This Monday, Asher officially became a patient at St. Jude. The anticipation of the appointment seemed to nag at me for weeks. It wasn’t just because of him, it was because of the atmosphere I knew we’d be a part of. There were going to be sick kids. There were going to be obviously sick kids. It’s emotional. I can’t watch the commercials. We’ve given to St. Jude for years, but to be there was going to be hard and I knew it.
As I expected, they were very organized and efficient. As I expected, Asher was overwhelmed. The waiting area is wide open. There are tons of people sitting, standing, and walking. There are big windows with lots of light. There are murals and bright colors. There are paintings and fish tanks and stuff hanging from the ceiling. It was just too much for him. We left Randy in an office to fill out paperwork. It was crowded and Asher was starting to fuss. We went back out to the front. He started to cry. He never cries. He didn’t want me to pull him in the wagon. He wanted me to hold him and get him out of there. I found myself carrying him. He was inconsolable. I looked around at all of the parents with their kids. Some were babies. Some were teens. Some were sleeping under blankets. Some were watching movies on their iPads. The parents looked tired. Everyone was almost in a daze. I know that those parents have worried themselves into that condition. Can you imagine how strong they all are though? (Keep them in your prayers)
I went to one of the ladies that checked us in. I explained our situation and asked if there was a smaller room we could wait in. I really didn’t want to be a burden, but he was really crying at this point. So was I. About the time she gets on the phone to make arrangements, Randy comes out of the office. The look on his face...poor thing. He comes out and we’re both crying.
Once we went back for the exam, everything was fine. Asher calmed down. We learned to call the whole gene mutation/syndrome - PTEN. They said it’s just easier that way. With PTEN, there is a risk of children developing thyroid cancer. They become concerned around the age of 10, but they begin doing ultrasounds of the thyroid at 6. So, Asher will begin his yearly visit to St. Jude next year for his ultrasound. The lipomas on his body won’t have to be checked unless we feel like they have grown. That’s not at all what we thought we were going to hear. As a precaution, our family will be tested just to make certain that this is a new mutation and we don’t have PTEN. That is also new and something else for me to lose hair over.
That’s really it. I know we had many prayers being said for an uneventful visit and for encouraging news. I just wanted to update everyone on what we found out.
I’ve focused the last 3 years on “fixing” Asher. I really have. As much as I say that it’s all accepted and we’re all good, the truth is that it is something we live with every day. And it’s hard. You know what though? He is so dang happy. It takes nothing more than a day outside, a paper to tear, bath water to splash, or a video of Mickey Mouse to light up his world.
I was reading about the drowning of country singer, Granger Smith’s son. His son was 3. He said, “What if we were all given 1,000 days on this earth and you could live these days barefoot, your red hair flying back, on your go kart, on your tractor full speed ahead? If you could do that with your family around you with no real cares in the world...that’s a good way to live.”
This is what Asher does. This is who he is. If you aren’t living your life like Asher, maybe you should be.
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