Doing The Best We Can

A Guest Post by: Gina Mueller
I sat down to write this blog entry several times and got no further than a blinking cursor. I was stuck; how could one possibly describe in written words the life of parents with a severely disabled child?   It would be impossible to succinctly capture the many and varied aspects of our life in one entry. 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 believe this to be true for every child in every family. And often times, in a family effected by disability, this is the only silver lining for the day. The only thing we can control.
I am lucky to be the mom of two daughters, Lili and Ruby. Lili is a funny, cheerful, loving five-year-old who likes swimming, horses, books, Curious George and ice cream. Ruby is an adventurous, friendly, mischievous one-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 . If you are not familiar with RS, I encourage you to learn more. In a nutshell, it is a debilitating syndrome that 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.
In a briefer nutshell: Rett Syndrome is the devil and I hate it every single day.
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 well being. Control. Every day we are reminded 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 with Rett Syndrome:
1:00am: L wakes, 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 is still awake and on neurological overdrive, so the night-duty parent lays with her. Because, you see, this is when seizures happen. Sleep deprivation = seizures.
5:00am: 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 ALWAYS, you feel guilty and get mad at yourself.
5:30am: L’s baby sister is awake for the day. The parent at home tiredly starts daily routine while the parent going to work helps as much as possible before departing.
7:00am: L 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 sweat pants, a lot.
9:00am:
Collaborate with teachers, therapists, doctors, etc. Who is it today? Neurologist, geneticist, gastroenterologist, ophthalmologist, orthopedist, developmental pediatrician, regular pediatrician, speech therapist, occupational therapist, physical therapist, hippotherapist, movement specialist, pulmonologist, endocrinologist? Smile, and try to function on a pitiful amount of sleep. Advocate for L’s needs like a protective mama bear. Meanwhile, L works incredibly hard. She must use all of her energy, focus and determination to accomplish the smallest tasks. She is so very brave.
11:00am: Head home for snacks, toileting, 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.
12:00pm: Lunch time. L is great at making choices and expressing her preferences. Sadly, she has lost her ability to self-feed, and almost all purposeful use of her hands, so you help her eat and drink.
3:00pm: 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 L’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 L, 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 five year olds riding bikes, playing with toys, and telling their moms, “I love you.” They try to engage L, 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.”
5:00pm: Spouse comes home, happy family time. Evenings are the best. They are special and you cherish them. They fill you with love, closeness, laughter.
7:00pm: Divide and conquer. Each parent takes a girl and prepares for bed. Assist L with everything from bathing to jammies.
You hug her and tell her she is special, you are proud of her, and you love her. You look at her beautiful little face with its big brown eyes and kiss her everywhere with intention, because you don’t know if you will see her alive in the morning.
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 7:52pm.
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. 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, that’s the most important thing. It’s the only thing we can all control.

---

 
 

Gina Mueller is a 34-year-old Portland, OR native; happy wife to her incredible husband; mom to two lovely daughters; professional counselor in private practice; proud Oregon Duck and outdoor enthusiast. To learn more about Rett Syndrome: www.rettsyndrome.org
 
 

---

 
 
Follow Stacey for updates on Perfectly Peyton. Click the link and “LIKE” the page:
Stacey Skrysak’s Facebook Page