Today is Arthrogryposis Awareness Day. If you don’t know someone with Arthrogryposis, then you
probably have no idea what I am talking about.
My daughter Veronica was born with Arthrogryosis. It’s a
congenital condition that causes the joints not to form correctly. Considering the
fact that the body has over 300 joints, there are many variations of this
disease.
Despite the fact that Veronica has a hard time walking and
bending her knees, her case is actually quite mild compare to most of the other
children we have met with the disease. When Veronica was born, she had clubbed
feet, her left arm didn’t move, her hands her pulled toward her inner forearms,
her head was cocked to the left side, her knees didn’t bend, and her hips were
dislocated. I was told she would never walk.
But after the hell I had been through with trying to
diagnose her, walking was the least of my concerns. I just wanted her to live.
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| Veronica scuba diving |
And boy has she lived. There is something very unique about
all the Arthrogryposis children I have met at different children’s hospitals and
Camp Just Like Me. They seem smarter than most children and they have an amazing
sense of humor. And it’s not just my motherly pride talking--I’ve had doctors
tell me that they have observed the same mannerisms. Their smiles are inspiring and they grow up to
do amazing things as adults.
I have been extremely lucky with Veronica. When she was
first born, we lived close to Seattle where they have one of the few
Arthorogryposis clinics for children. Veronica was seen by their doctors when
she was 5 days old and I believe that is the reason she can walk and use her
arms today.
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| Veronica at Camp Just Like Me |
We are also lucky that we have met other children and adults
with Arthrogryosis. Some people live their entire lives without meeting anyone
just like them. It is a relatively rare disease that occurs in about 1 in every
3,000 births. I had never heard about it until the day the doctor told me my
baby had it and even the doctor couldn’t pronounce it correctly.
I have also been very lucky in the fact that I had insurance
when Veronica needed it. There was about 8 months after my ex-husband left that I couldn’t
get insurance for her and my ex-husband refused to provide it. You see, Arthrogryposis is
one of those pre-existing conditions that private insurance companies refuse to
cover--that is why I support the Affordable Care Act. No one should ever be
stuck without health insurance like I was. Not being able to take care of your child’s
health is a nightmare, and people need to understand that anyone can end up
losing their health insurance at any time.
But I think everything happens in life for a reason. It’s
hard to raise a special needs child but compared to most parents with special
children, I have it pretty easy. Veronica has never been on the brink of death.
She is very intelligent. She has a lot of friends and she is very social. Sure
we have spent a lot of time in the hospital and it’s frustrating to know that
there are things in life that she will never be able to do like run or wear
sandals, but I can live with that.
I do know that I find myself in situations where I get to be
the person in the room who has advice for parents like me. I get to take all
the knowledge I have accumulated about doctors, hospitals, physical therapy,
dressing devices, leg braces, special tennis shoes, wheelchairs, and health
insurance and share that knowledge with people who need it.
A few days ago, I got a call from a woman who needed help
writing a thank you letter to the newspaper. Her son was diagnosed with a rare
brain tumor and he didn’t have health insurance because he chose to become a
youth minister and the job didn’t come with benefits and he couldn’t afford
private insurance. The community has rallied behind her son to help raise money
for his care which must be paid prior to his treatment, and she wanted to write
a letter to thank everyone.
I would have thought that she just needed my help writing
the letter, but she really needed something else. She needed another mother who
could understand what it is like to want to help your child, but finances and
health insurance are holding you down. I told her about how I lost my health
insurance when my former husband left the military and took a new job without
adding the children to his new insurance plan and how humiliating it was to
tell hospitals that I didn’t have insurance for my children. I tried to get a
private plan that would cover Veronica, but there aren’t any. I couldn’t get
her on Medicaid, because I wasn’t legally separated and my former husband made
too much money to qualify and he refused to sign my papers for separation.
I told her something that I wish someone would have told me,
“Never feel ashamed for not having the money you need to take care of your child.
We all do our best, but sometimes things become too much and we fall short.
These moments make us stronger and you must hold your head high.”
I also gave her some advice about how to get around certain
hospitals with key phrases like “what is your quick pay charge?” I also
admitted to her that I still didn’t have health insurance for myself. “I can’t
afford it right now and I don’t have a full-time job that gives health
benefits.” She looked at me and said, “You need to fix that as soon as you can
so you don’t end up like me.”
As I drove home, I called Robby. “I need you to add me to
your health insurance plan.” I realized how lucky I am to have that option now.
No matter what your political views are, we all have to
agree that the health insurance system in our country needs work. We have the
best medical care in the world and it is a shame not to give access to the
people who need it the most. Should it be free? Of course not. But it should at
least be accessible when you need it—especially when your life depends on it.
