Ryan is with Trey right now, getting his fine and gross motor skills assessed. I am sitting in the waiting room. It is our third appointment of the day. First, Trey had 1.5 hours of cognitive testing, followed by an hour long audiology test. 20 minute break for lunch, now more tests and at 3pm Trey will have bloodwork, vitals, a neuro and vision exam while Ryan and I have the opportunity to speak with Dr. Muenzer and ask more questions we have about this trial.
The port surgery was somewhat stressful, but as I have mentioned to many, this trip is NOTHING compared to the intense anxiety and fear of previous trips. As much as people tell me this is not a vacation, it’s more than a vacation. It’s better than a vacation. It’s a trip during which our son will begin to be saved from the progressive disease he is today, WAS tomorrow, dying from.
It’s not a cure and Trey may never be ‘normal’ (I dislike that word intensely, not only for Trey, but for all of us who need and try ‘fit’ the mould), but he won’t be getting worse. After your child is diagnosed with a progressive disease, NOTHING is better than that.
In the two weeks since we arrived at UNC, Trey’s had major port surgery, probably more than 20 appointments, and all three of our kids have had the flu. However, we’ve also gone to The Museum of Life and Science, snuggled, eaten dinner together, gone swimming, played pool, read, gone putting, shopped for UNC paraphernalia, watched lots of TV (a treat for us), and snuggled some more. It’s been pretty great.
A Facebook message from my friend Melissa (pictured above) started getting me even more excited about tomorrow. Tomorrow Trey will get his first dose of enzyme into the brain. For those of you who are lost, Trey has one port-a-cath through which he gets weekly IV Elaprase which puts the enzyme he is missing into his body (I do those infusions at home). However, the protein in Elaprase is too big to cross the blood brain barrier and thus cannot help the brain. Doctors found a solution for that problem by putting the enzyme directly into the brain. Last Friday, as part of the MPS II IT trial at UNC, Trey had a second port-a-cath placed, through which he will receive monthly IT Elaprase infusions at UNC hospital.
This is what Melissa said: “The rest of your life starts tomorrow. Like diagnosis, tomorrow starts a new before and after.” She has a way with words. Because she knows. Her son Case was diagnosed with severe MPS II Hunter Syndrome (meaning the brain is affected). He is also in the trial. Last week I got to meet with Melissa. She is so excited by all the changes she sees in Case. From attention and learning, which the drug is meant to help with (but as it is experimental, not guaranteed), but also physical changes from range of motion and gait to head shape, heart, hearing, and more.
This morning I read a story from The New York Times about a mom whose son has Tay-Sachs (http://nyti.ms/pl7Ch3), a progressive disease in which death is guaranteed by age three. It made me think about my last post where I blogged that I don’t know how parents without hope go on. I figured it out. It’s called love. You go on because of love. This mother comments on Amy Chua’s “Battle Hymn of the Tiger Mother,” the latest handbook for parents hoping to guide their children along a path to success and wealth. She will never be a tiger mom. Instead, she says: “We are dragon parents: fierce and loyal and loving as hell… 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.”
Although our paths are different, I am a dragon mom too. Her story feels like mine. Most people don’t want to hear what I have to say. It’s too deep, too real. The people I am close with today aren’t scared to get dirty and talk about more than what colour to paint our house and what flowers to plant in our garden. And as much as that has drawn a line in the sand with many people I used to know and with new people I meet, I like being a dragon mom. I don’t want to be 80 years old and have regrets, to wish I lived. Because of Trey, there is no chance of me doing that now. I am a dragon mom. And I am so grateful to my family (I’d call them my friends, but when you’re a dragon mom, your friends become your family) for joining my dragon journey. I love you.
I have so many big emotions going on, not overwhelming emotions, just big ones. Excited ones. Grateful ones. Life can be so many things, especially with a child who has a progressive disease. But you know what? I am so glad for it. I am glad to be Trey’s mom and to be living the life I am leading. There is nothing better.
