5 years and counting

Rhia almost died five years ago on Easter. After a week in the hospital she recovered from what the doctors called metabolic distress. She left weak, but alive. And she had an actual diagnosis for the first time: mitochondrial disease. The doctor didn’t know which type of mito she had, but all the symptoms pointed to some kind of illness that starved her cells of fuel. Slowly, over many years, her cells would starve to death and she herself would die.

They gave her five more years.

That was five years ago.

I spent five years preparing myself for her inevitable death.  Five more Christmas. Five more trips to Disneyland. Five more visits to New Orleans to see family. And then one day she would stop breathing, and my lovely girl would be gone.

But she’s still here, happy and thriving and very much alive. Her ataxia is worse and so is her vision. She can barely walk, even with her walker. Managing her fatigue is top priority. And she’s lost ground cognitively. But despite all predictions, she is still here. She is a friendly, stubborn, kind-hearted, and curious young woman who deals every day with her disability. It frustrates her sometimes but she never gives up. Every time she walks into the doctor’s office on her wobbly legs, it is another victory.

I was ready to say goodbye. I wasn’t ready to take care of an adult with severe disabilities. Soon she will transition into an adult day program when she ages out of the school system at age 22. That is next month!

22. No one believed she would see age 22. Not even me.

On Tuesday we go back to Stanford for her annual check-up with the geneticist and neurologist, They measure her body and track her decline; there is always a decline. And they always smile when they see her. I see the unspoken “how are you still here?” Rhia is impressive, a mystery that has puzzled her geneticist for 10 years. First he couldn’t figure out what was causing her symptoms, now he can’t figure out how she’s still alive. But he seems thrilled to see she still is.

I know I will outlive my child, but no one can tell me by how long. She could collapse tomorrow, or next month. Every time she gets sick I feel the tight panic in my chest. Is this the illness that finally saps her strength? She recovers and my fear subsides. Until she falls. Will this injury be the one that stops her from walking? She gets back up. She keeps walking. She keeps smiling. There is nothing I can do but watch and enjoy every moment I have with her.

Not to say she’s always a joy to be with. She can be impossible! Stubborn and quick to frustrate, she can yell, hit, kick, and throw things. But she is just as quick to apologize and make amends. She’ll pick you a flower or draw you a picture. When you’re sad, she’s the first with a hug. She tells the most ridiculous, surreal jokes and laughs at her own wit. She sings in the car and the bathtub. And she always makes you feel like you are in the presence of a miracle.

I know we’ll say goodbye one day. But right now, I’m going to watch Snow White for the hundredth time with my fabulous daughter.

 

For the UnMothered Children

  Mother’s Day. Bah! Humbug!

Mother’s Day raises old ghosts.  Those childhood ghosts crash into my bedroom and make me feel like I’m eight years old again and all alone in the dark. It doesn’t matter I am actually 49 and able to take care of myself. The specter of abandonment wanders out of my closet and won’t leave me alone.

There’s no need to explain or share details about my childhood. Those who experienced something similar know how it feels to grow up lost. My childhood doesn’t come close to what other’s coped with, but it left me scarred regardless. It left me with a deep hunger nothing can satisfy. I long for safety, security, and the knowledge my mom will be there no matter what. I accept it wasn’t her fault, but that can’t change the feeling. I’m a mom now, and my daughter has grownup knowing she is completely, unconditionally loved. But my sadness won’t go away.

The sadness gets stronger every Mother’s Day. But This year will be different. Instead of mourning what I never had, I will celebrate what I did. 

I mothered myself.

I grew up troubled but still believed in myself. I was afraid, but kept trying. I learned and grew stronger and trusted despite how many times I was shown I shouldn’t. I taught myself that I matter. I found ways to feel more secure. I made a million mistakes but learned from every one. I never gave up on myself.

Which is what we want from our moms, right?

So this is for all the motherless children. For all who mothered themselves and fell down and kept trying and never gave up. For the ones who think no one will love them. The ones who became parents and figured out how to raise those children. 

Buy yourself some flowers. You are wonderful.

 Happy Mother’s Day to us all. 

My daughter is back in school, so why am I not writing?

Writing is like exercise; you can have the desire to run a marathon or lift weights, but actually putting on your shoes and working out takes more than desire. You have to force yourself to go to the gym. Force yourself to sit in that chair with your laptop open and fingers hovering over the keyboard. It’s hard work. You have to build stamina and strength.

After a summer of entertaining a child, all I can focus on is “Animaniacs” reruns.

But my book is calling. I have a pile of notes and a complete outline. My plan is laid out. Now I just have to block out an hour a day and build up my marathon writing stamina. In time I’ll be humming through three hours of typing before my butt falls asleep.

Today, I feel like a jogger on that first, painful day.

Ugh.

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.

10 things to do as soon as my daughter goes back to school

1. Gather all the doodles, notes and outlines I’ve been writing in between taking care of Rhia and write the first draft of my memoir.

2. Take care of my own health. Get that mammogram and the labs my doctor told me to get in June. Get my teeth cleaned.

3. Clean five months of dog hair, cookie crumbs and dirt from inside my car. Wash the seat covers. On second thought, take the car to someone who will clean all that crap for me.

4. Watch Dr. Who season 8, which is finally on Hulu and which I’ve had zero time to enjoy.

5. Indulge in my favorite hobby, terrarium and miniature garden making. Make enough good ones to sell so I can buy more plants. Mostly, this will be the time to shut off “mommy-mind” and turn on “creative-mind.”

6. Finish a pot of coffee.

7. See friends, especially the one who was injured this summer and who I promised to visit. But I haven’t been able to go anywhere because child is not in school.

8. Contact former clients and connect with potential new ones. I need more editing and copywriting work. Got any? Drop me a line. Please. My kid spent all my money this summer.

9. Trim my eyebrows.

10. Write, write, write, write, write…. and do that some more.

Summer, bored kid, publishing, and no time to write

My fingers feel tight as I stretch my hands outward, forcing the muscles to loosen. There is a large spot of something sticky on my computer screen; is it a mocha splash from last Spring? I blow dust off my keyboard and sneeze. How long has it been since I’ve written anything?

Every summer is the same: my daughter is out of school and bored. She and I try to find things to do in this small town. Because of her disability, going outside in 95 degree weather is impossible. While other kids swim, hike, go to camp, or ride bikes, my daughter hides from the heat and counts down the days until school starts. We do our best to have fun by doing crafts and escaping to the city as often as possible. At least in the city there’s an air conditioned shopping mall, aka Mecca for teenage girls.

At last, school started. My daughter is happier, and I can write again.

Ebook cover 978-0-9797152-2-8

Besides being a full time, busy mom all summer, I also launched a new book through my press, Medusa’s Muse. Publishing takes as much concentration and energy as writing, and this book seemed to take even more. All summer, I struggled with printing problems, last minute manuscript issues, legal questions, and budget constraints. Shannon Drury and I worked hard marketing her book, and then just when the book launched and all seemed smooth sailing, Shannon broke her wrist. Not a fun way celebrate the launch of a first book. But the book is alive and slowly gaining readers. I am so proud of Shannon’s book and my part in creating it. It was my most challenging book so far and I learned a lot, but I am so excited about this book I would do it all over again.

My daughter left for school on the bus this morning. I pour myself more coffee and return to this long ignored blog. Now, what shall I write about…?