I am looking at the neurosurgeon’s business card. I’m supposed to call the number this morning to schedule Jessica’s surgery. I will talk to June, whom I have talked to before, and she will be very kind, and it will be very easy, in the sense that she will not be a pain in the ass and put me on hold fifteen times.
I know what the call will set in motion, and I am just fresh out of any capacity to deal with it. I have been looking for my anger and my bitterness, my rage at the injustice of what the universe has done to my daughter, and I can’t find it. The rage usually carries me through. But it has disappeared, and there is just a hard ache where it was, and I don’t quite know what to do next. I think maybe it means this time I am broken, and the universe has won, and yet I can’t even seem to get worked up over that. I am not even incensed over the dumbass things people have been saying to me. “They’re trying to find the right thing to say,” I think, and you know that’s just wrong. When have I ever cared what people meant instead of what they said?
Here is a thing I will never forget. Jessica, in the plastic chair next to me, listening to the neurosurgeon speak, the paleness of her face when he says what the studies have shown.
“I thought we already did surgery to make me better,” she says.
Yes, the neurosurgeon tells her. Yes, but it didn’t work, and your condition has worsened. He takes her face in his hands. “I am so sorry, Jessie,” he says. “I am so so sorry.”
That is when the tears start. They’re not the huge wracking sobs like I will have later on, alone. Her tears are quiet. She is devastated. Worse than that.
Jessica is afraid.
She is afraid because I have always told her the truth, as if I couldn’t have just lied to her and saved us all a lot of trouble. What would have been wrong with lying? I could have started when she was young, and wanted to know about the scar on her skull, and I could have told her anything. I did not have to tell her about the disease she was born with, or the way the doctors took out half her brain and threw it away. And when she was older, diagnosed with another even scarier disease, I could have lied about that. “No worries,” is what I could have said. “It’s not a big deal.”
It’s not like I don’t lie all the time to other people for the sake of expediency. “I do love that new haircut and no you don’t look like you’ve gained fifteen pounds.” You’d think I could lie just as well to my own daughter.
The problem is that a long time ago, I enumerated the rules that Jessica and I live our relationship by, and one of those rules is, “We will never lie to each other.” Which, now that I consider it, is a stupid rule. We have other rules, like, “We love each other no matter what,” and I don’t know why I couldn’t have just left it at that. But no, in a stroke of idiocy, which at the time I mistook for wisdom, I came up with “We will never lie to each other,” and so we never have. A long time later I realized this is because Jessica does not know how, so we didn’t really need the rule in the first place. But it was too late by then.
“Tell me what we are going to do,” she demands, grabbing my wrist as we sit at a table in the small snack shop on the second floor of the hospital. Her father is buying her a Diet Coke. She is clutching a pink stuffed dog in her other hand. “What did the doctor mean by loss of function?”
And so I tell her the truth because I always do. It is only later, too late, that I think, “What the hell would have been wrong with a lie?”
But I tell her what loss of function means, and why a skin graft is needed for this surgery and not for the last one, and where the skin will be taken from, and I even tell her what the risks of the surgery are because it is her life and her body, and she ought to know. That’s what I say to myself, what I have always said to myself: the world will try to disempower my daughter but I never will. And for some dumbass reason, I think this means I can never lie to her.
I answer every question I can. She cries a little more, but everything about her is dignified. And sometimes when it hurts too much for me to speak, her father steps in, gently explaining. He’s always been the world’s worst liar and so he doesn’t even try.
“I do not want to be in a wheelchair,” she says.
“I know, honey,” I say. “And that is why the doctor says you need this surgery.”
“The bandage will hurt coming off.”
“Probably ,” I say.
“They always do.” She looks at the pink stuffed dog. She takes a sip of Diet Coke. I hate the fucking universe.
“Should we get some lunch?” her father says.
“Lunch would be good.”
I have no appetite. I’m a stress eater, and this is the first time in my life when I can’t eat anything. There is something wrong with me, and I don’t know what.
“Will you tell Lisa tonight?” Jessica asks her father. Lisa is his partner, or at least that’s the name I give her on my blog.
“Probably.”
I am glad he has someone to talk to. We have always been able to make decisions about Jessica together, but we have never been able to help each other through.
“Ready to go?” He has Jessica today, and I won’t see her again until tomorrow. We take the elevator to the parking garage and they get off on their floor and I go down one more, alone in the elevator, thinking how many times I have been here before. You would think it would get easier, or that I would learn to expect the damned disasters, but it doesn’t and I don’t. I am just as stunned this time as every single time before.
I should have lied to her, I think, but it’s too late now. Or maybe someone should have lied to me. I think I would have liked that a lot.
But no one ever thinks of lying to me. I don’t know why. I’m a fairly gullible person, and I’d be happy to believe in unicorns if someone would just lie to me in a convincing way.
My footsteps echo in the parking garage. I get in the car. I will have to call the neurosurgery office in the morning but right now I just have to go home and do some work. I do, and I pride myself on the fact that no one would ever guess about the wrenching pain. The work has always saved me, it has always been my solace. Jessica’s father has his partner, and I have my books.
I don’t know what Jessica has. This is the first time I believe that we are not enough, her father and I, that we cannot keep the fear at bay for her any longer, that she will have to find a way to do that herself. It’s part of growing up, I suppose, though most people are never tested this way. Maybe that’s why I have always told her the truth, so that she will learn to be strong enough to face it.
I wish she didn’t have to be. I wish she had been given a life like other children have. I wish I could give her mine. I have made those wishes for nearly fifteen years, and today I have one more. Oh my beautiful girl, I think. Please make it through one more time.
