Advocating for your children is an instinct that kicks in for many the moment that you or your partner finds out you are expecting a baby. We advocate for our bodies, for the health of our growing child, and then, once our precious gem is born, for their well-being.
I didn’t know what fire burned inside me until I truly had to unlock my advocacy skills to fight for my child’s rights- and not for anything crazy or outlandish- but for things that would give her a semblance of a chance to be on an even playing field with her peers. I didn’t realize I would be fighting for her to have the most basic of necessities.
The moment I realized I was meant to put aside my politeness, my “I am so sorry to bother you” and my concern for feeling embarrassment, was when no one else believed me that my daughter was not typical.
And that moment started when she was born.
I advocated for people to listen to me- to see what I had seen- her missed milestones, her inability to focus, and her atypical development- but I did not realize, I would be fighting an entire system. A broken system that existed long before I became a mom. The healthcare system.
I decided to become a teacher, and of course not for the pay, but for my love of teaching and watching kids learn. I love watching an idea click in their head- and for that AHA moment to occur. Having good health benefits was also a nice plus. Our family experienced our own AHA moment as we settled into our new life figuring out how to tap into our resources.
At first, our family felt comforted knowing that our health insurance would be adequate for Hailey and her needs as we navigated these uncharted waters of the rare disease world and what it entailed.
However, it became increasingly apparent, that we would be facing some uncharted emotions that we never felt before ranging from anger, to sadness, to concern, to literal shock.
To provide more background, and as disheartening as it is for me to accept, our daughter struggles so much physically. She is over 3 years old and still works on head and neck control and is focusing on mastering her sitting.
So to say that we were devastated when we had to appeal our insurance company when they denied her a “stander” to help her gain strength and be placed in an upright position, would be an understatement.
I remember calling the insurance company after this first denial and sobbed. I reminded them that they had to pay for her two consecutive hospital stays just months before they denied her piece of equipment. I reminded them how because of her positioning, because she cannot stand, because she cannot sit, it is a fact that breathing and fighting off illnesses, specifically repository ones, can be life threatening. I reminded them that this can land her in the hospital. Who then must cover her hospital stay fees? Aren’t those pricier than a stander? Wouldn’t a stander allow her to be in a different position to allow her body to fight off these illnesses before entering a dangerous zone of a yet another hospital stay?
Then I realized, wow, I was putting a price tag on my kid’s life. And how is that fair? Who can say what she is worthy of?
We appealed, and after several more letters of necessity from various doctors, and proving her worthiness, she received her stander.
I wanted to, and in hindsight, wish I had, sent a picture of her first time she was in the stander. The look of relief and excitement on her face to finally have a new perspective of the world- there is no amount of money in the world that can be worthy of that moment.
Fast forward to recent times. Hailey is now almost three and a half years old, which means she is not an infant. This also poses new challenges. She is small for her age, but that does not mean she can fit into an infant bathtub. She cannot sit without any support in a bath. That leaves us with a very serious predicament. How can we safely bathe her?
After attending a clinic, and voicing our concerns, her physical therapist recommended that she be eligible for a bathing tub system, equipped with the necessary pieces that would help her safely keep her head in place as she enjoyed the basic art of a bath.
Well, months had gone by, and insurance denied this basic human necessity. Aetna said they would absolutely not approve this piece of equipment. The reason…” it was a convenience item.”
A CONVENIENCE ITEM??? Bathing is not
something that we partake in for leisure, or just because it is convenient. It is literally essential for everyone. Did the person who denied Hailey that right give up bathing for months at a time?
I was in shock. I was told by many that this is one item that is never approved.
I was floored. Hurt. Sad. Angry. I was flooded with those raw emotions I had felt so many times when I had to advocate for my child.
Here I was, having to PROVE her worth to a system. A system that is supposed to help but is set up to fail those who really need the assistance.
The hardest part about being a mom is having your heart exist outside of your body. And when you feel like your heart is broken, or not being taken care of, you find that you must piece together your inner strength, to fight for whatever you can.
I am one person, fighting for my one child, but I represent so many others facing the same situations. Together, we can keep advocating for what is right, and point out what is wrong. Our children are worthy and there is no price tag too high. Their lives are valuable and priceless. Together, we can look at the broken pieces of the healthcare system, and piece them back together.