pieces of writing I have ever read. However, I know that happened because that was not your goal. Your generosity in sharing this urgency moves me deeply.

    If you feel comfortable doing so, would you share the name of the hospital so we can all send carnations to your daughter? I would very much like to make her happy in any way I can. And I know I'm not alone in this.

  24. I have to second what Cheryl said: Raw and beautiful. And if presents even from strangers would brighten your daughter’s days in August, please let us know where to send them.

  25. I am so glad I read this. Thank you so much for so beautifully sharing your journey as a mother. I will be thinking of you and your daughter and marvel at both of your strength.

  26. I'm not a mother–not yet, at least–and yet this piece cut me deep. I wish the best to you and your daughter on Aug. 10th. Thanks so much for sharing this beautiful piece.

  27. Carnations it is. What is her favorite color?
    I don't care what I have to do, Jessica will get carnations from me on August 10, even though 5 minutes ago I didn't know either of you, and even though it may seem weird to get carnations from a perfect stranger.
    I aspire to love my future kid(s) as hard as you love your daughter. And to be worthy of the kind of love she gives you back from them.

  28. Can’t say more than what others have posted. One of the most well-written, heartbreaking things I’ve read. I wish you didn’t have to write it.

  29. Jennifer
    WOW. So much love to you both.

    I was just remembering the HUGE box of baby gifts you and Jessica sent when Veronica was born. I hate to rip off old E.B. White, but you are both a great writer and a great friend.

  30. I know how amazing – and how odds-defying – both you and Jess are. As my daughters would say, here’s to kicking Aug. 10 in the face. As for your post, my goodness. I want to write like that when I grow up.

  31. What an extraordinary piece. Thank you.

    All the best to you and your sweet girl.

  32. This is amazing, and you are amazing, and your daughter is amazing, and you know all of that already. Thank you. And I'll be sending you all my best energy on August 10th.

  33. This. was……


    I've never been to your blog before but I have never seen anything more eloquently put in my life.

    wishing you extended TRUE happiness.


  34. My thoughts and prayers go out to you and your baby girl. Thank you for opening your heart and sharing such a deeply personal story with us. As a mother, I know that the love we have for our children is immeasurable. I hope everything goes well with the surgery; stay strong.

  35. You're amazing, Jennifer. This piece humbles me. I will be among the many thinking of you and your daughter, and standing invisibly beside you in your fight. I'd also like to send Jess a little present if you'll let me know an address.

  36. thank you so much for sharing this window into your heart, into your world with others. true bravery is getting up every day and doing what needs to be done. you are an extraordinary woman and i wish you and your amazing daughter love and light and luck.

  37. (Came to your post via a friend)…

    Your daughter sounds positively magical. You will be in my heart on Aug 10th.

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  39. What a beautifully told story, Jennifer. Your baby girl is lucky to have you – and you, her. My heart aches that you have to face yet another surgery. I will hold you in my thoughts on August 10.

  40. Amazing. The writing, your daughter, you. Amazing. Thank you. By sharing that, you have helped me become a better parent today. Will be thinking of you on the 10th.

  41. I don't know you and your daughter, but after reading this, I will think of you both often and wish with all my heart for your family's good health.

  42. Thank you for sharing this raw, gut-wrenching beauty.

    Of course I don’t know you and Jessica apart from this essay, found through a Twitter link, but you’ll be in my heart on August 10.

  43. You and your daughter and your ex-husband are stars that will never fall from the sky, Jennifer. I'm so glad Gwen posted this link on Facebook. May the not-always-seeming beneficent God bless you all. I will be thinking of you on August 10. How fitting that crosswords comfort you at times like this, because you are incredibly gifted with words. I look forward to reading so much more of your work. You are amazing.

  44. Jesus. Don’t know what to say, Jennifer, except that I thank you for sharing your story and I’ll be thinking about both you and Jessica on August 10th.

  45. Well, that sold me on your novel, and every single thing you write from now on.

    What a gift that you and your girl have each other, and that you also have this incredible gift of writing, so you may share your love with the world.

    Best wishes

  46. Amazing. Your daughter is blessed to have you- just as you see how blessed you are to have her. Thank you. I am humbled by this.

  47. Jennifer, this is an amazing, amazing piece of writing. The best I’ve read in a long time. I’ve read the study, and I’ve never had children. But you say here what a study and a bunch of numbers and facts can never state: Love, pure and simple. I will be keep you in my thoughts and prayers.

  48. This post was heartbreaking and beautiful. Thank you for sharing such a deeply personal and wrenching story.

  49. God bless you both. An amazing piece of writing, based on an amazing life full of the kind of courage that finds you when you need it most.

  50. Wow. I’m so moved by this essay. I’m crying as I read of your daughter and think of my brother. A beautiful child with more troubles than science and medicine could overcome. How hard it was. And how beautiful life with that sweet boy. How different it makes you. I’m not the praying kind, but there just doesn’t seem to be a better way to say that I will be thinking of you and she on August 10 and hoping.

  51. Thanks Jennifer, for this wonderful piece. It's so recognizable, even though my son 'just' has Down's syndrome and all of his brain's still in there. I'm like your ex-husband, good at asking questions and getting informed, but sometimes I wish I could just throw up and get it out of my system. But I know it doesn't work that way, so I ask questions while my ex-wife looks at her shoes.
    I read this at work, hiding from my colleagues behind the closet when I couldn't take it anymore; blowing my nose in whatever's at hand (coveralls) and praying that nobody comes in and tells me "it's going to be allright" because it isn't. But it's OK that it's not allright, because it's what the universe has dealt you, and there's no other way.
    Take care, with love from the Netherlands

  52. My thoughts, hope and prayers will be with you and your fantastic little girl on August the 10th. I hope she gets more carnations than she can count.
    God Bless you both, and good luck xxx

  53. Kelly Enger shared your essay on her fb page. How beautiful and moving. My prayers are with you now, and for all the challenges you face ahead. I'm a mom of a special needs child, and I've always found this essay–written by a parent of a Down's Syndrome child, comforting.
    By Emily Perl Kingsley
    I am often asked to describe the experience of raising a child with a disability – to try to help people who have not shared that unique experience to understand it, to imagine how it would feel. It's like this……

    When you're going to have a baby, it's like planning a fabulous vacation trip – to Italy. You buy a bunch of guide books and make your wonderful plans. The Coliseum. The Michelangelo David. The gondolas in Venice. You may learn some handy phrases in Italian. It's all very exciting.

    After months of eager anticipation, the day finally arrives. You pack your bags and off you go. Several hours later, the plane lands. The stewardess comes in and says, "Welcome to Holland."

    "Holland?!?" you say. "What do you mean Holland?? I signed up for Italy! I'm supposed to be in Italy. All my life I've dreamed of going to Italy."

    But there's been a change in the flight plan. They've landed in Holland and there you must stay.

    The important thing is that they haven't taken you to a horrible, disgusting, filthy place, full of pestilence, famine and disease. It's just a different place.

    So you must go out and buy new guide books. And you must learn a whole new language. And you will meet a whole new group of people you would never have met.

    It's just a different place. It's slower-paced than Italy, less flashy than Italy. But after you've been there for a while and you catch your breath, you look around…. and you begin to notice that Holland has windmills….and Holland has tulips. Holland even has Rembrandts.

    But everyone you know is busy coming and going from Italy… and they're all bragging about what a wonderful time they had there. And for the rest of your life, you will say "Yes, that's where I was supposed to go. That's what I had planned."

    And the pain of that will never, ever, ever, ever go away… because the loss of that dream is a very very significant loss.

    But… if you spend your life mourning the fact that you didn't get to Italy, you may never be free to enjoy the very special, the very lovely things … about Holland.

  54. Thank you for sharing, you are your daughter's precious gift and she is yours.
    Wishing on two stars for you both on August 10th

  55. This is amazing. AMAZING. I'm blown away.

    I'm so glad someone pointed me to this blog.

    I'll be thinking of you both on August 10th, and every day between.

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  57. Thank you, Jennifer, for writing this. Beautiful writing. And it sounds like your daughter is a beautiful person.

  58. Would you email me to let me know where to send some carnations? I remember all too well what it was like to wake up in a hospital and if this will make her happy, she should be surrounded by carnations!!

    This was a beautiful post, thank you so much for sharing!!

  59. I don't know you and I rarely leave messages on strangers blogs but please know my kids and I will be spending a moment sending love and good wishes to you and your family August 10th.

  60. Thank you for this. Thank you thank you thank you.

    My little brother has severe CP from an allergic reaction to his DPT vaccination when he was 8 weeks old. I don't know how many hundreds of hours I've spent in the hospital. Many fewer than my heroic mother. So I know some of what you speak of.

    Thank you for showing the world the person-hood of people like your daughter and my brother. Thank you for your honesty and vulnerability. Thank you for your love, which can reach out through ones and zeroes and touch strangers who have never met you and probably never will. And I know you want to take a big heroic action, slaying 10 men and Satan, but I think that writing this and sharing it IS a heroic action, and I want you to know I recognize it as such.

    I will be thinking of you and your daughter and your ex on August 10th.

  61. Since I got here from a link and don't know you, it seems inappropriate to say anything but thank you.

    But yes. Thank you. Very much.

  62. Jennifer, thank you. Thank you for sharing your pain and your joy, and for putting things back into persepective for another not-normal parent out there. I cannot tell you how much I needed to read your words just now, so thank you, thank you, thank you. I'll be thinking of you and Jessica on August 10th.

  63. Jennifer, Thanks for sharing this. No words–I'm overwhelmed. But it will stay with me and my thoughts and heart will be with you and your daughter on the 10th.

  64. I don't know what else I can add here but you have me crying in my chair. This was clearly the most beautiful tribute I have ever read. Thank you for sharing your story with the world and best of luck to you next month.

  65. My thoughts, my wishes, my everything I have is coming your way. This post touched some very fragile places in my soul. Know that you will have many, many people joining you in spirit in the waiting room on August 10. I'll bring the crossword puzzles.

  66. I often wonder how mothers handle these life events. As your friends have said to you, be who you are and be there as you have been. Good luck in August and I will be thinking of you. You and your daughter are very couragous and loving.

  67. I barely know what to say after reading this. Thank you for sharing your story with the world, and and….there is nothing I can say that won't sound trite, or stupid, so I will send you virtual hugs.

  68. I'm with Johanna – and I'll send it from Germany. Give me details.

    What a brilliant post. I have everything crossed and am hoping for the best for you and your darling daughter.

  69. Man, but that was an awesome piece of writing.

    I'm struggling with the lump in my throat but I wanted to thank you for that perspective.

  70. This is an amazingly moving story. Much love and luck and stars coming into alignment for you. I will hold you in my heart and your story will be carried with me everywhere.

  71. This is my story as well right down to staring at my shoes so I don't have to listen anymore. And I thought I was the only person in the world that felt that had their heart ripped out every time I have to retell my daughter's history. I am so sorry you both have to go through this. How are these kids so strong? I really hope that all goes well for her and for you.

  72. My thoughts and prayers will be with you and your daughter up to and beyond the 10 of August.

  73. Wow. I could spend days trying to find the words to say how beautiful this is. And what a beautiful person you are.

    Best of luck on August 10th. I think a great many people will be sending good thoughts your daughter's way.

  74. So beautiful.
    Just leaves me grasping for words.

    My thoughts and prayers will be with you both on August 10th.

