Stephen was our first child, born when both my wife and I were in our late twenties. Naturally, when your first child has a disability, your thoughts quickly move to the future of your family. Knowing as little as we did about Down Syndrome when we had Stephen, we were concerned about the prospect of having a second child with Down Syndrome or the ability to have future children at all.
We were relieved to discover that the type of Down Syndrome Stephen had is called Trisomy 21. That occurs when the 21st out of Stephen’s 23 pairs of chromosomes replicate at the moment of conception, so that each of the billions of cells in Stephen’s body has three 21st chromosomes. Sally and I, and everyone else who doesn’t have this type of Down Syndrome, have only a single pair.
We also learned that the recurrence rate for Trisomy 21 was no greater in later children than it is for a couple’s first child. In other words, Trisomy 21 is not hereditary. Comforted by the knowledge that the chance of our second child having Down Syndrome was the same as the rest of the general population, we started in earnest to grow our family.
We were surprised to learn, when Stephen was only seven months old, that Sally was pregnant again. However, we learned it the hard way. She developed severe pain on her lower left side that would not go away. We went to the doctor, and given her age, the first thing they did was perform a pregnancy test, which came back positive.
The ultrasound was not so positive.
The embryo had implanted in her left Fallopian tube and was growing there. As a result, Sally had to be rushed in for emergency surgery to remove the embryo, which would not have survived and could have killed her had it been left to grow unchecked.
We lost a child in that ectopic pregnancy. We also lost a little peace of mind, because we didn’t know how an ectopic pregnancy might affect our ability to have future children. But, as the future would bear out, those concerns were completely unfounded.
On New Year’s Day, 1992, we learned another baby was on the way. As you might expect, we were extremely cautious with this pregnancy, and made sure Sally was taken care of in every way possible.
In September, Sally delivered a beautiful, nine-pound baby boy. We named him Garrett Matthew, “Chunky G” as he would be known in his infant years (for reasons that are self-explanatory when you look at his pictures from that era). We picked the name “Garrett” for no better reason than because we liked it, but we picked the name Matthew more intentionally.
Matthew is the English derivative of a Hebrew name that means “gift from Yahweh,” or “gift from God.” It had been a nervous year and a half since our ectopic pregnancy, and more than two years since Stephen was born. During that period of time, our struggles with fertility occupied almost every thought. Our joy in being given a healthy baby boy spilled over to the extent that we could only name him in honor of the gift that he was from God.
Our concern about Garrett’s health, even in the hospital, was so great that one of the nurses, who had a disabled child herself, sat us down and said, “You’ve just had a perfectly healthy baby boy. Now relax and enjoy him!”
Ever the nervous parents, and still a little traumatized from our birth experience with Stephen, we continued to worry, even after bringing Garrett home. In fact, the night we brought him home, we watched him sleep in his bassinet and thought his breathing seemed erratic and rapid. We rushed him to the emergency room to make sure all was okay.
The ER doctors told us he was perfectly fine, and we could go home and let him sleep, knowing he would be okay when we woke up in the morning. Rather, when he woke us up in the middle of the night wanting to be fed!
At that point, we were finally able to accept that Garrett really was normal, and all we had to do was feed him, change him, and love him.
Over time, it became clear that Garrett was even more of a gift to Stephen than he was to us. Garrett was a boy’s boy, very involved in sports, and masculine in all things. He drop-kicked a ball across the length of our living room at 12 months and gave his grandmother a black eye with a whiffle ball before he was two.
Garrett would eventually play organized basketball, baseball and football, with each of those roles carrying the added benefit of giving his brother, Stephen, an entrance into the world of manhood. On many of Garrett’s teams, Stephen was the honorary bench coach, and he was invited to sit on the bench or in the dugout during the games.
In every case, Stephen was, and still is, Garrett’s greatest cheerleader. As a result of Garrett’s athletic exploits, Stephen also became friends with all of Garrett’s friends.
For many years, as the older brother, Stephen looked out for Garrett and provided leadership. However, we knew the day would come when their roles would reverse.
During the eighth grade, as Garrett grew taller than Stephen, Garrett started taking the leadership role. But this didn’t change the fact that to Garrett or our other kids, Stephen is “the man.” Each one of them looks up to Stephen, and they understand that Stephen has a unique history with Sally and me.
We followed Garrett with a daughter, Kaitlin, two years later, and then 14 months after that, our second daughter and last child, Lauren. While the girls love Stephen, neither of them can possess the role Garrett has in his life.
But Stephen would not be who he is today without those two beautiful girls who have poured into his life from the moment they joined our family. Less than six years separate Stephen, our oldest, and Lauren, our youngest, and because they’ve grown up together, all four of my kids have become the best of friends.
The joy in the exchanges between Stephen and our girls is unspeakable. Recently, my youngest daughter experienced a traumatic brain injury. Because Lauren was the first in our family to be hospitalized with a serious injury, Stephen didn’t know what to expect. He’s an emotional guy anyway, and he was distraught at the thought of his sister in a hospital bed.
On the day of the accident, we brought him to see her in the ER. Stephen reached out to hold her broken hands and said, “I love you, Angel” (his pet name for Lauren).
Stephen could not control his emotions when she responded, “I love you too, Bubby.” Bubby had been her pet name for him since she was a very little girl. To Stephen, that one simple word from Lauren told him his sister was going to be alright. He cried like a bubby – well, a baby.
I’m confident that once my wife and I are gone, our younger kids will step into the breach and assume Stephen’s care. One of my favorite memories comes from an old video we often watch. Stephen was sitting in a small rocking chair watching the latest episode of “Barney the Dinosaur” when my oldest daughter, at the age of two, gently put her hands around Stephen’s face and quietly said, “Time for baf, ‘tephen, time for baf.” She took Stephen’s hand and he willingly complied, following his sister upstairs to the bathroom.
At that moment, I knew Stephen was going to be alright.
Next: A Father’s Hope for His Sons