Day 26 of Blogging for TSC Awareness
by guest blogger Katie Nguyen (Rancho Santa Margarita, California)
When I was a teenager I would quietly slip into my sister’s bedroom at night and pray for God to heal her. I remember the last night I did this. The last chance I gave God to heal my little sister.
But let me back up for a minute. I suppose it would help to tell you about my sister first. My sister Alicia was born with tuberous sclerosis, a disease with no known cure and an unfair cause, genetic mutation. In her early months of life she would have up to 100 seizures a day. Twenty-four years, two brain surgeries and uncountable medications and attempts at managing the side effects of her illness, seizures are few and far between. She is nonverbal but communicates her needs well, and despite having 1/2 a brain, she has mobility on both sides of her body, though it is limited and she requires regular physical therapy. I am not going to share more about the specifics of her disease, I am going to share about the side effects. Not Alicia’s physical or developmental side effects but the effects her disease has had on our family.
In the foreword of The Hardest Peace by Kara Tippetts, Joni Eareckson Tada writes:
Everyone has a story. While sitting in my wheelchair for more than four decades, I’ve heard a lot of heart wrenching stories poured out in personal blogs, articles, books or face-to-face. Sometimes, though, people who suffer become so meshed in the details they hardly see the forest through the trees-for them, trying circumstances become an inconvenient stump or fallen log that only blocks their path to happiness. The latest medical report and PET scan are the trees of their day. They cannot see, let alone convey, the larger story.
It is a honed art, as well as a spiritual discipline, to be able to step back from the details and see how our own stories are woven into a much bigger one…God’s story.
In the early years of Alicia’s life our family lived among the trees. Alicia’s illness, paired with another major family tragedy, sent our family whirling into surviving and grappling for reasoning. We were on the horizon of a new “normal” and we were all learning to embrace it in our own way.
When Alicia was an infant I remember holding her while my step-mom went to make a bottle in the other room. A feeling of panic would come over me as she started spasming in my arms.
“She’s having another seizure,” I would exclaim.
An exasperated voice would ring back, “Just hold her. I’m almost done.”
The reality set in for both of us. A mother that could do nothing to stop her seizing infant. A sister feeling helpless as she watched her sister suffer. The rawness of not knowing how to support each other besides just forcing each other to be present in the hard moments became our “new normal”.
But I suppose I never did completely accept the hand that God dealt. I felt it was His job to heal Alicia. His duty to make things right. We were a good family. A church going, God loving family and He doesn’t let this sort of thing happen to people He loves, right? So I prayed. And prayed. I prayed at Church. I prayed every time she had a seizure. I prayed at night quietly by myself at her bedside. And then after that last night of praying for healing, that night I gave God His last chance to heal her. I stopped praying for healing.
I lived for years in anger and frustration with God. But slowly I came to realize the bigger picture. That bigger picture comes through the actions and example of my parents. The bigger picture comes into focus through the memories of family vacations done just like any other family, in annual ski trips with a modified ski seat for Alicia, in holidays that will always have childhood magic because of Alicia’s developmental stage and my parents willingness to meet her right where she is. The bigger picture pieces together with adult sons (my brothers) willing to drop anything to help, even if that means carrying 120 pound Alicia in her wheelchair 40 feet through the sand so she can see the ocean and giggle at the wind in her hair. The bigger picture makes sense when we see that through the years we have all come together in accepting our “new normal” and chose to love the best we could.
It’s hard for me to think that a God so great would allow such suffering for one little girl, a big girl now. It’s also hard for me to fathom the joy and kindness and acceptance and love He has brought out of the rest of us as a result of this girl’s suffering. It’s all a tough thing to accept and it’s impossible to make sense of.
Perhaps the healing I prayed for didn’t happen how I had wanted. Alicia is not healed in the traditional sense, but she is happy and her suffering is minimal (relatively speaking). She is loved, so loved. Her disabilities have helped us to discover our own abilities. She has inspired a family to do hard things because she has only ever known hard things. She has helped us to step outside of ourselves and step into loving with no expectation of getting anything in return. She has molded us, encouraged us, and inspired us to be better people. It’s not the healing I prayed for, but maybe it’s the healing God intended to bring to our family. Maybe its the beauty he intended for us to discover out of the brokenness Alicia was born into.
By Katie Nguyen, blessed to be sister to Alicia Hardie.