Four things I have learned on this journey

It’s difficult to compile the list of things I have learned in these short 10 months. As much as I want to say this journey started after Carter had been with us for a while, that’s just not true. I knew from birth, even just gut instinct. I always knew. I think others did too, but they tried their best to calm my fears until they just couldn’t anymore and for that I am thankful. If I had to sum up a few things I wish I knew now, they would look a little like the below.

  1. Enjoy your child. I missed out on a lot of Carter being a baby just because I was so worried about what the future held. He used to want to sleep with me, now he hates it! I want that back. I miss us both trying to breastfeed, and failing miserably, but he wanted to be there and so did I. I wish I would have enjoyed our time in spite of his development. In the end, his development is not who he is. He is my child, ALL of him.
  2. People are there for you and they want to hear about your life, and Carter’s life. I bottle up a lot of what I am feeling. Why? Habit. This bottled up kid turned into a bottled up half-adult. It gets me into trouble, and though I know it, I do it anyway. Its hard to just open up all of a sudden. But when I do, weights are lifted and I wish I would have done it sooner. As much as you think no one wants to be there and listen, they do. They all do. Let them in. Let them listen. Let them cry with you and celebrate with you and love you.
  3. Doctors are just normal ass people. Just like me and just like you. They do not know everything and they don’t try to know everything. The medical industry relies on process of elimination. As advanced as the industry is, its not as advanced as you think. Not in the area of genetics and disability, FOR SURE. Carter depends on me to be his advocate. You cannot rely on your doctor to do that for you. They deal with so many cases, you are not their number one and thats ok. Just know it all depends on you and your advocacy.
  4. Don’t overanalyze every single thing your baby does. At this stage, I point out crap that normal babies do, that might be a “symptom” of something. Everything is a symptom. Let him stick his tongue out and flap his arms. Is he happy? Then let him be. <– this I still struggle with.

Thats my four for today. I will probably have four new ones tomorrow, and four more the next day. As is life. I’ll continue to embrace our designer genes and the medical mess that is my man. 

 

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