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One of my favorite graphics I’ve seen that can perfectly sum up life.

I’ve been having a lot of statue days lately, mixed in with a few pigeon days. Keeping up with everything is just hard. Running around to pick up meds, go to doctor’s appointments, schedule more appointments, try to figure out the secrets to life. Here’s a hint: there are no secrets.

I mentioned lots of paperwork recently in a blog post a few weeks ago. Paperwork involving the Agency for Persons with Disabilities (affectionately known as APD). It took a lot of effort to gather the appropriate documentation, medical evaluations, school evaluations, proper diagnosis from Doctor’s and to actually complete the relatively short application.

This was the first time we got approved for any assistance. It was surprising. The shocking part: We got a Category 7 for the waitlist.

Wait, what?!?

Yup, that’s right, my medically complex and fragile sweet daughter was categorized 7 which translates into little to no chance of getting services until my little warrior turns 18, because that’s what the representatives told a crowd of disgruntled people at the Family Cafe conference back in 2018 when we attended.

I was so shook by the categorization that I was literally balling by the time I got home from the mailbox to our house.

Oh yeah, and by the way, since we got clumped into the category 7 column, we also don’t get a chance for an appeal.

Fantastic. Super. Great.

Seriously. I was feeling utterly defeated. Pretty much since then, I’ve felt like garbage. I just want what’s best for my daughter to give her the best chance at life that I possibly can.

And I get stopped at every turn.

We got denied coverage for everything we’ve asked for help on with Insurance:

  • Incontinence Products
  • Medical Bed (Remember she’s still in a crib for safety)
  • Lift System
  • A customized Wheel Chair fitted for her.

The school wants us to get additional services for her outside of school, once a week each of Physical Therapy, Speech Therapy, Occupational Therapy. I get 12 for the entire year. After that, it’s completely out of pocket.

I get asked a lot why I look so tired, or why I looked so stressed. This is why. I’m doing everything the right way. I fight by the book. I have a job. I have private insurance.

I get told to get a divorce. I get told to quit my job.

Why is this the answer? Why do I have to work the system to get my daughter, who didn’t ask for any of this, the things that she needs in life?

I’m sorry for the rant, but this is why life is just hard some days. As a parent, you want to do everything you possibly can for your child. You want to give them the life that they deserve. You want to give them the world.

Some days you’re the damn statue. I really hate being a statue. I could use a few pigeon days. But always remember… Don’t let the pigeon drive the bus.

Until next time, and promise with a more fun post. I’m looking forward to some fun times with some of my favorite ladies coming up soon and they always put me in a better place.

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Sara is a mother of two, wife and full-time employee. She's also a parent of a child with special needs.