The D Word

If you’ve read this blog with any regularity or seen my Facebook statuses at all, I’ve been vague about Eli’s primary problem. It’s not because I like to vaguebook, it’s mostly because we don’t have a confirmed diagnosis (and might never have one). If things end up better than we expect, I don’t want to spend years speaking with certainty about his issues and then have him turn out average when I commandeered a serious diagnosis for years, and have people think I was just being over-dramatic or making it up the whole time. But another reason for this is I am still struggling with denial, with hoping he WILL turn out “average” against all odds, with wondering how and why this happened to us. I see other parents who seem so well adjusted, and it makes me feel simultaneously jealous and guilty, like there is yet another thing wrong with me that makes me unable to look on the bright side 100% of the time. Or even 50% of the time. Anyway.

Dwarfism. That’s what they think it is. I haven’t yet been able to even say that word when I talk about Eli. I don’t know why…if I have learned anything over the past several months, it’s that dwarfism is not a bad thing. It’s just a different thing. But I just can’t say it. I’ve tried, and my brain just stops my mouth every time. The broader term is skeletal dysplasia (which I have used a few times), but that’s not a term laypeople can place immediately. Everyone knows what dwarfism means. Everyone knows what it looks like. No one with dwarfism can walk through a grocery store and not be noticed by everyone else. At this point Eli still looks like any other 10-month old, albeit on the small side. You can't tell he has short fingers and disproportionately short arms and legs unless you know what to look for. But someday soon when people find out how old he is, they’ll stare a little harder as they try to figure out what’s wrong, even if they can’t put their finger on it. And in a few years people will probably mistake him for much younger than he is, and they will most certainly be confused when they discover his age. Then he’ll go to school and require special accommodations to reach light switches and coat racks, and in a few more years he’ll probably need special chairs in his classroom and at lunch, so he can be comfortable sitting for long periods of time. We’ll face the dilemma of our home – should we lower the sink in his bathroom, put in a second (lower) shower head, move the microwave down to the counter so he can reach it? Or should we leave everything how it is since he will have to adapt to an average height world at some point? (There are people in both camps.)

It’s hard to explain how I’ve felt throughout this process so far. Will and I have been on the same page for the most part, but I have had my share of disagreements with other close friends and family. What I think people fail to remember is there is a grieving process involved here. I don’t grieve for myself, and that’s where some people get it wrong. I love Eli. I think he’s fabulous. Nothing will ever change that. Nothing makes me happier than walking in the door from work and seeing his face light up as he claps his hands in delight that I’m home. Yes, there is a feeling of loss because the new-parenthood we expected is not what we got, but that becomes easier to accept with time. But I worry for him, and I grieve for him when I imagine him facing the hardships I know lie ahead. What I lie awake at night mulling over is the first time Eli realizes he’s different, and he’s different in a way that means other people will think less of him. Just that very first time someone says something mean to him, for no other reason than to intentionally hurt him. When he looks at me in that moment, and the light has left his eyes, and he realizes the world is not always a wonderful place. What am I going to do? How will I respond gracefully? How will I maintain composure and not just sit down and cry right in front of him (or worse, react with anger at the perpetrator…I know I’ll want to, but I have to set a good example). And I know EVERY parent faces that and every child has that moment, but it’s not the same. It’s just not. Parents of average kids are not already worried about that moment when they look at their two-week-old.

I worry about him playing sports. I’m not really athletic and Will isn’t either, but what if he is and he has an ignorant gym teacher who won’t let him participate as much? Will he be able to snow ski? That sport is the beginning and end of my athleticism, but my entire family loves to ski and I never envisioned a world in which I DIDN’T send my child to ski lessons at the first possible moment. What about prom? What about college, being able to walk across campus and make it to class in time (A&M is a big place…), living on his own in a world not meant for him? What about finding a job and getting married? Sure, discriminating against little people during the hiring process is technically illegal but I know it happens. What if he wants to have kids? By that time will we know what he has, and know if he will pass it on to his own children, or if there is a way to make sure he doesn't? Will he CARE if he passes it down to his kids? By that point, will I care?

All those questions and feelings are wrapped up in that word I can’t make myself say. And it goes back to that grief process. There are no rules on dealing with a situation like this. There are no instructions telling us how to handle this. People have tried to tell me how I should feel and what I should think and what “bright side” I should look on, but it doesn’t work like that. They won’t be there when he comes home from school upset because this one kid in his class keeps calling him a baby because he’s so small. They won’t be there when we walk through the mall and everyone stares. They won’t have to be the one to decide what to say when he goes to a new school in junior high and no one knows him, and he’s discouraged because he has to be “that kid” for months until everyone gets used to him. Over Christmas break a few family members wanted to take pictures with Eli wearing elf ears and while they did it I stayed in the kitchen and cried. I know no one meant anything by it and it was completely harmless, but I don’t like the connotation of him being an elf, because elves are short; and I didn’t know how to articulate that to everyone because I knew how ridiculous it sounded. Every time I get him dressed and I roll up his pants legs and shirt sleeves two or three turns, it reminds me of that word I can’t make myself say, and I hate it.

I wish I had a high note to end this on, but I don’t. My whole goal with this blog was to be honest and not sugar-coat things for the sake of social media perfection. I’m a pessimist by nature, much as I wish I wasn’t. There are a few positives I focus on every day, the first one being how happy he is. I say it all the time but it’s always true, he is the happiest baby I’ve ever met. I really hope his current disposition is a sign of his personality later in life. Second, the family support we have. My parents are already hopeless, and I know all Eli will have to do is THINK about something and they will make his wish come true (I can’t say I’m too excited about how much they are going to spoil him), and both of our families adore him, but that support also extends to Will and me. They might not always agree with my outlook and sometimes they say things that really don’t help at all, but we know their hearts are in the right place, and that knowledge is beyond comforting. Finally, for me, knowing Will and I are a united front helps so much. I’m planning on doing a post about how having a sick kid affects your relationships, primarily marriage, so I won’t elaborate on that yet. But there’s nothing like knowing Will has my back (and I have his). We may not have any answers, and we have no idea what we're doing, but we're navigating this rarely traveled path together and doing the best we can. I wouldn’t change Eli for the world…but I’ll do my best to change the world for him. 

Naptime. It's casual. 

He already ADORES Lucy and Gatsby.