Saturday, July 5, 2014

A Different Independence Day

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 day continued on hard. We had our girls to come home to, Matt had tests to prepare for that evening for graduate school, and life still needed to go on. However the hardest part of the day was yet to come. Telling people, many, many people that cared about us and our sweet baby was more difficult than I ever imagined. It took us time to figure it all out. I wanted to close the door on the day, move on to the 6th, and just have some miraculous way of making everyone know at once in their own perfect way. That wasn't possible though, my mom was first since she was hearing watching the girls, phone calls to Matt's parents and my dad came next. More phone calls, text messages, emails, and a blog post conveyed information and emotions to people throughout the day. In fact, I think I was in the midst of all of that at this very moment two years ago while trying to deal with my emotions and sadness at the same time. If I had known how hard it would be to tell everyone, I would have never said when we were finding out so I could have spaced it out differently and I would have had someone make some of the contacts for me. It was really overwhelming at the time. 

I think this feeling stemmed from multiple things, but the largest was the fear of rejection. I had entwined my heart to this baby when I found out that he or she was on the way and that bond only grew stronger when I found out that he or she may have extra needs. I was sad about that, but ferociously protective of him or her immediately. I would literally cling to my stomach as I talked to people about my worries and concerns for Baby Raptor, subliminally and consciously fearful that something could happen to take him away from me. But others didn't have to feel that way and each phone call I made opened me to rejection and disappointment from whomever I was telling. I was afraid of the "Oh" laced with dashed dreams for our family. I was afraid of the "I'm so sorry" paired with a choked gasp of air. I was afraid of the "Are they sure? Surely this isn't right?" hoping that the doctors were wrong, that there had to be something better for our child. I was mostly afraid of the silence. There was no reason to feel this way, it just scared me. I was fearful and sad in those hours and felt more vulnerable than I probably should. 

I didn't know what Down syndrome would mean for us, neither did most of our friends and family. But people would have to love and accept my child or move on from friendship with us. We loved this child and wanted all the best for Baby Raptor "in spite of". Additionally, we were going to meet all of this baby's needs, whatever those may be. 

It was a hard day, not the first of Johnny's life, and surely not the last. I have held on to this day as being momentous in our lives. However, like I just said, we didn't know a lot about what Ds would mean for Johnny or for our family. We knew he had an extra chromosome that day, but we didn't know anything about who he is and who he would be. I have looked at July 5th as being a defining day in our life and it would be, if all we needed to know about Johnny is that he has Down syndrome. That extra chromosome impacts a lot of what we do on a regular basis right now because we are pushing towards some specific goals, but it doesn't impact everything we do and it isn't all that Johnny is. He is more than the diagnosis, so I release this day back to the calendar. Will I think about his diagnosis more throughout my life? Probably. Will I remember this day as being the day we found out? With my memory, definitely. But I'm giving back the hold the day had on me, I'm taking it off the pedestal, I am filing it away to a bit of normalcy. I don't think Johnny would want us to file July 5th away as a day that was that important in his life. I think he would rather we remember July 5th for a thousand other reasons, mundane, normal, post Fourth of July reasons. I think he would rather we went swimming, are leftover BBQ, gave him Popsicles, and spent time as family, than remember the hardships of two years ago. For Johnny's sake, I declare my independence from his diagnosis day. 

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