“Honey,” my mom would say, “Don’t stare. That’s not polite. No, don’t point.”
But I couldn’t look away from a child in a wheelchair. We all grew up politely looking the other way when we pass by someone with special needs.
Our special needs little girl, our Allie, is really our granddaughter. Allie was born perfectly healthy to my daughter when she was nineteen and single. Her life, our lives, were suddenly overwhelmed the day Allie became a brain injured child through a violent event when Allie was ten months old. She was shaken and suffocated by someone that was watching her when my daughter was at work. Allie was in a coma for ten days. She emerged from her coma severely disabled. Her diagnosis is cerebral palsy and quadriplegia.
As a single mother, our young daughter was not able to care for Allie. My wife and I could not fathom the thought of our granddaughter going into foster care in her condition. It was not an option. We did what we thought anyone would do: we adopted Allie and became the parents of a severely disabled little girl.
That was nine years ago. I want to say we’ve become accustomed to parenting a special needs child, but we haven’t. Being a parent is never easy, and parenting a special needs child is often an exhausting, all-consuming existence. Days are scheduled, routine and packed with hands-on care beginning with medicines and getting her dressed and into equipment needed to keep her upright while we feed her. At nine years old, Allie is not able to do any of these simple tasks for herself and, most likely, never will.
The joys of school
The part of her morning that is most fun is when I roll her down the walkway to meet the school bus. She shrieks with joy and excitement every time I roll her down our walkway, slightly running, stomping my flip-flops to meet the bus. Allie and the driver share a good laugh when she rides the wheelchair lift up onto the bus. There’s an attendant waiting on the bus that gives Allie compliments on her ensemble as she straps her chair into place for a safe, secure ride to school.
Allie loves going to school. Allie is in fourth grade this year. At school, education revolves around using cause-and-effect devices for communicating, physical therapy, speech therapy and occupational therapy. School nurses administer mid-day doses of medicine. The phys-ed teacher straps her into equipment that helps her walk and, recently, ride a big tricycle. The teachers, nurses, therapists, administrators and other staff at Allie’s school have dedicated their lives to children with special needs. We’d be lost without them.
Continuous medical care
The school day is interrupted many times with routine visits to doctors. Allie has epileptic seizures that are managed by daily medication. So we see Dr. Reznick, her neurologist, every 90 days. Once a quarter, Allie sees a rehabilitation doctor, Dr. Cohen, who orders changes on her wheelchair, prescribes orthotic braces and refers Allie to specialists when needed. On a recent visit, Dr. Cohen noticed that one of Allie’s legs was not growing the same length as the other. She (Dr. Cohen) referred Allie to an orthopedic specialist and we learned that Allie’s right hip joint was migrating out of the socket as she was experiencing a growth spurt. Due to her brain injury, bones and muscle growth were not in sync. Bones growing faster than muscles produced enough tension on her muscles to pull her bones out of socket. Surgery was needed soon or her hip would dislocate.
This surgery is traumatic and invasive. The doctor has to break and and reposition the femur. Then he breaks the pelvis and reshapes the hip socket to properly receive the joint. A metal plate is fixed to the broken femur to add strength as it heals. Finally, muscles have to be lengthened. This is done through a series of cuts in her adductor muscle and hamstring. The hip and leg are immobilized for six weeks by a spica cast extending from her abdomen to her right heel. The cast includes her left thigh with a cross bar installed into the cast to hold her legs apart in a Y-shape.
The cast adds twenty pounds to her weight which makes her too heavy and awkward for my wife to carry. My boss, graciously let me work from home while Allie was in the cast to lend my wife a hand during the six weeks of post-surgery healing and recuperation. Family and friends rallied around us to bring us meals and help with household chores.
Allie had this surgery six years ago so we were semi-familiar with the work and care Allie needed. We pray that as Allie continues to grow, this will be the last time she has to have this surgery, but we may have to face this again.
This sounds like a difficult way to live because it is. Raising children–any children–is no easy task and taking care of them when there are special needs adds to the difficulty. We’ve had to reorder our lives. We don’t get to do many of the things we used to take for granted (wheelchairs don’t go places that don’t have smooth, wide paths). People don’t plan social gatherings around our routine so we miss those opportunities (to be honest, we love having a bullet-proof excuse to opt-out of tedious events).
As difficult, inconvenient and unconventional as raising a special needs child is, the rewards for us in our personal lives are deeply satisfying. There is a transaction of unconditional love that flows two ways between us in our relationship with Allie. We’ve discovered a capacity to love that is bottomless. When this is tested, we reach the end of the trial long before we reach the bottom of our love. Her responses to our affection are uninhibited. There is a shorthand — an encoded language — between Allie and her caregivers that the only way to decode is through spending time with her. Joy flows when the connection is made.
A man after God’s heart
One of our favorite stories in the Bible is about King David when he is moved to bless surviving members of King Saul’s family. David was loyal to King Saul long after his death and David craved an opportunity to prove it. Saul had a surviving grandson, Mephibosheth, who, as a result of an accident, was crippled in both feet. David cared for Mephibosheth and provided for him for the rest of his life. God often referred to David as a “man after God’s own heart” and while David’s shortcomings were many, this act of compassion is an example of goodness that pays dividends to David as the giver more than to Mephibosheth, the receiver. Parents of special needs children know this experience firsthand.
This article originally posted in the May 2016 issue of the Good News of South Florida.
Hello Bryon and Susan. We miss you guys and of course we miss seeing Beautiful Allie at School and at Church.
I just read your blog and It brought so many tears to me. You are so absolutely right about the unconditional love for our children.
You and Susan are such amazing parents. God Bless you!
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