All grown up

The day I feared and hoped for came: Rhia graduated from school. When she turned 22 in May, she officially “aged-out” of her school based programs. She is now an adult.

Her school had a small ceremony for the three students who were also moving on to adult based services. But first, every student in the program got an award. One was for “Best Dancer.” Another was “Kindest.” A tall, shy boy was given an award for being the “Most Helpful.” And then it was Rhia’s turn. She stood up on her wobbly, colt legs and walked to the front of the room where she was given her Graduation Certificate and her award. Her’s said, “Most Likely to Speak Her Mind.” Everyone cheered.

They know my daughter well.

When Rhia was 5, she got in trouble for something (I don’t remember why). Instead of backing down, my tiny, elfin child put her hands on her hips and glared up at me with fierce eyes. “You can’t talk to me like that!” she declared. Fighting laughter, I sent her to her room. I was so proud of her and prayed that nothing would break that powerful spirit.

17 years later, nothing has… not multiple doctor’s appointments, losing her hearing, worsening eyesight, three hospital stays, deteriorating strength, ataxia, and anxiety. She will tell you exactly what she thinks and will fight hard if she thinks you’re wrong. Brutally honest, she is also extremely kind. She’ll tell you the truth, but be the first with a hug if she realizes she’s hurt you. She’s never intentionally cruel and fights for others as hard as she fights for herself. I wish I had been that strong when I was her age; instead I allowed others to walk all over me. I didn’t believe I mattered, but Rhia knows that she does.

I’m afraid. She’s not. But she doesn’t understand how complicated services for adults with disabilities can be. I see road blocks, paperwork, questions, and meetings. I’m afraid her world will get smaller now that she doesn’t have an ASL interpreter. Will we find one? Can anyone or anything replace the incredible support she’s gotten in school? How will I manage to piece together anything close to that?

Rhia is happy. Her greatest joy is she can now wear all the Disney t-shirts she wasn’t allowed to wear in school.

“I can wear anything I want!” she said, tossing school shirts on the floor. “I’m all grown up!”

“Yep,” I said, “You can wear Disney everyday.”

“Hooray!” More shirts flew into the air. I quietly scooped up the best ones to keep for the times she needs to wear something nicer than a Princess t-shirt. That will be another battle on a different day.

I need to have faith in my daughter. A deaf-blind young woman who wins an award because she always speaks her mind is no one to underestimate. And I’ve always got her back. We’ll find a way.

 

 

 

 

 

Wanted: The perfect program for a highly social, deaf-blind, medically fragile, young woman.

Last week, I attended my daughter’s very last IEP meeting. Rhia turns 22 in May, which means she will no longer qualify for school based services. Instead, she will be a full fledged, 100% adult, with all the challenges and opportunities that provides. I sat beside her at the the meeting, surrounded by people who have been a part of her life since elementary school. Her current teacher used to be her aid in the 4th grade. Now he led the meeting that would transition her into adulthood.

Fighting back tears, I stated my concerns. Who will be her Sign Language interpreter? How will she continue to learn ASL? Which program will provide the most flexibility while still providing social opportunity so she can make friends? How will we fight the isolation that comes when a person is deaf-blind and uses a wheelchair to travel?

No one knew the answers. Everyone was worried and everyone tried hard to come up with solutions. But what I really wanted was someone to take charge with their magic wand and create the perfect program for my daughter. Unfortunately, no one had a wand.

It’s not that I didn’t know this day would come; her IEP team and I have been discussing it since the 8th grade. Transition is a big deal so it takes years to plan. The problem is that my daughter is medically fragile and has serious communication challenges. We live in a tiny town with limited opportunities. We really need to move to Berkeley or Santa Rosa, but who can afford the rent? So here we are, Smallville California, hoping the perfect program for my Disney loving, shy, cheerful daughter will appear.

Rhia keeps asking me what will happen when school ends. I tell her she’ll go into a different program for grown-ups. She’ll make new friends and maybe take classes at college again. She scrunches up her brows and looks at me sideways, not sure if I’m telling the truth. But I am; I’m telling her what I hope will happen. When I ask her what she wants she says she doesn’t know, but she’d like to move to “LA” so we can go to Disneyland everyday. Darling, if I could, I would, but I can only afford to live in a tiny town in NorCal where the adult programs are geared toward work and very few people know ASL.

I really need Godmother’s wand!

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. 

Is there a difference between gratitude and happiness?

This summer, I began a 150 day happiness challenge on Facebook. Every day I would post something that made me happy. It felt important I do this because I was overwhelmed with fear and anger from my husband’s cancer. Suddenly, I was the caregiver for two medically fragile people, my husband and my daughter, and the emotional toll made getting out of bed difficult. So I started looking for things to make me happy.

Quickly, the exercise felt phony. Very little made me happy. Writing about the joy I found in my morning coffee was silly, and how many times could I write about my garden? Happiness? What was that? I was happy just to get through the day.

