Saturday, February 28, 2015

REAL and RAW for Rare Disease

Gold and rubies abound,
    but lips that utter knowledge are a rare jewel.
~ Proverbs 20:15, VOICE ~ 


As I prepared to write my post today I thought, What can I say about this critical topic to make people care that I haven't already said before?  They already know that the biggest population this ministry serves next to families living with autism is families living with rare disease.

It seems that the most popular posts we share on this blog are the ones that keep it REAL and RAW, so here goes.

Because we parents raising kids with rare chronic illnesses, disabilities or diseases try to create a new "normal" in our households, we often make life look easy to the rest of the world.  We also have to block out some of the incredibly shocking parts of raising a child with rare disease or we would go CRAZY.  For instance, when I think about my son's Hemophilia A - Severe, one of the most shocking parts is that the cost of  his medication each year runs close to $300,000 just for the medication alone.  That doesn't include hospitalizations, special dental care, or other assorted specialized treatment.

Think about that for a moment with me...

There is an unusual "normal" we and many other families like us have created in our homes, administering an IV push in our homes multiple times weekly just so our child can carry on with simple daily life.  Those IV's don't always go so well.  Think about that.  This is something we need to deal with all before our children go to school in the morning.

Then there is the constant low-laying fear of death that ominously sits in the back of our minds each day.  It's not that we are even conscious that it's there, but it's always lurking, waiting to spring out at the slightest trigger.  I joke about having PTSD every time I see the school district's phone number on Caller ID, but it's really no joke.  We rare disease parents do live with that underlying fear that "this could be it."  

I thought maybe I was a little crazy, a little "off" with that fear until I had my daughter with a rare diagnosis to the pediatrician this week.  It was our usual doctor's day off, so we saw his partner.  When we got there, she stated how grateful she was that my daughter with erythema multiforme did not need a prescription for any sort of antibiotic, because that scares the daylights out of her.  REALLY?  I'm not the only one?  My DOCTORS feel this way too?  You know that you are not being a drama queen or exaggerating when even your pediatricians know that this rare disease stuff is life-or-death!

In fact, I'm really tired of the death part.  We have an incredible dedicated prayer team for the ministry.  I am SO heartbroken with the continual prayers we raise for the children who die too soon.  It makes me sick that we lost Nick to his seizure disorder.  My heart breaks that my friend, Mary, will never hold her Courtney, see her smile, or hear her sweet laugh this side of heaven again.  I'm frustrated that the cancer part of WAGR Syndrome came back and took the life of Amy too soon.  And just yesterday, precious Isaac left his family at the tender age of 4 years old after the affects of 9P Deletion took his life.

This, THIS is why I want you to CARE ABOUT RARE!

We need treatments.  It makes me SICK that our state passed a law legalizing use of CBD oil for medical purposes, but we STILL cannot get access to it.  More children die because of it.  

What's even worse, the infinite lack of compassion for families like mine never ceases to stun me.  Some of us have managed to look so "normal," people have no concern, offer no simple acts of kindness, support or aid.  They have completely blocked out that every day could be our child's last day on earth.  Others of us like Aria and Tahlia are in and out of the hospital way too often.  People develop a certain "compassion fatigue" where they are less and less attentive to these precious families.  Let it not be so, LORD!

WE NEED HELP!   No matter how much of our children's treatment is covered by insurance or Medicaid, there are ALWAYS additional costs that are uncovered.  Tax deductions for mileage hardly cover the cost of fuel and wear on our vehicles for all of those endless doctor's appointments and hospital stays.  The out-of-pocket costs for specialized dental care alone would have bought our family multiple trips to simply visit relatives on both coasts by now.  Our earning ability as parents is also challenged.  With how much work we must miss because of medical emergencies, one parent typically must have part-time or flexible employment just to be a family caregiver, if they can even work at all.

On top of the financial piece, we never stop needing prayer support and emotional support.  Be tender and loving.  Simply ask how we and our children are doing.  It helps to know that we have not suddenly become invisible.  We know our lives are hard for you to handle.  Imagine how hard they are for us!  But we LOVE our children, just as you would if they were yours.  So show some compassion, people.  Don't let this years World Rare Disease Day leave you unchanged.

PRAY:  LORD, today we pray in a special way for precious Isaac, who joined You in his forever glory yesterday.  We are happy for him, but so sad for those who are left here without the joy of his presence.  Comfort his loved ones in a special way on this Rare Disease Day.  Please also bless all of those living with rare disorders, the doctors, researchers, and advocates.  Open people's eyes in kindness towards this serious issue.  Send them to be Your hands and feet to those who are struggling.  In Jesus' Name we pray.  Amen.

~ Barb Dittrich

* SHOW THAT YOU CARE!  Donate at our GIVE RARE page, and invite your friends to donate on March 3rd for GIVE RARE.

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