As I stood watching a medical team make an assessment of Parker’s many issues after his first life flight to Primary Medical Center, a Pediatrician made his way toward me and shared this bit of reality:
Over 50% of all marriages end after the birth of a child with special needs.
This was brought to light recently when I was told about a mother to a child with severe CP. The stress of the severeness of the CP caused marital issues. The stress of the chronic illnesses, the intensity of the medical issues and 24 hour care this child required caused this Mama to believe that her only respite could be found at the bottom of a bottle of pills.
Many caregivers of children with special needs are being diagnosed with PTSD. Post Traumatic Stress Disorder is most often associated with those coming home from the battlefields of war.
But there is another battlefield, much closer to home for many of us, that is bringing on this severe anxiety disorder that can develop after any event that results in psychological trauma.
Like watching your kid circle the drain for years on end.
Or the worry associated with how a family is going to pay for the medical treatment necessary to keep their loved one alive.
The often constant decision of whether to pay the rent, buy food, or supply your child with the medications that keep them alive brings on it’s own brand of psychological trauma.
It’s a fallacy, this idea that ‘there is help out there somewhere.’ In the state of Utah DSPD lines are YEARS long. The public hears the word Medicaid and immediately thinks lazy, refusing to work, born to live off the dole families.
The reality is that within the special needs population, Medicaid has grown at a steady and very low rate. In other words, it’s not the Medicaid for the medically fragile or those with special needs that is bankrupting our state.
Yet to hear many in this state talk about the wicked entitlements under which Medicaid is cataloged, you may find yourself thinking that you are robbing them by gunpoint. Unless of course they look you in the eye and accuse you of it first.
You may even be advised to hold a BBQ or find a Church that can help. Neither of these options work, btw, regardless of how great a sound bite they may make. Some needs are too great and too long lasting.
How much stress could you handle before you cracked?
What are the odds of you, or someone you love, finding themselves in the situation this Mama of a child with a severe disability found herself, when she believed the only relief she could attain was to take her own life?
Those odds may be greater than you think. Nobody ever believes they are going to find themselves in a situation where their marriage is dissolving while their heart and soul is being crushed under the weight of 24/7 extreme care giving.
I live in a state where Carl Wimmer can raise tens of thousands of dollars almost over night in order to make his way to Congress and put an end to the life line that keeps so many kids with special needs breathing. (BTW the latest total is that Wimmer has brought in around $158,000.)
To put this into perspective, we’ve held many fundraisers for Parker in trying to be as self sufficient in his needs as we can. We NEVER EVEN CAME CLOSE TO THIS KIND OF MONEY. Hence my belief that in regards to the idea of hosting a BBQ to keep a kid alive … it ain’t gonna fly.
What is the worth of a life?
Hopefully it is still more valuable than a popular Utah political stance being used to get elected to public office.
The true heart of a state and it’s citizens is reflected in how it treats it’s weakest and most helpless among them.
Where do you stand?