The Gift of Gabriel

This is a piece I wrote a few years ago, about my son, which I originally published on Epinions. I like to write about him every once in awhile, mostly for myself, but sometimes to encourage others. My Peanut, as like to call him, is an amazing human being, and I love to show him off and share him every chance I get. This is the first piece I ever wrote about him.

The Gift of Gabriel: Learning Our Son Has Down Syndrome and How He Enriches our Lives

“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, a family member, 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 from 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 2 ½ years old and has a very determined personality, along with a golden 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. He is now on the edge of toddlerhood. He can stand up by himself and walk using a reverse walker, or just holding our hands. He communicates using some words and a lot of sign language. He ADORES his big brother and Nicholas adores him right back. They kiss and cuddle and wrestle with each other everyday. Nick is his biggest influence and motivator. The love between 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 travelling it.

What Have I Learned?

Gabriel has brought us more than joy. He has made us better parents. He has truly taught me the difference between big things and little things. Very few people, in my encounters, REALLY understand that. Too many people waste their energy getting angry over the little things when the fact of the matter is, there is very little in this life worth getting angry over. I don’t care if you cut in front of me in the grocery store, or your car door hits mine in the parking lot. I have my sons. They are healthy and thriving, and nothing else matters. As a parent, Gabriel has made me more patient. The stages of development last longer for him, so I can’t get frustrated or impatient just because he doesn’t master the use of a spoon as quickly as I want. If I am to help him and support him, I have to sit back and allow him to learn and explore and discover at his pace. This, in turn, makes me more patient with Nicholas, and a happier parent all around. I can savor the kind of things that would drive most other parents crazy. A while ago, Nicholas got into his paints while I was in the shower. He covered his hands in paint and made handprints on the entryway wall and bathroom door. Rather than yell, or punish, I calmly reminded him that paint is for paper, and put the paints up. Then I got the camera and took pictures of his handprints. It was a big deal to me that he did that. Until recently, he couldn’t stand having his hands dirty or wet. He hated sand and mud and dirt, or even food, on his hands. Now he’s moved beyond that, and I am proud. I don’t think I would have been able to appreciate that milestone if it hadn’t been for Gabriel. As he grows, he will no doubt continue to teach us. His presence in this world will teach all who know him how to understand, accept and love those who are different. Nicholas will learn about compassion without even realizing it. As for Gabriel’s own milestones, well, he will hit them all, in his own time. Instead of worrying about what he’s not doing at a certain age, I appreciate that I have been given the one thing that I know every mother wishes – that our babies could stay babies just a little while longer. Mine has, and I’m loving every minute of it.