Monthly Archives: March 2012

Two years ago

Two years ago, I had finally recovered from a year-long illness and our family was getting back on track.

Our oldest boys, Isaac and Ezra, were attending a Spanish immersion school. They had become conversationally fluent in Spanish and we were glad, knowing this would give them a step up in whatever career they chose.

Peter and Callie were just 2-1/2 and 1 year old respectively. We knew they were our last babies, so even though life was chaos, we enjoyed it.

Nathan and I were looking forward to renewing our goal of taking a short trip together each year. Kid-free!

Our family read a lot of books and we had chosen not to own a television.

That was our life two years ago, before we had heard the words Spinal Muscular Atrophy. Callie’s SMA diagnosis two years ago today has created a new kind of life for us now.

We pulled our older boys out of the Spanish immersion school to have them in a school closer to home. Being bilingual would be nice, but the simplicity of having them closer to home was more important. We have them in counseling to help them cope with stress at home, and to help guide them through the inevitable grief of losing their sister.

We have a TV, and it’s on a lot. Callie has the cognition of a 4-year-old, but she has the gross motor strength of a 1-month-old. Simply giving her a toy to play with isn’t feasible.

Nathan and I can’t both be away from Callie for more than a few hours, which means that the next trip we take together will be possible only because Callie won’t be here anymore.

So 2 years later, our goal for each day is always the same — keep treading water, and don’t think about tomorrow.

Feeling better

Yesterday evening Callie started acting more like herself, and by this morning we were starting to think she might be getting better.

Today Callie’s pediatrician assessed her and listened to her lungs. He said her lungs sounded better than they had sounded Wednesday.

So we’re now confident enough to say Callie is getting better. She’s still sick and very weak and vulnerable, but it seems she’s improving.

It was very warm here yesterday so Callie was able to get outside for some fresh air. And this morning Callie’s friend Hollis stopped by to visit. Callie was very excited about that.

Thank you for all your thoughts and prayers for Callie.