Fundraising and my medically fragile child with special needs

I know I’ve told this story before.  But I’m going to tell it again.  It helps to give a bit of insight into what it is like to raise a medically fragile child with special needs.

When Parker was being life flighted up to PCMC the first time, Reed and I felt secure knowing that even though Parker had a few surgeries ahead of him (how little did we know then) at least we had insurance.

Eight years of savings accounts, college accounts, and mission accounts being emptied by medical bills later, we consider ourselves experts in the field of the reality of keeping a medically fragile kid with special needs alive.

  • Medically fragile children bankrupt families.  Even wealthy ones.
  • Just because your child has a Medicaid waiver, doesn’t mean all of his needs are covered.  Hell, even private insurance and a Medicaid waiver doesn’t cover all of those needs.
  • Paying off medical bills takes a lot of time and most, if not all, of your ‘disposable’ income.
  • Kids with special needs, even without the medically fragile part are expensive.

Often, between child and a goal there stands only one thing.  Funding. 

small motor activity

We’ve had  fundraisers for Parker before.  Fundraisers are hard and humbling work.  Yes, there are foundations I could apply to, but I know how many kids are in need and how over loaded these foundations are.  So, except for Parker’s Make a Wish and one other time, I’ve turned down offers from foundations, pointing them in stead in the direction of other families with children so sick that the family could not even fathom hosting a fundraiser for their child…….all of their time and attention needed to go to keep their child breathing. 

It wasn’t that long ago that nobody even dared to believe that Parker would live long enough to ride a bike.

But he has.

He’s done so much more than just stayed alive.  He’s doing so well, and wants to do so much more.

fine motor activity with ice

I have a friend who once told me that she didn’t think she could ever fundraise the way I had.  She said that in my position she simply didn’t know what she would do.

Fast forward several years, and this same friend falls in love with an orphan and wants to adopt that little one.  Boy, are adoptions expensive.  I supported her in her adoption fundraising because a) I believe that all kids deserve good homes, and I know hers is one of the best, and b) because I have been in her shoes……loving a child so much but not having the money to give them the life and healthcare they deserve, and c) I know there are some things you can never fully understand until you’ve actually lived them.

squirting a squirt bottle

Now I know there are those of you who are saying, ‘yeah, but an adoption is a one time fund raising event.’

Oh, no, Kemo Sabe.  I have friends who, after adopting, need to fund raise for wheelchairs, physical therapy, cough assist machines and all kinds of other things their insurance won’t pay for.  Even things that (gasp!) Medicaid wouldn’t pay for.

A friend once asked  ‘Isn’t it hard enough keeping your child alive without having to worry about somebody getting their panties in a wad over the angst that you are going to become a millionaire from a yard sale?’

She took the thoughts right out of my thinker.

mardi gras beads fine motor activity

We are indeed hoping to raise the funds to get Parker to Now I Can.org.  If it doesn’t happen, it doesn’t happen.  What’s that they say about what’s meant to be will always find a way?  That’s what we’re going with.

 

playing with parachutes

Right now the specific need is giving Parker the opportunity to gain not just the skill to ride a bike, but to independently clean himself after a bowel movement, to put on his own pants, button his own shirt, manage his own sensory needs, take on a flight of stairs, kick a ball, and a zillion other things most kids just naturally acquire.

I spent a lot of time today tending to my vegetable patch.  It’s where I do some of my best thinking.  Over and over I kept hearing my friend Holly say; ‘Tell them to go to hell and then go and do. You’re a powerful mama and you are doing a great job.’

And it dawned on me.

Am I really going to let a  Troll decide what Parker’s  future is going to be like?

I think not.

 

 

 

 

About Tammy and Parker

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

Comments

  1. Frankie B says:

    I think it is SUPER awesome he is getting a bike. Like I said we have a Rifton and we LOVE it and now that our kiddo is strong enough ( which they said he “coiuldn’t do” that he rides to the park instead of using his wheel chair. I was just curious if the new therapy place was able to offer you their discount of a bike or if you were adding it to the fundraising portion of real life.