Oh, Jennifer–there are just no words (though you always seem to find the right ones, beautifully), but please know that I am thinking of you and Jessica these days and sending love and light your way.
I have been reading your blog for a while now, and feel moved to comment today. Having said that, your strength and resolve to be truthful in your life, in the face of so many hardships, is inspiring. [no words will be enough to comfort you in this time of strife] I truly admire how honestly you life your life. Too many of us do not, regardless of the situation.
It humbles me to think that you have lived with Jessica's illnesses for 15 years, and I can complain about insignificant things.
May you and Jessica traverse the path you have before you with grace and dignity, and emerge the better for having done so. My thoughts are with you both.
My prayers are with you both. Hugs.
You and Jessica are so brave and strong. I am so sorry for your pain and worry. I think the universe is a jackass for doing this to her and don't know why it must be this way. Sending you warm thoughts and hopes that this procedure will work and will be as pain-free as possible.
I completely believe in the power of collective prayer Jennifer, & it will definitely pull Jessica through these difficult days. My thoughts & prayers for Jessica & your family.
My heart and prayers go out to you all.
I'm praying for you, too, Jennifer. Love and hugs to you guys.
Jennifer: My prayers are with you and your daughter. I've gone through a harrowing couple of months figuring out issues with my child's health and I've not been able to put pen to paper. I read your essay and realized that writing has to be part of the therapy. Thank you for that.
May more strength and all the prayers we all have be with you.
I don't know what to say either, you darling darling woman, but I'm here quietly reading and have been for some time. I have no idea how I found you and Jessica, but I did, and I'm listening and her pain and your pain matters to me and I'm wishing with you.
I'm so sorry too. I wish… I wish for you to have unicorns.
Also, I have spent the last 7.5 yrs anticipating disasters to no avail. As hard as I've tried, the universe is more creative than I and always manages to blindside me.
I am sorry for your pain, and for Jessica's fears. I wish so hard that things were not this way for her. For you. You are both in my thoughts and prayers.
I am sorry to hear about the latest obstacle in Jessica's ongoing struggles. It's so completely unfair. I love that you do her the honor of not lying, though. It can't be easy for either one of you, but easy is rarely right. I wish you both the best of luck.
Our thoughts and prayers are with you and the family during this trying times. Hugs.
Jennifer I have no idea what these past 15 years have been like for you guys. The unfairness that can be dealt knows no bounds. My heart aches for little Jessica. I know she's a fighter (always has been always will be). Since day one she has had a lot of "heart" and I believe she will get through this.
Thank you for sharing. You guys are truly the definition of strength.
Keep your chin up.
Some days the universe sucks. Today is one of those days.
This is so moving and honest and wrenching and gorgeous and true. It's given me greater understanding of what it's like to love a child with this kind of outrageous challenge, and what it means to love at large. Thank you so much for sharing this.
Sh*t. A thousand thousand hugs to you and Jessica and her father.
I am just so sorry. Words are meaningless. Perhaps it helps to know your not alone, that there are those of us, strangers I know, out there, crying right along with you. I feel you share Jessica with us, let us peek into her magical and unfair world. And I think you for that.
Would you consider starting a PayPal account for a flower fund? I remember she likes waking up to flowers and I would love to send her a bouquet or money for that.
Damn I am so damn sorry.
Dammit – it isn't fair. None of it. I will be keeping you and Jessica in my thoughts. And I'll buy more flowers too.
I "thank" you for that as well. I hope you consider the flower offer, it would make my husband ( I turned him into a Jessica fan!) and I so happy to help her stay be just a smidgen better.
No day but today, no lives but this one life. Our beloved children, each day we have with them, even in pain, is a blessing and a miracle. Thank you for teaching us this. Wishing for the comfort of pain-free days for you both.
I couldn't post when I read this yesterday. I can't even fathom the level of pain you must feel sometimes. Watching Jessica and seeing the comprehension in her eyes…
I will send good thoughts out in the universe for you and your family. Second guessing is a part of parenting, always wondering if we should have chosen a different road during the tough times, even with happy healthy children. I think you made a very wise choice. You will never have to try and remember exactly what you had told her, you will never have to worry about her overhearing a conversation that would tell her you can't be trusted. It is hard but I honestly think she will be stronger for being able to grow with it and it has made her more ready to deal with her future.
A few days ago I was at Costco and they had a beautiful arrangement of purple iris and white calla lilies. I didn't get them because I have cats and cats and lilies don't mix but I did think of Jessica. I am going to a dinner party this weekend and if they still have them at Costco I will buy them for my non-cat owning hosts.
A few people have generously asked about sending Jessica flowers during her hospitalization. Because she'll be in ICU and then a special unit, she won't be able to have flowers at the hospital (I'll make sure she has some when we get home). She does enjoying getting cards and e-mails, so if any readers would like to do that, you can reach me at jennifer at jenniferlawler dot com. The kindness of our readers means so much to Jess and me.
— Jennifer
I can't speak for anyone else, but
I want you guys to have A LOT of flowers and I want them to come from people who dont even know what you guys look like but who care about you just the same.
Jennifer, I'm so, so sorry. Sending you all my strongest, hardest wishes for courage and strength for both you and Jessica. I just wish there was more I could do. Hugs to you both.
Oh Jennifer. Every time I read about you and Jess – whether here or in a quick Facebook update – I always think that she has been gifted with a mother who is just *perfect for her. Much good juju to you both.
Please let us know when the surgery is scheduled. I'd like to pray for her (and you) during her surgery.