by Meredith Gardner and Jody Wygans
Have you ever felt all alone in this world, as if no one quite understood your plight in life? I think most of us have moments where those dark thoughts creep in. But recently I have come to discover there’s a group of individuals who live with these feelings on a more regular basis. I’m speaking of the families of special needs children and the children themselves. Most of us have no true understanding of the struggles they face daily. We might have compassion for those around us who are in the depths of giving care to medically fragile individuals, but like many things, until you live in those shoes, it’s hard to understand the journey.
I have been blessed to spend a significant amount of time with a special needs family and have come to understand the great need they have for more community support. These mamas and daddies are mentally, physically, and emotionally exhausted most of the time. Many of you know the exhaustion that comes from bringing a newborn into your home. I remember being in the throes of caring for my own newborn children and thinking through my exhaustion, “this too shall pass.” Parents of special needs kiddos have been experiencing that sort of exhaustion (and then some) for as many years as they have tended the needs of their child, with no end in sight.
On top of the mental and physical exhaustion, the financial burden of caring for a child with severe special needs is great. Most of us never stop to think of that aspect of life for these families. To purchase a minivan with a wheelchair lift can easily add $20,000 to the price of the vehicle. Necessary home modifications that allow for the care and movement of these kiddos are even more costly. These aren’t luxury items, these are necessities. There are programs out there that will help cover a small portion of the cost, but these families who are already taxed for time must fill out mounds of paperwork to even attempt to take advantage of financial assistance. And, in the case of assistance with home modifications or chairlifts, the funds generally fall far short of covering the need. They are often only offered once in the lifetime of the child. As a result, parents often wait until they can no longer lift their child before they take advantage of these programs. They do this because they know that as their child grows the need increases and they fear the need will be greater later down the road. In the meantime, they abuse their own bodies as they manually lift and transport their children much longer than what is healthy.
I am on a special quest to help lighten the load for one such family. This family adopted a little girl with significant special needs. Carol-Lynn is a miraculous child whose list of diagnosis is lengthy. She was born with a brain malformation called holoprosencephaly. In addition, she lives with epilepsy and cerebral palsy. She’s unable to walk or talk. We treat her as if she can understand all that goes on in the world around her because we truly believe she can.
What I have learned in my time with Carol-Lynn and her family is that this little girl needs a home that’s adapted to her specific needs. A home that provides her family with the ability to care for her needs. I am passionate about making a difference for this one family, this one special child. I encourage you to find the opportunity to reach out to one of the many families raising special needs children like Carol-Lynn so we can generate awareness about the realities families caring for special needs children are facing right here in Mesa County.
Get to know these children. Become their friends. Let these families know that there is an entire community of friends who wish them well and want to lighten their burden. Bring light to what can sometimes feel like a dark and lonely world. I can promise you that as you do, you, too, will feel the light in your own life!
About the Authors: Meredith Gardner has been a stay-at-home mom of 5 girls for 24 years while also dabbling in part-time jobs as a substitute teacher, testing technician, furniture restorer, and fundraiser. She loves tennis and vacations with her family of any kind. Jody Wygans is a Christian mother of 4 sons and 1 beautiful daughter, passionate about family and friends, loves animals and finding beauty in the world around us, enjoys crocheting, board games and watching Survivor!