It was yesterday on Monday, March 1. What a big one. Five was big and six is big. Bigger than most. Why? Because of the wait. Because of fear. Since before Trey was two, we have been told that by the age of 5 and at the very outside 6, that if Trey’s brain is affected, it would have shown up by now. It would be obvious. After Dr. Muenzer told us back in July/09 that he did not think Trey’s brain would ever be affected, that was a huge relief. Probably the biggest relief.
I believe in Trey. However, Trey does have differences. He puts his shoes on backwards. His speech is delayed. None of these tell us Trey’s brain is affected, but when he does something, anything, that is not brilliant, it makes your brain go there. To fear. Since Dr. Muenzer’s word back in July, my brain has gone there way less. Way less. But then I got a scary email in October/09 from Dr. Escolar about another child whose development followed a similar path to Trey’s, who’s development was now declining. Although this child’s development started to decline within the normal limit for Hunter Syndrome, before the age of 5, when you’re so used to living in fear, I went back there.
After speaking with Dr. Escolar, I did find my way back to believing in Trey within a day or so, but yesterday, on Trey’s birthday, when I had a moment to reflect, it was amazing. See, Trey’s going back one more time to see Dr. Muenzer for the IT trial neurocognitive assessment, so I didn’t think I’d be able to relax much on Trey’s birthday. We’ve got one more hurdle to jump. But yesterday was significant for me. All those years of me asking doctors: “So, at what age will we know without a doubt that Trey’s brain will be okay? What is the oldest age at which you’ve seen a child’s development drop?” The very outside age that any doctor answered was 6. Indescribable. Yesterday was comparable to Dr. Muenzer’s word back in July. I can relax. Let it go. Trey still has Hunter’s, but his brain is going to be okay. God it feels good.
It’s like all these little events telling me that it’s okay to let go of my fear. It’s good and just keeps getting better and better. One more trip to UNC. April 6-7.
Funny how on the anniversary of Trey’s birth this is what is on my mind. Of course I thought of, or we did, other things: we had a party, got Trey a great gift, sang, had cake and all that jazz, but during times of reflection and thought, this is where my mind went. Trey’s alive and doing awesome. His development is okay. I wonder if that, what I think about on Trey’s birthday, will change. Maybe over time. For his seventh birthday maybe. I can always hope!! 🙂
Lots of love,
Deb
