Lucas Camilo

Having done a few recent posts about happenings in our life (and recognizing that we owe some cute baby pictures!), we wanted to use this one to revisit some of the reflections we had when Ida was in the hospital, as well in the aftermath of her early health challenges, and in general about having a newborn alongside Lucas.

As we talked about before, having Ida in the hospital was especially tough because of all we went through with Lucas at the beginning of his life: a doctor telling us (on his 3rd day of life) that he might not make it; a roller coaster 3 months in the NICU; so many tests for different possible diseases; and finally a diagnosis of severe muscle disease (MTM) when he was 5 months old.  But for me at least, there has been something else going on related to Ida’s challenges that’s hard to talk about because it’s so tied up in our complex relationship with MTM, as well as disability in general.

Based on the process we went through to get pregnant and the testing involved, we knew that we were going to have a baby girl, and assumed that she would be a typically developing child (given that MTM is x-linked and therefore girls almost never have symptoms.) So in thinking about having a second child we mostly thought about how we’d deal with a younger child without disabilities alongside an older sibling who does have disabilities.  We still knew there was a chance of having a child with special needs — there always is — and talked that possibility fleetingly, along with having general anxiety about the birth process. But mostly, we pictured a very different life and development for our second child, and actually wondered how weird it might be given how accustomed we are to Lucas and all his gadgets.

And then Ida was born… and after a mostly blissful 48 hours, we were back in the NICU.  And as we wrote about previously, there was a moment when it looked like she had defied all odds and was developing the symptoms of full-blown MTM.  Even after that possibility became much less likely, we still found ourselves scared, and even a little heartbroken, that delays, challenges, and maybe special needs lied ahead.

That reaction to the possibility of another child with disabilities feels very complicated.  On one hand, like just about any parents who are forced to encounter the medical system early on, it makes sense that we were scared about the possibility of something being “wrong” with our child.  On the other hand, we’ve always embraced difference and are so proud of all that Lucas is and has become.

That’s why I cried when I saw an early comment on the blog from Lucas’s first ever nurse in the NICU who said “She’s perfect, just like her brother.”  Because in our mind, Lucas is perfect, despite (or in part because of??) MTM.  The disease is part of Lucas, disability is part of Lucas, and even on the days when we wish that it were just a little less severe, its hard to imagine a Lucas without MTM.  Which is why we could never “hate” the disease–as we see other parents sometime express– even if we totally understand and empathize with that sentiment.  But as much as we love Lucas, having one trached, ventilator-dependent, wheelchair-using child is a serious undertaking.  The idea of two medically fragile children is mind-boggling.

Making it even more intense is that with Ida, the main issue is the same as with Lucas, albeit on very different level of severity: they both have hypotonia, or low muscle tone.  (For those who want to learn more, here’s a post we did back in 2009 that explains hypotonia.)   And though she is doing very well, both the pediatrician and physical therapist who saw Ida last week believe that she still has low tone, and that its something we’ll need to keep an eye on and which could cause developmental delays.  Or it could just go away, especially since the most common things which usually cause low muscle tone have been ruled out.

Therein lies the other reason that this time with Ida still feels hard — we are again facing the unknown.  Even as Ida seems really healthy, and we’ve pretty much ruled out the possibility that she will ever have to deal with the toughest parts of a life with MTM, there’s still a lot more uncertainty with her than the average baby.  That uncertainly is something that was often present with Lucas at this stage in his life (since we still didn’t have a diagnosis) and which we hoped wouldn’t be part of Ida’s world.  On good days, we forget all about it and embrace the beauty and wonder of our now 7 week-old baby.  But there are some days where we worry and feel afraid.  For now, at least, that is part of our reality.

Finally, there is the challenge of talking about Ida’s situation with our friends and family.  When people ask how she is doing — often with the knowledge that she spent some time in the hospital and had early health issues — we usually say that she’s doing great.  And its true!  She’s breastfeeding, starting to smile and explore the world around her, sleeping well… and she’s as cute as they get!  But there’s also this element of unknown that is too hard to explain in a brief, superficial conversation.  Plus, most people aren’t aware and/or don’t understand the implications of low muscle tone.  Which is, perhaps, one of the reasons for writing this blog post.  (And don’t worry, we’ll post some more cute pictures one of these days, too.)