Originally published September 2010 on my first blog address.
The life my husband and I have together took an unexpected turn when we got the news that our first child, a son, would be born with Down Syndrome. Shock doesn’t describe the feeling we felt when we got the news, a diagnosis that just wasn’t on our radar at the time. We also felt great isolation because at that time we didn’t have a close relationship with anyone that could tell us they’ve been where we were or that they understood the despair we were feeling because they’d heard the same news. For that reason I decided to write a blog about our experience. I remember searching the Internet in the days following the news of DS for a positive, uplifting message. I wanted to see a “real life” example of a couple like us. I was tired of reading the textbook information that told me what my child wouldn’t be able to do. I needed someone to see a family living this out, doing life. Hopefully our story can be a positive message to a grief-stricken mother and father hearing the news we heard. Even if my story doesn’t serve that purpose, I feel that I must write it down for my own sanity’s sake.
I’ll start by saying that in hindsight I see that God has been preparing my heart for being the mother of a baby with Down Syndrome (DS) for sometime now. In graduate school, as my assistantship, I worked at a daycare that provided care for both typical children and children with special needs. I remember seeing those young couples that were mothers and fathers of children with special needs and being curious about when they got the news that their child would have special needs. I’d always wonder how they coped with it and I would consider what I would do if I found myself in their same situation. Here I am, three years later, experiencing what I wondered about.
My husband and I found out that we were expecting around December of 2009. We were shocked at first, but that shock quickly turned into excitement as we shared the news with family and friends. Everyone in our family of course said that it was about time for us to have a child. We joked that since we were so young (25 and 27) we’d have grown kids in our 40’s, and with an empty nest, we’d be young enough still to enjoy life doing what we wanted, just the two of us again. We went through the first 17 weeks of the pregnancy as normal as expected, except for an ovarian cyst that eventually dissolved on its own at around 12 weeks. From the moment I discovered I was pregnant, I knew in my gut that our first child would be a boy. I shared my intuition with my husband . At 17 weeks gestation, an ultrasound confirmed that we were having a son and my husband instantly gave me a “high-five” in the examination room at the clinic. At that appointment we also had an AFP blood test done, which screens for DS, Neural Tube Defect, and Spina Bifida. Due to a family history involving a Spina Bifida diagnosis, our doctor encouraged the test. That AFP was an afterthought to us at that time because we were so excited about having a son and we just knew that everything with our child would be perfect. On the way home, we of course called our parents, siblings, and special friends to tell them the news and swapped stories about how our little son would grow up and do all sorts of things. We already had his life planned for him, basically. The next week we found ourselves sitting in the office of a prenatal diagnostic specialist as he performed detailed ultrasounds of our child because that AFP came back showing increased risk of DS. We went to that doctor expecting him to confirm a false test result. My sister, who’s also my OB nurse, assured me of that since most of those AFP results render false positives, not to mention I had just turned 25 in November, so the likelihood of me bearing a child with DS was almost non-existent–1 in around 1300. However, that doctor only confirmed our fears. He found that our baby had a shortened femur length and calcium deposits on his heart, both of which are ultrasound markers for DS. He said combined with my AFP results, those markers meant that we had a 25% chance of having a baby with DS. I burst into tears right then at the thought of our baby having DS. At the thought of challenges, struggles, lack of acceptance he might face. He offered an amniocentesis, since he couldn’t tell us one way or the other. I reluctantly agreed to the amniocentesis, which was a terrible experience in itself. Luckily, it was a quick procedure. It was done. So, we made our way home. The doctor said it’d be ten days for the results to come back, so I spent the next ten days searching Google every chance I got for ultrasound pictures of fetuses with DS so that I could confirm to myself that our child was “normal”. Of course, all the websites said that the findings from our ultrasound were “soft-markers” and were present in “normal” fetuses. I convinced myself that nothing could be “wrong” with our baby. On Monday, March 15, 2010, I anticipated my doctor’s call with the results. I even carried my cell phone around with me all day at work so that I wouldn’t miss this phone call that was going to ease all my fears and anxieties. The call didn’t come until 5 o’clock that afternoon. Luckily I was home from work at the time but my husband was out at a local high school baseball game. The doctor gave me the results and my world that I thought I needed and wanted crumbled when I heard the words “Down Syndrome”. The call ended and I was numb. I called my husband and told him. He knew though as soon as he heard my voice. My sister happened to call immediately after and through the tears I told her the news. She offered her condolences and said she’d call my mother. I sat on the floor in our bedroom until my husband got home. We cried together for a while. My mother, my sister, and our pastor all arrived within the hour. I don’t really remember anything they said. I just wondered if I’d ever stop crying. My mother-in-law came later that night to check on us. After she left, we cried some more and prayed a lot. We