The mere thought of going out in public with her special needs child exhausted Shelly. The oxygen tank, the feeding tube and all the backup medical equipment needed in case of emergency made it feel like a simple trip to the grocery store was nearly impossible. When Shelly did muster the strength to leave the house, she was often met with stares and questions.
“What’s wrong with your daughter?”
“Is she going to get better?”
“Will she ever have a normal life?”
The questions stung – and reminded Shelly of all the unfulfilled hopes and dreams she had for her child.
Disabilities can come in many shapes and sizes. While some are not obvious to the casual observer, many disabilities are immediately noticeable. A child with obvious special needs is often met with looks of sympathy, uncertainty or plain curiosity. People often don’t know what to say or how to react.
For parents who find themselves constantly answering questions – or deciding whether to volunteer an explanation – the toll can be emotionally and mentally draining. While it’s tempting to respond to awkward questions with brevity or even sarcasm, these can be opportunities to demonstrate Christ’s love to a hurting world.
When sharing a part of your family’s story is met with comments like “I don’t know how you do it,” it’s a chance for you to reaffirm the sanctity and dignity of every human life – in particular a child with special needs. Each and every child deserves a chance to be loved and cared for unconditionally.
The hope we have in Christ can transform these everyday encounters at the grocery store, the post office or at the never-ending litany of medical appointments for children with disabilities. These are opportunities to share a pro-life perspective with those who may not value life.
In such cases, actions often do speak louder than words. The way we care for a child with special needs speaks volumes about our love for Christ and our love for each and every human life.
Hope for the Hurting
As believers, we are told that the Christian life is an abundant one – but what does an abundant life look like when healing for our child doesn’t come?
How do we trust God when we watch a child suffer?
How do we find the strength and perspective to persevere in the midst of circumstances we didn’t expect?
Pope Francis reminds us of the beauty and joy of caring for even the most weak and vulnerable of our children: “Caring for life from the beginning to the end. What a simple thing, what a beautiful thing. … So, go forth and don’t be discouraged. Care for life. It’s worth it.”
Many parents of children with disabilities find it hard to relate to the same concerns that trouble families with healthy children. Special needs families might actually long for the normalcy of everyday struggles like potty training, learning to walk and registering their child for extracurricular activities without having to worry about a host of special accommodations.
For a special needs family, simply getting rid of a cumbersome piece of medical equipment might be cause to celebrate. A single step taken after months or years of physical therapy, or independently taking a single bite of food, can feel like summiting Mount Everest.
And in the midst of these life-altering and all-consuming circumstances, it’s not uncommon for anxiety to take root.
How will I pay for the therapies my child needs?
How will I manage to make time for my other children when my child’s disabilities feel so all-consuming?
How will I continue caring for my children when I feel utterly exhausted and worn down and there’s no end in sight?
When worry, fear and anxiety feel like constant companions, God says we can rest in His ever-present love. Deuteronomy 31:8 says, “It is the Lord who goes before you. He will be with you; he will not leave you or forsake you. Do not fear or be dismayed.”
As we walk through a life we never imagined for our child or our family, we can trust that God is with us in the midst of disability. When we are concerned about what the future holds, we can trust that He has already walked the road before us.
Dawn Vargo is a wife and mother of two young children, one of whom was born with a rare, and often fatal, congenital birth defect.