(Sharon, I finally got this done.Â I hope it is what you were dreaming of!)
It started with a 4% chance of something being not quite typical.
Parker’s short femurs and my advanced maternal age.
I remember my OB telling us not to worry, that these were odds good enough to take to Vegas.Â That all of the babies he had ever delivered with Down syndrome had been totally unexpected.Â “Lightening Strikes”, he called them.
But, sometimes, I think a mother just knows.
So, I planned on a child with Down syndrome.
A healthy child with Down syndrome.
And discovered this mother doesn’tÂ always know everything.
Parker was born 6 weeks early, complete with not only that extra chromosome (which we didn’t give two hoots about) but an imperforate anus, pulmonary hypertension,Â and a host of other medical conditions.
I remember driving up to the hospital, while a day old Parker rode in the ambulance ahead of us. I was thinking that the least of our worries would be how to pay for the surgery Parker would undergo in the morning.Â Our children’s hospital boasted that no child would be turned away due to ability to pay, and that they accepted what a family’s insurance paid out.
Yeah.Â Unfortunately, theyÂ didn’t tell youÂ this offer was mainly extended to those who had crossed the border illegally.
Have a job?
You, they hunt even to the depths of bankruptcy.
And the thing about accepting what you insurance paid?Â Yeah.Â Not so much.
As our 6 weeks premature, not quite 5 pound son was wheeled into the operating room, a social worker ran down the hall after my husband and father wanting to know right then, how we were planning on paying for this surgery, because the name of the insurance company we had provided would only cover a portion of all this.
Right then and there the social worker ran the numbers and discovered that Parker wouldn’t qualify for SSI.
Unlike many states, in Utah a child born with Down syndrome doesn’t automatically qualify for Medicaid.Â There is an exceptionally longÂ wait before one receives any type of assistance here.
It all comes down to your income.Â In Utah it doesn’t matter if you are paying out so much for medical needs that you can no longer make your house payment, it only matters what that pay stub reads.
The best offer we receivedÂ from the hospital came with an interest rate higher than our credit card rate.
And so we filled up our credit cards trying to keep our kid alive.
We emptied out our savings.
Our friends held fundraisers.
Our extended family circled the wagonsÂ to help us keep a roof over our heads,Â and bill collector calls to a minimum.Â My parents paid to replace our water heater and a kitchen faucet during one of Parker’ s many hospital stays.Â Â They’ve also been there when my oldest kids have needed help in making tuition payments and have lent a major hand in making sure Christmas has been served up the last 5 years.
It has truly required a village to keep this Brave Hero of ours alive.
Parker’s formula cost $150.00 a box.Â A box lasted about 3-4 days.Â Our insurance doesn’t cover any type of formula. I remember calling WIC to see if Parker could receive assistance.Â I have never been treated as rudely as I was that day.
You don’t need proof of citizenship to get WIC.
Yet my son, was turned away with a verbal sneer and not a small amount of scorn.
So instead of receiving WIC, a dear friend who is a master shopper and couponer,Â delivered loads of groceries to our home on a regular basis.
I remember the day I set theseÂ two goals:
- We would figure out a way to keep our home.
- We would keep Parker alive.
It didn’t matter if I lost my car,Â furniture, or wedding ring.
It didn’t matter if I couldn’t purchase new stuff.
When in a situation such as ours, stuff tends to loose it’s appeal.
Just finding the money for the fuel to get up and back from Parker’s doctor’s appointments, surgeries, and therapy appointments was a worry.
We had to make changes.Â Â Changes that requiredÂ us to look at our lives in an entirely new way.
I realize now theÂ things IÂ first thought to be overwhelming,Â became the experiences that now empower me.
Understanding that I can make do and even MAKE BETTER, with little more than imagination and some hard work is exciting.
We began taking our garden more seriously.Â Instead of growing things just for the fun of it, we grow what we need and will use.Â Our garden space is limited.Â Carrots are cheap.Â Organic tomatoes are not.
We relied heavily on our food storage.Â We were so thankful that we had put food by.
Before,Â our food storage consisted a huge amounts of name brand mixes and dinners.
Now it is filled with whole grains, wheat,Â powered milk, olive and coconut oils,Â pastas, vegetables, fruit, and Â dehydrated itemsÂ from the LDS cannery .Â We still have a long way to go.Â Â Â I purchase ingredients to make as much as I can from scratch.Â I’m hoping to find a local buying co-op for more affordable organic choices.
I hit the yard sales with my 14 year old.Â Â Not just for the fun of it, but with a list and a plan.Â Â I shop for clothes for my kids. I yard sale for necessary items for my home.Â I search for supplies in case the electricity goes off.Â I keep an eye out for canning supplies.Â I buy home school materials.Â I look for items to set back for birthdays and Christmas.
I even yard sale for items to decorate my home.Â Gone are the days where how much you spent defined your worth.Â Ingenuity and creativeness have been found much more valuable than anything you can simply buy.Â My husband created a beautiful waterfall in the front of our house with items that were free and scavenged.
We support and enjoy hand me downs. Everything from clothes to books to toys to cloth diapers.
Yes, cloth diapers. AÂ bit of bleach along with a day in the hot sun works wonders, folks.
As a matter of fact, I don’t turn anything away.Â (Okay, maybe not anything.)Â What I can’t use, somebody else can.Â And does.Â I always pass stuff on to others.
If we don’t have the cash, we don’t purchase anything, even groceries.Â We make do.
Nobody ever died while developing the skill of delayed gratification.
This summer I won’t be plantingÂ our usual amount of flowers.Â I’ll replace them with different varieties of winter squash that I can store and use in Parker’s blenderized diet next winter.Â If I can talk Reed into it, I’ll be planting blueberry bushes along the west side of our home.
I’mÂ putting out the word to anyone locally who doesn’t spray their fruits and veggies that I’d love to barter fresh homemade breads,Â home grown herbs,Â etc. for your extra garden and orchard windfalls.
I’ve been downsizing in as many ways as I can think of.Â Purging.Â Â Less stuff is wonderful.Â Who knew?
It’s been a long, hard battle journey.Â There is still much further to go. Â Parker does have Medicaid now.Â But with the way our Utah legislature votes, who knows how long it will last.Â We are working to prepare for a day when there may be no Medicaid.
(Even with Medicaid,Â Parker is still a seriously expensive kid.)
So I’ll continue to hone my new skills, challenging myself to higher levels with hopes of bigger and better outcomes. I’ll can, freeze and dry more this year than last.Â I’ll tighten the grocery budget up a few notches.Â I’ll be hitting the yard sales with increased determination.
It’s amazing the joy I’ve discovered not only in that extra chromosome ofÂ Parker’s, but also in how our family has pulled together and grown in our determination to provide our Brave Hero with the medical care he needs.
Sharon, from Casaubon’s Book calls this adapting in place.
I call it getting smarter.
And I wonder why it took me so long.