Overdue update and a 22-month anniversary celebration

Lately I’ve been awestruck. The life that modern medicine has afforded us with Braden can be so overwhelming at times it takes my breath away. I recently find myself tucked away in his room – just watching his machine breathing for him. I see him sleeping more than 20 hours a day and I know that his body is tired and unable to handle normal functions. His machines seem to be doing more and more for him, and I marvel at how incredible this all is.

We are at home with our son, grateful for quiet time with him. Appreciative we are in our own home. Awestruck that his machines can keep his body going when he physically can’t, or his brain doesn’t tell the body to function automatically like ours does.

I barely want to take him out of his little bubble. We avoid sick people, in fact, I sometimes run away from them. We don’t get him out unless it is absolutely necessary… we cancelled therapy to avoid the germs this awful season, we don’t go out into the world so he can keep his temperature stable, and his secretions normal.

I don’t want to ever go back to the hospital. It’s a place where germs abound, and we see what evil can look like in this world. It’s a place where some children get better, and some never get to go back to their earthly home. It’s a place where we are always exhausted and low on sleep but high on emotions. I want to avoid all of that as long as possible. I want to avoid the inevitable, but I know we can’t escape it forever.

But for now, we will celebrate our 22 months of being hospital-free. We will celebrate the comfort and safety our home environment provides for Braden. I remain grateful to the men and women who helped qualify us for the help we desperately needed for Braden to get home nursing. I will continue to marvel while staring at the machines that help him live. I will thank God for every continued day we get to be with him. I will love him like I’ve never loved anyone else. And I will try not to complain when I’ve been up four weeks straight with him at night, because I still get to wipe off those chubby cheeks and run my fingers through that gorgeous curly hair for just a little while longer.