On Oct 14, 2013 my wife and I were blessed with our 5th child and 3rd son William. Shortly after he was born the doctors informed us that he had Down Syndrome. Upon hearing this life altering news my mind was flooded with many emotions, most of which were not positive. Through the help of my amazing wife and family I soon began to look beyond myself and recognize that William had more to offer my family than my previous selfish mind had let me believe.
Before Wil was born my wife and I felt content with our 4 children. Our youngest child is 5 and my wife and I had long thought our family was complete. But one day, after dinner, I was gathering my family to play a game and as they all entered the room I felt as if one of my children was not present. Even after realizing that all of my children were in the room I turned to my wife and mentioned what I was feeling. She cocked her head and with her loving eyes managed to tell me exactly what she was thinking. This thought would come into my head a few more times and would soon wander into my wife’s thoughts as well. A year and half later my wife was pregnant and we were semi-optimistic about having a new baby in our home again. My wife endured a hard pregnancy which caused her constant pain in her hands and back the entire day. This back and hand pain seemed to get progressively worse with each pregnancy. My wife and I have never had the opportunity of experiencing the unique joys of going into labor naturally so she was waddling for joy when the doctor confirmed her of her induction date.
We arrived at the hospital at 6 a.m. and Nikki was bubbling with excitement. This was her initial attitude for all our deliveries. It always surprised me that she could have such a positive attitude, even before drugs. Im pretty sure I would be crying like a school girl if I were in her place. She has always been such a great example to me of someone who can find joy in every experience. The nurse started her with Pitocin at 7:30 a.m. and the doctor broke her water just over an hour later.
Our babies like to stay with their mom as long as possible so the nurse would periodically ask if Nikki wanted her to increase the Pitocin level, Nikki’s usual response would be, “sure, bring it on!” She was very anxious to no longer be pregnant and to see our little dude. By 1:30 p.m. Nikki was finally dialated to a 3 so the nurse presented her with the option of getting an epidural. Before she answered I mentioned that some other moms I know had gone without an epidural so they could experience a natural birth. I wondered if she would regret not experiencing a natural birth. This was not a good question for her at that time, her bubbly attitude was no longer present. I think if I would have been a couple feet closer it could have ended badly for me.
As time drew on I started considering what Wil might look like. I then remembered an impression I had had 3 weeks prior. While working on my computer one night I paused to think about Wil. While I was thinking I had a very strong impression that Wil would be very different from our other kids. I couldn’t pin point exactly what that difference would be at the time, but in the coming days the thought of Down Syndrome came into my head. I thought I was overreacting. A week later I had the same impression. Without letting on to the fact that I had been having these impressions, I decided to ask Nikki the likely hood of having a baby with Down Syndrome. She helped me to feel confident that her age was not a real issue and that the doctors did not seem concerned about it. I continued to have impressions up and to that very moment I was sitting there in the delivery room, but Nikki’s confidence helped me to brush them aside.
Shortly after the 3 o’clock hour, Wil decided he was ready to make his appearance. The doctor made it just in time and after only two contractions we could hear the beautiful sound of William crying. I cut the umbilical cord and Wil was placed on Nikki’s chest. I was so elated to finally have my son here and that he appeared to be healthy.
