A few days ago an article from the NY times was posted on a friend's Facebook. I've been thinking about this article for days. It's put me through several different emotions, and has also put some things into perspective for me. I have decided to share it with you, but first I have some things to say about it. Just like any normal person would, I have my days of anger and sadness. The days where I question the lord and why he would give my son a life of pain and complication. Don't get me wrong, I am beyond thankful to him for saving my sons life and I do give him credit where it is due, but lets face it, Parker will be two months old tomorrow, and he spent the first 40 days of his life confined to a hospital, had major organs removed, has labs drawn 1-2 times a week, sees his kidney team every 2 weeks, his pediatrician every month, and will need an organ transplant when he's 20-22 pounds. In the meantime before transplant we live in fear of seizures, strokes, and infection- which could lead to death. After transplant he will be on anti-rejection medicine for the rest of his life, see his kidney team multiple times a month, have labs drawn, and live in fear that his new kidney will fail. For the rest of his life, he will have to monitor his liver, because guess what, this disease affects his liver, too. Sounds horrible when it's all spelled out in front of you, doesn't it? What's hard to believe, after you read all of that, is that so far, his case is much better than a lot of ARPKD kids. Like I said, I give the Lord all of the credit in the world for saving my sons life, and I thank him daily for that, but the mother in me also has the days where I am mad at him, because ultimately he chose this painful life for Parker instead of a life of normalcy. And if I could, I would take all of it away from Parker and endure it myself, but I can't. So since I can't fix it, I get mad. I've learned from others that this is my healing process and that one day I will look back on it and know that god does everything for a reason. I am working on that as we speak, which brings me to the Dragon Mom. Right before this article was posted on Facebook I was having one of those nights. I questioned "Why Parker?" once again and thought of all the people that I know who take life for granted. I remember thinking that those people don't know how good they have it and that they roll through life so unappreciative. And then I got a slap in the face...
Notes From a Dragon Mom
Alexandra Huddleston for The New York Times
Emily Rapp and her son, Ronan, who has Tay-Sachs disease.
By EMILY RAPP
Published: October 15, 2011
MY son, Ronan, looks at me and raises one eyebrow. His eyes are bright and focused. Ronan means “little seal” in Irish and it suits him.I want to stop here, before the dreadful hitch: my son is 18 months old and will likely die before his third birthday. Ronan was born with Tay-Sachs, a rare genetic disorder. He is slowly regressing into a vegetative state. He’ll become paralyzed, experience seizures, lose all of his senses before he dies. There is no treatment and no cure.
How do you parent without a net, without a future, knowing that you will lose your child, bit by torturous bit?
Depressing? Sure. But not without wisdom, not without a profound understanding of the human experience or without hard-won lessons, forged through grief and helplessness and deeply committed love about how to be not just a mother or a father but how to be human.
Parenting advice is, by its nature, future-directed. I know. I read all the parenting magazines. During my pregnancy, I devoured every parenting guide I could find. My husband and I thought about a lot of questions they raised: will breast-feeding enhance his brain function? Will music class improve his cognitive skills? Will the right preschool help him get into the right college? I made lists. I planned and plotted and hoped. Future, future, future.
We never thought about how we might parent a child for whom there is no future. The prenatal test I took for Tay-Sachs was negative; our genetic counselor didn’t think I needed the test, since I’m not Jewish and Tay-Sachs is thought to be a greater risk among Ashkenazi Jews. Being somewhat obsessive about such matters, I had it done anyway, twice. Both times the results were negative.
Our parenting plans, our lists, the advice I read before Ronan’s birth make little sense now. No matter what we do for Ronan — choose organic or non-organic food; cloth diapers or disposable; attachment parenting or sleep training — he will die. All the decisions that once mattered so much, don’t.
All parents want their children to prosper, to matter. We enroll our children in music class or take them to Mommy and Me swim class because we hope they will manifest some fabulous talent that will set them — and therefore us, the proud parents — apart. Traditional parenting naturally presumes a future where the child outlives the parent and ideally becomes successful, perhaps even achieves something spectacular. Amy Chua’s “Battle Hymn of the Tiger Mother” is only the latest handbook for parents hoping to guide their children along this path. It’s animated by the idea that good, careful investments in your children will pay off in the form of happy endings, rich futures.
But I have abandoned the future, and with it any visions of Ronan’s scoring a perfect SAT or sprinting across a stage with a Harvard diploma in his hand. We’re not waiting for Ronan to make us proud. We don’t expect future returns on our investment. We've chucked the graphs of developmental milestones and we avoid parenting magazines at the pediatrician’s office. Ronan has given us a terrible freedom from expectations, a magical world where there are no goals, no prizes to win, no outcomes to monitor, discuss, compare.
But the day-to-day is often peaceful, even blissful. This was my day with my son: cuddling, feedings, naps. He can watch television if he wants to; he can have pudding and cheesecake for every meal. We are a very permissive household. We do our best for our kid, feed him fresh food, brush his teeth, make sure he’s clean and warm and well rested and ... healthy? Well, no. The only task here is to love, and we tell him we love him, not caring that he doesn't understand the words. We encourage him to do what he can, though unlike us he is without ego or ambition.
Ronan won’t prosper or succeed in the way we have come to understand this term in our culture; he will never walk or say “Mama,” and I will never be a tiger mom. The mothers and fathers of terminally ill children are something else entirely. Our goals are simple and terrible: to help our children live with minimal discomfort and maximum dignity. We will not launch our children into a bright and promising future, but see them into early graves. We will prepare to lose them and then, impossibly, to live on after that gutting loss. This requires a new ferocity, a new way of thinking, a new animal. We are dragon parents: fierce and loyal and loving as hell. Our experiences have taught us how to parent for the here and now, for the sake of parenting, for the humanity implicit in the act itself, though this runs counter to traditional wisdom and advice.
NOBODY asks dragon parents for advice; we’re too scary. Our grief is primal and unwieldy and embarrassing. The certainties that most parents face are irrelevant to us, and frankly, kind of silly. Our narratives are grisly, the stakes impossibly high. Conversations about which seizure medication is most effective or how to feed children who have trouble swallowing are tantamount to breathing fire at a dinner party or on the playground. Like Dr. Spock suddenly possessed by Al Gore, we offer inconvenient truths and foretell disaster.
And there’s this: parents who, particularly in this country, are expected to be superhuman, to raise children who outpace all their peers, don’t want to see what we see. The long truth about their children, about themselves: that none of it is forever.
I would walk through a tunnel of fire if it would save my son. I would take my chances on a stripped battlefield with a sling and a rock à la David and Goliath if it would make a difference. But it won’t. I can roar all I want about the unfairness of this ridiculous disease, but the facts remain. What I can do is protect my son from as much pain as possible, and then finally do the hardest thing of all, a thing most parents will thankfully never have to do: I will love him to the end of his life, and then I will let him go.
But today Ronan is alive and his breath smells like sweet rice. I can see my reflection in his greenish-gold eyes. I am a reflection of him and not the other way around, and this is, I believe, as it should be. This is a love story, and like all great love stories, it is a story of loss. Parenting, I’ve come to understand, is about loving my child today. Now. In fact, for any parent, anywhere, that’s all there is.
The End.
....So as of today I have decided that I will no longer be ungrateful or unappreciative of what I have. I will embrace each new challenge that is thrown our way and thank god each time we cross another hurdle. I cannot promise that I will not fall off of the bandwagon, or that I will not have moments of anger. I can, however, promise that I will do my best to remember God's grace and continue to live for today instead of holding on to the past. I will strive for the best for Parker, but if he wants pudding and cheesecake for each meal, then that's what we shall have.