Then I realized that I was actually writing down things I was grateful for. Having that morning cup of coffee helped ease me out of bed, and I was grateful for that. Watching my garden grow filled me with gratitude because I could feed my family while supporting wild bees. Gratitude was the best I could do. Happiness was like chasing a mirage.

What is gratitude? To me, it is an awareness of the gifts I have in my life. The simple things, like a warm bed, health insurance and the internet. I am grateful my husband’s cancer seems to be gone and I am grateful my daughter is thriving in her new school. I am grateful for her teachers. Grateful my car is running and I can afford new tires for winter. These things don’t make me happy; they make me grateful for my life.

As the weeks went by and I forced myself to post a gratitude, an interesting shift in my awareness occurred. The more I focused on gratitude, the more I felt happiness. Where did this happiness come from? Circumstances hadn’t changed. My husband still struggled to recover and my daughter still had bad days, but she also had good ones. There were days I wanted to cry from the weight of the emotional load I constantly carried, but on that same day I’d smile watching the dog chase leaves across the back yard.

I am not in denial; things are bad. Frightening. Cancer lurks and my daughter could decline any time. Money is tight and I still don’t have job. The future is one big scary unknown and the odds aren’t in our favor.

In searching for any small, random thing I felt grateful for, I uncovered a rich source of joy. Happiness fluctuates. But gratitude is constant. WhenI feel happiness has vanished and I’m left alone fighting my battles, gratitude holds me up. I am grateful for my strong, weary body. I am grateful for love. I am grateful it rained today.

Or is there really any difference between gratitude and happiness? Can you feel one without the other?

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.

Queen Teen vs. The Communion Wafer

While my daughter and I were visiting family in Louisiana, we went to church. My husband’s family is very religious. I have no problem with religion; my daughter is baptized in the United Church of Christ. However, I’m not a Christian. Jesus was an extraordinary teacher and philosopher, but I don’t believe he died for my sins.

Regardless, we went to church with the family.

My nephew was an acolyte and he was thrilled to show me his long white robe and how  he lit the candles on the altar. Bouncing with excitement, he asked, “Do you want the pastor to come to you, or do you want Rhia to walk to the altar for communion?”

Because of severe ataxia, Rhia uses a walker to get around. Whether or not she should walk or sit for communion wasn’t my biggest worry at that moment, though. Instead, my brain anxiously hummed with the word “communion.” Communion? Who said we were taking communion? Isn’t it a “sin” for us to take communion? I’m not a Christian and Rhia has never been confirmed. My nephew is only 9; he has no idea what he’s talking about.

But before I could argue with him, my mother-in-law said, “The pastor should come to you. That would be easier for Rhia.”

Surrounded by so many eager, loving family faces, I nodded. “Of course.”

Communion. Again I wondered if I should protest, but how could I without embarrassing my mother-in-law? The pastor began the sermon, which was all about sin and forgiveness, so I bit my lip and worried what Rhia would do.

At last it was time. The pastor solemnly walked to Rhia and I with the communion wafers and wine, my nephew trailing him as sedately as a hyperactive 9 year old boy could. The pastor blessed a wafer and handed it to me. I turned to Rhia and signed for her to open her mouth. With scrunched eyebrows and narrowed eyes she opened her mouth and I popped the thin, white wafer in.

“It tastes like paper!” she shouted loudly, and spat it out.

After catching the soggy wads of wafer in my hand, I had to turn back to the pastor for the wine. The man was a pro; his expression never changed as he calmly handed me the wine to give to Rhia. Rhia took a sip and announced, “Tastes like my medicine.”

Trying not to laugh while hoping my mother-in-law hadn’t seen her granddaughter spitting out the body of Christ, I received the wafer and wine with the pastor’s blessing. “Is this gluten free?” I wondered, but decided it was better to just take the wafer and bow my head. When the pastor walked away I shoved the remainder of Rhia’s wafer into my purse. It stuck to the sides of my bag like paste.

Everyone else in the church solemnly went to the altar for their blessing. If anyone noticed how Rhia reacted, they were too polite to show it.

On the drive back to my in-law’s house, I wondered about the body of Christ crumbs in my purse. Could I just throw them away? I didn’t dare ask my mother-in-law. Instead I quietly tossed them under a tree when I got out of the car. Perhaps some birds were blessed that day.

No father should have to change his daughter’s Maxi-Pad.

Rick

Happy Father’s Day to my fearless husband. The man who works every day to keep a roof over our head and food on our table (seriously, he works every frickin day). The man who chose to become to father of a severely disabled girl. He is not her biological father, but he is the one who has raised her and fought for her and has even changed her Maxi-Pad.

Yes, he has had to learn how to deal with a girl’s period and which Maxi Pad to use.

No father should have to do that. Ever.

Happy Father’s day, you wonderful man. And to all the father’s of children with disabilities: the ones who stay up all night with a sick kid; who work crazy jobs to buy their child a new walker; the fathers who sacrifice their leisure time to help their child put stickers on a drawing or play with dolls; thank you. You are the rock stars of medically fragile children everywhere.

Celebrate your day!