The frustrating side of parenting Ellie... a timely rant

I’ve been reading Facebook status updates and articles and watching videos from the women’s march.  It had me thinking a little deeper and has reignited my frustration with our healthcare system.  I’m not saying it’s the fault of the ACA or discrimination or our dear healthcare team.  It’s a total system problem.  It’s the insurance and liability and a million other things.  It’s lack of care for people who need more than the average healthy, able person.  Frankly, I think it’s neglect.

It is NOT okay that my daughter STILL does not have adequate head support even though I have voiced my concern to many health professionals.  It’s not okay that I have so many hoops to jump through to try to give my child ability to do a miniscule number of things that my other “normal” child can do.  She can’t even turn the pages of a book or hold up her own head without support.  How is it okay that it has taken this long to get help?  Why is it okay that the stander that she very much needs for her development took so long to get (it’s not even here yet).  We had to wait 3 months for an appointment and then it took a couple more months just for insurance to approve one for her.  Umm… excuse me but I’m mortified that we have the technology in this country to help kids get into a sitting or standing position with special tools and support but we can’t get these tools to these kids in a timely fashion.  Isn’t this the most critical time in their development?

I’m outraged that we don’t have a better system to help families like ours and even more upset that there isn’t more help for families less fortunate.  I have a college degree and if I weren’t so fortunate to have married into a family who has been able to help support me in my educational, and career goals I’d be up a creek without a paddle.  I still pay student loans yet I’m VERY limited in how much I can work.  Again, I’m VERY fortunate because I was born and raised to be fierce and to give 110% to anything I strive for.  I work long days and long nights to help our community and my family.  I’m a Registered Dietitian Nutritionist and I’m so passionate about my job.  I can’t even explain how much joy I feel when people come back to me and tell me that they have implemented something I taught them and that they are so much healthier now or that they feel better than they ever have.  I live for the moments like the one I had the other day during a food demo.  An elderly lady told me she doesn’t eat kale because she thinks it’s disgusting.  I convinced her to try it and promised she could spit it in the trash if she didn’t like it.  She tried it and she liked it AND took the recipe home to try it again at home.  My point is, I volunteer in my community and I work but it is VERY hard for me to do these things and to do them regularly and consistently in my situation as Ellie’s mom.  What does all this mean to you?  We receive Medicaid.  We are NOT a drain on the system.  We work hard.  We give back.  We are like many other families out there who rely on assistance just to live an average life and give our children the best opportunities possible.  We just want to be normal.  Well, and sleep.  We want sleep too.
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I’m thankful for the fact that through a waiver program, Ellie has Medicaid.  If she didn’t, I’m not sure we’d have a house anymore and we for sure wouldn’t be able to care for Ellie.  Did you know that the waiver she has basically says that without home nursing care, Ellie would likely need to live institutionalized because of the extent of her needs?  Yeah.  Thank you to everyone who pays taxes.  You help us keep our daughter at home and alive.

Mom rigged up an old helmet to help me hold my head up so I can better see what I'm doing and play!

We’re allotted 84 hours per week of nursing care.  That’s 12 hours per day.  In that 12 hours my husband and I have to sleep, work, run errands and grocery shop.  And the kicker… it’s very rare we even have all 84 hours staffed.  There is a nursing shortage and with the state of home care, many nurses don’t want to do the work.  I can’t say I blame them based on some of the horror stories I’ve heard.  However I know our nurses love working with us and they feel loved and appreciated.  They are family now!  More on that in another post… When we don’t have a nurse, either my husband or I have to be home with Ellie.  Ellie must have a trained caregiver with her at ALL times.  If we go somewhere in the car, there must be a driver, and a trained caregiver at Ellie’s side.  Care doesn’t stop because we’re in the car.  If Jeff and I want to go somewhere together we have to take both kids with us (it takes about 1.5 hours to pack Ellie into the car) or we have to have a nurse.  This however, is an improvement because Ellie is growing stronger.  Not long ago she was less stable and we always needed a second person on hand at home just in case we needed to call 911 or to have an extra set of hands to start oxygen or use the ambulatory bag while supplies were prepped for an emergency trach change.  Just imagine how you’d plan your weeks without being able to get groceries or pick up prescriptions or pick up your second child from preschool while having to care for a child like Ellie.  This is our reality.

For those of you who know my family personally, you know that we live a healthy lifestyle and avoid addictive and unhealthy substances (okay we do have a little sugar addiction but who doesn’t?).  Ellie’s condition is genetic.  It wasn’t an accident during birth.  It wasn’t because I didn’t care for my body and the growing baby in my womb while I was pregnant.   Everyone knows there is risk with having children but this lifestyle and Ellie’s limitations are not what most people think of when they make the choice to have a child.  In fact, Ellie’s condition is so rare that she still remains undiagnosed.  The doctors and geneticists will continue to study our family and seek answers and other families who may have the same condition.  This is called SCIENCE.  And thank goodness we can rely on science because without it, Ellie wouldn’t be here and a piece of our hearts would be lost forever.

This morning I finally found the inside part of Nathan’s bike helmet and it’s been repurposed.  For now, it’s going to be used until Ellie can get a Headpod.  I’m not an engineer but this is my best attempt at giving my child the ability to do more.  Watch these videos and tell me it’s still not worth paying taxes to help children like Ellie.

I want to live in a world where people care for others and invest in the greater good. 
 
I want to live in a country where our tax dollars are used wisely and therefore people willingly instead of begrudgingly pay their taxes, feeling like they’ve contributed to something important.
 
Thanks for listening.  End rant.

It should not take this much time to get assistive technologies that can improve mobility, emotional stability, and cognitive development. The process needs to be easier and faster. Kids grow too fast and this time in Ellie's life is important. These tools are vital for her development. And haikus are fun ;)