decided that night that we wouldn’t tell anyone the news except for our family and closest friends. We made this choice partly because we didn’t want to answer any questions or be forced to respond to comments, and partly because we were in disbelief. Time moved on and I remained grief-stricken over my baby. In those first few days, I didn’t know what to pray or if I even should pray for God to intervene with the results we had heard. I knew I needed peace, so I prayed for that at first. But, during a sermon one day at church, my Pastor alluded to a scripture where God brought healing after a believer had earnestly prayed. So I began to earnestly pray for my unborn baby. I prayed for him multiple times everyday and begged God for a healthy child. I even prayed for an error in that amniocentesis, as silly as that probably sounds to most people. I was at a point of desperation. In the middle of all the grief I felt, I began to blame myself for this. I thought that maybe I had been too proud or maybe I didn’t have enough faith or maybe I had been living without dependence on God. Through a close friend of mine, God led me to the passage of scripture in John 9:1-3 where Jesus heals a man who was blind from birth and the disciples asked him if the blindness was because the man had sinned or because his parents had sinned. Jesus replied with grace, “Neither this man nor his parents sinned…but this happened so that the work of God might be displayed in his life.” (NIV) I had never paid much attention to that verse, but at that moment it became my lifeline. I clung to it. I prayed it, tried to claim it, and printed it on small pieces of paper to put in my car and in my planner so that I could meditate on it all the time. God used that verse during the next few months to give me the strength I needed. Some days were better than others. I had days when I cried the whole way to work, or the whole way home. I celebrated with other pregnant friends and friends who had just had children, but when I left their presence I broke down over the sight of their normal, healthy babies or easy, joy-filled pregnancy. I also stopped looking up DS on the Internet as much and I stopped reading the books I had about DS, simply because I couldn’t handing reading what research said my baby wouldn’t be able to do. This emotional rollercoaster lasted for the next few months. A bright spot of hope came to us when we visited our Pediatric Cardiologist for the first time at around 26 weeks and she reported to us that our baby had a normal, healthy heart. We were/are so thankful for that news. We also had some moments of joy when we saw our little guy on the 4-D ultrasound shots at 28 weeks. He looked so sweet and we were able to pick out some of our facial features he shared with us, stuff that all parents look forward to. The next few weeks progressed rapidly and before we knew it we were having non-stress tests weekly with an occasional ultrasound. Babies with DS have a 30% mortality rate during the last few weeks of pregnancy, so I was considered “high-risk”. It was hard to talk pregnancy with my pregnant friends because everything seemed so great with them. I always put on a happy face and I was definitely glad that they were hearing good news and were having healthy babies, but I still wondered, “Why us?”; “Why our baby?”. God did use our friends to speak words of encouragement to us during the hard times. I tried to constantly dwell on scripture in order to smite the lies that Satan threw at me. I had deep fears and worries about my child’s future. God used a mother of a child with DS to bring me encouragement and to tell me that I would smile again and that our child would be more like his peers than different from them. This was such encouragement to me.
So the day came unexpectedly for P to be born. I went in for my regular check-up at 38 weeks. The nurse, my sister, hooked me up for the non-stress test to check on the baby. The test was complete and the doctor came in the room. He said he’d seen some things on the test that alarmed him and then decided to check my fluid level via ultrasound. He found that I had critically low amniotic fluid and told us that if we didn’t have a c-section that afternoon then we’d probably lose our baby. So, as nervous as could be, we left the clinic, went to our house and grabbed our bags, and headed to Wesley Medical Center. The c-section began around 5:30 pm and at 5:58 pm that afternoon, Wednesday, July 21, P was born. I heard him cry and couldn’t wait to see him. They cleaned him and then Andy brought him over to me so that I could see him. I kissed him and I couldn’t believe my eyes. He was beautiful and he was ours. It was the strangest and most joyful experience I’ve ever had. When I finally made it to my room, the neonatologist came in to tell me that P was going to be admitted to the Neonatal Intensive Care Unit due to low blood sugar levels. He also confirmed Down Syndrome. At this point I still had not held him. Everyone kept telling me how beautiful he was and pointed out the facial features that he shared with my husband and I. Finally at around 11:00pm that night, the nurse carried me down the NICU and I was able to hold my baby. Suddenly DS wasn’t on my mind anymore. My husband and I spent about an hour that night just staring at him and holding onto those little fingers. We realized that night that P wasn’t a “Down Syndrome baby”…He’s our baby that happens to have Down Syndrome. My husband made the comment that when you see those little fingers grab your finger and squeeze as hard as they can, you realize how special and precious that little life really is. I agreed. In the days that followed, we got good news some days and bad news other days. I prayed for my baby’s life and God answered. We spent ten days in the NICU and finally were able to take P home. During that time as we battled P’s health issues, we came to understand that Down syndrome did not define our baby’s identity and the privilege we have as his parents is one of the greatest blessings we could’ve ever received.