What is the worth of a life?

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.

Over 50%.

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?

 

About Tammy and Parker

Special Needs Blogger, and homeschooling Mom, heavily involved in advocacy for all kids with special needs in Utah.

Comments

  1. Elizabeth says:

    If there’s something so wrong with Medicaid then why does it pay for everything insurance does not? We had primary insurance, private insurance we paid the full premiums on, it did not pay for my son’s therapies at all, not one little bit! Medicaid covers it all! So why not fix the broken system instead of saying we shouldn’t use Medicaid? I can’t afford to pay for his therapies out of pocket and why should I have to when I pay premiums for insurance?

    • Tammy and Parker says:

      Elizabeth, my point isn’t that there is something wrong with Medicaid. My point is that so many hear ‘Medicaid’ and think entitlement that is bankrupting America. Medicaid for the special needs and medically fragile crowd has a low growth rate.

      Trying to qualify for Medicaid in Utah can take as long as TEN years. And then when your child finally does qualify, many will accuse you of robbing them of their tax dollars by gunpoint. (I’ve had more people than I can count accuse me of this.)

      I also find it hard to swallow that a certain Utah Representative can raise over $158,000 for a Congressional bid that will help him in his quest to wipe out Medicaid for the weakest amongst us. This same congressional hopeful will tell you that if Medicaid was ended then Churches and private organizations would step up to the plate and do the job that Medicaid, or Parker’s Travis C. Waiver, does.

      I have yet to find anyone willing to put out the money that Medicaid covers to keep Parker breathing. The rent on his vent is $2,000 dollars alone. Just two of his meds run over two grand a month. The cost of a right heart cath? Incredible.

      A mother in our local special needs community choose to end her life due to the stress of trying to keep all her plates spinning. While I’d never be one to take my own life, there have been some really dark days here.

      And so many in Utah would happily rip out the supports that families of mine rely on to keep our kids breathing without understanding the reality of the situation at all. All you have to do is look at the $158,000 dollars Wimmer raised in just a few weeks to find the proof.

      Thanks for your thoughts…..

      Tammy and Parker

  2. maria cordner says:

    I don’t care in what kind of wing you fly but when a country can at least offer some worthwhile support to la w-abiden cityzens to curb unbelievable inflated health care costs that country is measuring pretty low to me and anyone that advises otherwise is not serving the public community! The real need that Medicaid covers is not breaking the system but the explotation by greed and waste are drainning it. I do believe in a promise of a God that there’s sufficient in this earth for all of his children (greed robes us of that promise!)

  3. maria cordner says:

    It should say “cannot at least…” “law-abiden cityzens”

  4. Elizabeth says:

    I don’t think there is anything wrong with Medicaid per se and I know what you mean and I don’t follow politics at all. Anyway what’s wrong is the system period. How can they ask us not to use Medicaid if typical insurance doesn’t pay for things that Medicaid does? That’s my problem, they want to take it away from our kids, we should pay for private insurance that doesn’t pay for our kids therapies? That is messed up, the system is messed up.

    I totally agree with you btw, I don’t think everyone is entitled to Medicaid and “entitlements” should not include Medicaid or Social Security that seniors worked their lives for, that is taken out of our paychecks, it’s not an entitlement we earned it but that’s another matter.

  5. Elizabeth says:

    I am sorry you live in a state where you have to deal with this guy being in office. What is his beef with special needs kids?

  6. maria cordner says:

    Need to clarify:
    My kid receives Medicaid services and have yet to find a family that does receive these services without needing them for some they don’t even cover most of their needs – I do not think that anyone with special health needs (either with disabilities or not) is greedy for receiving those services but the Health Services Corporations that have inflated prices for medical services and the bureaucracy that surrounds Medicaid are drained the few resources that should be made available to patients like Parker and others. Any politician doing blind jobs on this kind of policies won’t get my vote! – I apologize, English isn’t my first language.

  7. maria cordner says:

    Need to clarify:
    My kid receives Medicaid services and have yet to find a family that does receive these services without needing them. For some, they don’t even cover most of their needs – I do not think that anyone with special health needs (either with disabilities or not) is greedy for receiving those services but the Health Services Corporations that have inflated prices for medical services and the bureaucracy that surrounds Medicaid are drained the few resources that should be made available to patients like Parker and others. Any politician doing blind jobs on this kind of policies won’t get my vote! – I apologize, English isn’t my first language.

  8. Candice says:

    You are the first person that I have spoken with who “get’s it”. You said everything my heart and soul has has been feeling for well over a year since our sweet girl with Down syndrome was born and the struggles she faces daily. I couldn’t relate or agree more with your words.

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