  75. Thank you for sharing. You are right, no academic can understand parenting. You and your daughter and your ex-husband will be in my thoughts and prayers on August 10th. I am noting it on my calendar now.

  76. Heart wrenchingly beautiful. I will be thinking of all of you on the 10th. Much peace and strength to you.

  77. What a beautiful and terrible piece. Life slapped us the first time in 1969 when our 3-year-old son was diagnosed with his first malignant brain tumor. Now it's 2010 – 41 years later – and he is waiting for a lung transplant. He has pulmonary fibrosis caused by the chemotherapy (and possibly the radiation therapy) that cured his cancer. Forty years ago the minister said we had received a miracle. I no longer believe in miracles. I wish you all the strength needed to deal with this.

  78. Thank you! you have done so much to talk about the pain and joys of parenting. Thank you for being so aware, thank you for being so honest. thank goodness you have a sense of humor.

  79. Your writing is amazing, and your story is one that I am living as well. Different scenarios, same emotions. I wish your daughter well in her surgery. And I wish you strength to get through that time in the waiting room with your crossword puzzles. I ALWAYS have those with me in the hospital! It's the one thing you can sit and do mindlessly. If you get interupted, it's not like reading a book where you have to try to find your place again. You just go back to thinking of stupid words that have nothing to do with your life but fill the space in your mind!

  80. Jennifer:

    An essay I will read and re-read and send on for others to read, over and over.
    Thank you for sharing your pain and putting our life in perspective for us.
    I'll be praying for your family on August 10th.

  81. This was possibly the most beautiful, inspiring thing I have ever read. You are an amazing mother. I will be thinking of you and your daughter over the next couple weeks.

  82. Does it help at all to know that so many people are holding you and your daughter and her father in their hearts? Because we are.

  83. got here through a link on Ted Rose's fb page. Thank you for your beautiful post and sharing your story and incredible writing prowess. I will be praying for you on August 10th, putting it into my calendar now. Chin up to heaven (whatever that may be).

  84. (Hope I'm not double replying, my first reply isn't showing up)

    This was a beautifully written entry. The emotions are so raw and truthful. I can relate to all of it, even though my daughter's circumstances are a little bit different. They are the same at heart though. I can absolutely relate to looking at my shoes while the doctor is talking, in order to tune it out. It's so hard to be Mom sometimes, yet the best thing in the world.

    I will be thinking of your daughter on the 10th!

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  86. My prayers are with your daughter and yourself and the pleasant surgeon and the hospital staff.
    Yes, slaying 10 men and satan would be easier. Once upon a time, I went hand to hand with 2 armed bank robbers that invaded my home (they needed a different get away car, the cops knew the one they were in) and threatend my infant son. I won. Now, I look back and see how easy that was compared to raising two kids that are both on the autism spectrum.
    May everyday bring happiness and joy to you and your daughter.

  87. Get out and see Paris with your daughter. You're both worth it, it's worth it, more people need to see more of the world. Beautiful story on being a parent, thanks = )

  88. I once heard someone say having a child is like having a piece of your heart crawling around outside your body. I complete understand what your so beautiful expressed. Also Jessica deserves LOTS of presents- where can we send them?

  89. Thank you for sharing your story…beautifully told. You will have many people praying for you on August 10th.

  90. Beautiful writing and thank you for sharing. I will be saying prayers for you and wishing on many starts that August 10th comes and goes with success and you and your daughter can have many more nights of watching Fireflies.

  91. I have had two children, one healthy and one not so healthy. I lost one to death and one to hatred. Not sure which hurts worse. The thought of losing a child, even an adult child, just does not occur most of us. We are usually just caught up in the day to day struggle to survive. Sometimes you just need to read a story about another person situation to put things in perspective. Thank you for doing this!

  92. Gut-wrenching perspective.

    I have experience with sitting by the hospital bed or in the waiting room or driving back and forth for appts. not for my own children (which I know would be that much harder) but for my sister in law when she was a teen She lived with me while going through treatment. I have tasted that fear, been through those drills. I know the hell, and the small joys, and the fear, and the love.

    I will be thinking of you and your daughter Aug. 10th and everyday until then. May the surgeons hands be skilled and your daughter strong. Much love to you and your family.

  93. I wound up here through a friend of a friend of a friend… but what an amazing story, told by an amazing writer. I have a long history working with children and adults with disabilities and find your strength, as well as your daughter's, inspiring. Bless you both, and your ex-husband as well. My family and I will be praying for all of you.

  94. I was so touched by your story that I had to write. My third beautiful little girl is due Aug. 11. I have been blessed with two healthy children, and amid the fear of another labor, delivery and "the unknown," I can only imagine the roller coaster of emotions that you and your family are going through. May God bless you — everyone you touch in the next three weeks, from the doctors to your family to that special little girl. God keep her as she safely makes it through this journey.

  95. Thank you for sharing your story. Will be sending positive thoughts your way for the 10th.

  96. i don't know how you found the courage to write that but I have a huge amount of respect for you. My thoughts are with you and your daughter.

  97. Wow –
    that was beautifully written. that is a loved little girl and I sure she feels that everyday. That is the real work of being a mom, and you seem to be fantastic at that.
    I will be thinking of you and Jessica on the 10th.

  98. Thank you for this beautiful piece. It touched me in so many ways and I am so grateful you took the time to share this. This resonates on so many levels and puts so many things about my own life and children in perspective. My most heartfelt gratitude and all the prayers in the world for you and your amazing daughter.

  99. You broke my heart this morning. This is the most beautiful post I have ever read. The honesty, the pain, the love…. I am just totally floored. Makes me feel like a lightweight (and I blog about Autism and my dying/dead father). August 10th is my birthday and a big one, and I am taking all my birthday magic and passing it on to you and your daughter. I will be thinking of you that day. Know that many, many hearts will be joined with yours as you wait the dreadful wait at the hospital. You have the courage of a lioness. Thank you for sharing so much with us.

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  101. So many of us who have read this will be right there with you in thought and prayer on August 10th. You have touched so many of us with your amazing story …..thank you.

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  103. I am in some kind of awe, having read your of your experience. I could tell you how much I admire your writing style, but that's nothing compared to the rock of strength you have at your core. I could tell you how much I appreciate your courage in sharing your story and your voice, but only because I can't get my mind around the intense and beautiful and heart-breaking and inspiring and gut-wrenching joy-agony of your life.

    But even though I really don't know what to say, I know I have to say something. I need to let you know that this pair of eyes took in your story, even if my brain and my mouth and my fingers don't quite know how to offer something even remotely commensurate in response.

  104. Thank you so much for sharing your incredibly painful, but joy filled journey with us. You are an inspiration to find the joy and love even in a world that has had the normalcy "nuked" out of it. May you find peace and comfort in the upcoming weeks and as Aug. 10th approaches, may you simply be held in the great hands of God, even if he isn't real to you anymore, which I can totally understand. Praying for you and your sweet daughter.

  105. Ok. There's every possibility you will not pay any attention to what I say here, but I will print it anyway.

    First, let me tell you we lost two children shortly after their births, and I am sitting here crying now because it is something I will never get over, no matter what anyone thinks or says I should do. So I empathize totally with your darling daughter who has been given this horrendous rock to carry. Oh, should I say you, because you're the one it's trying to crush? Whoever. It doesn't really matter.

    What I want you to know, desperately pray you listen closely to and not toss out like yesterday's trash, is, there are people in this country who have been given the great blessing of healing illnesses. Diseases. Arms. Legs. And I'm sure, in the case of your daughter, brains.

    Yes, it's true. A man by the name of Sid Roth interviews them on tv all the time. Kevin Dedmon. Joan Hunter. Gary Oates. You can look him up on the internet and read the transcripts. For some reason, they have become conduits for the great healing power of our Lord and Saviour. Your daughter can be healed by them.

    Will you give your daughter a chance? Find a healer who appeals to you. Go to him. And ask for her healing.

    There is nothing God loves so much as the unbending faith of a mother.

    May God hold you all in the palm of his hand. Amen

  106. The strange thing for me about being a mother is that I feel bonded to other mothers' experiences even when I don't have first-hand experience of the specifics. Do you know the Ellen Bass poem The Human Line? Your words reminded me of her.

  107. Thank you for writing this. My heart breaks in the reading of it, imagining such a difficult path, and yet you leave us with more courage than we ever had before knowing this woman you've written about. Thank you.

  108. Jennifer, I will be the lone dissenter in this lovefest. While I respect your strength and experience, I found the tone of your article passive-aggressive and condescending. You seem to imply that the childfree can't possibly have learned the wisdom and courage that you have gleaned from your experiences with your daughter. You don't appear to acknowledge that childfree adults may have had their own serious challenges, such as surviving sexual abuse, poverty, having MS, or the aftermath of Hurricane Katrina.

    Also, there are plenty of parents with special-needs children who don't gain the insight you have: some avoid the issue by drinking, abandoning the entire family or abusing a different child. Every now and then PBS shows a play called Keeping Tom Nice, written by a social worker who worked with families with disabled children. It's a very bleak look into how some of the families with special-needs members turn out, and very well done.

    Best of luck to you and Jessica.

  109. I have heard the saying, "He never said it would be easy but He did say it would be worth it". You proved that.

    Thank You!

  110. Jennifer,
    What a beautiful piece of writing. What an incredible mom you are. what an amazing daughter you have.

    You both are in my thoughts and prayers for Aug 10.

  111. This is beautiful. A strong bond between mother and daughter was formed the day your daughter was just a positive sign on a pregnancy test. I have two beautiful daughters, Angela and Michelle and we are very close to each other. Michelle has two daughters of her own and Angela will be having a little girl of her own soon. There is nothing more beautiful than the bond between mothers and daughters. I will be praying and thinking good thoughts for you and your daughter always. g~

  112. Jennifer, Your courage and perseverance remind us all what parenting is really about and what joy and happiness really should mean. You and Jessica are in my thoughts and prayers.

  113. You have an intense amount of comments here, deservedly so, and if there's any way for us to be able to send flowers or presents to your daughter next time she's in the hospital (or maybe the time after that, or the time after that), please let us know. Even if it's just a paypal account where we can give you money to buy those things for her, we want to join you in bearing this beautiful burden.

  114. Thank you for writing this. You daughter is going to be fine. I will chant for you and her, am a buddhist and I chant "Nam Myoho Renge Kyo". You and your daughter will be happy together. I applaud you courage !! You are a wonderful mom, your daughter is very lucky to have a mom like you !!

  115. I was widowed after nearly 15 years of marriage to a type I diabetic who passed away at the age of 36 of massive, systemic complications related to being diagnosed in the late 60's (that did not have very good tools outside of insulin by injection).

    It took five years to kill him once events were set in motion, but so much of this story speaks to me, line by line, it's uncanny.

    No, you don't want to lose them. THEY HAVEN'T HAD THEIR SHOT YET. That's what you work for, that's what all the work is for – can it get better? Can they have anything close to what everyone walking around gets just for breathing room air? So you go to the doctors, you walk the walks, work the regimes…because while there is life, there is a chance for things to improve.

    And you love them, God knows you do. The only difference is that I walked into that marriage knowing I would survive him and I would have these challenges before that happened. It'll be 12 years this year he's been gone, and I take him with me every day.

    But damn if we didn't have those fifteen years – and God knows we worked hard for them.

  116. I will keep you on my heart not just on Aug 10, but every day. Thank you for this beautifully written post and for the gift of perspective.

