So. Wow. I wrote “For Jessica” as a way to describe to friends what is happening with my daughter and how I’m feeling about it, since it’s very hard for me to talk about it.
Then I shared the link on Twitter and Facebook. Of the few hundred people to whom I’m linked by these sites, I figured ten of the people closest to me would read the post, and maybe three would leave encouraging remarks.
The next thing I knew, I was moderating hundreds of comments and my web master was e-mailing me, going, “You got twenty-two thousand hits in one day.”
So. Wow.
Lessons learned:
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The universe may on occasion suck, but it is full of kind-hearted people who would, in the words of one commenter, give a small piece of their souls to make it better. I don’t think it’s possible for me to express how much the support, generosity, and kindness of absolute strangers has buoyed me and given me more much faith in the future than I have had in a long time. Thank you.
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My ex-husband was not barking questions. He was asking them.
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All teasing aside, my ex-husband is, in fact, amazingly tolerant when you e-mail him, saying, “You should probably read this before the rest of the universe does.” My daughter is lucky to have him as a father, and I’m lucky to have him as a friend.
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You are not alone. I am not alone. Before I break out into a verse of “Kumbaya,” let me just say that what touched me most was when people wrote to me and said, “I thought I was the only . . .” and how glad they were to find out they are not.
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Spam comments are pretty funny when taken in the context of the intensity of this post and the response it generated. The spam comments are like little clueless space aliens wandering around Earth.
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My friends mock me for having the plainest blog in the universe. I have always said that the words matter. Not that I don’t appreciate design as much as the next person. Just that when you have a limited amount of time, resources, and energy, you have to put them in the words, not in the bells and whistles. Thank you for helping me prove that it’s the words that matter.
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You guys have so many stories to tell. I hope you will tell them, and that you will tell me when you’ve told them. One commenter remarked that it isn’t “Welcome to Holland,” it’s “Welcome to Cambodia.” I want to read her story. I want to read all of them.
Many of you have asked where you can send carnations to Jessica at the hospital. I am so moved by how so many people want to make one little girl’s day a little brighter. I have given information to several people whom I know personally, so rest assured that Jessica will be surrounded by red carnations as soon as she wakes up from surgery. For anyone else feeling moved to do something for Jessica, I would love it if you would donate what flowers would cost to the Tuberous Sclerosis Alliance instead. This is the organization that supports research into the congenital disease Jessica has. You can find out more information, including ways to donate, at www.tsalliance.org.
If there is another cause dear to your heart, please give to that instead. And call it a carnation for Jessica.
Many of you have also asked why I don’t write a book about my experiences with Jessica. I have. My agent, the indomitable Neil Salkind, has been trying to find a publisher for it since last August. We have received many rejections, mostly on the grounds of “it’s too painful; it won’t find an audience.”
I have never believed that, and your response to “For Jessica” is my validation. People want to read the truth, even if it is raw and makes them cry. They want to be moved, to feel that there is more to life than just another bathroom to clean or a new pair of shoes to buy.
That does not mean there is an instant book deal, however. (I’m being rejected at the same brisk pace as always.) (That’s the life of a working writer, so I’m used to it.) But my agent did say, “Make this into an e-book, and sell it on your website, so the people who want to read it can read it.”
A good guy, Neil. So, that’s what I’ve done. I’ve saved the manuscript as a pdf file, so, again, no bells and whistles. I uploaded it to e-junkie. Some of the proceeds will go to the Tuberous Sclerosis Alliance; the rest will help defray the expenses associated with Jessica’s hospital stay.
Thank you–all of you–for your warm thoughts, wishes, and prayers. (Hey, I may not believe in a supreme Deity, but that doesn’t mean One doesn’t believe in me.)
I will post here once we’re back home from the hospital. I’m deeply grateful to all of you.
I thank God I stumbled upon your previous post (a link to it on one of the blogs I read). I’ve gone through nothing comparable to your pains, yet I think I understand what you mean. Happiness is not about being smiling and content, happiness is about being ALIVE (not just living, but really ALIVE). A full life will have suffering, sometimes an awful, inimaginable lot of it. “Winning”, in this game that is life, is not about not having any suffering, it’s about being alive even while suffering. (Probably the closest experience I had with this was in the worst phase of going through depression, when I begged my doctor not to give me medication to dull the pain, but to feel it again, because I wasn’t feeling anything at all and this was worse than being in deep spiritual pain. I was an emotional zombie while non-medicated, and it may seem odd, but I welcomed the anxiety attacks and nightmares that came when I started meds. They meant I was able to feel again). You are an inspiration, and what you shared about your daughter made me love her a bit already. You both are in my prayers. And yes, the Deity in who I believe will keep you both in His heart even if you don’t believe in Him
Love, love, love, and hope that I will buy your ebook as soon as my budget gets more stable (work troubles).
Oh, and also, I know (as an ex-academic myself) tons of academics who have gone through deep suffering in their life (sudden loss of a child, suicide attempts, deep abuse in childhood, children with physical or mental health problems, you name it) and would not agree with the academic who did the study. Children don’t bring happiness because they make us more content, they bring happiness because they make us more alive, and because they are a treasure (that can be painful and bring suffering, but a treasure indeed). I don’t have children yet, and I do realize that they open the door to a raw suffering unlike anything I have ever felt, but I want to have children. Even knowing that anything can happen.
Praying for you all today. Know that you are in the thoughts of so many people who are pulling for you all. I’ve had this date etched in my mind since I first read the post a few weeks ago. Sending strength to Jessica…