Tag: special needs

Posted on in caregiving, disabilities, mitochondrial disease, parenting

Caregiver or Mom?

Caregiver or mom? The two are blended into one role when our children are small. As they grow, we let go of small bits of caregiving. They learn to drink from a cup, use a spoon, pull off their own shirt and shoes and brush their own teeth. They become potty trained. They go to school and learn to write their own name. They get their own snack and in time learn to feed themselves. Perhaps they cook dinner for the whole family once a week. If they have smart parents, they learn to wash their own clothes. Slowly our children grow and become independent and eventually are able to live on their own. They don’t need us to be a caregiver, but they will always need us to be a mom.

This is what I’ve seen happen in other families. It isn’t what I’ve experienced.

My daughter will be 23 tomorrow but has less skills than she did when she was 10. Rather than gaining independence, she has become more dependent. Her illness has slowly taken away her motor skills and her hearing and now her vision is declining. Her cognitive abilities are reduced and something as simple as choosing which shirt to wear becomes an enormous task. So I help. I help her dress. Help her brush her teeth. Help her eat and bathe and use the toilet. We seem to be living in reverse.

The tricky part is balancing her need for a caregiver with my need to be mom. Her need for constant support with her desire for independence. My need to keep her safe with my hunger for freedom. We’re both trying to figure this out. When am I the caregiver? When I am mom? When do I make decisions that support her life and when do I make decisions to support my own?

A caregiver can be more methodical; I set my heart aside and take care of her daily needs. It doesn’t matter how frightened I am or tired, it only matters that she get enough nutrition and stay hydrated. I can manage doctor appointments and therapies and other caregivers that come to relieve me. Caregivers don’t need much sleep. Moms do.

This mom is frightened and angry and sad. This mom is sick and tired of the call in the night from a daughter who can’t get out of bed for a drink of water anymore. But this mom is also grateful that the call in the night still happens. My daughter, my beautiful, funny, kind-hearted daughter is turning 23 tomorrow after every doctor said she’d never see 20. We’re planning a party and celebrating the wonder that is Rhia. I am in awe of this child… this young woman… who disrupted my own life with her needs and curiosity. I am honored that of all the potential moms in the world, this spark of wonder chose me.

We still haven’t figured out the balance, and maybe we can’t. Balancing the heart with the mind and independence with dependence might be impossible. Sometimes Rhia is as sick of me as I am of the constant caregiving. She’d love to walk out the front door and find her own life with her own friends in another state! I’d love to help her pack.

But here we are, our lives entangled by Mitochondrial Disease. I’ll keep trying to learn when to be mom and when to step back and be the caregiver. A caregivers primary role is to support independence. Maybe that’s a mom’s role too?

Posted on in health, mitochondrial disease, parenting, special needs

Rare Disease Day 2016 


What is it like to live with a rare disease? This is what my daughter says:

“Doctors try to help but no one does.”

“I don’t know why I have ataxia and I don’t know why I can’t hear no more. No body does.”

“I have to go to the doctor a lot. That’s boring.”

“Everybody wants to poke me and give me a blood shot (blood draw)!”

“I used to be able to walk and not have to use a walker all the time but now I can’t and nobody know’s why.”

“Why is there no medicine to make me feel better?”

As her mom, I struggle to answer her questions. But what can I say? She is now 20 and has lived with an undiagnosed mystery disease her entire life. The closest label her illness has is Mitochondrial Disease. But which one? What type? How degenerative is it? How long does she have?

We don’t know.

Posted on in family, parenting, special needs

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.

Posted on in birthdays, mitochondrial disease

My daughter turned 20, which wasn’t supposed to happen.

This week was my daughter’s 20th birthday, which when you’re battling Mitochondrial Disease, is a birthday hard won. My daughter, who I call Queen Teen (but can I still call her that if she’s not a teen anymore?), is a beautiful, friendly, stubborn young woman who has fought every single day to keep walking and keep learning. Despite being doubly impacted with blindness and deafness she has learned to read words and understand sign language. Doctors told us she wouldn’t make it to her teens. When she did she was diagnosed with “Mito” and given five more years to live. That was three years ago.

Right now, my daughter is singing “Let’s go fly a kite” and “Take me out to the Ball Game” at the top of her lungs. It’s horribly off key, but I love every note. I don’t know how long we will have together. Two years? Ten? You stop worrying about it after a while and learn to live in the present. “Be here now” is more than just a philosophy when your child has a life threatening illness, it is the golden rule to live by.

20. Who will she become now that she is grown? What will she want to do? I love watching and learning more about her.