By Gillian Marchenko
I sit in a hospital cafeteria, a half-eaten chicken sandwich and a bottle of water is positioned in front of me on a plastic tray that reminds me of grade school. My foot taps. A loud metronome sounds in my head. Tick, tick, tick, tick.
I scoop up another bite of chocolate pudding with whipped cream—an indulgence saved in my world for times like this. I look around for other parents. You can tell who they are either by exhausted expressions or by the bag labeled “This belongs to” that holds their child’s belongings during surgery.
I’ve been a special needs mom for seven years, and I’ve been in the hospital cafeteria countless times while waiting for one of my two daughters with Down syndrome. Today Polly has outpatient surgery. Hopefully it’s a quick in-and-out day—a tooth capped, a tooth pulled, and muck cleared out from the tear ducts in her eyes. But there have been times when I’ve sat here for a reprieve during much longer stays in the hospital—a scary test or brain surgery or recovery from a catastrophic stroke.
I put down my spoon and place my trembling hand on the white “This belongs to” bag next to me on the bench, containing the only things left from my child—her scuffed up gym shoes, a pair of jeans, a plain pink shirt. I wait for a page saying that she is out of surgery so I can go to her, take her in my arms, and hold back her hair if she vomits from the anesthesia.
This isn’t the stuff parents dream of when they think about having children. No one thinks their child will be in need of life-saving surgery. We all assume extra chromosomes or other special needs will happen to other families.
But this is the stuff of real life. Kids are born with special needs. Kids get sick. They fall off the monkey bars at school and break their arms. They wake up in the middle of the night with a tightening in the chest or a stiff neck or a fever of 104. They stop for pancakes with their mom and sister on a bright Sunday morning and have a stroke right there in the middle of the restaurant. And parents find themselves sitting listlessly in hospital cafeterias, spooning chocolate pudding to their mouths for comfort, gripping the hospital bag holding their child’s clothes.
We Can Be Honest
Questions abound in the world of special needs. Questions for God. Why her? Why us? And questions for ourselves. How am I going to make it through the day?
I’ve come to learn that God is fine with our kicking and screaming and fiery rants. He wants to know our thoughts. He cares about our feelings. We don’t have to be polite with him or try to make it seem like our faith makes us strong and ready for these trials. No, we can be honest. We can be raw.
But I struggle with other peoples’ questions. “How do you do it? Don’t you worry about your child’s health, her future, if she will make friends at school, if her life will bring meaning and happiness?” For a long time, I answered other peoples’ questions like a tiny, helpless child: “Of course, I worry about all those things. And I’m not sure how we do it.”
“Give Us This Day”
A few years ago my husband, Sergei, initiated a new morning ritual for our family. He proposed we recite the Lord’s Prayer before leaving the house. Full disclosure: at first I wasn’t into it. We have four children. Our mornings are hurried and hectic: “Who has the hairbrush? Where’s my black boots? Get out of the bathroom! I need to brush my teeth!”
I couldn’t work out how to fit one more thing into the morning before carting the kids off to school. Thank God my opinion didn’t win out. Most days we recite the prayer together, and my precious daughter Polly repeats it almost word for word with her older sisters.
This morning in the hospital cafeteria, I close my eyes and imagine Polly’s voice, a mere whisper in my ear. “Give us this day our daily bread,” she says. This phrase has become my go to answer when questions arise.
What I’ve learned through Down syndrome and autism and a stroke and seizure disorder, what I think I probably knew cerebrally as a believer but now rely on concretely, is my daily need for God. There’s just no way I can parent without him. The thought of raising kids with special needs, most days, still terrifies me. I am not a super mom. I lack patience. I can be selfish and lazy. I love my children, but I fall short of what I want to be as a mother. I can think of 10 women I admire as mothers. Most of the time, I am not one of them. So I plead for and rely on the Lord’s Prayer: Give us this day our daily bread.
God Shows Up
So when people ask me if I worry about my kids, I reply with the Lord’s Prayer, and I try to mean it and believe it, because spending time worrying usurps the little amount of energy I actually possess.
God shows up with just the manna I need for this day. He shows up when all six of us hang out in our pajamas on a long Saturday afternoon. He shows up when I lock myself in the bathroom for five minutes and cry out of frustration because my other daughter with special needs scratched me hard on the face—again. He shows up on days like today when I relinquish my child’s little body to a stranger and his scalpel. He is constant, regardless of my parenting fails or wins. God shows up. And although it is painful, I’m learning to show up too.
The Gospel of Mathew says that giving in to worry goes against God’s will for me as his child. “Therefore do not worry about tomorrow, for tomorrow will worry about itself. Each day has enough trouble of its own” (Matthew 6:34).
Richard Foster said to pray is to change. So I bow my head in the hospital cafeteria and whisper just like Polly: “Give us this day our daily bread.” And God answers: “My grace is sufficient for you, for my power is made perfect in weakness” (2 Corinthians 12:9).
I breathe out an amen as I pat the bag with Polly’s clothes like it is a loyal dog curled up next to me. After Polly gets out of surgery and recovers, God willing, I will take her things from the bag and put them back on her—her pink shirt, her jeans, her scuffed gym shoes. She’ll once again be mine, and we will toss the white bag in the trash and be on our way. But the words “This belongs to” will stay with me as a reminder that my child isn’t actually mine, but God’s. Placed in my charge for this day, I am merely her white plastic bag, holding the precious treasure known as her life.
God loves her too. God loves her better. God loves her more. He has a good plan for her and for our family, regardless of sickness, struggle, or strife. And if I am wise enough to ask for the manna needed for this day, and if I get quiet enough to listen, he will answer, and this is what he’ll say: “This, all of this—your worry, your family, your future, your day—belongs to me.”
Gillian Marchenko is a freelance writer in Chicago, Illinois. She wrote Sun Shine Down, a memoir about her daughter’s birth and diagnosis of Down syndrome while a missionary in Ukraine.
Befriending People with Special Needs
A frequent challenge for people with special needs is a lack of connections with other people. An article titled “51 People” (cincibility.wordpress.com/2012/06/08/51-people) looks at the types and quantities of relationships individuals with disabilities have—from family, paid service professionals, other people with disabilities, friends, and other citizens.
The article shows graphs of the average responses from 51 people who have disabilities and then compares the graph with the author, who is not labeled with a disability. Most surprisingly, 9 of the 51 people surveyed had only service professionals and other people with disabilities in their circles.
Connecting with peoplae who have special needs is vital for them and vital for the people befriending them, but it’s not always easy. Here are some principles to remember:
1. It’s not a charity friendship. Friendship is give and take. Learn from them and let them help you.
2. Bring them into your circle. Don’t isolate your friendship in its own box; help them connect to your family and friends too.
3. Be patient and persistent. Forming a friendship can take time.
4. Learn about their challenges. First by talking to and being with them, then from other sources, if needed.
5. Don’t attempt to change them or “fix” them. Love them for who they are. Be a friend rather than a social worker or counselor.