Battles against terminal illness, anxiety, and life!

Running

Today I watched the kids, all three, splash in my parents’ pool. I listened to them giggle and yell, “Watch me! Watch me!” I am fairly certain that I will cherish that moment for many years to come. My family finally feels whole and complete. Every day that the five of us get to argue over who is first out the door, gets to hold Mommy’s hand, or gets to choose what movie we watch together, is one I want to remember. We’ve recovered from our Make-A-Wish trip, and now we are enjoying our summer to its fullest.

We strive for as much equality between the children as possible. While Genevieve is busy filling her summer with dance and tumbling classes, we have Braden in a summer fun program at United Cerebral Palsy. He came home last Friday so excited that it was contagious! It was so uplifting to bring him somewhere that I didn’t need to worry about how well he would be cared for or understood for that matter. For two and a half hours he was simply a boy excited that he got to go to “camp.” We also have a week-long art camp coming up for him, and once summer fades to fall there is a differently abled dance class he gets to participate in. Unfortunately, summer isn’t all fun and games for Braden though. We have an appointment with two occupational therapists for a full evaluation as well as a physical therapist at the children’s hospital. As if that’s not enough, he also has an appointment with the Low Vision Clinic. This isn’t because we don’t believe he can see, but we need to keep careful tabs on his ocular motor control and to see how well he can see. We even have a behavioral therapist lined up to help him learn to cope with his body and emotions. No stone will be left unturned.

The real downer though is his upcoming immunology appointment. You see, when your child cries, it’s upsetting. When your child screams in abject terror, it’s painful. Immunology equals a blood draw. Braden and needles don’t mix very well. He begs, pleads, tries to strike a deal, promises he’ll be good, and anything else that comes to mind to avoid the tubes of blood they need to gather. If only he could understand that we do not do this to hurt him but rather to keep him as healthy as we can for as long as we can. Alas, he is only five years old and doesn’t understand. That’s the double-edged sword. I’m also quite thankful he doesn’t comprehend the full-fledged war that is occurring inside his little body. I’d rather he be blissfully unaware and soothed with some chocolate and a train ride. The hurts that won’t be mended so easily are only right around the corner. I do my best to not think of them just yet, but I must prepare.

Prepared is something that you almost have to be when you have a child that must be parented outside the box. Otherwise, you’d be simply running in circles chasing your tail. There is a rather large binder that contains Braden’s medical records, important documents, notes from doctors, our social worker and attorney’s phone numbers, our rights, bits of the kids’ artwork that gets snuck in, and important information about his condition. Oh there’s more in there, but you get the idea. It’s easy to get things jumbled, and where my children are concerned, I would walk over hot coals before I let them down. So tonight as the house is quiet and everybody is asleep I run through all that I need to have prepared for his upcoming doctors appointments. My questions written down, requests recorded, and thoughts are all being laid out. We all want the best for our children, but life demands a bit more from some of us to achieve just that.

 

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