Isabella Grace-ious

Isabella Grace
The story of the girl who changes my life

Wednesday, March 30, 2011


I all too often share the joys and struggles of raising a mystery child with special needs. I can (and do) go on for days about how much she means to me, how much I wish I could do more for her, and how much her life has affected me. I throw my water balloon of emotions and anxieties surrounding Isabella to whoever is nearest to catch them, and I never really know when that balloon will burst on someone, or when they will catch it softly, and tenderly throw it back to me. Both for the good, and sometimes for the not so good, I am consumed by my role in parenting her.

But I also have a son.

From day one, Noah has seemed to know that she needed us more than an average older sibling would. He was the perfect infant, sleeping and eating well from the start, and almost never sick. He was born right in the middle of our coming to terms with the fact that her delays weren't the temporary, illness induced setbacks that we once thought. He used to look up at me with his wide, sweet eyes as I cried while I nursed him, trying to accept the fact that he would one day have to fill the roll as a "big brother" to a special needs older sister. He seemed to know the nights when I would finally relax enough to sleep soundly, and he chose them to practice his own sleeping through the night. As we fussed around checking her temperature hourly, checking her in her sleep nightly, and taking her to therapies and specialists weekly, he quietly mastered his milestones, with his accomplishments going by almost unnoticed by us.

He was there when the neurologist told me she definitely had "some kind of syndrome". He watched quietly while I fought to get her to hold her own spoon to feed herself. He imitated the sounds I would painstakingly pronounce, over and over again, trying to get her to repeat them back to me. He sat in his stroller while screamed as she had blood drawn for more genetic testing. He nursed while we sat at therapy after therapy, trying to get her to pedal a bike. To walk up a step. To hold a crayon. To suck from a straw. To learn sign language. To say her first words.

He was there, not yet 7 months old, when she had her 45 minute seizures. He didn't cry while I panicked, trying to figure out how to dial 911 on my phone. He didn't get scared when the ambulances arrived in the Toys R Us parking lot, sirens screaming, men in action,  barking directions at each other and at me. He didn't get upset when I left him, in the care of my mom and Harley, while I rode with her to the hospital, and he didn't invade my thoughts while she lay there unconscious and twitching, didn't make me realize that I had never left him for long, that he never took a bottle, that it was nearing time for him to eat. He knew she needed me, and he never made me worry about him.

He barely made a sound for the entire week he spent in the hospital with us while she lay there so sick. He didn't protest to sleeping in his car seat, to not having proper floor time to crawl and play. He slept when we would leave him with people, while she would got wheeled for CAT scans, spinal taps and tests for her kidneys. He was there when I needed to hold her, and he played in her hospital crib while I tried desperately to get her to drink something. And when I returned to get him out of her crib, he was there, smiling at me proudly, holding onto the slats of her hospital bed, standing for the first time.

He was there when I got the call that she might have a mitochondrial disorder. He was there while I researched endlessly, and he was there, watching me with those round blue eyes when I folded myself into a pile of despair. He was there, always so quiet, but always so willing to make me smile when I realized I hadn't done so for days.

He was there for so many of our most difficult times. And looking back, I am realizing that he NEVER fought for our attention when she needed us. He never made me choose which child I needed to focus on most, he always let her have us.

I am finally at the point where I am able to unpack the memories of those scary days, and as I am doing so I am realizing how much Noah was there, supporting and caring for Isabella just as much as we were.

So my point is, that although I write in this blog to muddle through my fears, joys, thoughts, and emotions which usually pertain to Isabella's journey with us, our little Mosie is here too. And he's my hero for choosing to come to this family knowing that he had work to do from the get go.

He's two now, so his days of being silent and golden while we are assisting to other household and sibling needs are slowly (quickly) fading away. He's still the sweet boy he was when he was a baby, but he is showing me that he needs us now, too. His temper tantrums rival the best of the worst, and he even decided to get in on that speech therapy action by requiring a little help in that area himself. But the fact that he waited to REALLY need us until his sister was out of the most dangerous part of the woods doesn't go unnoticed by us. He was sent here to go through this journey with us, and he's so good at helping us through it. And for all this and more, I love him to the moon and back.

And so does his sister.


  1. very sweetly put. he's such a great kid... you are so blessed. :)

  2. This is so sweet Mikaela. I find myself sometimes feeling guilty that we've put so much effort and emotion into Luke lately... this was a wonderful reminder that in a family, we have to soemtimes let our needs fall second to another. You are a great mom and a real inspiration! Thank you for sharing!