The One Thing I Want You to Know About Parenting My Child With Rett Syndrome

I sat down to write this story several times and got no further than a blinking cursor. I was stuck; how could one possibly describe in written words the life of parenting a child with severe disabilities? There are countless blogs about raising children with disabilities. So many stories, all unique, but with overlapping pieces: raising developmentally-different children, staying connected in marriage and intimacy, balancing work and home life, the fight for an inclusive community, navigating impossible medical decisions, personal self-care for parents and much more. So, while staring at that blinking cursor and having coffee with my mom, she suggested a simple starting place. “If you could share one thing with the world, what would it be?”

For my husband and me, it’s simple:

If our children go to sleep at night feeling loved, completely loved, we are doing the best we can.

I’m lucky to be the mom of two daughters, Lili and Ruby. Lili is a funny, cheerful, loving 5-year-old who likes swimming, horses, books, Curious George and ice cream. Ruby is an adventurous, friendly, mischievous 1-year-old who likes sprinklers, dogs, balls, stickers and cookies (pronounced “doooookies!”). In terms of rad kids, my husband and I hit the jackpot.

Unfortunately, Lili was born with a rare neurological disorder called Rett syndrome (RS). If you are not familiar with RS, I encourage you to learn more. In a nutshell, it profoundly impacts our daughter’s ability to interact with her world. Lili has difficulty with mobility; impaired use of hands; seizures; learning challenges; scoliosis; sleep disorder; and she cannot talk. For some, RS also includes feeding tubes, heart abnormalities and pulmonary dysfunction. Several aspects of RS can be fatal.

There is no “adjusting” to RS, because just when you settle into a new phase of the disorder, it changes. It throws you a curveball, like a new medical problem or the loss of a precious skill. As my husband and I say, the only thing consistent about RS is the inconsistency. And the big rub — all of the game-changers are hard, and scary, and make it more challenging for our children to live healthy, happy, pain-free lives.

As the parents of children with Rett syndrome, we are always one step behind and can’t keep up. It’s a devastating feeling to have little to no control over your child’s physical wellbeing. We’re reminded every day that we have no control. So we remember our motto:

If our children go to sleep at night feeling loved, completely loved, we are doing the best we can.

The following captures a typical day in our lives with Rett syndrome:

1 a.m.: Lili wakes, and anxiety sets in immediately. Is she OK? What’s wrong? Run through automatic checklist. Nightmare? Temperature? Hunger/thirst? Pain? Administer whatever best-guess aid we can, then try to get her back to sleep.

Two hours later, she’s still awake and on neurological overdrive, so the night-duty parent lays with her. Because, you see, this is when seizures happen. Sleep deprivation can mean seizures.

5 a.m.: She finally goes back to sleep. But your brain is wide-awake because nighttime is when the darkness creeps in. Deep in your brain. Fear, anger, sadness. You ask the universe questions you’ll never get the answers to. And you get irrationally mad at everything. Sometimes your child. Sometimes your spouse. And then you feel guilty and get mad at yourself.

5:30 a.m.: Lili’s baby sister is awake for the day. The parent at home tiredly starts the daily routine while the parent going to work helps as much as possible before departing.

7 a.m.: Lili is awake for the day, now five hours short of sleep. Time to get ready for school/therapy/doctor. Imagine doing every single activity of daily living for your child. You stretch, feed, toilet, dress, groom, pack, carry, etc. Somewhere in there you get yourself and baby sister ready. You wear sweatpants a lot.

9 a.m.: Collaborate with teachers, therapists, doctors, etc. Smile and try to function on a pitiful amount of sleep. Advocate for Lili’s needs like a protective mama bear. Meanwhile, Lili works incredibly hard. She must use all of her energy, focus and determination to accomplish the smallest tasks. She is so very brave.

11 a.m.: Head home for snacks, the bathroom, some kind of therapeutic activity and finish with video time. During video time, you play with baby sister and try not to think about the one million perpetually undone tasks around your home.

12 p.m.: Lunch time. Lili is great at making choices and expressing her preferences. She has lost her ability to self-feed, and almost all purposeful use of her hands, so you help her eat and drink.

3 p.m.: Go on an afternoon adventure.

Encounter boy at park: “What’s wrong with her?” Heart sinks. Remember he’s a curious, unfiltered child. Give your best explanation of Lili’s uniqueness to this inquisitive child. Silently appreciate his openness and wish more adults would ask and not just stare.

Encounter insensitive woman at grocery store staring at Lili, whispering to her companion. Drum up all of your restraint and courage to calmly, but assertively say, “I see you looking at my daughter. Can I help you?” But really, they break your heart and you want to cry.

Most of the time, you are immersed with your kids and feel joy participating with them in their own ways. Sometimes, the sadness sneaks in when you see other 5-year-olds riding bikes, playing with toys and telling their moms, “I love you.” They try to engage Lili but often lose interest when she can’t respond or play in like-kind ways. Ouch. You pull it together and repeatedly remind yourself, “Comparison is the thief of joy.”

5 p.m.: Spouse comes home, happy family time. Evenings are the best. They are special and you cherish them. They fill you with love, closeness and laughter.

7 p.m.: Divide and conquer. Each parent takes a girl and prepares for bed. Assist Lili with everything from bathing to jammies.

You hug her and tell her she’s special, you’re proud of her and you love her. You look at her beautiful little face with her big brown eyes and kiss her everywhere with intention, because you don’t know what tomorrow will bring.

You crawl into bed, kiss your spouse and try to sleep. The dread that comes with going to sleep is subtle and deeply ingrained at this point. But you know you need to get as much rest as possible because she may need you in a few hours. That’s why you’re in bed and it’s 7:52 p.m. Rinse, repeat.

I love my daughter fiercely and hate Rett syndrome with just as much vigor. The concept of my child preceding me in death is very real. It’s something no parent should ever have to face. And when that day comes, I want zero regrets.

If our children go to sleep at night feeling loved, completely loved, we are doing the best we can.

My husband and I have loved Lili fully and completely every day for five years. And in return, she has done the same for us. She has given us more love in her short life than some people feel over a lifetime.

And at the end of the day, it’s the most important thing. It’s the only thing we can all control.

A version of this post originally appeared on Perfectly Peyton.

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