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.

Sunday, March 21, 2010

A Sunday In December

From the time I was just a little girl, I always wanted three things:

1. To meet someone special to spend my life with. I married my very best friend, Rob, eleven years ago.
2. To be a teacher. More on that later.
3. To have three or four children. My children, particularly my first son, Dylan, will be the primary focus of this blog. But, then again, who knows where the Lord will lead!

They say; if you want to make God laugh, just tell Him your plans. Our plan was to wait a few years before having kids. Rob and I had been married a mere seven months when heaven was roaring with the news of my pregnancy!

Dylan was born in the middle of my Jr. year at Bethany University...on the day of my Statistics final. I have always detested math and what better excuse than labor to get out of taking that final? He was not due for another three weeks, but, Dylan is Dylan and he has always had his own agenda. December 10th it was!

I pushed for 10 minutes before we got to see that beautiful head, full of red peach fuzz. Immediately, the doctor said his lungs were "wet" and that he would need to go to the Neo-Natal Intensive Care Unit (NICU). They agreed to give me ten minutes to hold him before they took him away. They suctioned his mouth and nose as best as they could then placed him in my arms for the very first time.

Instantly I knew that something was not right. He was nearly three weeks early and struggling to breathe on his own, but I knew there was something else going on. I had no idea what. Neither Rob or I saw the Down syndrome and, if anyone else did, no comment had been made. The room was a whirlwind of activity but I felt completely at peace. I held Dylan for fifteen minutes or so before they whisked him away to the NICU. Rob asked if he should stay with me or go with Dylan to the nursery. This was a “Duh” moment. "Go with our SON!”

The birth room, once a flurry of activity, was suddenly calm and quiet. I ate dinner in my room, completely alone. I do not remember a lot about what happened next. Rob was in the NICU. Our family was observing as much as they could from a NICU window. My Dad came to my room to check in on me. I told him I was fine and that Dylan was in good hands. As the night wore on and I was transferred to the post-partum wing, the pediatrician came to deliver some news: Dylan was 90% dependant on oxygen. He was being treated for an infection because of the fluid in his lungs. He had a mild heart murmur and an x-ray of his heart had been taken, but nothing serious was detected. The goal was to slowly wean him off the oxygen, but it was hard to say how long that would take.

After the pediatrician left, we went to see Dylan. At almost eight pounds, he looked HUGE in the NICU. Babies weighing only one to four pounds surrounded him! There were cords everywhere and his head was under an oxygen hood. We held his sweet hand and prayed over him, asking God to hold our sweet boy while we could not.

The following nine years - and present - will be the primary focus of this blog. I can now look back and put a label on that period of my life: Solitude. The Lord had placed me in solitude with Him. He has been teaching and preparing me for the past nine years and the time has come to step out and share. He is revealing a “bigger picture” daily. Recently I came to understand that bigger picture, partly through Jan Johnson's amazing book, “When the Soul Listens”.

You should know that I am a mother of a special needs child and I have learned to be open, honest and even candid. I want to openly share this part of my life in the hope that it will help others who may be going through similar circumstances or want to gain insight into the life of a special needs family. My nine years of solitude is over. The next step is to write about it.

I have wanted to share about our life with Dylan, and our family in general, for a long time and I finally I feel the release of the Lord to do so. In a strange way, I feel like I have a responsibility to begin writing now. I am going to share my life and the things God has taught me as a wife and mother. My mind is exploding with the things I want to share.

I am writing for the Lord. I am writing for you. I am writing for me. I am writing for anyone who will read with an open mind and listen with an open heart. The blogs are intended to be a springboard to discuss the amazing picture the Lord is putting together in each of our lives.

Today is Sunday, March 21st. My blog debuts today because it is a Sunday, the Lord's day, and the day Dylan was entrusted to Rob and I. It is also World Down Syndrome Day. Each Sunday, beginning today, I will give you a glimpse into our life. May this blog be a celebration to living the upside of life with Down syndrome!