Sunday, March 28, 2010

A Mothers Intuition

The maternity ward at Dominican Hospital in Santa Cruz is U-shaped, which allowed me to look out the window of my room and see the NICU across the courtyard. The multi-colored Christmas lights twinkled in the windows as Dylan lay inside. I drifted in and out of sleep, peering through the window and reflecting on my thoughts from when I had first held Dylan. I thought about our meeting with the pediatrician. Instead of fear, anger or even sadness, I felt complete peace.

Morning finally arrived and we headed to the NICU for an update. Dylan's pediatrician started pointing out a variety of things to us: a short neck, a large gap between the big toe and other toes and a slightly flatter face with a bit more distance between his eyes. She mentioned that blood work had been drawn for chromosomal testing. No mention of Down syndrome at this point. We were clueless. We thought these were routine tests related to the fluid in his lungs.

Rob was in the waiting room with my brothers when my doctor came to check on me that afternoon. My mom and I were chatting as my doctor sat down beside me. She took my hand and said, "I'm so, so sorry that they think it's Down syndrome." I looked at her and very calmly said, "So, that's what they think it is?" She stared at me for a moment, with a look of disbelief and then quickly responded, "They haven't told you yet?" She assumed we had been told. I turned to look at my mom who had a look of deep concern. My doctor asked her to get Rob and she FLEW out of the room. Then the doctor picked up the phone and called the head of the NICU, demanding him to our room. Once again, the room was a flurry of activity.

Rob came in, visibly annoyed at me for interrupting his TV show in the waiting room with my brothers. He sat down beside me and I said, "They think Dylan has Down syndrome." Just moments later, the incredibly apologetic head of the NICU joined us. He was talking a mile a minute. Things became dreamlike after that. I remember an intense discussion between my doctor, the head of the NICU and pediatrician centering on the miscommunication that had taken place.

Rob and I shed some tears after hearing the words "Down syndrome", but mostly we were numb and had tons of questions rather than emotion. I did not feel shock, fear or even anger when the doctor said the words "Down syndrome". I had known something deeper was wrong and this was simply conformation to my mother's intuition.

When the doctor first uttered the words "Down syndrome" - before my mom left to get Rob - the first thought that entered my mind was the show "Life Goes On". I thought of Corky, who was played by Chris Burke and had Down syndrome. I loved the show growing up and was upset when it went off the air. The show also starred Kelly Martin, a young girl around my age. I wore glasses and loved that her character wore glasses on the show!

Sitting there in my hospital bed, I knew nearly nothing about Down syndrome. The only thing that came to mind was "Life Goes On", which had been off the air for over seven years. I was thinking, "Well, it can't be that bad. Corky from 'Life Goes On' had Down syndrome in real life! If a person with Down syndrome can be on TV, how bad can it be? I don't have Down syndrome and I'm not on TV!" I could not understand why the doctors were so worried. They said Dylan was doing well and would be weaned off the oxygen in a week or so. What was the big deal and why was everyone freaking out?

I think about this now and I laugh HYSTERICALLY! That is what I thought about? A television show from the early 90's? Yes. It is very clear to me that the Lord placed this memory in my mind when I was told the news of Dylan's diagnosis. I was very young when Dylan was born...just a week shy of my 22nd birthday. I was clueless when it came to the world of special needs and everything it had to hold, but one thing was clear: Dylan was my son and I loved him with every fiber of my being.

I was in awe (and a bit confused) with all of the resources they kept telling me about. Why did we have to meet with a social worker three times before we took our sweet boy home? I could not understand why they kept asking about our family, friends and support network. Dylan was in extremely good health with the exception of his wet lungs and a mild heart murmur that was expected to close on its own. He was born on a Sunday, weaned off the oxygen by mid-day Wednesday and came home on Friday. He was nursing like a champion. For the life of me, I could not understand what the big deal was. I kept thinking of Corky. He walked. He talked. He laughed, smiled and cried...all "normal" things! He had been ON TV! I wanted to shout out, "Seriously, folks! Leave us alone and let me enjoy my baby!"

The doctors emphasized that they did not know for sure if Dylan had Down syndrome. Conformation, one way or the other, would come in a few days when the chromosomal tests were complete. That night, Rob and I went to be with Dylan. We held hands, holding each other close and gazed at our beautiful boy. Dylan's eyes opened briefly and we saw it for the first time. We knew for certain that he had Down syndrome. We knew what the "official" tests would say. At that moment, our feelings for him did not waiver. Dylan might look physically different but he was our son. A human being. We loved him and nothing would ever change that.

Clearly, we found out of Dylan's diagnosis after birth. We did have the option of prenatal testing. It was something that did not interest us. There are risks that surround prenatal testing, for both the mother and unborn child. As Christians, we placed the life of our unborn child in the hands of God rather than tests and doctors. We have no regrets. I was young and healthy when I brought Dylan into this world. I followed all routine prenatal care, including an in-depth ultrasound, which revealed nothing out of the ordinary. In fact, during our 20ish week, utero ultrasound, the doctor made it a point to show us Dylan's gorgeous, beating
heart, which can often be a strong indicator of Down syndrome, as 1 in 2 individuals born with Down syndrome have moderate too serious heart defects. In the nine years since Dylan's birth, through other life lessons we have learned and experienced, our feelings in regards to prenatal testing have only deepened and been re-confirmed, so to speak. I will elaborate on this in time to come.

For us, prenatal testing is an ethical and moral issue that is not easily answered. Obviously, "hot topics" will arise in this blog. While there is a proper forum for this type of discussion, it is not the goal or intent of my blog. I simply want to share our life. I welcome all questions and am happy to discuss them at great length. Just know in advance that I am leaving these topics for another place and time.

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