  117. Jennifer,
    You and Jessica are quite the team.
    Therein lies the power. Thank you
    for sharing your courageous story
    of love. I will be with you August 10.

  118. I do not know, or, perhaps we met at one of Michele's functions. But none of that matters. What matters is how you have made everyone reading this take a second look at our lives. To stop complaining and enjoy our children for they are, a precious gift. In life, we are not all dealt a good hand (that I know personally), but we need to play the hand we are dealt, just as you are doing. I am thankful that you wrote of your vulnerability because it may help someone reading this. It was as honest as anyone could possibly write and I thank you. I will keep you, Jessica, and your ex in my thoughts and prayers, not just on the 10th of August, but always.

  119. Jennifer,
    I don't know you, but I wanted to say that I was extremely moved by your piece, and it taught me something important. I don't have words that are more appropriate than "I wish you the best"–which are not the right words–for this very difficult day of August 10th, but I want you to know that my support is with you–like an invisible star during the day that is really there.

  120. Jennifer,

    This is beautiful, and I'd like to ask if you'd be willing to let me repost it on the blog for the California National Organization for Women, under your name, of course, and with a link back here.

    I was working on trying to respond to that article you mentioned at the beginning, but this is better than anything I could have written.

    – Elena Perez

  121. Thank you for writing this. I will be back to find out more and will be praying for you on the 10th. This piece was incredibly moving and made me realize how very lucky I am.

  122. Thank you for sharing your story. Such an emotional, powerful, uplifting story and beautifully written. I will be thinking of you on August 10th and the days leading up to it. I will hug my daughter extra tight tonight. Peace and prayers with you.

  123. Jennifer,
    There are many whispers to be heard upon, our own personal rail cars…. You have obviously been blessed with the voices of many passing angles. Keep listening. Susan

  124. You and your family will forever be in our daily prayers. Thank you taking the time to share you story. With my family's very best wishes and God's Blessings…Peace

  125. Thank you for your courageous heart, Jennifer. I will also be sending you prayers (the Buddhist kind – I chant nam-myoho-renge-kyo) on August 10th.

    Really struggling for words after reading such a powerful, eloquent speech. But thank you for sharing the incredible love of your mother-daughter bond with us. Our lives are richer for it.

  126. Gracias…(perdón pero me siento sin capacidad para expresarme en Inglés)….Tu hija es un Maestro sin lugar a dudas,nació para darnos una lección de vida! Tu hija es un ser muy evolucionado que ha venido a esta Tierra a ayudarte a tí, a los médicos, científicos, y ahora también a nosotros a travez de tu publicación. Simplemente 'gracias' por compartir esta gran experiencia de vida la cual es toda una enseñanza para la humanidad! Estaré desde luego con ustedes desde ya, y más aún el 10 de agosto próximo; sin buscar un 'POR qué?', sino siempre pensando en el 'PARA qué?'. Gracias por tanto AMOR!!!!

  127. Gracias…(perdón pero me siento sin capacidad para expresarme en Inglés)….Tu hija es un Maestro sin lugar a dudas,nació para darnos una lección de vida! Tu hija es un ser muy evolucionado que ha venido a esta Tierra a ayudarte a tí, a los médicos, científicos, y ahora también a nosotros a travez de tu publicación. Simplemente 'gracias' por compartir esta gran experiencia de vida la cual es toda una enseñanza para la humanidad! Estaré desde luego con ustedes desde ya, y más aún el 10 de agosto próximo; sin buscar un 'POR qué?', sino siempre pensando en el 'PARA qué?'. Gracias por tanto AMOR!!!!

  128. I felt compelled to translate Marta's message:

    "Thank you (sorry I lack the capacity to express myself in English)…Your daughter is a TEACHER without a doubt, she was born to teach us a life lesson! You daughter is an advanced being who has been put in Earth to help you, the doctors, the scientists and now also to help us through your post. Simply 'Thank You' for sharing this life experience which is a whole lesson for humanity! I will of course be with you from now on and specially next August 10th; without searching for a WHY? but rather always thinking WHAT FOR? Thanks for so much LOVE!!!!

  129. Thank you for writing this. My heart breaks in the reading of it, imagining such a difficult path, and yet you leave us with more courage than we ever had before knowing this woman you’ve written about. Thank you.

  130. I don’t feel I have any words to help right now, but thank you. Hugs to you and your daughter, and the black-humored friends and the ex who get it.

  131. What a lovely piece of writing. I hope it helped your heart to get some of that grief and fear out. Thinking of you and Jessica!

  132. Words will never express how your "story" made me feel. Life is not fair, motherhood is hard…….with healthy children…..
    I am the mother of an angel, and you would have thought my lesson was learned for life…..But after reading this- I feel I take my life for granted. My children for granted. Their health for granted. I lost one son when he was 2.5 mths old- you'd think I would never take another day with the children that ARE here with me, and perfectly healthy for granted….Guilty as charged. My heart aches for all the weight on your shoulders, but it also feels an emense amount of Joy for the love you provide your daughter with. Cudos to you….It is a long road, a torturous journey….May you find it in your everyday, to get up and do it all over again tomorrow. Sending prayers your way for the 10th of August, and everyday after that. OH and last thought, for the idiots that comments on this post that are not positive, or productive piss on them…they will NEVER know THIS journey in YOUR life, how dare they judge you…..

  133. Very powerful. Beautiful and thoughtful – thank you so much for sharing. I know my life is much richer for reading your story. All my best wishes for you and your amazing daughter. I'm going to go hug my only daughter now too.

  134. Thanks for this.

    You talked about gut wrenching stuff you have actually experienced.
    But the connection you have with your daughter, and dedication you have demonstrated, the meaning you have found in this phase of your life, all made me feel jealous.

    You sure are happier than me, and I am a happy man overall.
    I hope that was your point. Best wishes for Jessica for the 10th and beyond…

  135. Jennifer,
    Thank you.
    I have started, erased, typed again, backspaced, and am trying once more. Not because its hard in any way, but that whatever I write here, is not enough. What you have shared though, is.
    You've given all of us who have read this a gift. Thank you.
    We will keep you and your daughter in our hearts and look for the best outcome for her on the 10th. Thank you sharing yourself and your daughter with all of us who read this.

  136. Jennifer — So in all these years, I have wondered how you bear all of this, and have watched in amazement at your strength. Thank you for pouring all of this out and sharing so many facets of your journey. It is a true gift to the rest of us, and much appreciated, a real treasure to have such a gifted writer put this experience into words. All the best possible to you, Jessica, Bret, and all the rest who will be helping and loving her in the coming days, weeks, months and beyond!

  137. I'm in the club…I know. My daughter is 15.
    Wonderfully written, some of the best turns of phrase I've ever seen captured. I must thank my friend for forwarding it it me. Best of luck, and skill, and coping mechanisms, and whatever it takes to get you to and through August 10th. Take care, and thank you for sharing.

  138. It is one heck of a roller coaster we're all on. I've had my days as a right hemi mom where I want to lash out….that's when I turn to my daughter and love her even more. I can't tell you it will be better, because I know about hemis, and other medical stuff for my other children, but I do know that it will settle down. The darkest night I ever had was alone with my daughter sleeping in an inpatient rehab hospital after the right half of her brain was thrown away. Now, when I'm so angry at absolutely everything around my daughter I remember that nothing was ever so dark as that night where I cursed everything and sobbed for hours, overwhelmed with everything while a tiny, brave little girl fought like hell to get better.

    Remember Bradley who had a hemi and then faced leukemia, remember Srikar who didn't make it, remember Avery who fights even though she has had 4 surgeries on her amazing brain. Think about Meghan who is having her redo soon, and Jessie who faces a lot of unknowns, and all the others on the ride. Remember us other hemi moms and lean on us….HARD….and we will be there for you, because as sympathetic as others have been we have been THERE, and we continue the kick the ass of any obstacle in our children's way. I am the mother bear of ALL mother bears, and I have your back.

  139. Thank you for sharing your gift of writing, your story and your beautiful daughter with the world. And thank you for your honesty about your parenting experience. I say screw the academics too. I can't imagine my life without my boys even when its tough. I will be thinking of your family on August 10 and beyond.{{{big hugs}}}

  140. May God hold you and your precious daughter in the palm of His hand and let the healing power of Jesus Christ bring an everlasting healing to you both. God Loves You.

  141. That was beautifully written…I will be thinking of you and your daughter on August 10! My son also had the hemispherectomy and had 16 surgeries and will be having 6 surgeries on October 27 so I could feel everything you were writing. Very touching!

  142. corageous and beautiful, you are an incredible inspiration as to the strength, power and passion of a mother. happiness IS the way our hearts explode each time our children look a certain way or do a certain thing, and being a parent is the utmost, crazy and incredible experience. not one that anyone could ever explain in words- however our children understand it in the arms of their mother. our thoughts and love are with you and your sweet daughter, and how we wish many more summers of fireflies for you both.

  143. Thank you for sharing your beautiful story of a life you have made beautiful with your courage and love. Good luck on the 10th!

  144. Your writing speaks from the heart and your words are hard and powerful to read. My brother sent me a link to this post because I have been struggling with my own children's situation. I had twins in January and one of them had an undiagnosed heart condition. We fought with him for 11 days before it became too much for him and I had to say yes, let him go. Stop breathing for him and I'll hold him while he leaves me. Despite being an intensely traumatic experience those days were the most magical of my life. My son was beautiful and taught us love. I wouldn't give those 11 days back for anything. I would also fight Satan and ten men.

    Your post was so difficult to read but I hope you believe me when I say I understand that love and how hard it is to sign those forms. I will think of you on the 10th and hope that your little miracle stays strong.

    Ignore Cho who is rather ignorant through no fault of his/her own. You always get one like that!

  145. I'll be thinking about this intensely beautiful essay for a long time. And also this: here is the goddamned sky scattered all over the carpet again.
    My best thoughts to you and your daughter.

  146. Beautifully written and 100% understood as the mom of a significantly disabled 4 year old daughter. Thanks for putting your heart into words.

  147. I was very recently introduced to an article entitled "WELCOME TO HOLLAND" by Emily Perl Kingsley, which is a concise and clear explanation of how one woman has come to view her life with a special-needs child.

    "Welcome to Holland" was also a wonderful prep course for your much-richer and more emotionally exhausting article. Thank you for sharing your plight and for showing us your ability to find and appreciate blessing amid and within hardship.

    You are an inspiration, and along with your daughter, will be deep in my thoughts up to and beyond August 10th.


  148. My grandson had a hemispherectomy done when he was four months, cutting ties from his left side of the brain. He just turned two and so far has had no seizures. We wouldn't trade our grandson for anything. He completes our family, and makes us realize how lucky we are to have him in our lives. We can't foresee the future and must take a day at a time.
    I will be thinking of you on Aug 10th, God Bless you and your daughter.

  149. Your an amazing Mother. Be good to yourself.
    Thinking of you and your baby on the 10th.

  150. As a mom, I've never been touched more than by your post. As I was reading, I was with you all the way, the journey, amazing. Thank you for baring your soul, your heart, and your story.

  151. I don't know what to say.

    This was incredible… incredibly written, incredibly touching, incredibly difficult to read. I was practically forced to read this, because it was so sad, but after I finished the first paragraph, I knew I couldn't stop. I felt like I would be abandoning you and your daughter by stopping.

