When Marie Holmes, one of the three recent Powerball winners sharing the $564 million dollar jackpot officially claimed her prize, she said the best thing about winning is being able to provide for her children. Holmes is a single mom with four kids and was living in a trailer. And most parents hearing her story will believe the stereotype that when she said “provide for” she meant food, housing and a secure future for her children, all under the age of 7.
Holmes has one child with cerebral palsy, which suddenly makes her not so different from me. I know what Marie Holmes meant about wanting to provide for her children. I am the mother of a special needs child, and I know the hurt of wanting to provide for your child, and also the advantage of being lucky enough to do so.
The hurt means spending your nights clutching your sobbing toddler tight against your chest, not knowing what is wrong, when all you can offer is the comfort of your touch, then quietly wipe your tears away.
The hurt is your child missing milestone after milestone without any visible reason or a diagnosis that any local doctor can find. Being lucky means being desperate and fortunate enough to fly across the country for an expert second opinion. Being lucky means getting your diagnosis and finding out that your local children’s hospital made a grievous error, then coming home and trying to make a difference for the kids in your community.
The hurt is watching your toddler limited by her lack of movement, unable to crawl or walk. Being lucky is watching your 3-year-old child take her first steps, humming as she makes her way across your family room floor, using a walker you were able to self-purchase, after being denied by your health insurance.
The hurt is discovering your almost non-verbal four-year-old is legally blind and has little functional vision and being lucky is having the resources to arrange for her specialized glasses to be ready only seven days later.
Being lucky is coming home from the pharmacy with your child’s much-needed seizure medicine on a Friday night, even when the pharmacy’s new out-of-network insurance status means having to pay out of pocket.
Being lucky is being able to purchase a manual wheelchair for your child to use when she is sick, so insurance won’t deny the power wheelchair she needs for school and to use the rest of the time.
When your daughter’s ADA rights are violated, being lucky is being able to hire an attorney when the public school doesn’t want to move the accessible only by elevator, self-contained special needs classroom from the second floor to the empty, same building first-floor location directly below it.
When you begin your journey as a parent of a child with special needs, the first lessons you learn are about limitations, patience and accepting that you can't always give your child what she needs.
Interventional therapies, natural solutions, and new technologies all come with an expensive, almost always out of pocket price tag.
So how much would you pay to find a diagnosis for your critically ill child? How much would you pay to hear your child talk? How much would you pay - so that your child can someday walk or live a longer life?
When Holmes describes herself as lucky, I don’t think she meant winning the lottery. Instead, she was giving voice to every special needs mother’s desperate dream of just wanting to be able to care for her child.