“SMS is not going to define our family.” That was our, okay my, mantra after our oldest son was diagnosed with Smith-Magenis syndrome. Almost fourteen years later, I’m not even certain what that means. I think it had something to do with wanting to stay the same as BD (before diagnosis). However, I am a completely different person. I’d like to think I’m an improvement of my old self. But the growing part was painful.
My pregnancy and Garrett’s birth were not out of the ordinary. Around the age of six months, Garrett failed to reach developmental milestones. At nine months, our pediatrician referred him to a physical therapist, but I was not worried. I just assumed that he had inherited my athletic prowess.
Around the same time, my friend Jill was growing concerned about her daughter, Leah. Leah was a year older than Garrett and she still was not talking. She was also very tiny and not gaining much weight. Leah was Jill’s second daughter, so she didn’t have my blissful ignorance to hide behind. One Sunday morning, we were catching up at church. Leah had grown several inches, gained weight and was talking like a typical toddler. “It’s been since her surgery,” Jill told me. “Once she had her tonsils and adenoids removed, she was like a different child.”
“We are taking Garrett to the Ear Nose and Throat specialist,” I informed my husband, Charlie. We were both getting aggravated at Garrett’s repeated ear infections and our pediatrician’s lack of concern about it. Garrett also was not sleeping. EVER! It’s a classic symptom of SMS, but we were convinced he had sleep apnea.
I made an appointment with the ENT behind our pediatrician’s back. He was adamant that we wait for Garrett to “outgrow” the ear infections, but the ENT agreed with me and Charlie. We scheduled the surgery to have ear tubes (grommets) inserted and tonsils/adenoids removed. Six weeks later, our new pediatrician diagnosed Garrett with Smith-Magenis syndrome.
“I really thought the chronic ear infections caused his delays.” I keep repeating this to anyone who would listen. “Garrett took his first steps two days after the surgery.” Very wobbly, and nothing like the first steps I would later witness with his brothers. “He is eating better and not choking on his food.” Well, not as often. “He is sleeping better, too.” But not as much as a toddler should have been sleeping.
For eighteen months, I was able to pretend his delays were “not that bad.” Even after the diagnosis, a part of me thought the test was wrong.
But, as Leah and the other kids at church grew, Garrett’s delays became more obvious. He didn’t speak until his was six years old. He wore a diaper until he was in middle school. But, the hardest part was his loud, crying tantrums that would go on for hours. He cried when the organ started playing. He cried when I read along with the prayers. He cried when everyone stood up. He cried the whole entire service.
Fortunately for our family, Garrett was always accepted and invited to be a part of the activities: Christmas Pageant, Vacation Bible School, and Sunday School. I have heard terribly sad stories from many of my SMS mom friends about how their children were asked to leave church until they could “learn to do better.”
We didn’t hear that from anyone…family or friends. But, I could still feel myself pulling away from those I knew BD. It was just so much easier to be with other special needs families. I felt more comfortable around them. I felt more comfortable with people that I had just met than I did those lifelong friends from MY nursery school days.
I couldn’t understand it myself. No one said the wrong thing. No one did the wrong thing. Their only crime was living the life I had imagined. When I was in their company, I was reminded of the dreams I once had for Garrett.
For my own sanity, I had to shut my curtains and create a world that was less painful. For me. _____________________________________________________________________________________
Today, two girls from the middle school came down and asked if anyone in our class wanted to be in their talent show dance. Garrett’s teacher sent a note home when he was in the 5th grade. Garrett said he wanted to, so I let him go to the gym with them and Connie.
Connie was Garrett’s aide and she could get him to do anything. Anything. Please sign the permission slip and return to school. “I don’t think this a good idea.” I read the note to Charlie. “You know how Garrett cries over loud music. And the talent show doesn’t start until the evening. He’ll fall asleep backstage waiting for his turn. I can see him having a meltdown in front of the whole school.” “Let him try it,” Charlie didn’t agree with me. “You know he’ll do anything for the ladies.” That was true.
Garrett was a typical pre-teen boy in some ways, especially when it came to girls. And Connie had volunteered to stay with Garrett and his classmates backstage. Waiting can be very difficult for Garrett.
“What size shirt does Garrett wear?” Jill called me out of the blue. “Why?” “Leah and her friend have asked Garrett’s class to be in the talent show. The rest is a surprise. Don’t ask me anything else.”
When the night finally arrived, I was a nervous wreck. Connie met us at the school door so I could drop Garrett off and drive away. Just seeing me walk into “his” school can be enough to cause Garrett’s behaviors to escalate. I did not want to take any chances. I waited in the packed gym without any idea of how Garrett was doing backstage. Their dance was the third or fourth act, which is an eternity in “Garrett Time.”
Finally, it was his turn. The music started and it was loud. I held my breath. Made a wrong turn once or twice. Pink’s voice filled the gymnasium. Mistreated. Garrett’s classmate, Matt, jumped out from behind the curtain on the left. There was no doubt he was ready to dance! Misplaced, misunderstood.
Garrett walked out from the right, behind his other classmate, Katie. Mistaken, always second guessing. Leah stood next to him and started a slow clap. Garrett watched her and copied her moves. Underestimated, look I’m still around. Underestimated. I couldn’t hold back my tears.
Not only did I underestimate Garrett. I had underestimated Leah. I had spent too much time in my own grief that I had not noticed how amazingly well Leah and the other children had accepted Garrett. Pretty, pretty please…. The group on stage moved their arms up and jumped completely around, in a coordinated move. Don’t you ever, ever feel. Like you’re less than, less than perfect. It was the clean version. This was a family event, after all. Like you’re nothing. You are perfect to me.
It was then that I noticed the shirts. Jill had bought blue t-shirts for Matt and Garrett. Katie, Leah and Leah’s friend, Jordin, were dressed in pink t-shirts. All five shirts had the word PERFECT spelled out across, in bold white letters. You’re so mean, when you talk. Jordin spun Matt around in a vaguely familiar square dance move. Leah took Garrett’s and Katie’s hands for a double spin.
I could not believe that Garrett was able to remember so many moves. About yourself. Leah pointed at Katie and Garrett. Garrett pointed at himself and grinned like he was so proud. He absolutely loved being on that stage! And I had considered making him miss this moment.
For fear he could not do it.
For fear of a meltdown.
For fear of being reminded…again…how different he was from his peers.
Those peers jumped and cheered when the song was over. A standing ovation. Garrett bowed. Several times.
Garrett was perfect.
As perfect as his four friends up on that stage…especially the two middle school girls who reminded me how sweet and wonderful these long awaited moments are if you don’t let them pass you by.
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