We just got back from our post NICU (neonatal intensive care unit) developmental assessment. Lots of information to take in. Technically Sebastian is turning 17 months on June 30th, but he is showing skills around a one year old as far as cognitive development, and his fine and gross motors skills are at 9/10 months. I knew he was behind, but this information is more than I realized. Our Physical Therapist always tells me he's not so far behind, but as I thought, she is comparing him to her clientele, and all those kids are behind. So, I'm processing the information. I have been so positive and accepting of this situation, however right now I'm a bit down. I'm only going to give myself today to feel this way and I think it just makes me human to have a bad day. The therapist asked me how I felt when I got the diagnosis of RSS and I said, "I'm doing just fine. I'm grateful it isn't something else, thank god he's for the most part healthy!" But I guess that prompted something in me. The outside world sees this as news that could devastate a parent. That to me is sad. No matter how perfect I think he is, I know the outside world will impose their own thoughts and views. And it makes me realize that Sebastian will have challenges that others won't. And for the first time since I received the information, I'm kind of pissed that he has this. He's such an innately good person and he doesn't deserve to have to work harder and deal with more challenges than anyone else. Then I think about Carole, my good friend who lost her child, and I realize how lucky I am to have a child that has to face these challenges. I just hate that her tragedy gives me perspective. Life isn't fucking fair!
Dr Kotton, my new all time favorite doctor EVER told us to take him to a 4 day a week therapy center where he can work on his fine and gross motor skills. I get no help from the government so have to figure out how much this will cost us. I have the ability to pay for it, but just sucks that I pay taxes and this country has cut all the programs that help kids like Sebastian. He's not walking yet. His feet are really small and his ankles are very weak which is making it harder. He'll get there. I know once he walks, he's going to be a champ as he started crawling like a wounded soldier and now he can crawl at record speeds with perfect form and agility!
JP never shows emotion during these things. He got mad at me about a stupid comment I made (rightly so). I think that is his way of venting. I know he worries in his own hidden way. I know he is OBSESSED with our kids as am I.
So, today is my day to process, be a little sad, and formulate a plan on how to live life as normally as we can while still addressing all of the issues we face. And then I'm going to step back and think about how unbelievably happy we are as a family and how lucky we are for each moment together no matter what is thrown at us. We are a group of 4 people that in my mind are the best combination of people ever put together. I'm beyond in love with my family and pray that this is only the beginning of a long life of this much happiness ahead.
