I don't like griping. It makes me feel grumpy, and I don't want people to think I'm upset at them. I got off the call feeling like I didn't say enough good things about Children's, but then reminded myself that it wasn't what the call was about. I wouldn't do well in Corporate America; I'm too much of a feeler.
So, to counter-balance my icky feeling from griping at the start of my morning, I feel it's important for me to point out all the great things about Children's, and the doctors there.
1. They diagnosed Max at four months old with not one, but two rare disorders. Subsequently, he has been diagnosed with multiple other disorders and treated with the best of care in all departments. We often count our blessings that he is exactly where he needs to be, with the best doctors in the world treating him.
2. They treat Max aggressively when common medical knowledge of both disorders say he is untreatable, and beyond help. Time and time again his doctors have put their necks out for Max, he doesn't fit the text book, and often their careers can be made or damaged by their assertion of Max's care.
4. They have never given us a prognosis for Max. A diagnosis, and prognosis are very different. We know what he has will eventually be the root of what ends his life. But, the doctors know that they can't tell us when that will be, and we're grateful for that.
5. They have given us a community. Living in the world of special needs, when walking into Children's Hospital, we never ever feel like we're the only ones with a child with significant needs. They have introduced us to other families, and organizations that offer support. It's a safe place of belonging.
6. They include us as part of his medical team. Even though I don't like giving criticism, I feel honored that they ask my opinion on how to make Children's a better place for Max, and all kids. We are a part of every medical decision made for Max. They are the #5 hospital in the nation, and are working hard to be #1. They take pride in their care, and want to make it the best.
7. They fight for him. He needs to be homebound for school, and every one of his doctors have agreed to that. He has stayed healthier though the first two years of school because of their urging to keep him home. They cheer Max on with every accomplishment. They are proud of what he can do, and don't focus on what he can't do.
8. They put aside their disagreements with each other to treat the whole kid. Due to the nature of Max's complexities, every treatment will not always be the first choice with every doctor. But, they put their opinions out there and agree on what is best for Max.
9. They have never thrown their hands up and said he's not worth it. Every doctor who has stayed on with Max's team of specialists has spent countless hours, poured over countless tests, charts, medical journals, and even simply guessing to try to figure him out. They see worth, they see him as a person worth having the best life he can have.
10. They have given us 3,065 days with our boy.
There. I feel much better now. No more griping from me today, I much prefer to point out the good!