I’ve realized over the past few weeks that I’ve come to dread the question: “So, how is Isabel doing?”

While I’m sure that answering with “She’s doing fine” would alleviate the anxst and awkwardness that sometimes follows, it’s neither accurate nor descriptive, nor always honest about the full picture. But the honest answer isn’t always the easiest.

Part of the struggle to answer the question comes from which perspective to provide. I could answer medically, and confuse myself as much as anyone with strange termonology like “She has a variant of hydranencephaly,” instead, I usually talk about how she had a stroke that damaged the tissue in her brain.

(Despite the generally poor prognosis that comes with this condition, it is seemingly miraculous not onlythat Isabel is alive, but that she is so beautiful (not kidding, ie. she has no malformation), that she eats well, and doesn’t show any health concerns. While that doesn’t eliminate the significant challenges she will face, it is certainly amazingly good news.)

Or instead taking about “spastic quadriparesis” or “bilateral optic atrophy & mild hypoplasia,” we try to describe motor skill & muscle tone problems she has that limit her use of her arms or hands, or about what we are learning about her vision and some visual impairment, of which we are not sure the full extent of. Developmentally, all this means that Isabel, despite being almost 10 months old and in the 98th percentile for height & weight (and extreme beauty!!), tests at the development of a 3 or 4 month old baby in several areas. The big question mark remains about how she will respond to all of the therapy.

As such, usually I’ll talk about her treatment routine - the physical therapy she gets twice a week; the stretching exercises we do with her 3 to 4 times a day; getting “tummy time” to activate and strengthen the muscles in her back and neck so that she can hold her head up; or the weekly infant stimulation therapy she just started, which we hope will maximize her visual capacity. (She saw the red light… ask us about what that means.)

Some days all the exercise can be rough for her. But we’ve also begun to see some encouraging signs as her hands are opening up, she’s able to hold her neck up more than before, and she has even begun to lift her hands to her face a few times while she sleeps at night.

Or, speaking of sleep, I can share about how she started being able to take naps on her own in the crib just a few weeks ago. Since she was about 4 months old - and too big to swaddle anymore - she hasn’t been able to nap at all, except in our arms. In addition to her developmental delays, she also has what is known as “Sensory Integration Disorder,” particulary in the area of touch, called “Tactile Defensiveness,” which affects her in how she recieves touch.

What this means is that she needs deep pressure or firm touch in order to relax. As her body was relaxing more through therapy, we started transitioning her to her crip during her naps and have a few other props to give her the pressure sensation that she needs to stay asleep… a big relief for mom & dad.

The funnest part is seeing her wake up from her naps, or in the morning, often giggling or smiling. Well rested, this girl puts cute in another zip code. The problem is, often she wakes up in the middle of the night, unable to put herself back to sleep. When we walk into her room, without even turning the lights on, she starts giggling. Even though we’d love her to just fall right back to sleep, her laugh is a little contagious. Plus, unless or until she is able to develop her arm & hand skills - the ones needed for any self-soothing ie. being able to put her pacifier back into her own mouth - we’ll continue starting her off to sleep in our arms.

I could go on about the bureaucratic battle it has been to get her services through the Regional Center (not my favorite people on earth…). Or about Isabel’s increasingly flirtateous personality - how she loves zerberts & wet smooches & being nosed. Or I could share about - after sharing her story with someone - having to deal with the “but she’s OK, right?” or the “Well, you guys are the perfect parents for her” responses that seem to follow.

I’m not sure I’ve filled out all of Isabel’s story. It all seems to depend on which perspective we choose to share.

If only “She’s just fine” captured it all…

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