The Bottom Line It may not be the life path we chose, but it is a joy-filled journey well worth making.
“I’m sorry. Your baby has Down Syndrome.” That’s how she said it. The genetic counselor called to give us the results of the amniocentesis, and I could tell by the sound of her voice, before she even said the words. The thing is, I knew before she even called. Call it instinct, or Mother’s Intuition, but I had that voice in my heart, though I had been suppressing for weeks. As soon as I got the AFP results back, I felt it. My son would have Down syndrome. Even so, there is no way to prepare oneself for the confirmation of one’s worst fears. We had been plucked off our well groomed, well lit life path and plopped down into utter darkness, not knowing when the light would shine again and what path would be there when it did.
Grief and Guilt
Grief is the first, and most understandable reaction to such news. My dad, the eternal optimist, couldn’t understand all my tears. He’d immediately logged on and downloaded as much info as he could about DS as soon as we shared the news. From his perspective, we were way over-reacting. I could only explain it as feeling we had lost a child, something my dad knows. Yes, we were still having our son, but all the dreams and plans we had for him and our family were now gone, replaced with uncertainty and fear. As with any grief process, we needed time to process through it. Compounding those feelings, however, were the huge pangs of guilt I felt. At the time, my firstborn son, Nicholas, was only 17 months old. He would be less than 2 years old when his brother joined him, and his well-protected world would be forever changed. I felt as though I had let him down. He wouldn’t be getting the brother I thought he should have, and would want. Now, I worried if he’d be able to play with his brother at all. I worried about him being teased at school for having a brother who was different. I worried that his adult life would be shaped by the responsibility of having to care for an adult baby brother.
But I Don’t Want to be Chosen
As the news of the diagnosis spread, our dearest friends were so wonderfully supportive. We received continuous phone messages, and cards. Mostly, they simply said they loved us and were praying for us and were there if and when we wanted to talk. Some, particularly my mother, wanted to help us try to develop a better understanding, and offered us a simple explanation in the form of “God Chose you to be the mother of this special baby.” I hate to say it, but that really didn’t help. I didn’t want to be chosen. I wanted a “normal” healthy baby. At work, my colleagues were unanimous in the opinion that if there were anyone who had to be given this special child to raise, I was the logical choice. As a teacher, I was the “go-to girl” at my grade level for mainstreaming special needs students. I’d volunteer to integrate them when others would hesitate. Not trying to toot my own horn, but I think (and I believe my former colleagues would agree) I had a gift for teaching the special needs kids. Inevitably, they become my favorites, the ones to whom I become the most attached. I didn’t just enjoy teaching them. I loved them. So it came as no surprise to my colleagues that God would choose me for the task of raising a special needs child. At the time, that was little comfort to me.
A Glimmer of Light
Nicholas, through all of this, was basically unfazed, although a bit perplexed by all the crying. He’d never seen either of his parents cry, and now we were in tears near daily. His response, however, was the beginning of our healing. One afternoon, my husband and I slipped into the bedroom for a cry, leaving Nick to play with his toys. He noticed our absence right away and came toddling in to look for us. He saw us standing there crying, then turned and walked out. A minute later, he returned with one of his favorite toys in his hand being offered up to us. That’s where our healing began, in the tiny hands of our 18-month old. He saw we were unhappy and wanted to make us feel better. Even at that tender age, he cared about the feelings of others, and tried to do something about it. I knew then that God HAD chosen not only me, but also my family, to love and care for this special child. Nicholas was going to be the perfect big brother for our new son. I started looking forward to their meeting.
What’s in a Name?
As we began to emerge from the darkness, we set about looking for the perfect name. With both boys, I gave my husband charge of the first name (although I reserved veto rights) and I chose the middle names, always from someone in my family who was important to me. When Nicholas was born, I chose for his middle name the middle name of my youngest brother, who died when I was eight. My husband didn’t want to use his first name out of respect to my parents. He chose Nicholas without much thought. It was a name we both like and so that’s what he chose. For this child, however, he spent a great deal of time looking through the baby name book, searching for a name whose meaning spoke to him. One afternoon, after a couple of weeks worth of searching, we were all relaxing on the bed, Nicholas and I playing while my husband flipped through the book. Without saying anything, he put the book down and started to cry, leaning over on my lap for some comfort. Nicholas immediately climbed on him to hug him. Quietly, he told me he found the name, and handed the book to me, pointing to the name. “Gabriel: Meaning – Hero of God” and the name of my own baby brother.
My parents gave us their blessing, I gave Gabriel the middle name George after my grandfather, and we set about preparing ourselves for his arrival. I won’t lie and say it suddenly got any easier. It didn’t. But giving him his name made it more real, more personal. We weren’t just having a baby; we were having Gabriel, a person. The roller coaster ride continued, but the ups and downs became less severe as time went by.
