Last week I had the pleasure of reading to my daughter Lizzy’s class, a group of “typical” school children. I say typical because Lizzy splits her day between two classrooms. Part of the day is in Mrs. O’s second grade, and the remainder is in a small group of five other children with special needs.
I appreciate it any time I take part in one of my children’s school events. These are the days I dreamt of before I had children and are the wonderful, little things that make parenting so much fun. This time, I did the reading because it was my daughter’s turn as student of the week.
I sat in the “Special Person” chair and waited for Lizzy to arrive. In front of me sat the 21 children in her “big” class.
These are children who are present enough in the world to know how to say what they want to say. They have one classroom and one teacher. To my knowledge, none of them need medication so that they can get through a school day without an outburst or meltdown.
The moment my daughter walked in the classroom accompanied by her teacher’s aide, I was struck by how pretty she looked in her American Girl cardigan and pink skorts. My heart swelled as she recognized me, smiled, and said, “Mommy.”
She sat down and tried to make her very long legs fit in the tight space with all the other children on the story carpet. She is at least a foot taller than the other children. Because of her developmental delays, she’s been held back and is at least a year older than them. In addition, her endocrine system doesn’t work properly, and that has caused her to grow faster than other kids.
Mrs. O hands me Lizzy’s FM unit, which amplifies my voice so my daughter hears me directly in her own ears. All other noise is blocked out. It helps in big groups when many people are talking at once.
I whisper, “l love you,” and she smiles. We’ve been playing the same game with the unit since she started wearing it six years ago.
Back then, we hoped that this would finally be the answer. Eighteen months before that, we had hoped inserting tubes in her ears would be our solution. We also invested a lot of faith in the speech therapy she soon started. Then there was what seemed like an endless series of specialists, therapies, schools, and tests all in search of the explanation for our daughter’s disability and her shot at a normal life.
Each time, we’d find a new piece of the puzzle but nothing close to a definitive answer.
I start reading Madeline, which was my favorite book when I was growing up and the book I have been reading to Lizzy since she was a baby. I was waiting for her to answer her cue when I read, “To the Tiger in the zoo, Madeline just says…”
But it is harder for my daughter to enjoy a story when there are 20 other kids giggling.
I can tell she isn’t quite with us. She’s in a safer place somewhere in her own head where life is manageable. If we were alone laying in her pink canopy bed, I would ask her where she was and would laugh with her reply, “I’m in Fairy land, I’m in the jungle, or I’m on the cookie princess pink planet.”
She’s a magical child with a wonderful imagination. But she can only connect to the rest of the world in small doses.
I finish my story and the teacher asks Lizzy if this is her favorite book. “Yes,” she replies and gives a smile.
I said my goodbyes to the children and Lizzy’s teacher. I’m happy that Lizzy has a chance to interact with kids who are developing typically and grateful that my daughter is in such a welcoming environment.
I walk out with Lizzy and her aide. They’re going back to her small group where she will work on the computer. She loves that. She gives me a big hug and a kiss, and I head back to my minivan.
I smiled and thought how this was the first time in all the years that I have visited Lizzy in a typical setting with typical children that I didn’t cry or even feel the need to cry. That’s a big change.
Acceptance has taken a long time, and I’m not even certain I have achieved it fully. Part of the problem is that Lizzy doesn’t have a formal diagnosis.
There are no ribbons for us to wear, no bumper stickers to put on our car, no cause for us to get involved with, or other parents who have the same issues.
We are in a special club, but it’s far bigger than most people would think. It’s filled with families who have children with a host of medical and developmental issues. Some are life threatening, and yet no name has been put on them.
This year I’ve reached a level of peace. It’s probably because Lizzy is happy and doing well. Getting through the school day isn’t the challenge it once was. Finding a doctor that realized a lot of her behavioral symptoms fit a bipolar diagnosis and treated her accordingly helped tremendously.
The medications she takes have been life changing for Lizzy and the family. In the past year, we moved from a crisis to a settled period.
I would be lying if I didn’t say that sometimes I wish it were different. I would be lying if I said I didn’t wish Lizzy could have the life I had dreamt for her when I was pregnant with her 10 years ago.
But I’m happy knowing that the child I have is developing in a way where she seems happy. To wish for anything else would be to wish for someone other than Lizzy.
I can’t do that. My daughter is a special person with her own approach to the world that makes her happy. I was searching for my happy ending that included a miracle cure. The cure hasn’t materialized, and the doctors have told us it won’t.
But I’ve come to realize that each day my daughter is happy, she’s writing her own sort of happy ending. Each day, I learn a little more about accepting it.