Entering the second straight year of doctors, testing, pretty regular sicknesses and no diagnosis with my son is starting to wear on me, my husband and son and everyone else more than I realize sometimes.
I keep myself so busy talking to his doctors, pushing for something productive to happen, trying to get all the doctors who keep telling me they don't know what to do with him to keep racking their brains in hopes that someone will be able to help him and at the most unexpected times it hits me hard.
I know intellectually none of this is in my hands. I know tons of people are praying for him and us, and for that I am grateful. I also know God create us with a brain to use and not sit ideally by while life happens to us.
Every visit with a doctor and every day he gets sick and no one can tell us what is happening is scary. It's scary to know if he gets one really bad respiratory illness, he may not have the resources to fight it off because his body is already fighting hard.
It is scary to weigh the effects of medicines that in a normal kid may have bad effects, but in a kid whose future health is so uncertain may be the only way he even has some future health.
It is scary to watch my boys play and imagine what happens if my baby goes to the hospital one day and doesn't come home.
It kills me to stick the tube down his nose into his stomach to make sure he is getting enough extra calories to maintain his status quo and hopefully put on a few ounces in the process.
You know your children aren't yours solely - they are on loan from God. The further we delve into the possibilities of health issues and the more time we invest in doctors and hospitals, the more I wonder if our time would be better spent not looking for the "answer."
I want to capture every moment with my boys ... I am a photojournalist, it is in my nature. I think situations like this just make that urge 100 times stronger. I don't want to miss one second I am given with them.
I think what scares me more than not finding an answer sometimes, is finding one and what that means for our future; for his future.
My husband and I have talked about many different scenarios and what we know is we love our boys and no matter what, we want them to have as normal childhood as they can regardless. So even though that may include tons of trips to the doctors and hospitals and lots of tubes and medicines and who knows what ... it also includes a lot of toys and reading and laughter and hugs and giggles, and I hope that is what they remember most when they are older.