    I'm not a mother, but when I do become one, I can only hope to have the same strength as you do… though I don't know how anybody else's strength could compare to yours.

    You're incredible. I admire you. Please keep fighting, and my thoughts and hopes are with you and your daughter.

  152. our thoughts and prayers will be with you and your daughter august 10. hang in there, there will be light in this long and dark tunnel

  153. Thank you for sharing. Beautifully written and honest. You get to the heart of all parenthood – isn't loving our children wonderful and scary?

  154. Wow. What a read. You are so blessed and Jessica is so blessed. Now we are all blessed to have our lives enriched by reading your unforgettable words. Forget the academic…he’s wrong. Love is invaluable as children. Bless you extra special.

  155. This was so touching. It hurt me to read it; yet I couldn't stop. I'm a mother of three, and I know what it's like to love a child the way you love yours. It's the most powerful thing I've ever felt. However, I've never gone through what you have. I admire you and your strength. I will be praying for you and your daughter.

    Thank you for sharing your story.

  156. u are amazing … ur daughter must have inherited that from you. the both of you are in my prayers. i too will wish upon a star

  157. Beautiful and heartbreaking. Saying a prayer and wishing you and your daughter all the best. Peace and strength.

  158. Pingback: Little by Little » Blog Archive » Almost Home
  159. Thank you for sharing this. I know that feeling in the pit of your stomach, the clench of your heart, and how your brain locks up when the doctor says what you don't want to hear. And then you just put your head down and keep going. Good luck to all of you.

  160. You are an amazing person and (if it even matters here) an amazing writer. I recently lost two close members of my family and my job, but I am both lifted and deflated for you after reading your story. I know you stopped believing in God, but why not hurl some faith out there, what can it hurt? I know.. I'll do some praying for you. And remember- cursing is always OK. You are a very special person.

  161. Your strength and courage are amazing. Thank you for piercing my heart with your words. I will be praying for you on Aug. 10.

  162. As a mother of a child born with six heart defects, I can relate to everything you wrote. The ex-husband, the pieces of crap after the husband, the countless open heart operations. The not getting better. The wishing that you could take on ten men. Thank you, nobody has ever wrote how I feel before.

  163. Jennifer, your writing is incredible and powerful. We will be thinking of you and Jessica on Aug 10. I hope the surgery goes in the best possible way.

  164. You’re a powerful writer. I felt all your emotions. I’m going to make my daughters read this so they can appreciate their healthy children who at worst, get pink eye or throw a temper tantrum. Parenting is difficult, and you dear lady, have more than your share.

  165. As a mother of a medically fragile, special needs child, THANK YOU. Thank you for putting into words all the feelings and thoughts that I have thought and felt over the years. I've linked your blog to my FB so others can understand a bit of what it is like from the mom side. You know the one question I always hate? "I don't know how you do it?" Like we have a choice :/ I will be thinking about Jessica on Aug. 10.

  166. What a true gift you are to your precious daughter and to those of us out in the blogosphere.

    As the mom of a 24-weeker (now nearly 14), I can relate to feeling amused yet angry by the thoughtless comments of other parents, worrying about such insane things such as the ages their children will walk, talk, eat solid food, be toilet trained, etc. Or the bragging that starts when they get into school.

    Thank you sharing your deeply intimate thoughts so eloquently. I feel blessed to have read this.

  167. I am not a mother, when and if I do become one I can only pray to have 1/10 of the strength and courage and grace you do.

    God bless you and Jessica.

  168. Amazing writing; amazing strength; amazing love. Will be thinking and of you on the 10th. I, too, hope the surgery goes in the best possible way.

  169. Amazing writing; amazing strength; amazing love. Will be thinking and of you on the 10th. I, too, hope the surgery goes in the best possible way.

  170. My 9 month old son was born with a kidney problem that will require him to have a transplant as soon as he is big enough. I am now intimately familiar with the flooring, heart-sinking shock that having a child with medical problems brings everytime you have one of those appointments. I know when things take longer–it's bad. I know when the doctor comes into the room and sits down–it's bad. Thank you for your words about how hard it is to have an ill child, a child who will have hard times for their entire life because of a health condition, while you still hope for and see in them only the best. About doctors who say "that's a good question". The same doctors who say, "I'd be a much better doctor if I had a crystal ball" when you want them to tell you what to do and also to take back everything they have just said and tell you nothing at all.

    I have also read Welcome to Holland, mentioned in an earlier comment, and many parts of that essay ring true for me, but for me, having a sick child is not quite captured there–it's more like, say, "Welcome to Cambodia." It's beautiful, and the beaches and temples can be amazing, but you might step on a landmine if you are not careful. I'm not done with my raging, or with figuring out what to do with this unfair thing that happened, because it does seem unjust, and I think I did, after all, believe in justice. And just hearing stories of survival help. That you can continue to live this life, and be strong and hard and committed and sometimes laugh. Thanks.

  171. It doesn't matter that you've never seen Paris, you've watched fireflies with your daughter while looking at the stars! We both know how much more beautiful that is and I live in Paris.

    I know I will think of you and your daughter while walking in the streets tomorrow and my thoughts and prayers will be with the two of you on August 10.

  172. Oh my dear…I agree the 10th is too far away and far too close!!! I will certainly send you and your sweet daughter many blessings! I encourage you to scream at that supreme powerful being, I have done it many times…it always felt much better! And in the end, may you come to know that both of you have chosen this beautiful, courageous, painful, scary, humorous, dark, light, difficult and truly magical journey together.
    I love the ex and bless him for staying in the game, if only for your sweet, tough daughter!
    With Much Gratitude for your willingness to share your truth, grief, honesty, vulnerability and above all your LOVE!
    Much love to you! Ellen

  173. I will likely read this essay over, and over, and over again. Perhaps for the rest of my life.

    My heart will be with you and your daughter.

  174. I came upon the link to your piece, Jennifer, when I was up prepping for a meeting with my daughter's GI tomorrow. A meeting at which she will present a choice of unpalatable options for treating my daughter's Crohn's Disease and I'll be forced to start the process of making a choice I don't want to make. Powerful doesn't begin to describe your piece: The words soar off the page and right up to those stars you so vividly stitched into place in the sky. My heart goes out to you and will be with you in the coming months, particularly on Aug. 10 (one day after my daughter's 12th birthday).

  175. Thank you so much for sharing these powerful words. I will be thinking of you and Jessica on the 10th and praying that you both have peace and strength and healing. And yes about the parenting- so very hard to just do what one has to do, day after day. Bring on those ten men and Satan. You said it all.

  176. This is such a beautiful, powerful entry. My thoughts and prayers will be with you and your daughter on August 10th.

  177. Poignant and painful….I wish all who are connected to you and your daughter peace and joy.

  178. thank you for doing this, for explaining how one child fills the universe, and what love really is. Don't be so sure about the benevolent God thing. It is more likely you have been blessed with a child who is a teacher, who will show you how deep and how high life can be, and has given your life purpose beyond anything you could have found for yourself. You are an amazing writer and mother, and we need you.

  179. I cried for 10 minutes, loud and hard, not because I feel bad for you or your daughter, but because i am a new mom who has finally learned how to love, and I have never seen anyone who can put that powerful love into words the way you did, and love hurts…

    I feel really really sorry tho, for anyone who thinks that they can be happier without kid. They must have never loved before or just don't know how love feels.

    we have a lot of those parents here in Asia, and i truly feel sorry for them. they have kids under tremendous pressure (to continue the family name), some of their husbands may leave them if they don't have a son, some of them may get kicked out by the mother-in-law if they don't have a child…so here they go, not wanting a kid at all, and when the husband still kicks her out, the first thing they say is.. I do not want the kid… i want to be married again.

    you have had such a hard hard life, yet it is so blessed, because there is love. and love, sometimes it is easy, in your case maybe hard, but it always hurts because it is just so beautiful.

  180. Great read, but in defense of the "academics", I think there is a difference between people who want children, and people who don't.

    Not everyone wants children, and they can be just as happy and fulfilled as people with children.

  181. You write beautifully, my heart aches for you and your family. My thoughts are going out to the creator, (if there is one), to protect you and your daughter through this whole ordeal. You have amazing strength mommy, so yeah, screw them, screw the universe, screw the disease! Love is more powerful than disease, love can cure.

  182. So familiar, our Annie is 9 she has Rett syndrome. Lot of the same issues. Our 13 year old, Coleman, has major medical problems also. I think people with healthy kids would ball reading your story, I did some myself, at points I was grinning because we've been there. Good luck to parents of special kids. You're not alone. God bless.

  183. eye extracting piece of beautiful struggle.
    Today will be different thanks to you.

    You found life's silver lining even in the tunnel of her spine.
    I could congratulate you for the fine writing, the eloquent words, but that would be just commonplace.

    Instead I'll admire you from afar, when confronted with suck you are more awesome. you have overcome forces of gravity making the rest of us comparison slackers. If I ever see Paris, I'll do something commemorative for you.

    an academic computer biologist

  184. Will be sending you and your great gift of a daughter all the mojo I can muster on the 10th.

  185. I was also reminded of Welcome to Holland.
    My oldest son came down with Juvenile Diabetes when he was 5. Then he was diagnosed with hypothyroidism, and then celiac disease. It has a similar impact, but I have never really been able to sit down and explain what it feels like.
    Thanks for posting this and I liked the bit about there being a lot of people who understand the dark humor, and the bit about the family not coming through. Will be thinking of you.

  186. How lucky Jessica is to have you for a mother. Even with all the pain you both have been through, she is truely a gift form God. I don't know you, but I love Jessica and I love you too. Thank you. I'm having problems of a different sort with my son. Reading this today has given me strenght.

  187. I don't know and I do. Diagnosis came 1 year ago. My son is 4.

    G-d bless.

    P.S. Screw Holland.

  188. I read this like maybe it was meant for me. First grandchild is due in a couple of months. We already know there are problems–just not how serious they will be. My daughter is so frightened. I am, too.

    Maybe it will turn out to be not so bad. But then it might be. It is very hard just to wait. It's hard to go to the prenatal classes and watch everyone else be excited while our family only has worry.

    Love to you for sharing. It helps to know someone has walked this path ahead of you. Your strength will help us to have strength. Hugs and prayers to you and your daughter.

  189. Well, speaking as someone with PTSD, when your life is a horrendous series of anguish-inducing nightmares, and the best you can do to resolve it is 'break out in a stress rash' you can find 'the little things' to be pretty amazing.

  190. Thank you for writing this. I'm thinking of you, and holding my own son, who's had his own spinal surgery, tight.

  191. From here, too, there will be prayers and hopes reaching out for you, your beautiful daughter, and also your ex. You have brought light into darkness, and out of darkness, with this piece. Blessings to you, and courage, and loyal friends.

  192. I am 23 years old and have never had children, yet this essay brought me to my knees. When/if I have children, I hope I can be half as strong, persistant, and just straight as full of love as you. Thank you.

  193. This is remarkable. You are remarkable.
    I wish you every good good thing, and the best possible outcome for your daughter on the 10th.

    Sending all our healing thoughts your way. <3

  194. This is one of the most moving things I've ever read, hands down. I will be thinking of this – and of you and your daughter – for quite a while. On August 10th, I will close my eyes and send you both all the good vibes I have in me, so that you can battle what you've been handed to battle, even though you would prefer Satan and ten men. I don't do prayers, but I will think of you, and your daughter, and make wishes on the stars I see that you'll have the strength you need.