Educating Ourselves while Dealing with the Uneducated
We didn’t exactly dive right into research. We had to weed through many emotions before we were emotionally capable of reading about all the risks that come with Down syndrome. We started slowly as we got closer to the due date. We were fortunate to be under the care of a wonderful perinatologist who was as adept at calming parents and talking to them sensitively as he was at medical procedure. The genetic counselor was also helpful and a wealth of information. The most difficult part for me, wasn’t learning about my son’s condition, as much as dealing with people who didn’t bother learning about my son’s condition. As I mentioned before, the first thing my father did when we broke the news was to get on the internet and download as much info he could find. The very next day he handed me several pages of stuff he had printed out for me and assured me it wasn’t as bad as I was making it out to be. Sadly, not everyone around us was so resourceful. I will never forget the day I was asked, “Have you used up your extra chromosomes on this baby? If you have any more will they be okay?” I was so dumbfounded by the query, I hardly knew what to do. If I hadn’t been merging onto a freeway at that exact moment, I may very well have slapped the person. I remained calm, however, and responded simply with “Since this has happened once, the risk goes up for it to happen again” and left it at that. As soon as I was out of the company of that person, however, I cried, and continued to cry, off and on, for 2 days. This was near the end of the pregnancy, so this person had known for several months at this point, and I was hurt and upset on more than one level. First, the insinuation that I had somehow caused this, that it was my fault that Gabriel had Down syndrome. Second, that this person had known for months and hadn’t bothered to so much as check out a book form the library or do a google search on basic High School biology. I had too much to deal with. I didn’t have time to educate the masses.
Anticipation, Elation and . . . Crash
As we neared the due date I became anxious for the birth. Though we had done research and were prepared for the various medical risks coming our way, I was still praying the same prayer every night: “Dear God, Please grant us a miracle and heal our son.” I can say now I got half of my request. The rigors of being pregnant while tending to the needs of a 21-month old were really wearing on me and I was more than ready for Gabriel to arrive. Five weeks before the due date, the perinatologist told us Gabriel was still breech and suggested we talk with the OB about monitoring him carefully. At 36 weeks, (4 weeks before due date) he still hadn’t turned, and our OB scheduled a version, a procedure where they manually push the baby around. We came in at 37 weeks, 2 days and the OB successfully flipped him around. Four days later, my water broke, and Gabriel George was born exactly 2 weeks early weighing a healthy 7 pounds even. He cried a beautiful cry, and I breathed a huge sigh of relief! (Nicholas had been born with the cord around his neck and was rushed away because he wasn’t breathing). They handed me our son and I got to look into those dark gray eyes. He was beautiful! We were so excited that he was here and we loved him so much! It was a wonderful birth. Then, they wheeled him away. They told me that his oxygen was a little low, they were going to go get it back up and they’d be back soon. After 20 minutes, my husband came back and said it would be a little bit longer and he went back to be with our son. Eventually I was wheeled from the delivery room to my own private room, where I waited. At noon, they said it would be another half an hour. Then my husband came back again. Our son was being transferred to the Neonatal Intensive Care Unit, or NICU. Then he left again. My son was born at nine in the morning. I didn’t get to see him again until after 4pm. As happens with roughly fifty percent of all babies with Down syndrome, our son was born with heart defects. Four of them, to be exact. He spent 10 days in the NICU, then went home with oxygen tanks, for another ten days. Those first days were hell. Leaving the hospital without the baby to which you’ve given birth is a heartbreaking experience. At the same time, Nicholas began to feel the effects of his parents disappearing to the hospital everyday, and started to scream and cry every time we left him with my parents, a place he usually preferred. I felt like I had let down (and was losing) both my sons.
A New Path Revealed
Fastforward to the present: Despite a rocky beginning, Gabriel is now thriving. He is now four years old with an extremely determined (stubborn) personality, along with a mega-watt smile and the best laugh I have ever heard! He had open-heart surgery at 7 months old to repair his heart, and it’s as good as new now. I asked the cardiologist at his follow up “I just need to know, when he’s big enough, can he ride Space Mountain at Disneyland?” He assured me that my son could ride roller coasters, just like any other kid. Gabriel has developed a great love of music and dance, and has been taking tap lessons for a year. He loves to perform and is always the star of the show! He ADORES his big brother Nicholas and his new baby brother Elijah. The three of them love to cuddle and kiss and wrestle together, and Gabriel is very affectionate with both of them. The love between the three of them is enough to bring tears to your eyes. We can see the path now. It’s not the same one as before, but that’s okay. We can see up ahead there will be some rocky patches, and a few potholes, but along the way, the colors are more vibrant, the aromas sweeter. It’s a lovely path, and I’m glad I’m traveling it.
What Have I Learned?
Gabriel has brought us so much more than joy. He taught us how to appreciate the difference between big things and little things. As it turns out, life is mostly little things and I don’t think most people can see that. Gabriel has pushed me to think outside my box, forced me to be more patient, and enhanced my ability to appreciate beauty beyond the obvious. I think I am a much better parent to both Nicholas and Elijah because of Gabriel. When Nick was small, he had some tactile sensory issues – he couldn’t stand to have anything on his hands. No dirt, no sand, no paint, no food. Then one day, while I was in the shower, Nick got into the paints, got it all over his hands and made handprints all up and down the hall walls and doors. I was so excited, I took pictures. I don’t think I would have appreciated that as a milestone if it hadn’t been for Gabriel.
When I look at Gabriel, my heart is filled with the anticipation of what is possible, because the most important lesson I have learned is that Gabriel is NOT very different from other kids. Gabriel will grow and change and he can love and feel and have hopes and dreams, just like all children. He may face challenges in this life that are not the same challenges others face, but in the end, those challenges do not make him that different. He will learn and achieve, and make a difference in this world, just as his brothers will. As for me, I have dreams for my sons, as do all parents. I am saving for their college education. I will encourage them to follow their passions and become whatever they want. I will teach them how to be caring, loving individuals, and hope that they will find someone wonderful to share their lives with when they are grown. I want them to live lives filled with joy, love, meaning and fulfillment. All of these things are possible. When it comes to the things that matter most, my three sons are exactly the same.