For over a year, I tried to teach my daughter Ellie to say “mama.” She had for a long time said “Da” when she was asking for her father or “Ja” for Jack. She sang a song called “Watie” when she wanted water. She could sign and use the word “eat” when she was hungry or splash her hands in an imaginary tub and say “baa” when she wanted a bath. “Baby” was easy for her to say when her little brother Gus arrived.
When she wanted me, though, she just whined. We practiced and practiced forming the “m” on her lips. But when I could watch her eyes and tell that she just couldn’t figure out how to get her brain to force her voice to produce what her ears heard, I let up on the pressure and decided that it would happen when it happened.
Kids with Down syndrome need a little more time when learning new skills, and talking would be no different.
We were snuggling on the couch one night after her bath when she looked at me and out of nowhere came “Maaaahma” from her mouth. I was so excited that I cried and begged her to do it again so I could record it on video.
From that day on, she didn’t say the word every time she wanted my attention, but she did it often. As she has gotten older she has realized that, as one of three kids, if she wants me, she will have to be loud and has started calling out to me more. But it has evolved from that first sweet, breathy “Mama” to a “MaaaaaH” that sounds more like something you’d hear from a cow in a pasture.
We got home a little late the other night, and I was rushing to get dinner together for the kids. Ellie loves “chickie” nuggets and nothing else for her would do, but I still offered the kids an appetizer while the main course was heating in the oven. The boys wanted hummus.
On the way to the refrigerator to grab it, I heard “MaaaaaaH!”
“What is that about?” asked my husband Ben.
“Chicken nuggets,” I said, a little annoyed. “They are on the way, but they aren’t ready yet.”
“MaaaaaH!” Ellie yelled again.
I looked at Ben, who was smirking because he thinks this new call she has for me is hilarious, and said to him, “Failed again. Can you believe that I am not perfect?”
“You are perfect, you just don’t always do everything perfectly,” he said.
I spent pretty much all of 2021 angry, but I didn’t know why. I knew I was anxious and just generally didn’t feel well. My chest hurt and I couldn’t sleep. I mostly couldn’t eat without getting sick, and I felt like I was treading water.
I was tired and less and less able to keep my head up to breathe. I knew if I could just climb up onto a raft for a minute, I would be able to look around and find the land. Once I could figure out which direction I was headed, I was willing to put in the work to swim there, but I just needed a lift for a better view. And the longer I waited for someone else to show up with a boat, the madder I became.
I started the year by telling my therapist that I could feel my brain changing and wanted to understand more about what was going on around and inside me. She helped me find some doctors, and I started taking medication to help.
I called up some people I admired and invited them to coffee or a meal so I could hear more about what they had learned along the way. I accosted others in their emails, over text and when I saw them in public, asking questions that were probably too personal for polite company in my study of how to figure out how to do the next right thing.
I read books and took classes to learn about astrology and had an in-depth birth chart reading, partly for fun but also to see if I could gain insight into myself from the stars.
For twelve months, I researched forgiveness. I spent a lot of time thinking about how my stomping around angry was easier than sitting still, and how it had become my default because experiencing being sad seemed too hard.
I listened to and read inspiring stories of people around the world who had been wronged or had suffered loss to try to understand how they kept going and found a way to breathe above water again. I talked to people who know a lot more about life and God than I do in an effort to know what it means to have, give and receive unconditional love.
I certainly don’t find myself in 2022 with answers, but my focus is shifting. Instead of being mad that no one has sent the lifeboat to save me, I realize that the real question is more about how I ended up in that deep of water by myself in the first place.
I have been angry since I was pregnant with Ellie about what I don’t have and what I think I am missing out on.
I don’t have a perfectly healthy little girl who will grow up to have an advanced college degree or could be president or have a family of her own that includes 2.5 children and a two-story house with a white picket fence.
She won’t ever be tall and won’t hit milestones on time or be invited to the gifted classes at school. My family picture albums won’t look like the standard issue ones you see in movies about perfect families who solve mini-crises in two hours’ time.
I have a reminder of imperfection that smiles at me every morning. She will always be one beat behind, and I will always struggle with how to honor who she is as a person with who the world expects people like her – and moms like me – to be.
I will get it wrong more times than right, and I will have to ask for help. We will never be able to forget that she can’t have the life that other girls or even her own brothers have.
If she has any chance of not dwelling in anger or of gaining a bird’s eye view to grow to understand that there is more out there than just the deep water she is floating in, I have to teach her to give up on what she could have had if she had not been born with an extra chromosome and instead focus on what she does have right now.
She wouldn’t be Ellie without that little bit of extra, and I wouldn’t be me without it either. Life wouldn’t be as beautiful and wonderful if we didn’t have to experience any of the ugly or dread.
She is perfect, even when she doesn’t always do everything perfectly.
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