  195. My heart and thoughts will be with you and your sweet daughter on August 10th. I know exactly the sorrow and lack of certainty you speak of. And also the utter joy of those moments where your heart could burst with love. You capture them so well. Peace be with you.

  196. This is truly one of the most poignant and beautifully written piece I think I've read. Jennifer, you've shared your very heart with us – what an amazing little girl you have, and what an amazing mom she's been given.

    I hope that your life with Jessica continues to be full of adventure and exploration and growth and excitement. I hope you continue to capture your life with your beautiful words and eloquent way of arranging them on paper. You are a gifted artist and I am your captive audience, left begging for more.

    God bless you both!

  197. This is truly one of the most poignant and beautifully written pieces I think I’ve read. Jennifer, you’ve shared your very heart with us – what an amazing little girl you have, and what an amazing mom she’s been given.

    I hope that your life with Jessica continues to be full of adventure and exploration and growth and excitement. I hope you continue to capture your life with your beautiful words and eloquent way of arranging them on paper. You are a gifted artist and I am your captive audience, left begging for more.

    God bless you both!

  198. This is an amazing story told without self-pity, and it mirrors the story of my oldest grandchild who underwent a liver transplant which left him a diabetic and a patient who could be in critical care within 4 hours of feeling well and fine in a hospital that was about 13 hours away from the original hospital that did the transplant. Nobody understands the journey of the family that lives through this unless they walk in the same shoes.

  199. Sending love and strength to you, your daughter and her father. Thank you for your blog.

  200. I don't know the right words to say. I will be thinking of you and praying for you and your daughter on August 10.

  201. From one mama to another, I will be thinking of you and your baby on Aug 10th, and probably every day after. Thank you for sharing this. You are amazing and I wish you and your daughter every good thing.

  202. I too read about the results of that happiness study and I too was incredulous. Even though I don't have children -and at 50, won't.

    The results say more, as you imply, about the whole silly enterprise of defining happiness and ' improving' happiness, apparently defined in stupidly utilitarian terms, than about the reality of people's lives, as we all understand them.

    I don't suppose anyone would choose to deal with what you are dealing. Strange as it may seem, however, part of me envies the life you lead, nuclear detonations notwithstanding. You are experiencing stronger emotions than I ever will.

    My very best wishes for the surgery, and for the rest of your lives together.

  203. I'm a teacher. Ever since I can remember I always thought of myself as one. However, it struck me as an enlightening truth many years ago when on trying to explain to me why we sometimes have to undergo or face or whatever, extremely painful circumstances, somebody said to me, "If you really feel the conviction that we are here (let's call it "the world")for a reason and for a purpose, and that the ultimate purpose of human beings is LEARNING, acquiring KNOWLEDGE, you could say that life TEACHES us lessons. Would you as a teacher make your students do tests for which you have not given them the tools beforehand? Don't you introduce a new topic first, make sure the students have lots of practice and then you present them with a test so as to "measure" how much they have understood and how autonomous they are becoming? If you do this, do you think that the SUPREME KNOWLEDGE or whatever name you want to give to that "abstract" and at the same time "material" concept of someone almighty that rules the universe, does not do the same? Wise teachers know they can not expect their students to do something they have not been taught or trained for first."

    Of course you have ALL THE TOOLS TO COPE WITH THIS. You dread August 10th in the same way we all dread exams. But you have been doing your best. You stand the best chances of success, whatever happens with your daughter's surgery, because whatever happens it will be all right.

    SEIZE THE DAY and enjoy her company, get mad and swear at the hard life you have had in the past 10 or 12 years, because …Yes!!! you can (and should) express your anger as well. But don't forget you chose each other for a purpose, and what you need to learn is different from what your daughter has come to learn in her disabled body.

    When in my heart I accepted a truth I refused to see about my father and one of my sons, it worked wonders and the moral pain subsided. The situation improved so much just because I UNDERSTOOD what was happening instead of FIGHTING AGAINST what was happening. And understanding means realizing it is YOU WHO MUST BE THERE, IT IS YOUR MISSION, IT IS WHAT YOU CAME HERE FOR. AND THAT THERE IS SOMETHING YOU NEED TO LEARN TO MOVE ON.

    Just relax without neglecting your daughter, feel proud of yourself and value all the help from the doctors and the teams of professionals who must have done a lot for this girl along these years and who are still working hard. Once I managed to get rid of the anger and frustration because life did not turn out to be the way I had dreamt of, and once I managed to feel true gratitude for all the good things and people who were there for me in many different ways and stopped feeling "a victim" of the circumstances, I felt an overwhelming sense of freedom, peace and integrity.

    Last but not least, I also had to stop feeling I was responsible for everybody in my family or believing I could control every situation. We all have responsibilities, of course, and have control over our lives to some extent. But it is wise to be aware of the boundaries between a healthy command of our own life and a disfunctional need to control it.

    All the best for you and your family.
    Teresa, from Uruguay

  204. You are awesome, fearsome, and wonderful, and I hope I never need to access even half the courage and heart you have. You're doing good. Thank you.

  205. I step in puddles, on a daily basis – some are cold, some are muddy, some have sharp objects in them, some are deeper than I thought, and all are annoying. And there you are, near drowning, trying to keep your head above water.

    (((I wish you the best, good luck to you and your daughter)))

  206. I have printed this out and passed it around to my friends. Thank you for your story.

    I will be thinking of you and your precious child on August 10th.

  207. Jennifer, thank you for sharing your experience in such a deeply moving way. Your daughter is blessed to have you as her mother. With you by her side, I believe her star-wishes have come true.

  208. Thank you so much for sharing this. Your writing is so powerful. I am awed not only by your journey but by your generosity in taking the time to craft such a beautiful testament.

  209. You take my breath away…the raw pain and exception joy in your world is miraculous. Prayers from strangers are a powerful force and mine will be part of what I'm sure will be an army of voices gently praying now and on August 10th~

  210. My name is Jessica, too…and I just want you to know, that you are being prayed for RIGHT this very moment and I will not soon forget what I have read tonight. you are an AMAZING writer w/ an even MORE amazing little girl and I can SO relate to what you are saying-ONLY an academic would think that they found something such as that study result INDEED! LOVED that part. What I don't love for you is the obvious, and although I've never been in your shoes I feel your love. The Love that would slay ten men and Satan because I know that love too.

    I will be thinking, praying, and wishing on some stars for you througout your journey. GOD BLESS you.

  211. I get it… I ache for you. I never was a joiner …I always said I would never belong to a club that would have me (ancient, hackneyed, paraphrased) . I never anticipated the fierce, paternal, to the center of the earth and back, love I feel. It can overwhelm, exclude and maroon a soul. I find I have an infinite capacity for the "less than perfect" but I occasionally despise the folks who do not understand…but how can they? My dear, sweet, always silent, but gosh how lucky you are that he is ambulatory, 24 year old son (August 23) is severely compromised by missing bits of a chromosome. I mean who knew how vital those tiny shreds of genetic material would be – it wasn't in my "Perfect Pregnancy Manual". I will be thinking of you before, during and beyond August 10th . Thank You – Thank You – Thank You

  212. My oldest, my daughter, just turned 18. And tho she has no severe medical problems such as your daughter, many, many of the sentiments have been mine, for various reasons over the years, and now, to let her go. To let her go into the world, where it could hurt her, or she could be afraid and I'm not there….I get it, I really get eveything you are syaing here, and, well…I hope you feel less alone for sharing with us and hearing us say how we empathize and admire and just…hey, we're people, what more can we do than our best, right?
    So I wish the best possible outcome for your Jessica.

  213. Jessica,

    From one single mother of a severely handicapped daughter to another:

    Thank you, so much, for so eloquently expressing what I've been trying to put into words for the past 23 years, since my own daughter was born with so very many problems.

    We have 2 choices, which those who have not gone through it, will never understand. We can curl up in a little ball and cry and ask "why me" – or we can keep moving, despite our pain and desire to scream at the universe in anger and frustration on some days, and actually accomplish the task of living. You've chosen to accmplish the task of living and laughing and loving regardless of what fate throws. Good for you.

    May fate, and whatever deity you happen to believe in, watch over both you and your daughter. And know that you are in my prayers.


  214. Jennifer, for the love of Jessica, I send you all the strength you will continue to need as you count down the days. Sending positive energy and much TLC for you through the universe.

    It may sound "airy fairy" but it isn't, it is real, it is grounded and it has a smidgen or understanding of what you have been through (and are still going through.)

    Much love to you and your beautiful Jessica,


  215. I’m a teacher. Ever since I can remember I always thought of myself as one. However, it struck me as an enlightening truth many years ago when on trying to explain to me why we sometimes have to undergo or face or whatever, extremely painful circumstances, somebody said to me, “If you really feel the conviction that we are here (let’s call it “the world”)for a reason and for a purpose, and that the ultimate purpose of human beings is LEARNING, acquiring KNOWLEDGE, you could say that life TEACHES us lessons. Would you as a teacher make your students do tests for which you have not given them the tools beforehand? Don’t you introduce a new topic first, make sure the students have lots of practice and then you present them with a test so as to “measure” how much they have understood and how autonomous they are becoming? If you do this, do you think that the SUPREME KNOWLEDGE or whatever name you want to give to that “abstract” and at the same time “material” concept of someone almighty that rules the universe, does not do the same? Wise teachers know they can not expect their students to do something they have not been taught or trained for first.”

    Of course you have ALL THE TOOLS TO COPE WITH THIS. You dread August 10th in the same way we all dread exams. But you have been doing your best. You stand the best chances of success, whatever happens with your daughter’s surgery, because whatever happens it will be all right.

    SEIZE THE DAY and enjoy her company, get mad and swear at the hard life you have had in the past 10 or 12 years, because …Yes!!! you can (and should) express your anger as well. But don’t forget you chose each other for a purpose, and what you need to learn is different from what your daughter has come to learn in her disabled body.

    When in my heart I accepted a truth I refused to see about my father and one of my sons, it worked wonders and the moral pain subsided. The situation improved so much just because I UNDERSTOOD what was happening instead of FIGHTING AGAINST what was happening. And understanding means realizing it is YOU WHO MUST BE THERE, IT IS YOUR MISSION, IT IS WHAT YOU CAME HERE FOR. AND THAT THERE IS SOMETHING YOU NEED TO LEARN TO MOVE ON.

    Just relax without neglecting your daughter, feel proud of yourself and value all the help from the doctors and the teams of professionals who must have done a lot for this girl along these years and who are still working hard. Once I managed to get rid of the anger and frustration because life did not turn out to be the way I had dreamt of, and once I managed to feel true gratitude for all the good things and people who were there for me in many different ways and stopped feeling “a victim” of the circumstances, I felt an overwhelming sense of freedom, peace and integrity.

    Last but not least, I also had to stop feeling I was responsible for everybody in my family or believing I could control every situation. We all have responsibilities, of course, and have control over our lives to some extent. But it is wise to be aware of the boundaries between a healthy command of our own life and a disfunctional need to control it.

    All the best for you and your family.
    Teresa, from Uruguay

  216. I cant even begin to express how much your words have moved me.

    You are an amazing talent. I have never experienced anything like you have with your daughter, but for any one that gets to read this that has experienced any kind or heartache, loss, grief you will have touched them deeply, as you have me.
    I hope that I,too, will embrace life and its "lesson" as brilliantly and as graciously as you have one day.

