New Dreams

There are some things that I will never have the opportunity to do as a mother. I spent the last two years digesting each of those losses like little deaths, and they have all hit home now. The moment we were diagnosed, I could almost hear hundreds of doors slamming shut. Opportunities ripped from me. Dreams destroyed.

However, I accept the fact that I will likely never jump up and down in a set of bleachers cheering for a son who is the quarterback of his high school's football team. He will likely never play on a football team at all. I accept the fact that I will likely never take him to the DMV to get his driver's license. I accept the fact that I will never have the opportunity to watch my son graduate from medical school. I accept the fact that I will likely never attend his wedding or have a daughter-in-law. Lastly, I am very slowly learning to accept the fact that I will likely live my entire life without being somebody's grandmother.

However, as I have watched Erik grow, I have witnessed him flinging doors open on his own, touching the people around him in a way I would never imagine was possible. He received two pieces of mail in one day this week. That's pretty decent for a kid who is only 3. He loves animals and is amazing with them. He loves music and seems to have the budding desire to create it himself. He still occasionally goes into a deliriously happy trance when he sings a new song. This week he began singing "Deep in the Heart of Texas" and "Old Suzanna."

Slowly but surely, my dreams for the future are once again materializing in different forms. I visited You Tube yesterday and searched for videos on Williams syndrome. Two years ago, I saw only my personal videos posted on this subject. Now I see familiar faces with button noses and gorgeous eyes like Erik's. When I find a new video, I feel like jumping for joy. Yesterday I discovered this video of a young man who can drum up a storm. While I watched him perform, I realized I was less focused on his incredible talent and more transfixed by the joyous "woo hooing" in the background.

It was then that I suddenly had a little realization of my own.

No matter what Erik decides to do with his life, it is very likely I will have an opportunity to stand up in a crowd and cheer after all. My son has a chance to do things typical children find amazing. He has a chance to follow his own dreams and will likely need to work twice as hard as other children to accomplish them. I have all of the faith in the world in him and know he will blaze his own trail to happiness. The future is one big unknown for Erik Quinn.

I now know one thing for sure. And I'm certain it's true.

Moms like me get to "WOO HOO," too.



Thanks, Devin, for sharing your talent with the world and providing our family with another hero of our own.

Only God Knows Why

I have had volumes to say lately but apparently lacked the strength or the knowledge required to transform my thoughts into words on my computer screen. I will keep some of my thoughts private, as I just can't imagine letting the sunlight hit some of them at all.

In essence, my brain is in overdrive before our IFSP meeting Monday and the first day of preschool Tuesday. I was invited to attend a fundraiser at the stables where Erik receives hippotherapy by a friend I met courtesy of our kids' respective syndromes. I declined via e-mail, as I was feeling incredibly grouchy and the last thing I felt like doing was writing this admittedly wonderful facility another personal check. After she received my somewhat vague and probably uncharacteristic response, she called to check on me. As much as I didn't feel like talking to or seeing anyone, it was surprisingly good to hear her voice. I told her I couldn't quite put my finger on the sudden, week-long bout of clinical-strength depression I seemed to be experiencing. It was then that she admitted to me that there are times when she stops and wonders exactly what in the hell has happened and how she came to be where she is today with her child. We agreed that we both were formerly under the impression these kinds of genetic anomalies our children have simply didn't happen to those around us and that we were exempt from anything besides having a perfectly normal child with beautiful fine and gross motor skills and every single one of their genes. Before Erik, I had no idea a person could be missing genes! What ended up occurring certainly wasn't included in the play books when we were selecting our nursery themes or sipping pastel-tinted punch at our baby showers. Before I gave birth, I once told a friend that the worst thing that could happen was to bear a child who was mentally retarded, as I wasn't nearly strong enough to handle it. I stated that with smug confidence, as I knew it simply wouldn't happen to me, anyway.

I was wrong about a lot of things. It can happen. It happened to us.

Yeah, yeah, I know. We established the fact that much of what has occurred simply sucks long ago, but the way she put it into words really struck a chord in me. She is a positive, strong person who rarely complains. There are just moments when moms like us look up from the routines we have come to consider perfectly normal (Windexing playground grit off of our child's orthotics, covering tiny ears to protect them from upsetting noises other children don't seem to hear at all, administering medicine to control problems that usually occur in the elderly, pulling our child from the sunlight more readily than other children to prevent serious vitamin D and calcium issues, and singing songs over thunderclaps as our inconsolable kid sobs) to stop and say, "Hey! Just wait a cotton-pickin' minute!"

Just what in the hell DID happen? Am I really doing all of this? Is this a dream?

It just doesn't seem real sometimes. However, after a moment like this, reality eventually crashes in on me, and I am coming to the realization that this is forever. There will be no end to it all--and that's if I'm lucky. Pardon me while I learn to breathe again so I can survive the panic attack I seem to be experiencing.

Last week I was feeling especially sorry for myself and my child. I squeezed my eyes closed and let my brain marinate a bit in my blue soup of thoughts, even though I know that's a dangerous and crazy thing to do. When I did this, I saw something completely new. I pictured myself 20 years from now standing in front of a neat line of Tupperware containers on my counter, and I was filling each of them with hot, homemade food to place in Erik's freezer. I stopped my daydream long enough to wonder if he would know how to operate a microwave without burning himself. Would his teeth decay from a poor diet or his brain's inability to allow him to successfully brush both sides of the teeth in his mouth? Would he know how to fix himself a meal? If I was freezing him dinners, he might be living on his own quite successfully, but I would have the same work and the same worry ahead of me. Maybe even more of both!

What would be worse? Having to let him go or not being able to let him go?

I'm afraid of burning out. Of being so jaded I won't love my son the way he deserves to be loved.

Most of all, I'm afraid of never being able to rest. Of watching my friends' children leave home for shiny, new lives and careers as I assemble peanut butter and jelly sandwiches for my baby. I could hardly bear to think about it anymore, so I opened my eyes again.

The future is unknown for every mother, of course. There is no way to know at this point what Erik will be capable of doing or what his life will be like. It's not really up to me in the long run, although I help him when I can. I don't normally ruminate on these things constantly. In fact, I consider myself lucky I may have a mama's boy on my hands. He is a great companion, and we make each other smile. Lately I have needed to think, and my depression seems to be lifting as I sort things out. Perhaps part of what I am feeling is being afraid to let go next week--and of never being able to really let him go at the same time.

I have been wrong about a lot of things.

Even in the midst of my depression-generated daydream, my face was dry, and I looked happy and strong. There is no question that I will do what I need to do. I hardly know the woman in my daydream with my own face, but I hope that we meet up eventually and become one and the same.

I can handle this, and I will handle this. I guess all I can do at this point is let go of his hand and see what happens.

I have been wrong about a lot of things.