April 2, 2013 mcfadyena

The Unspeakable

For One MinuteEmily Rapp, mother to a child with Tay-Sachs (a Lysosomal Storage Disease like MPS II) and author of the New York Times article entitled ‘Notes From a Dragon Mom’ (click here to read it) to which I’ve referred more than once, has written a book entitled ‘The Still Point of the Turning World (if you click on the title you can read a Q & A with Rapp about her book).’ Knowledge about this new book quickly filtered through our MPS community. The MPS II moms I know recommended I not read the excerpt of the book, which was about receiving the diagnosis (click here to read the excerpt), because it brought back too many emotions. Of course I read it, I couldn’t not. Rapp is a brilliant writer. Maybe I think she’s brilliant because I feel connected to her as a dragon mom (Emily, can MPS moms be dragon moms too?) and have experienced the urge to go back or run away- Rapp’s urge was to swallow Ronan so they could go back to when life was okay, mine was to buy a cabin in the woods. For weeks after Trey’s diagnosis of MPS II, all I could imagine when I thought about how to go on, was visualizing Trey and I huddled in a cabin isolated in the woods, snuggling and hugging and loving, far away from everyone and everything. More likely though, I think she’s just a gifted writer. I think that anyone who picks up her book will be able to feel her through her writing… if you dare.
Which is one of her points. Most people who aren’t dragon parents won’t want to. Go there. In her NY Times article, she writes:
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.
She also addresses this in an interview about her book:
Parenting.com: Is there anything you wish parents of healthy children would take away from this book?
Rapp: I wish parents of healthy children wouldn’t be smug about it. There’s something about smug parents that really hacks me off.
Parenting.com: Smug how?
Rapp: I hear this a lot from parents, and it’s like how is this in any way helpful? “Looking at your life makes me feel blessed.” Which is another way of saying “I’m glad I’m not you.”
Parenting.com: What a horrible thing to say.
Rapp: It’s disgusting. And what I want to say but don’t say is “you don’t know what’s going to happen.” I don’t wish anyone ill. But you don’t know what’s going to happen to your children, so you better enjoy them now. They could drown in a pool or get leukemia or shoot themselves in the head when they’re 30.
People don’t want to hear that. But don’t look at me and put that sympathy on me, because you don’t know when chaos will hit you. And it will. I have a great life. It’s a sad, complicated, beautiful, strange life. It’s mine.
I really like her comment: ‘It’s mine.’ I agree. My life with MPS II may not be what we dream about before having kids and you may count your blessings that it’s not yours, but this life is mine. And it’s great. And I LOVE it. I also like her story because I’ve felt so many of the things she’s felt. The excerpt about diagnosis definitely caught me. But you know what stuck with me while I was falling asleep? And what sits with me this morning and what led to this blog? This:
Parenting.com: This book is all about living that knowledge that the end is coming. Now that you’re on the other side, is there something you would tell the you who was living in that?
Rapp: I would tell the me who was living that that when he died I would be relieved. And I was. I don’t know if there’s any right way to grieve. But when Ronan was diagnosed, it was like he died on that day. It was like he got hit by a truck. 
After reading that I asked myself: Will I be relieved? Did Trey die on D-day? Did I feel like Trey got hit by a truck? The answer to the last two questions is no. My journey with Trey and MPS II has been different than Emily’s with Ronan and Tay-Sach’s in that I have had 3x the amount of time so far with Trey than Emily had with Ronan. I also had 4 years of hope that Trey’s brain wouldn’t be affected and then the hope gifted to us through the trial. Trey is still alive and happy and learning. As to the first question, I wonder. I don’t ‘go there’ often. With IT and future treatments, maybe I won’t have to go there. But with Ryan in North Carolina this morning as Trey got his 19th dose of intrathecal enzyme, I wonder about the first question. UNC and trial trips are so loaded and intense for me, Ryan has taken them on for a couple of months so I can have a break. The night before every IV ERT infusion, I pray the next day will go well. With every check up there is always the ‘what if.’ And then there are multiple surgeries… When it comes to Trey’s life, I have fought for every step, for every service, for appointments, for procedures, for life. I would not have done it any other way, I would do anything for Trey, I love Trey and I love our life more than anything and am grateful for every second I have with him, but when Emily said that when Ronan died she felt relief, it feels heart-wrenching that on some level I understand.


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