    I will never forget the beauty of you picking up the STARS and putting them back in the sky, your daughters unwavering love for you and life, your earings, your mikes hard lemonade and her diet coke.

    I thank you from the bottom of my heart and pray.

  217. I found a link to your site tonight just after soothing my six year old daughter back to sleep. While I held her, I was reminded of the times, when she was an infant, that I would whisper into the back of her head as she slept. I used to whisper "grow."

    My daugher had a profound brain injury when she was born. Perinatal asphyxia. She's got CP, microcephaly and a long list of diagnoses and complications that come with that. There's been grief and trauma and doctors and therapists to contend with. But. Then there's Ruby. I am both in awe and completely in love with her.

    So, she fell asleep and then I read your post. And had a good, long cry. I was going to cut and paste the things you say that describe my own experience perfectly, but then I realized that there isn't enough room here. You completely get it. I'm so grateful that I found this tonight. I'll be thinking of you both on the 10th and sending love.

  218. Prayers and thoughts for your beautiful blessing on the 10th and always. Thanks for sharing.

  219. I can't type much because of the tears in my eyes, nor say anything for the lump in my throat. My thought go out to you and your beautiful daughter.

  220. my son has special needs, and this piece captures how that affects me so perfectly. thank you.

    and good luck. your daughter is one lucky girl to have you.

  221. I don't know what to say. Perhaps, just thank you for opening your heart and sharing this story. I'll be praying for you and your daughter. Take care always.

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  224. I was so moved by your post. I am the mother of a five year old daughter, and reading your words brought me to tears. I'm so sorry for what you are going through. I don't know what else to do for you except tell you that I will pray for you and your daughter and will be thinking of you on August 10. As a nurse, your post reminds me of the sensitivity I need to exhibit in my work. Thank you for sharing your joy and pain; you are a wonderful writer. Your daughter is very lucky to have a mother like you.

  225. Absolutely amazing piece of writing. I will be thinking of you and your daughter on the 10th.

  226. An unbelievably heart wrenching yet heartwarming posting. I will say an extra prayer tonight for you and Jessica all the way from Sydney. Hugs to you both!

  227. You truly capture the single consistency of love and the random nature of events that characterise motherhood. Will be thinking of you both on the 10th and beyond.

  228. August 10th is a lifetime away and will also arrive far too quickly. All my love to you and your daughter. She needed and got the best mother in the world and I admire your courage immensely.

  229. You are amazing. Jessica is fortunate to have someone who loves her so much.

    All my thoughts and prayers are with you as the 10th approaches.

  230. I've never read anything this moving and powerful before… I'm floored. I'm about to lose my mom way too early to cancer, and I imagine my dad, who has been caring for her nonstop for two years (and their whole life together), feels much the way you do. There's something magical about putting it all into words; maybe that's what makes the unbearable just bearable. I'll have you and your brave, beautiful daughter in my thoughts on the 10th, and always. Thank you for sharing this.

  231. A good friend of mine gave me the link to this blog and told me I needed to have a box of tissues with me. I did not take her advice but decided to forge ahead. Had I been wearing any mascara, it would have melted down my cheeks. Thank you so much for sharing and writing this wonderful, spirited blog. I am just now familiarizing myself with your family, I apologize for not knowing anyone's name yet. You are wearing the badge of courage, even though sometimes we do not realize it. My heart goes out to you.

  232. Your thoughts are very moving. I hope all goes well for you on August 10. Your experience puts things very much into perspective for me. I can't really come close to what you are both experiencing and feeling but I can sympathise and also prause you for your approach. God bless. x

  233. It has been such a long time since I have cried the way I did when reading this. As someone who has that password, thank you. Thank you from the bottom of my heart.

  234. You are amazing and have a strength I'm sure I wouldn't have in your shoes. I will pray for you and Jessica on the 10th, and in the future too.

  235. You are a blessing to mankind with your heart and love…will be thinking about you and your daughter and please please please take care of yourself, you gifted, beautiful mother and human…all the love and hugs in the world to you…

  236. I had seizures that shook me like my own personal earthquake for years and years when I was a child. I remember waking with my mom's fingers in my mouth, anxious eyes, but always smiling. We called it lightning in my brain. The doctors told her I wouldn't read, wouldn't understand, wouldn't develop. "Enjoy her while you can" they said. There's lots of details that go here, but they don't matter. The long and short of it is I got better. It took a long time, and I don't remember much of it, just a haze of needles and electrodes and nurses that called me Princess and piles of Jello that tasted like battery acid. What I remember with prefect clarity is my mother, bringing all my dolls to a dozen hospital rooms, all 96 of them, so i wouldn't feel alone, my mother reading to me by the light of her cell phone when I hurt so bad just breathing rubbed me raw, my mother letting me have cheesecake for dinner every night for a week when it was all I could find an appetite for, my mother telling a doctor to go fuck himself when he made me cry. The strength and absoluteness of her love is what I remember, and I promise you it's what Jessica will remember too.

  237. Beautiful and moving post. You are a brave mother and woman. I hope you find strength in your daughter's love and I pray everything goes well for you on the 10th.

  238. thank you for sharing this. I hope sincerely, that everything goes well for you and your daughter, on the 10th and thereafter.

  239. Thank you for sharing this with us. You are, above all, an amazing mother & it sounds like you have an incredibly special little girl. My thoughts & prayers are with you – especially on the 10th.

  240. You can never underestimate the power of love.
    Thank you for sharing this with us
    My thoughts will be with you and Jessica for ever

  241. I have a special daughter. She has non-specific mental challenges and over the years they have sometimes been unbearable BUT the love never dissipates. 32 years on and it is always there. Always unconditional and so strong that I too could take on Satan and his army, and somewhere along the way I have done just that, several times.

    It is a beautiful and moving piece of literature which has brought to the surface many of the feelings that I have buried for so long.

    Keep strong for your next hurdle. We will be with you all the way. Thank you for sharing.

  242. Any essay that features a sentence like "If you weren’t an academic, you might define happiness as the experience of being fully alive" has already won me over. Thank you for the reminder that was looks like nothing but suffering is also the gateway to love so profound that it shines out like a supernova. My thoughts and love go out to you.

  243. Who needs God when there are so many of us strong, tough, nurturing, loving, heroic and infinitely fragile mothers running around?

    "Mother is the name of God on every childs lips"…something my brother told me after I came home with my second baby.

    You are a mother in every sense of the word. And I hope it gets easier for you and Jessica, instead of harder. A thousand blessings to you and your baby.

  244. I NEVER cry. Never. And I am crying now. I don't even know what to say except that I hope that this blog and the comments we leave give you more strength than you thought you had. I will pray, pray, pray for your babygirl. Good luck.

  245. Thank you for opening your heart with us Jennifer. You were chosen to be Jessica's mommy for so many obvious reasons. I am so sorry for the way that people's fears and weaknesses have left you feeling alone during this journey. You are not alone. You have the power of prayer and love on your side from everyone you have touched.

  246. Jessica is a treasure. Despite all the heartbreak of her condition(s) and surgery, you have had some extraordinarily beautiful moments and I wish to have similar ones with my two daughters. You are both very lucky to have each other.

    Stay strong.

  247. Amazing. Gut-wrenching.

    It's so jarring when someone writes about reality and all the contradictions and nuance and shades of gray that make up real life. "Happiness" isn't what life is all about. The real search is for meaning.

    Thats the realest thing I've read in a while. Thank you.

  248. I found this blog entry linked from another site.

    I read and reread your entry and cried. You are an incredible mother. Your daughter is blessed to have you. I will keep the two of you in my prayers as the date gets closer.

    Keep strong.

  249. God bless you and Jessica! Life deals cards we never understand, and we don't get any manuals as parents as to how to cope and handle these cards. Getting through each day is the building of courage to get through the next one. May the surgery go well on August 10th and may you and Jessica share so many more nights of staring at the stars together and oh, those precious hugs that make life worth living!

  250. Princess Grace said something to the effect that happiness is not normal and happens quite rarely, and it is precisely that rareness that makes us crave it all the more.
    Personally, I'm suspect of people who say they're always happy. But maybe that's just jealousy.
    I'm sorry that Jessica has to go through this. Quite obviously from all the postings, there are many of us out here that would cut a piece of soul out for both of you if we knew we could and knew that it would help. Some times it helps to remember that we just have to get through the next hour. Or maybe just the next 10 minutes. The rest comes, but that can be delt with later. Peace and calm to both of you.

  251. You have such an incredible, admirable amount of strength and love, as does your darling girl…I hope that the thoughts and prayers of all of the commenters/readers (including me) help you through the 10th, and always.

  252. I can't say much in response to this incredibly eloquent post, other than this: may you and your daughter have the very best luck in the world. You don't just need it, you deserve it.

  253. Much love to you and your daughter. I won't ever forget your honesty and will keep the two of you in my prayers.

  254. Thank you. I'm spreading this around, so more people can send you their love and energy. I'll be thinking about you August 10.

    You ARE taking on Satan and ten men, every day. Most parents do, in some form, but your battle, struggle, challenge, 'opportunity', is much more visible and visceral. Please continue to share, it helps us all be more human.

    For myself, there is divinity in the universe, though not exactly some personal god who grants our wishes or listens to our begging. From that place, I send you all positivity and hold you and your daughter in the light. You are strong and amazing!

  255. Prayers, prayers, prayers for the 10th. You and your daughter are lovely and beloved.

  256. Amazing and powerful. You and Jessica are in my thoughts and prayers.

  257. You are an amazing writer and an incredibly brave woman. I don't know if you ever feel brave when you're throwing up or looking at fireflies, but you are.

  258. this is one of the most beautiful odes to motherhood that i have ever read.

    and it would be easier if it were satan and ten men.
    and you're right–that's never who we end up fighting.

    keep going, mama.
    grace and serenity be with you.



  259. Thank you for sharing your story with us. Kind of puts my "rough" day in perspective, and I think I'll stop whining now.

    You and your daughter will be in my thoughts. I can't imagine any way that I could help either of you, but if there's ever anything that a photographer who lives just north of Dallas can do for you, please let me know.

  260. Wow. Wow. Wow. Wow. Wow. What a writer. What a mother. What a heart wrenching situation. Sending love…

  261. I don't know you but feel your pain…I have a 7 month old grand daughter that means the world to me and can not imagine her or my daughter living through what you are going through…I pray God keeps you in his arms.

  262. You are a wonderful momma. I completely lived through your words and am in tears. Ill keep your daughter in my prayers.

  263. What a touching piece of writing. Many thanks for sharing your innermost thoughts with the world and I sincerely hope that come August 11, you will be rejoicing, able to sleep and looking forward to another night of watching fireflies with Jessica.

  264. Thank you for sharing. You are so strong and an amazing mother. You also are a wonderful writer. I read and re-read the part about the sky that has fallen and how you pick it up and put it back. That was incredibly beautiful.

  265. Hi,
    I am five months pregnant with two little ones at home. A colleague sent me this and I cried the whole time. Tears of joy and sorrow. Joy from reading about such incredible people and sorrow that there's so much pain there for you. I understand that there has to be balance in life -but.
    They say that the deeper the sorrow you experience, the greater the joy you are able to experience.
    I would like to send you and your daughter a gift, before the tenth. If you would like to receive it, send me a note with a mailing address and I'll ship it express.

  266. This is beautiful and touching. You are clearly an amazing mother, writer and woman. You and your daughter will be in my prayers.