After Wil was cleaned off I had a brief moment where I got a good look at him. He opened his eyes and I took the above image. While looking into his eyes everything started to go into a dream state. My previous impressions were confirmed as I looked down at my son. He didn’t have the slightest resemblance to any of our other kids. My emotions of joy paused as everything around me seemed to slow down. The nurse may of been talking to me but I wasn’t listening. I could immediately tell from the almond shape of Wil’s eyes that he had Down Syndrome. I remember thinking that maybe his eyes were swollen and that once she put the gel on his eyes they would begin to look more “natural”. Then my thoughts were confirmed when the doctor came over. The doctor smiled at Wil, paused and then mentioned to the nurse that he could see some unique attributes. She agreed and told me that she wanted to talk with my wife and I about some features she and the doctor had noticed. I already knew what she was going to say as my eyes began to fill with tears. Fear, confusion, anger and embarrassment started to over come my joy. I looked over at Nikki, she was eagerly waiting to hold her new son, and I wasn’t quiet sure how she was going to react as she looked at me and smiled. My pride had started jumping in front of the joy of the gift of this beautiful boy. I wanted everyone except Wil and Nikki to leave the room. I started running scenarios in my head about how I would tell other people, and how they would react to the news. I didn’t want the awkwardness. I already had a million questions in my head – What is Down Syndrome? Is he going to be healthy? Will he be able to talk? How will his brothers and sister react to the news? How will our friends and family react to the news? The nurse placed Wil into my arms so I could take him back to his beautiful mom, it felt so good to hold him. I placed him in Nikki’s arms as I smiled at her. The doctor then came over and kindly made us aware of some distinct features that resembled Down Syndrome. The nurse mentioned that a neonatal specialist from McKay Dee hospital happened to be in the building and he was on his way up to give his opinion and answer questions. We didn’t really know what to say to each other at that point, we just cried as we held our beautiful new baby. The nurse mentioned that our family was requesting to come in to see the baby and asked if that was okay. Nikki told her yes but I immediately told her no. I needed more time. Nikki, my beautifully unselfish wife was ready to share the joy of her new son with her family but I was not. Everyone had left the room and it was just the 3 of us. I wanted so badly to run away with Nikki and Wil, I didn’t want to face the challenge of what laid ahead. I watched Nikki as she cried and smiled at our new baby boy. We were both so over joyed to have him here, but the shock of hearing that unexpected news left us speechless for the moment.
The specialist arrived and explained some of the features that are unique to children with Down Syndrome and pointed out those features on Wil. Both Nikki and I had had very little interaction with people or families with Down Syndrome children so we were eager to learn as much as we could. We discovered that Wil could potentially have a hole in his heart, a common defect with children who are born with Down Syndrome. They scheduled an Echo cardiogram that would confirm the health of Wil’s heart. We talked about the possibilities of him not hearing or having poor vision. He mentioned that all Down Syndrome children are different, some are more high functioning than others. There were so many unknown with my new son. Once the specialist left, Nikki and I requested a few more minutes before allowing our family to come in the room. I reflected on how I had imagined my life was going to play out, I was going to have the “perfect” family that appeared to have it all put together. Our kids would get a good education, marry and then Nikki and I would spoil our grandkids in between traveling. This plan had now been turned on its head. I was having such negative thoughts. When Nikki finally asked that her family be allowed in the room I was grateful for their compassion and love. We were all able to talk and it felt so good. Nikkis parents and sister were excited and optimistic about Wil joining our family. It was the first step of moving forward.
We had now been moved into a room and I had still not made the announcement. Other friends and family had started texting me wondering what was happening. When our other children were born it didn’t take me long to post an announcement of their birth on facebook and instagram, but I was too prideful to make the announcement that Wil was born with Down Syndrome. I was mad at myself for not having the courage and strength to be proud of my son from the first minute I held him. I decided to text a picture of Wil to family so I took a picture of him with his eyes closed so it would be harder to notice that he had Down Syndrome. My sister-in-law was watching our kids and sent a text with a picture of our kids cheering at the announcement and photo of their little brother. Seeing my kids in this photo choked me up because I wasn’t sure how was I going to explain it to them and how it would impact them. Our kids arrived around the same time as the pediatrician and we didn’t have time to explain to them that Wil had Down Syndrome. I smiled at the confused look from my older two kids as the pediatrician talked about testing Wil’s heart and doing a chromosome test to confirm he had Down Syndrome. Our pediatrician, who is amazing by the way, was so in-tune to what we needed to hear. He was positive and reassured us that people with Down Syndrome can be high-functioning and live semi-normal lives. After the pediatrician left I asked my oldest daughter to help me to get some chocolate milk for her and her siblings. Not soon after leaving the room, she asked me what Down Syndrome was. I smiled, hugged her, and told her that Wil was going to grow up to be a little kid in a big person’s body. I explained that his body would grow but his mind would still be like a child. When I got back to the room Nikki and I explained to the rest of the kids about Wil. They didn’t seem to mind, they thought it was pretty cool that their little brother would always want to play. It felt so good to see all of my kids together, loving on their new brother. Another step in moving forward.
