A Thankful Mom

 I haven't updated this blog for THREE YEARS.

I'm not sure what made me turn to it now, but part of the reason is that I was working on preparing for my classes next week and realized I have some free time. The only reason I have free time is because of my friend, Anna, who is playing with the older kids while Lucy is napping. This made me realize how much help and support we really have in our lives, not just in friends and family, but in government funding.

There is a lot of genuine failure in government, as you can tell from any glance at the news or public opinion, but there is also so much that goes unthanked. I felt a nudge to give a more public "thank you" for all of the help we receive that makes it possible for me to do things like teach online even though I have three young kids, one of whom has many special needs.

When we first received Esther's diagnosis of Rett Syndrome, we were already enrolled in various therapies, which were covered through a Medicaid program. Thank God for that, because just one 60-minute physical therapy session runs about $70. 

Her equipment also is covered. It takes a loooong time to receive any equipment, but we are still grateful for all of it. She first got a stander that helps her (you guessed it) stand, was a critical piece. It helps her legs stay strong and gets her in a different position. She has also gotten an eye gaze device, gait trainer, stroller, bath chair, and activity chair.

Anna is able to help me a couple days a week by taking care of Esther while I do various things, like mow or clean or work on class or whatever. She gets paid for this through a waiver. I'm still amazed that is even an option. I had no idea how much was available for children like Esther.

For about a year, Esther attended the Wonder Center a couple days a week where some wonderful nurses took care of her. They fed her, played with her, she received Speech therapy, sometimes got to play with a therapy dog, etc. This was also covered by the waiver.

Specialists are covered through Medicaid, such as the geneticist who diagnosed her, the neurologist, and orthopedist. She needed ankle braces and special shoes for when she stands or practices walking. Both were given to us at Shriners Hospital.

Now, Esther is starting up at a school for special needs children. She'll go two half-days a week and this is part of the public school system. Her teacher and aides and therapists there are fabulous. 

She receives in-home therapy once a week (OT and PT). She has speech once a week.

And I think, how is all of this help just GIVEN? How do so many people make it their life's work to help children like Esther and their families? I wish we didn't need it all, but man, since we do, it's amazing encouragement.

So, thank you to everyone who advocates for the funding and support for Esther. Thank you for seeing her value and giving of your time to make sure that she lives her best life. Thank you for understanding how hard it is as a parent, for giving us help in our homes and in our schools.