3.26.22

Today we have been back home for 7 weeks and 3 days. Exactly the length of time we were home last Fall. This fact sent us into a bit of a panic this morning. Reminding us of the tenuousness, the razor edge of this journey. There is a lot of stress in being prepared, with bags constantly packed, for a hospital stay. As of tomorrow, it will be our longest stretch at home since May of last year. We have worked so hard to stay home during this stretch. We have specifically declined twice to bring her to the emergency department for admission, once with pulmonary and once GI. We are doing everything we possibly can, all of this for our family to be together. For Aimee to be in her best place, home with her siblings. 

This past week Aimee has been mostly stable and more alert. The hospice nurse told us that it is a very common pattern in children to repeatedly decline and then improve some, but not quite as well as before. When I see Aimee more alert and comfortable, as she has generally been this week, I feel that maybe it was all a bad dream, that really she is fine. If only I don’t look back at this long year behind us and see the slope. If only I ignore the great pain of seeing our daughter lose even more ability, have even more taken from her. How much I wish I could give her some of my own ability, carry some of her burden. How much she has endured. 

We don’t know about tomorrow, we never do really, but we will prepare for it to our best ability while also savoring today. We continue to step a detailed, intensively choreographed medical dance every single day. Life has always been fragile. For all of us. With this fact constantly in our face, there is pain, but also the great joy, the great thankfulness for today. May I remind you from this humble place that I currently view life, tomorrow is not promised. The comfort of daily routine and regular life is not a guarantee. Have your affairs in order, but most importantly turn your face to what is true, what is beautiful, what is noble, what is just and good.