I recently commented on a post in a private FB group of parents with kids with Mitochondrial Disease. The poster basically was expressing her displeasure with pregnant women who respond to the question “Do you want a boy or girl?” with “Doesn’t matter, as long as it’s healthy.”
The poster’s complaint with this answer is well, what if your child isn’t healthy? Will he or she be less valuable, less loved? To which 99% of people would answer, of course not. But some parents with sick children are offended by it because they feel it writes off their kids.
Before I had Grayson, I had the same feeling: don’t say that, because healthy or not, you will love that baby the same. And yes, I obviously still feel that way. I love Grayson with all my heart and soul. BUT, with this next baby, love not being an issue, it matters if he or she is healthy.
It is NOT ok that Grayson has Leigh’s Disease. It’s NOT ok that at two years old, he can’t even sit up on his own, nevermind crawl or walk. It’s NOT ok that he gets 100% of his food through a tube in his stomach and he vomits multiple times per week, sometimes per day, that his legs shake and are so stiff that it’s difficult to hold him. It’s NOT ok that he can’t call me Momma or tell me what he wants, and that he can only see a few inches in front of his face. And it’s definitely NOT ok that I will probably outlive him.
So when people ask me what I want this next baby to be, of course I have a knee-jerk gender preference- I think most people do. But I want healthy, above all else. Because if this baby has Leigh’s, it will NOT be ok. I will survive, and I will do what I have to do. I will love the baby with everything I have. But it will shatter me- emotionally, financially, and maybe spiritually.
My brother, who is way better with words than me, put the pain of our situation so eloquently in a post yesterday:
This past weekend, Megan and I took a trip down to Houston to celebrate the second birthday of our precious nephew, Grayson. Life has dealt Grayson a difficult hand. Or rather, it has not dealt him much of a hand at all. Most kids grow up learning or wanting to learn how to turn life into a winning hand that can be slapped down on the table with force and energy and pride. Grayson cannot even hold his cards properly. And they are already crumbling to dust in his hands. Two weeks ago, he was diagnosed with Leigh’s disease, a fatal form of mitochondrial disease, which is science-speak for: every cell in your body is broken. Kids with Leigh’s often don’t make it to their fourth birthday. We do not know how long Grayson will live, but he will most likely take his last breath as a child. When I heard the news, I emailed my sister, Elizabeth, Grayson’s mom. I wrote “I’m so sorry. Words fail. Meaning collapses. I want you to know that I love you. I really do. And I love Grayson.” Words do fail. Meaning has collapsed. Even the words “I love you” sound out across a dark abyss, not one that dazzles with mystery, but one that absorbs every warmth with a mute coldness. Even cursing gets no resonance here. Here there are no twinkling little stars, reassuring us gently of a promising future. There is only the mute roar of disaster, of the loss (dis-) of every guiding star (-aster). I am, or try to be some of the time, a praying type. But I confess an inability to pray “for” Grayson or “for” his/my family. What does one pray “for”? Every prayer seems like blasphemy, not against a “God” who might reverse the disaster, but against the face and laughter and tears of that precious little boy. When I bend down with a smile and meet Grayson face to face and his eyes flit back and forth, straining to function normally, straining but always failing to see me, perhaps in that moment prayer happens. But this is prayer that will never make it into any prayer book, that will never generate religious “meaning.” It is prayer that meets the mute roar of diaster with a sigh deeper than words. I love you, Grayson.
So please understand, when my answer to your question is “As long as it’s healthy”, that I am not trying to offend you or discount the amazing lives and impact of special needs children. But to me, and to my family, it matters.