As Long As It’s Healthy

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.
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14 thoughts on “As Long As It’s Healthy

  1. Totally understandable. Every mother loves their child regardless of their situation but I think (not being in the situaiton) that every mother would also hope for good health for their child. Thinking of you and Grayson.

  2. I don't think "as long as it's healthy" is ever offensive? I never thought of it that way at all. I always took it as "wtf, why would I care about its genitals, are you insane?". Because I think really fully WANTING a specific sex is .. kind of insane. (As opposed to "well, I have a boy so a girl would be nice", or "he'd love a little brother", etc. vague but not .. WANTING, if you get the difference?) I really honestly take "as long as it's healthy" to be interpreted as "I want a healthy baby and the rest I don't care about" … which … doesn't mean an unhealthy baby is less loved, just … no one says "I want one that's going to be sick and in pain and where I wonder if it will grow up". And who can begrudge someone saying "I want a healthy baby".And so maybe that is the answer here. "What do you want?" .. "A healthy baby."

  3. Oh, Elizabeth. Tears again. Wanting a child who is healthy does nothing to diminish the love a parent has for a child who is not healthy. We all want that for our children. And we love them.

  4. I agree with andmom, I don't think as long as it's healthy is offensive. It doesn't mean they won't love a baby that is healthy, it means they want their child to be healthy, just like every parent does, even the parents of children who are not healthy. Your brother is amazing with words, as are you. Words fail. Meanings collapse. Abiding with you and your beautiful boy.

  5. Wow, your brother is an amazing writer. That had me in tears!I definitely don't think "as long as its healthy" is offensive. Like people above noted, it's not like people are going to HOPE for their child to have to struggle with illness or disabilities, so of course we're going to pray for healthy children! Praying for you that this 2nd child doesn't have to struggle as much as Grayson has.

  6. Very thought provoking post, making me ponder things I had never thought. I agree with your points and the other comments, I think every parent wants a healthy child, and going a bit shallower, I wanted kids with blue eyes, does that mean I love my brown eyed girls any less? Of course not! A wish is a wish, but it never devalues the reality. Beautifully written, from both you and your brother…you are a well spoken family.

  7. Words fail me now, Elizabeth. What a beautiful message from your brother. I have always taken "It doesn't matter, as long as it's healthy" to mean "My deepest wish is that no pain or sickness ever touch this precious child I am growing." This is my wish for you as well. xo

  8. Oh God, Elizabeth, you just have me floored by your strength and fortitude. I couldn't read this post without crying (what an amazing brother you have!).Of course it matters. Of course you want this baby to be healthy. Of course you want "normalcy" for your child. You want all the same things for this baby that you want for Grayson. I really appreciate this post. I sometimes bristle at "as long as it's healthy" and you've given me new, HEALTHY perspective. (And I agree with you that most people want, or rather view themselves, with one gender over the other. Nothing wrong with that. Why do people think it's wrong?)

  9. I had never even taken the time to think about that common answer and even though we didn't find out gender either time, I actually never said it. I always just said it didn't matter and that we were lucky either way.You and your brother are amazing writers. His letter was breathtaking!!! I love your sweet family and especially Grayson.

  10. I totally understand how you feel. I was just in your shoes. We would not have rolled the dice and tried for another child on our own…but God took it into His hands and now we've got a beautiful healthy little boy! I love Reagan more than anything…but I wouldn't wish this special needs/medically fragile world on anyone! You are certainly in my thoughts and prayers!!

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