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My Parkinson's Journey

In which Terri shares a humorous look at her journey with Parkinson's disease and Dystonia:

For me, illness and health are not opposites but exist together. Everyone has something that is challenging to them. Mine just simply has a recognizable name. My life will take a different path because of this but that's okay. Everyone has changes in their lives that create their path.  I'm learning how to enjoy whatever path I'm on.

Back at Ronnie's House

Terri Reinhart

Back at Ronnie's House

Where else could we have a dinner cooked by faculty from McDonald's Hamburger University? (No, it wasn't hamburgers) Home made cookies, cakes, brownies, muffins, and fudge? Mittens provided for a cold day when I forgot to bring mine from home? Someone to listen when medical issues become overwhelming? Be able to fall asleep to the rumbling of a freight train?

Early Morning magic

Early Morning magic

Sometimes it feels a little funny being here. We're old timers compared to most of the other families. People ask Emma how old she is and are surprised to hear she's 21. The only other adults staying here (besides Emma, of course) who are as old as I am are there because a grandchild is ill. Also, Emma is almost finished with her work with Shriners. We're here for check-ups or simple procedures, not because something is wrong.

Then again, on one of our visits to Ronald McDonald House there was an older couple staying whose daughter had just had a lung transplant. She had cystic fibrosis. They had been staying in this house for years whenever their daughter was in the hospital, and they were still welcomed even though their daughter was now in her 40's. 

It's been a full house this visit. Being so close to Christmas, it's been nice to have little kids running about, making noise, climbing across the kitchen counters.... which reminds me, I'd love for parents and teachers to see a child who is truly, truly hyperactive. They might suddenly realize there is a big difference between this child and their own very active child. If you can imagine a child with seriously deformed legs such that you cannot imagine how he can walk, let alone climb everything and anything and never, ever stop moving, you might start to get the picture.

During our many stays here at the house, we've met so many wonderful people from all over the country. Many come to have their child treated at Shriners Hospital. These children, like Emma, were born with some sort of challenge, but they aren't ill. They have surgeries on their legs, arms, spine, jaw, or repairs for cleft lip and palate. Others come because a baby was born prematurely or a child is very ill. We have met parents of new triplets, a lovely teenage girl who is being treated for cancer, a family whose apartment had burned down and their daughter was recovering from serious burns.

We've also met a number of families who have willingly taken on the work of raising a child with disabilities. Cheryl Wyse and her husband adopted six of their children and four of them have brittle bone disease. Another family had a total of 13 children, some biological and some adopted. Families stay as long as they need to stay. There is a family who has been here for over a year.

I love this house. It's not in the best area of town. We've been told not to ride the buses after dark and not to go walking in certain areas. The view from our window is railroad tracks and industrial looking buildings. The buses are not that reliable and it's not easy to get around. I still love this house.

One dad corrected us and said it shouldn't be called a “house” because it's really a home. I agree. I know I've written about our stays more than once. During this visit, perhaps more than the others, I've been struck by just how much of a home this has become for us. As the time for Emma's treatments come to a close, I find myself savoring every moment of our time here. In many ways, it's much more than a home. The closest word I can find to describe it is the Welsh word, “cwtch”, which generally refers to an affectionate hug, but the closest translation is “a safe place”.

That's Ronnie's house.