Not the only Mito Kid in the world

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My daughter Rhia and I spent the last four days in Seattle at the Mitochondrial Disease Medical Conference. Hundreds of people with mitochondrial disease, their family, parents, doctors and researchers gathered at the SeaTac Hilton Double Tree Hotel to discuss potential treatments, research breakthrough’s and symptom management. The conference travels from the East to the West coast. This year it was only a two hour flight from our home, so my daughter and I decided to go.

The main goal for us was to meet other young people and kids with the disease. Rhia was convinced she was the only person in the world with Mitochondrial disease. There is no one else like her who uses a wheelchair because her legs are “too lazy” to walk (her words). No one else is deaf-blind and no one else has hands that shake.

Rhia quickly learned she isn’t the only girl on the planet. At the conference, she met a girl who uses a wheelchair because she too gets too tired to walk far and tends to shake when fatigued. We met a young man who has the same doctor as Rhia and has dealt with all the same tests and procedures. We met a young woman with thick glasses who struggles with seizures while trying to go to college. A young man who used to play sports but now spends more time in bed than on the field. We met teenagers and young adults from all over the US who battle mitochondrial disease every day just to have some kind of self-actualized life.

No one else is deaf-blind, though. I spent most of my time interpreting sign language so Rhia could understand what people were saying. It was a challenge to help Rhia become included in the group. They could all talk about their frustrations and joys, and they shared their experiences freely, supporting each other as best they could. As a deaf-bind person, Rhia is a rarity within a rare group. But everyone worked hard to include Rhia in the group. Whether she could understand their spoken words or not, she was still one of them. In time, Rhia warmed up and made two connections which could develop into friendships. Unfortunately they  live in different states, but if they can figure out how to stay in touch, the three could really help each other not feel so isolated.

Unfortunately I wasn’t able to attend many of the workshops on mitochondrial disease treatment and management, so I missed a lot of the information. But Rhia and I achieved our goal: connecting to other people with “mito” and understanding Rhia is not all alone. At times it was hard for me to step back from being mom and just facilitate communication. The stories people shared about their anger and grief coping with mitochondrial disease were heart wrenching. These kids should be enjoying high school and planning for college, not managing symptoms of a degenerative disease. Rhia said she hated her “lazy legs” and wished she could walk. She was tired of hurting herself all the time. The others nodded, understanding her anger. Reminding myself that I was here to support Rhia’s communication needs, I kept my tears in check.

At the end of the conference we were both exhausted and ready to be home. Two days later I’m still trying to regain my energy. The trip was challenging physically and emotionally, but worth it. We’ll definitely go again.

Thank you UMDF for providing this community and helping us cope with Mito. It’s not easy, but together, we can do it.

Why I won’t run to Canada

My daughter cannot move to Canada; she has multiple disabilities so is considered a drain on resources. No country anywhere will accept her. She is a disabled woman trapped in the United States, a country that doesn’t want her.

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(photo by Diane Davis https://www.facebook.com/dianedavisphotography/info/?tab=page_info)

So when you talk about moving to Canada if Trump wins, think about what that means. Think about the people who don’t have that option. They are the people who need you to fight for them.

The ability to leave a bad situation is often based on ones resources. Do you have the money to go somewhere else? Do you have people who will help and protect you? You might wonder why a  person living in a bad neighborhood doesn’t move to a better one. Many times, they can’t. If you can, you are blessed. Don’t assume others have the same chance.

My daughter is one of those “losers” Donald Trump talks about. She can’t work and she is dependent on other people to care for her. I am one of those losers because I need social service supports and welfare to help me take care of her. Call me a welfare mom and I’ll agree proudly. We are not “winners,”as Trump would say, and there are a lot of people in this country who are the same.

But that doesn’t make us bad people. That doesn’t make my daughter worthless.

My daughter can’t fight for herself, but I can fight for her. And I will stand by her and fight with all my strength to protect her from the rise of hate and intolerance permeating the United States. Racists and fascists will not touch her.

Will you help? Or will you hide?

One special needs family reaching out to another

There are a thousand sleepless nights to get through when your child is medically fragile. Waiting for answers. Waiting for change. I pick up a book I’m too tired to read. Turn on the TV but it’s too loud. So I grab your laptop and start surfing. See what my friends are doing. What trips are they taking this summer? What did they eat? How many selfies did they take? But after a while all those smiling faces make me feel more alone.

I turn to your tribe, the other parents who are up at 3 AM surfing the internet while battling anxiety. Because no one understands dread more than the parent of a special needs child.

We parents would be lost and more confused than we already are without the internet. With chat rooms to swap war stories and blogs to share our ideas we see that we are not the only family in the world held hostage by illness. Instead, we know MediCare and Social Security screws with every family. Paperwork really does get more complicated. Marriages collapse and rebuild. Children thrive despite what experts say. And occasionally we get to laugh.

Reach out. Write it all down. Maybe someone will read it and for a tiny moment I won’t be so alone. Maybe my struggle will help someone else. And maybe, if I take the time to read other stories, I’ll find the answer I’ve needed to hear.