Recently, a friend asked about Johnny and his many therapies. I am always happy to expand upon and talk about his therapy, doctor appointments, and other circumstances to most people who ask. In fact, as long as people ask in love, I am more than happy to advocate for my son and other's who may face similar situations. Through the conversation, my friend, who marveled at all the stuff we do and work on, asked if it was all I think about.
Today I answered my first ever jury duty summons. Yes, I know, as a stay at home mom, I could have "gotten out of it". But I didn't see it that way. If Matt was unable to work from home from time to time, I would have used that exemption right now. However, he was able and willing to be a work from home dad for me to be able to serve.
Two years ago today, we found out that Johnny was coming to us with an extra chromosome. July 5th had held a lot of anticipation for us, friends, and family who had prayed over our doctor appointment and waited with worry and concern along with us. We had made the difficult decision to find out the results of our amniocentesis in person, at my doctor's office, in order to be together and to have control over the setting and manner in which we learned more information about our growing baby. As much as I had worried and fretted over the weeks leading up to this appointment, the night before found me increasingly anxious and nervous. At the appointment itself, I continued to feel this way until Dr. Norton walked in. In that moment I felt a sense of peace and if you had asked me if I thought my baby Raptor had Down syndrome or not, I would have told you yes. We had prepared ourselves to hear the news and even though I felt that this was the case, actually hearing it confirmed was still devastating. I know I cried and needed moments to collect myself. I also know that, like my appointment 8 weeks prior in which we discovered the first markers of Down syndrome, I felt a little numb.
The cycles and months move on and still we wait for any sign of a fourth child to be added to our family. It's kind of hard to talk about, not because I mind emotionally charged conversations, but because it is hard to explain how we feel.
One of the preventative measures that is taken for kids and adults with Down syndrome is a yearly blood draw to check a number of things. One of these things that they keep watch over is the thyroid. There is a strong correlation is individuals with Ds and several different thyroid issues and because we want our kids to be healthy (just like their typical peers), we make sure that aspect of their body is functioning properly. We were told after Johnny's one year appointment that his is not functioning right which led to an appointment with an endocrinologist, an ultrasound of his thyroid, more bloodwork, and a follow up which happened this week.