Sometimes my disabled body makes me feel like a useless bystander, unable to be there for my kids the way they need, want, and deserve. Other times, I am in awe of God’s design, and I feel like the perfect mother for my children.
As a Friedreich’s Ataxia (FA) patient, my symptoms include progressive loss of balance, slurred speech, poor dexterity, and chronic fatigue. My FA symptoms have progressed to the point where I’m 100% dependent on a walker to move about my day. With my hands always holding onto my walker, that renders my ability to physically be there for my kids an unsafe impossibility in many situations.
I can’t carry them, I can’t hold their hands while we walk, I can’t run with them. There is so much that I physically can’t do for them because of FA. My son, Brooks, was 4-years-old when my symptoms progressed to the point where I needed to start using the walker full-time while my daughter, Collins, was not yet 2. Brooks remembers having a “healthy” and independent mom who didn’t need a walker. Collins can only remember mommy’s walker. To her, that’s just an extension of me, and that’s the way it has always been.
Both realities come with blessings and heartaches.
Brooks is now 6, and he is the most kind, patient, funny, and observant young man. Once, when I took my hands off of my walker to fill the kids’ water bottles, Brooks ran over and bearhugged my leg saying, “Here, mommy, I’ll steady you so you don’t fall and break your head off.” Only Brooks could make me laugh out loud while my heart is shattering as I see his reality through his eyes: his mommy needs help. Brooks will occasionally think out loud and say “Mommy, I wish you didn’t need that walker so that you could run and play with us.”
Collins is now 3, and she is a smart, passionate, funny, strong-willed-blessing. “Mommy’s walker” was one of Collins’ first words and she doesn’t express any ill will towards it. One day, when we were on our way out the door, Collins kissed the walker that I leave in the house and said, “Bye, Snack Wagon, thanks for helping my sweet little mommy walk!”
Both of my kids accept that my walker is a reality, that it is just a part of me, but they process that information differently. While I am the one physically dealing with FA, it is happening to all of my loved ones. My disease is as big a factor in their lives as it is in mine.
The other day, we met up with friends at the school playground. The playground surface is filled with inches of loose pebble. Soft surfaces like this render my walker completely useless because it gets zero traction and sinks.
My dear friend looped my arm and let me depend on her while she carried my walker with her other arm. We made our way over to a bench so she could “park” me and then run around wrangling our collective 5 children. When the stars would align and every kid was playing happily, she was able to come and sit for a few minutes.
The kids had a blast swinging, climbing, balance-beaming, and just monkeying around. Of course, there were plenty of “mom visits” when they would come to tell us to “watch this,” tattle on someone, or have us kiss non-existent “boo-boo’s.” I did what I always do; tried my best to be an involved spectator. But I hated just sitting there. I felt so helpless making my friend manage all of the kids.
I would rather have been playing freeze tag, racing my son across the monkey bars, or climbing up to rescue my daughter when she got scared on the tallest tower. But I couldn’t; my body won’t let me.
When it was time to leave, we rounded up the kids, and I took my friend’s arm. She swung the walker around to pick it up right at the same moment that my emotionally explosive daughter, Collins, was running by and accidentally hit Collins in the head with the (surprisingly hard) handle. Collins immediately started scream-crying and ran away to hide under the playscape.
My friend steadied me and ran after Collins, apologizing profusely. I felt so disabled watching my friend chase Collins around the playground while Collins just screamed. All I was thinking was “If I was normal, A.) she wouldn’t have gotten hit with my walker because I wouldn’t have a walker and B.) this would have been a non-incident because I could have just grabbed her and kissed her tears away while carrying her to the car.” All she wanted at that moment was for mommy to come scoop her up and tell her that everything is ok. But I couldn’t do that.
We eventually got to the car (with bribes of ice cream and the Aladdin Soundtrack on the way home). I was drained. I had nothing left physically, emotionally, or mentally. All I could think was, “I hate my body. Life with FA is too hard. This is unfair. I don’t want this diseased body anymore. My kids deserve better. I deserve better.” I cried myself to sleep that night, begging God to take away FA and leave peace and joy in its place, like I have countless times since my 2013 diagnosis.
Later that week, my beautiful Brooks recited Psalm 23, which he has been memorizing in kindergarten.
The Lord is my shepherd, I shall not want.
He makes me lie down in green pastures,
He leads me beside still waters,
He restores my soul.
He guides me along the path of righteousness for His name’s sake.
Even though I walk through the valley of the shadow of death,
I will fear no evil, for you are with me;
your rod and your staff, they comfort me.
You prepare a table before me in the presence of my enemies.
You anoint my head with oil; my cup overflows.
Surely your goodness and love will follow me all the days of my life,
and I will dwell in the house of the Lord forever.
Brooks’ sweet reminder of God’s goodness was overwhelming to me. God uses my weakness for His strength. God comforts and restores me when I follow His lead. God consistently fills in for all of my inadequacies, physical and otherwise.
I can either pout about FA and the idea of the mom I thought I would be, or I can embrace the mom that I am. I can strive to be the mom my kids need me to be. I can find ways to keep showing up for my kids. I can take comfort in the total acceptance from Collins. I can find strength in Brooks’ encouragement. I can find joy in the fact that my husband still adores me and loves me just the way I am, ugly crying and all. And I can find peace in the truth that my Creator sees my heartache, knows my wavering heart, feels my pain, and still loves me an incomprehensible amount. I can trust that He knows the plan for my life and my disease in ways that I likely won’t be able to understand while I’m on this side of Heaven.
My kids might be missing out in some ways because of my disability, but they are growing in beautiful ways because of it, too. They are learning the value of struggle. They are learning flexibility, compassion, teamwork, and how to be helpful. They are learning how to process emotions and act fearless. While FA isn’t my favorite chapter in the story of my life, I am proud of what God has allowed me to do through FA. I am thankful that God has allowed me to use my disease to shine His light. I am proud of the positive impact having a “disabled mom” will have on my children.
I am the exact mom that Brooks and Collins need. We challenge each other, complement each other, grow together, support each other, and learn together. It was God’s design for me to be “mom” to these two specific kids; my responsibility is to embrace all that this life entails and keep moving forward.