  267. You are a great Mom and a great person.
    All my best wishes go to you and your daughter. You are both amazing.

  268. You have been "asked" to take on Satan and many more than ten people ("screw them!"). While the fight has taken its toll, your account of the battle is wondrous to behold. I am confident that The benevolent God (not the image you stopped believing in) has been with you throughout your ordeal. I am also quite sure that, as a supremely powerful being, He would welcome any curses you care to hurl His way.

    You and your daughter are in my prayers. Thank you for your beautiful expression of joy.

  269. Thinking about you on August 10. I hope you will let us know. Now that we know her, we all love her, too. We can't help you, but we can hope for both of you, and maybe that hope will be strength in your summer sky.

  270. thank you for writing this. i, too, heard about that article and could not pinpoint what was wrong with it, but you've done it for me. you are strong and inspiring and nothing i can say helps, though i wish it would. may august 10th bring about the best possible outcome. you're in my thoughts.

  271. Thank you. Your daughter sounds wonderful. And so do you. I'll be thinking about both of you on August 10. I sincerely hope everything goes as you hope.

  272. I have a little sister with cerebral palsy and epilepsy. Well, she was 21 this year so I guess she's not so little anymore. She can't walk or talk or do anything for herself….she's a 6 month old baby in the body of a 21 year old girl. Reading your words made me think about what my parents must have felt when they were told the news that their daughter would never have the life her sister and two brothers would.
    I'm not a particularly religious person but I do believe that there is some higher power out there watching out for us, maybe in the stars or maybe in the fireflies you and your daughter watch together. Whatever or wherever it may be, I'll say a prayer to it that your daughter comes through everything and returns back safely into the arms of her wonderful mother.

  273. I read your post yesterday, and now I find myself still thinking of you and of Jessica, hoping that my good wishes will reach you, that my prayers will help you. Your agent is right – your book will sell. The e-copy will do well, then one publisher will find you and decide to do the right thing and let you tell your story. Thank you for reminding us about what really matters.

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  275. Moving, loving, heartfelt. Your daughter is what is right with the world. You are strong and and courageous. My thoughts are for a safe outcome on Aug.10. Thank you for putting yourself and your story out there.

  276. Thank you for writing/sharing this with such emotion and honesty. Your story will stick with me and I thank you for that. My thoughts are with you and your daughter.

  277. I think people like you are what God is.Whatever August 10th brings, your daughter has been blessed with the best mother she could ever have and you have been blessed with your daughter.No one knows why things happen, but they do. And we can only do the best we can. You both will be in my heart

  278. I wish I could say you were in my prayers, but I don't believe in God anymore. I wish you fireflies and Diet Coke and all the hugs you can handle, both of you.

  279. This is the most profound writing on the nature of love I've ever read. Thank you so much for this. My thoughts and prayers will be with you and Jessica on August 10th.

  280. Maybe God chose your path so that you would be able to explain love to us mere mortals, at which you have done an admirable job. I am grateful and will pray for you both.

  281. You hit the nail on the head with this writing. Though you don't believe in God, I believe He/She has perfect timing. A friend forwarded this to me today, and it touched me deeply. My son, too, spent months in the NICU and had most of his left frontal lobe removed due to seizure disorder at age 8. He's 12 now, and had a seizure 10 days ago – had EEG today showing continued seizure activity. I've been feeling these same feelings for the past 10 days, wondering when the shoe will drop again -when will next procedure be needed? I believe God sent me this through you – I'm not alone in my feelings. Thanks. Will pray for you and your daughter.

  282. May His will be done … Your courage is beyond compare. When you do get around to Satan and any ten men, they will rue the day.

  283. Wow…this was heart-wrenching. The part about wishing on two stars brought tears to my eyes. You are a wonderful mom, and you and your daughter will definitely be in my thoughts and prayers on the 10th.

  284. Thank you for writing about yourself and your little girl. My heart aches when through your writing I relate to my mother's experience… she has been struggling for lives of my brother and sister but they left at the ages of 17 and 24. I think I was too judgemental and stone-hearted to fully understand what was going on at that time… But the longer I live, the more I understand. Thank you for this blog.

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  286. First off I would like to say you are a AMAZING woman & mother.Don't let anyone tell you differently. Believe in yourself always! You are a very good wrighter! Keep it up! I pray that God will give you and your daughter the strength you need to go on everyday.May your daughter be surrounded with all the dragonflies in the world. I will be praying for you both August 10 God Bless you both!

  287. You understand. . . . this life we live for our children. . . and no matter how beautifully you express your daily life . . others will never truly understand it all.

    It is the difference of looking at a vacation picture of the Grand Canyon and walking down to the bottom for yourself.

    You are doing a great JOB! You are a GREAT MOTHER.

  288. Our stories are different, but the same. My son is only 4, born too early and lost half his brain to a massive hemorrhage two days after his way too early birth. He has seizures, he still can't walk or talk, he doesn't see well, and so on and so on and so on. 10 surgeries before he turned 3. In and out of the hospital. You know the story. There's a short list of people I've come across who "get it." Thanks for being one of them and for sharing your story. Not only sharing your story, but doing it with the same stark honesty and dark sense of humor that I use to get me through each day.

  289. So much loving, positive energy coming your way from Minneapolis, MN on August 10th and every day before and after. Thank you for sharing this. You are an incredible writer, mother and satan slayer. Peace.

  290. I cannot say that I can relate to how you feel, though even though I have never walked in shoes nearly the size of yours I still can relate to your words. A parent will do anything for their child (a good one that is). We will sacrifice to the ends of the earth just to find a way to make them happy. You are just one story that proves just that. What your story also does is remind us to not take for granted what we have. So what if she had ice cream a cookie and diet coke! We fret these days over such remedial things IMO…. I wish you and your daughter well…. At the end of the day you have done your job when she knows with out a doubt you love her with all your heart! 🙂

  291. I will pray for you and your child, and speak the blessing over her precious life. God knew what He was doing when he gave her to you! You are the best one for the job. She is blessed to have you!

  292. Lord Bless you lady.
    What dramatic and powerful writing.
    Fingers crossed for her future (and hers)

  293. You are a brave and wise woman and you are the best gift your daughter could have and I am so glad you share this love. I will pray for you both for now, during the surgery and afterward.

  294. Thank your for putting into words what so many parents of children with special challenges face. I cried reading it because it's SO TRUE. Just the sheer despair of loving your child so much but not being able to fix anything, just having to muddle through as best you can. My daughter's medical problems are not as severe as Jessica's but I relate so much to the feelings you express. Thank you again for this very honest post. My prayers will be with you and Jessica.

  295. your story touched my heart. I have a dtr of my own w health issues and our family is living in this alternate universe created by the fear, pain, loss and grief … but a world also created by the unimaginable joy, change of perspective on life and complete unconditional love that we share. So much of what you say I also live. My little girl accepts her life with grace and peace while the rest of us fought it tooth and nail….. I have always said … when I grow up I want to be like her. She is your rock…. I think I get it. Gods Best.

  296. There is a benevolent God–that's how you were chosen to be your daughter's mother–He knew how well you would care for her and how fiercely you would love her. My son has his own problems–he is adopted–and that is how I KNOW God is–He answered scores of prayers, and denied scores of others, to bring me my son. God bless your sweet child.

  297. Your beautifully written story is a tribute to your daughter and to you. Our prayers are with you that the highest good will come to you, your child and your loved-ones. Blessings.

  298. Your story was very touching and powerful and I wish you nothing but good fortune in your life.

    I will say however, that this story made me ridiculously relieved that I decided to never have kids!
    (Also, that the "Academic world" is filled with people who have children, you know.)

    I feel quite alive and happy without them, though I'm glad you are happy with your life with your daughter, she sounds adorable.

  299. My son, now 45, was born with hydrocephalus and has a shunt. I've felt what you've felt, thought what you've thought — altho your situation is so much more difficult I'm almost ashamed to say so.

    Jessica doesn't sound like someone who has had half her brain taken out; she sounds smart–and delightful. I'll be thinking of you and her.

  300. thank you. thank you for writing this. i wish i had something more profound to say right now, but you've eased something hurt inside of me as we go through something different, but eerily familiar in strange ways.

  301. I didn't want to read this. I am so sorry for life kicking you in the crotch. Your daughter is a lucky girl to have you. All my thoughts and prayers will be with you August 10th. Maybe I will even start to pray all regular like so I can include you guys.

  302. Hey, I haven't heard from you in awhile, but I read your blog. Wow. Just Wow. You rock.

  303. i read this without looking at the date it was posted, dreading the ending. but when i got to the end, it wasn't THE end. i'm so happy you still have time to spend with your precious girl. i can't imagine having to go through such a thing, worrying that each surgery may be the last. thank you for reminding me to appreciate the time i have with my family. i will be praying for you both; for God's hand to guide that of the surgeon, and for Him to wrap you in his arms and comfort you.

  304. You are amazing. Jessica is amazing. Your husband is amazing. We are all rooting for you. Tell Jessica her ears are burning (not literally!).

  305. I keep reading your post again and again because it resonates with all the pain I also experience watching my daughter get diagnosed with Leukaemia, undergo 7 months of intense chemotherapy, full body irradiation, a bone marrow transplant and nearly die so many times. She is still with us and I don't care either that I didn't get to Paris. I also aways wanted to be a writer…I just never knew that it would take Leukaemia before I would, like you, share my story with the world. I am not a writer, not in the published sense but I am glad I have found you and I agree that the world is an amazing place full of people that want our stories and I am grateful to you for sharing yours. And when i pray for Sam, and a host of others…I will also pray for you and for Jessica. Clare

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  308. God Bless you, your daughter, and your ex. Few can really relate, but a larger number have gone through other sorts of "gut-wrenching grief". Your writing and insight is powerful. I will always remember this excerpt that especially hit home with me…

    "It’s a club and the password requires an appreciation for dark humor, and you have to have been through gut-wrenching grief to get here, and you look at the people who don’t know, and you realize, for the first time, that you don’t want to be them: innocent, unknowing, unformed, unrealized, their lives entirely unlived."

    Good Luck.

  309. Your story is the strength and the reality of every mothers(parents) fear. I get it. Walk tall and with pride. I hope that you will find peace, for you have already found love, the best love that anyone can have the love of a child.

  310. My daughter turned 13 yesterday. She's a wonderful kid. After reading this beautiful piece of writing, I will appreciate her all the more. I'll keep you in my thoughts.

  311. Beautifully written
    Such a special Mum you are
    Will be praying for you all on August 10th

  312. Damnnnnnnn! You are an amazing mother AND writer! Your daughter is SO cool! Talk about "out of the mouths' of babes…."! Thank you for sharing this and giving tons of folks true prespective. Please know you both will be in my thoughts and prayers not just August 10, but often before and after that date.

  313. This was so heart-touching it made me cry and cry and cry. My birthday is on August 10th; when I blow out my candles I'll be wishing for your daughter's safety.

    I wish you both the best!

  314. Words cannot express how thankful I am you wrote this. This link came my way just when I thought I could not bear to walk this beautifully painful path of Tuberous Sclerosis with my daughter any longer. For us it has only been 8 months. It gives me strength, hope and unimaginable joy to know you have walked a similar path for thirteen years and you are still standing…that Jessica is so wonderfully resilient.

