Is There Anything You Learned About The Process That You Wish Was Talked About More?

So I am sitting here preparing to be a guest speaker on a podcast show called Resilient Us next week, and a few of the key notes discussed got me thinking. For instance, promoting my book, The American Terrorist, is hard because I have never done it before. The next one, though, should be much easier. Same aspect with Carter, experiencing your child going through a Pediatric Brain Tumor is not only emotionally challenging, but going through physical aspects of it are hard as well, because we have no idea what is to come. There are a few things that we just didn’t expect when driving Carter home from the hospital all those years ago.

Is There Anything You Learned About The Process That You Wish Was Talked About More?

The biggest challenge, is future medical care. The financial aspect is simple for us, since one of the good things about being an Active Duty Marine is medical insurance. As long as I can still deploy and do what they need, medical care is pretty good. What really gets under our skin, is the constant moving around and changing Primary Care Managers. With each new doc, comes telling the story and explaining Carter in a nutshell all over again. If Carter has a headache, they think it’s the shunt. Carter throws up, they think it’s a tumor. Carter can’t see, they think it’s brain pressure.

Likely, it’s because Carter had an actual headache, because he has bad eye sight like his dad, and throws up from the pain. Now don’t get me wrong, we always want to make sure he is good to go, and not suffering from something serious, but after you have a cat scan and everything looks normal, then the MRI or follow on scan to check again is uncalled for. Every single ailment Carter gets that all normal kids experience, results in Carter getting needles, IV’s and scans done. That is not something they tell you about when first leaving the hospital.

Another aspect we wish was talked about more, is what the road to recovery looked like. Did we expect a long road of occupational and physical therapy, yes. Did we think after 8 years we still would have to figure that part out, no. It has been a long 8 years, but even though speech therapy was just graduated last week, we still have Physical and Occupational to continue on when we move to Tennessee. Thankful for us is our insurance, but for others, they should know that the road to recovery isn’t a quick relearn phase, it’s an all out born again catch up race.

Lastly, we wish someone had come right out and told us that some things, may just never get back to being perfect. For Carter, his balance has never fully regained back to normal. Has it got better, absolutely. Will it be perfect, likely not. When he is playing a running through the house, he still tends to lean in one direction and drift. He trips, falls, and is clumsy. He is still Carter though, and even though his balance isn’t perfect, he still has all the fun in the world. He cannot ride a bike without training wheels yet, and this is probably due to the balance issue. He can still ride it though, so as long as there is a big ole smile on his face, who cares?

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