Will this ever end?

Sometimes it is frustrating. As the parent of a child with a major disability, sometimes it's easy to get comfortable in your own space. When you are having a healthy run, it is easy to forget how frustrating it is when illness strikes.

Javad has been sick for two weeks. We are fairly sure that it is RSV, but I am getting concerned that he may be developing a secondary infection. Javad has missed two weeks of school and will most likely be out of commission for another week. Luckily, he doesn't have school this coming week.

I am reminded of how fragile life is these last few weeks. My friend has a daughter that has a form of dysautonomia. When she was young, she had difficulty speaking, walking, etc. Over the last few years, she has been developing well, growing, and generally getting stronger. her parents are in touch with her disease, even though there is nothing that can be done, in theory. Last week, she got sick. She got weaker and weaker until she was almost bed-bound. it is a rash reminder for all of us. I was talking to her dad and, he too, is reminded of how far we have come.

Another friend's son, who is a year younger Javad, spent the night in the PICU. His trach came out and he was without oxygen for up to 3 minutes. Although he is doing better, again, it's a frightening reminder of where things could go.

I am grateful that Javad is doing okay, even sick. Oddly, it is hard to remember when this was our life and we were living between illnesses. Now, we are just living.

I guess the first step is just making it through this particular illness.