Nikki’s parents requested to take our children for the rest of the week. I was so grateful to them for understanding that Nikki and I needed time to cope and bond with Wil before getting back to reality. Before Nikki’s Dad left I had him help me give Wil a blessing. As I prayed for Wil I began to sob uncontrollably. My feelings were pouring out, I felt grief for the loss of the “normal” milestones that Wil may not experience. I have never cried like that in my entire life. My mother-in-law put her arms around me and I continued to pray. After the blessing, Nikki’s dad hugged me for a few minutes. He reminded me that Wil was going to be a huge blessing in our life and I needed to rely on the Lord. Afterwards, I said, “Thanks Dad.” I think this is the first time I have ever called him dad.
The next day, our pediatrician recommended that we speak with a mom of an 8-year-old boy with Down Syndrome. This mom was responsible for starting a chapter of the Utah Down Syndrome Foundation in our area and wanted to extend an invitation to us. She shared some of the realities and challenges her and her family have experienced, as well as the joys of having this special little boy in their family. I was curious about how her other kids were effected by her son. She told us that he had helped her children to be more patient and to love unconditionally. Her children love their brother so much in fact, that as her and her husband prepared a life will, the kids began to fight over who this 8-year-old would get to live with. It was good to hear the perspective of a parent with a child with DS. It was helping me to recognize that I was compounding my fears about the future more than I needed to. It was not going to be easy but I was feeling more confident that we could handle it. I began to think of the blessing Wil would have on my children as they learned to love others unconditionally.
After lunch Nikki and I were alone again. I was having another one of my sobbing episodes and Nikki asked me why I was crying so much. I snapped back slightly and asked her why she was not crying, “why and how can you be so content? What if Wil never talks? What if he has a hole in his heart? What is it going to be like with Wil out in public? “. I was then reminded of one of the many reason why I had fallen in love with Nikki, she has the biggest heart of anyone I have ever met. Nikki paused for a moment and proceeded to tell me that she was not going to allow herself to dwell on the things that she could not control. “We need to take things one day at a time. If Wil doesn’t speak we can find ways to communicate, if he has a hole in his heart we will get him better. The Lord knows what we can handle so we can only do our best. I am so grateful to have a son, I don’t care what other people may think. You need to get over yourself”. She pretty much put me in my place. How could I respond to that, it was so true, I was allowing myself to waste time being concerned about the things I could not control. I was too worried about how others might judge my family. I was embarrassed to have a son with Down Syndrome. It was horrible to know how prideful I had become in my life. These things were keeping me from enjoying this unexpected blessing. Hearing Nikki tell me to get over myself helped me to begin a process of self evaluation. If I did not begin to find peace in positive thinking I knew I would look back on these days with regret. I smiled as a thought came into my head, I told Nikki that “Wil would always believe in Santa so Christmas will always be fun”, we both started to laugh. Nikki reminded me that I had once mentioned that I was going to be sad when all of the kids moved out and now I could potentially have one of our children with us until we pass away. We both laughed again. I was moving forward and it felt good. We were later excited to learn that that Wil’s Echo cardiogram came back negative and that we could take him home. In the days that followed we had a lot of friends, family and neighbors who expressed their excitement in getting to know Wil and to see him grow up. I didn’t feel any of the awkwardness I assumed I would in the beginning.
Looking back on these days, its hard for me to imagine a life without my little Wil. He has taught me and my family so much in such a short time. My kids have gravitated to him more than I ever imagined. I still find myself wrestling my pride at times, but I am thankful that I can recognize it more clearly now, thanks to my beautiful wife. I am thankful for Wil in my life and I look forward to enjoying his unfiltered happiness and love.