    For us, the not knowing is one of the hardest parts. Will she ever talk, walk, feed herself a cookie? If Jessica can do it, then there is hope that Kaleigh will someday too. And if she doesn't? Well you have given me hope that we will then simply pick up the pieces of the shattered sky and rearrange them to make ourselves the greatest view we can imagine.

    Our thoughts are with you and Jessica.

  315. thank you for sharing this story. you're a great writer and an inspiring momma, too. my daughters and i send you and Jessica our love and good thoughts.

  316. What a fantastic piece 🙂 My sister was disabled and we were so ridicuously lucky to have her, even when people just assumed she was too much effort. She made us who we are now and I think your daughter has made you who you are (And almost definately she is who she is because you never gave up and you love her so much!). Stay strong and I send all my thoughts to you and your beautiful girl x

  317. I just saw this via Facebook.

    While I do not know the pain you endure, I do know what you mean of loving someone before they enter the world. I was lucky to feel such happiness and joy seeing that double line on the stick, and see that tiny heartbeat, but alas….that was all that was meant to be. Just the flicker and "swoosh-swoosh" then it was gone, but I loved him/her all the same.

    I will pray for Jessica (and you) and I hope that doesn't bother you, since you stated you don't really believe in anything. I wish Jessica and you nothing but fireflies and favorite songs for many many years to come.

  318. An acquaintance just posted this on their facebook page and I am sitting at work with tears in my eyes after reading this post. Sunday marked 2 years since our son was admitted at an ICU in acute congestive heart failure. Your analogy of putting the stars back in the sky over and over, all screwed up and backwards, is one of the most beautiful images I've ever had of how bizarre our lives are. The stark relief of terror against the tiny nuggets of joy we get make ordinary lives seem so plain in comparison. Not many people understand this. I am happy to know one more comrade…

  319. Thank you for writing this. I'm a medical student and just finished spending a month on the pediatric floors, asking all of those annoyingly routine questions and more. Thank you for reminding me of what it means to be the mother or the daughter or the lover or the whomever it is behind the curtain. It is hard for us, the medical staff, to understand… perhaps just as difficult as it has been for your friends to understand… perhaps more so. But thank you for helping me; your story is meaningful, and your joy both incomprehensible and staggeringly beautiful.

  320. Your story is so touching. I can relate to so much of it since my daughter has suffered with illness, however, since she was 12 1/2 and is now 17. She suffers differently, however, she knew the life of a healthy vivacious outgoing young girl and it was completely altered when she started having symptoms of the syndrome she has and after 8 neuro-surgical interventions, nothing has much changed, except one of the interventions caused a stroke and she has permanent brain injury from that and the learning disabilities and memory problems that came along with that.
    Oh, but do we all have killer dark senses of humor and no, not everyone gets it! Close relatives and friends- however, that list is getting shorter- share the sense of humor with us, because they care enough to ask what really is going on and listen to us vent. My daughter also has Epilepsy, it is controlled with meds, but the breakthrough seizures are tough and it is like the water torture, you never know when it is going to happen? By chance, when we are out for that little trip to the store that we take when she is feeling good enough to walk around and having a great time and wham!
    My children are my heroes, my daughter lives gracefully with horrible pain every day and my son has been through a lot along with her and the emergency hospitalizations, surgeries and him being displaced for long stays with relatives. I still would never trade it for anything in the world. I marvel at their ability to laugh and enjoy life. Unfortunately, laughing is not the best medicine for her ( it temporarily changes the pressure in her brain, because she is holding her breath and it causes more pain), but she still does it and robustly!
    I hope everything goes well with Jessica's surgery and I will be thinking about you both and a speedy recovery for her.

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  322. So moving that I’m glad I work from home. I long to be 1/10th as good of a parent as you are. This makes me realize how stupid 99.99% of the things are that I get upset with my kids about. My best wishes to Jessica on Aug 10th. She sounds like a truly bright spot in a sometimes dark world.

  323. My heart, thoughts, and prayers are with you and your family as you take on this next surgery and life beyond it. Your story is heart-wrenching and beautifully told. I know of several people with a similar story, and I know when they read this, they will echo your sentiments and feel relief that they are not alone in them.

  324. This made me cry and hurt along with you. As a mother of two healthy children I never stop feeling pain at any little hurt they may have now or in the future or for anyone else with children-a mixed blessing and curse. Wishing you well always.

  325. Jen – Wow. I laughed. I cried. I laughed some more. What an amazing mom and Jessica reminds me of my niece, so I love her already too.
    Though I find it surprising that you don't believe in God. After all, you see that those who don't understand the comedy and tragedy and joy and pain of your life and you know that they are "innocent, unknowing, unformed, unrealized, their lives entirely unlived."
    Why did God give you this painful and wonderful gift? I don't know. Maybe because he wanted you to see him and to not be so unknowing.
    We are never required to take on Satan and 10 men (which saying I love by the way), sometimes we're just required to look up and ask the Lord for strength to make it through today.
    I hope that someday you will see him and his surprising love for you and your precious girl.

  326. This writing the truth about your life is so courageous and brave! As is your daily determination to never give up. Thank you.

  327. I only "know" you through shyly reading comments on FLX over the past 6 years (before my freelance writing career died with the recession).

    I stumbled on this blog and recognized your name. I was expecting another blog about "the life of a freelance writer." And instead I found this post: THIS–you and reality; a different reality than mine of course, but reality; knowing, not innocence. And YOU, not "you as the writer of those Dojo books" is passionate and angry and awe-inspiring.

    Thank you for being real. I'm going back to get to know you–as far as I can–from the beginning.

  328. Thank you very much, writing feelings is not for everyone, you manage to create them in me. Very powerful, very real, I admire this feeling you have given me today. it si powerful!
    The power be with you allways! kiss, Maria

  329. Thank you for being so real, even if it is gut-wrenchingly real. I wish I could keep pain and hardships from children, but what is interesting is that they seem the most able to handle them. When I look at my daughter, I see an innocent yet strong smiling little girl gazing up at me, and I know I would do ANYTHING for her. Anything. It breaks my heart to hear of your little girl going through these kinds of medical tragedies, but I'm so glad that you truly appreciate the moments with her. Watching fireflies? Wishing on star earrings? Dancing to your favorite song? Twirling just because? Absolutely, those are the joyful (if sometimes bittersweet) moments and you recognize that. Good luck to you and your little girl and her father. Thank you again for sharing.

  330. I don't know what to say. I read your post over and over because somehow it helps me deal with the nightmare that we are going through with my 4-year-old daughter's recent diagnosis with cancer. The pain is unbelievable. The horror of having to make these decisions for her that will permanently affect her health. The nightmare of living with the spectre of loss hanging over us every day. Thank you for sharing with us.

  331. Hi Jennifer–I know you from FLX but didn't know your daughter's story. I have a similarly horrendous story–worse in some ways–so yours made me cry. Very well told. Truthful and moving. I can hardly tell my story sometimes because I'm so bitter about so many things. Plus my daughter is old enough to read it. Will you be writing a memoir about this?

  332. i am sitting here at my computer and the tears are streaming down. i dealt with a dreadful and frightening problem with my daughter which fortunately ended well, but i will never forget the intensity of the fear of losing her that you captured it so bravely and nakedly. i hope you continue to experience the joy that your daughter obviously brings to you despite all the hardship. and you're right–no study can quantify that.

  333. Jennifer – I am a KU grad, c '83, broadcast journalism, now working in my field as a PR director. I was reading my KU Alumni magazine; I typically just flip the pages and look at what folks are doing from my graduating class. Then, I ran across "For Jessica." I think I only read it because a close friend recently passed. And, another friend was remembering the death of her daughter a year ago. You are a strong woman. Strong enough to kill ten men and Satan. Despite all, remain prayerful.

  334. One of the most powerful and real pieces of writing I've ever come across. So very glad I did find it- you are an inspiration and a role model to every person who's ever had to go through unbelievable hardships- your daughter is lucky to have you. This made me cry because it's just so real- thank you for sharing your daughter's story. I think you are truly amazing.

  335. You essay is so comforting to me. It's a combination of your vibe and your story. I always end up on this page and reading feverishly when I'm a mess. And without fail your strength inspires me to pick up my pieces and put my head back on straighter than anyone directly trying to help me could. Because in the end only I have the tools to fix myself and for some unknown but probably excellent reason, talking to other people doesn't bring them out. They can't just hand me strength, leaning that hard on other people is a weak, faulty plan. It's all about inspiration.
    Thank you for telling your story.

  336. This essay should win a prize. Not that you want it, or that it would make any difference in your day. I haven’t read anything else here, and this was written two years ago so I don’t know what’s going on now in your life. But I do have a couple of things I want to say before I read more.

    First, I found this article from another blog “Gluten-Free Girl and The Chef” while guilelessly reading about how to make gluten-free granola. The linking phrase that brought me here was “pulses into pain so great you don’t know how to go on” so of course I had to follow it. I so needed this exact article at this exact time. Sunday I had a sort of mental break down, and today (Tuesday) I was just getting my breath back. Thank you.

    Second, the name of my paper goods business is “Pretty Charmed” which is kind of inline with part of your subject here – what really is happiness? What you decide to do with what you have. That’s happiness and I know people with tons of things I wish I had and they are NOT happy. I had a son die at the age of 24 from a seizure (while driving, at 4:00 on a Wednesday afternoon right before family night at our house) and a sister, one year younger than me, die at the age of 38 of an aneurism right after surgery. So many more tragedies in my life, but mostly they were mine. So what do I name my company? Pretty Charmed of course! I still have a daughter, age almost 23, that is perfectly healthy and charming and beautiful. And a new (12 years new) husband that I adore and makes me smile everyday as though that’s his sole mission in life.

    Some days I fail. Mostly I’m bright, cheerful and fearless. But then there is that one day. Dark, ominous and full of despair. Never have I mentioned these days on a blog, in a comment or to anyone else. My husband and my daughter are the only ones that know….and they share my grief, so they understand. They have their days too, but I think mine are darker, blacker. But then the sun comes out and bathes my soul and my gardens with sunshine and sparkles, and hope prevails….we shall prevail.

  337. I can’t find the words to tell you how incredible I think you are; how beautiful and moving this piece was. No words are good enough.

  338. I, too, have traveled a drastically different path than most parents because of a child’s medical needs, but I think the saddest thing are the comments that you stopped believing in a benevolent god and that you’d be willing to take on Satan. When I found out my daughter was not following the expected road, I cried, wept, sobbed for hours on and off for days. I did scream at God, but never did I once think He did this to her. He didn’t do it to your daughter either. Would you trade your firefly and counting star moments for a long commuter’s ride? Would you trade a smile or a hug for a night of holiday hoopla or academic accolades? I doubt it. Look at who she’s become? Look at who you’ve become? Parent-child bonds like yours are an amazing gift from a very good God who was and is and is to come along side you every time so that if necessary you can take it again. As hard as it is to see and hear the comments, people don’t know what they don’t know. My daughter is now 23 and has the most amazing heart and attitude I’ve seen. When she was little, we would read and pray a scripture: “Courage daughter, your faith has restored you to health.” My daughter my have physical differences others will never know, but she has the most healthy attitude toward life, curious children (Mommy what happened?), awkward parents (Shhh, that’s not polite to ask Sweetie), and learning (Mom, why would a parent ever hush a child who just wants to know? Maybe they’ll be the one who discovers the cure, or any cure the world needs?). You both have courage and God never gives us more than we can take. May He bless you with many more moments with your Jessica, each one more precious than the one before.

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