Life Lately

It’s been a while, but there haven't been many blog-worthy happenings in our world. I could update with every milestone Eli meets or misses, every therapy he has, etc. but it’s really not that interesting, and this has become more about me and how I’m dealing with his diagnosis versus nonstop updates on his condition.

Eli is actually doing great. He is behind on milestones, which we knew/expected, and he has different therapies (speech, physical, occupational) on a weekly basis, but when he’s out and about no one would ever know he was anything but a normal kid (unless they asked how old he is…I am still dreading the next time that happens). I think this makes some things easier and some harder. Of course, I feel lucky that he can ride in a normal car seat, be around other kids and their germs, wear clothes only a size or so smaller than average; and I’m so glad we don’t have to worry too much about spinal compression issues or sleep apnea and trying to make him sleep with a CPAP machine. I think it’s human nature to remind yourself “it could always be worse,” and I do that regularly.

But at the same time, I believe it’s easy for people to lose sight of the struggles we do have and think, “well their kid is basically normal, just short, why is she so upset?” Recently his physical therapist brought him a walker to practice with, since he isn’t walking by himself yet (or standing independently). And for Eli, the walker is temporary. There are other kids with dwarfism that are wheelchair bound or need walking assistance for life. “It could be worse.” But it’s still shocking to go pick him up and see him using this hideous metal contraption you didn’t know he needed. I didn’t realize it was that serious yet. When you imagine your child learning to walk, you do NOT imagine physical therapists and ugly walkers involved. We also found out he needs glasses, and if getting him fitted was any indication, he is NOT going to like them and it’s going to be a struggle to keep them on his face. Things like that weigh heavily on my mind, whether they should or not. There's a lot more that goes into a rare diagnosis than most people think. The other day, I was talking with a friend and she asked (in a very well-meaning way) if Eli went to the doctor a lot or just had to go once a year. It was kind of funny to even imagine how easy life would be if we only had to go to one doctor once a year for normal checkups. It is getting better, we now sometimes have three weeks in a row when we don’t go to a single hospital or doctor’s office, and it’s AMAZING. But it’s taken us 17 months to get to that point. I’m pretty sure he’s had more doctor’s appointments already than I ever have in my entire life. Maybe more than Will and me combined.

And sometimes things just come out of the blue. We went to the lake a couple weekends ago and Eli normally loves the water, but he hated the lake. I think it’s because he has to wear a life jacket and it’s unwieldy and uncomfortable. And in searching some of the Facebook groups I’m in for parents of kids with dwarfism, I realized that he will probably never be able to just go get a life jacket off the rack at a store and wear it. It won’t ever fit him right. In some cases a life jacket might even be MORE dangerous for him than no life jacket at all. I know that’s a minor thing, but I’ve tried really hard to think of every issue he might have in the future and when something like this surprises me it just reminds me of how I CAN’T prepare for everything and there will always be these weird, uncommon problems that aren’t even on other people’s radars.

Lately, I’ve been thinking a lot about the things I share about Eli and his life, and whether or not I share too much. I recently found an episode of a public radio show in which Will and I are spoken about quite a bit by some family members, and I am very uneasy about it. We weren’t asked beforehand if we were comfortable with it, or even given a warning before (or after) the episode was released; I found it on my own. Before Eli was born I had planned on being quite private with pictures I posted of him, but I think things changed significantly when his health issues started and I have ended up being much more open than I originally wanted. I don’t know if it’s good or bad. I know he has so many people rooting for him, even random acquaintances who have found out about his diagnosis BECAUSE I’ve been so open, and I love that. I love knowing people I knew very casually 10 years ago are thinking about and praying for my child. Plus I like the thought of being a resource for any parents who might be struggling with similar problems. But I also try to imagine how much of my childhood I would have wanted published when I was little, especially if my childhood had been nontraditional for whatever reason. 

As soon as he is old enough to understand I definitely plan on talking to him about consent and what it means, and if he would like me to tell people about [whatever topic I’m considering discussing] or if he would rather just Mom and Dad knew about it. But until then, we must decide what’s best for him, and I think it’s important for all parents to consider the decisions we make about our children’s privacy. None of us had to worry about these things when we were little because the internet was a new frontier and social media as it is today didn’t exist. Even though he is too young to speak for himself he still deserves to grow up feeling a sense of agency over his own life.