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. 

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.

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.