A hospital connoisseur.

My father needed a quadruple bypass this summer, so I flew to Oregon to be with him through the procedure and during his stay at the hospital. He was understandably terrified, and I admit so was I. But the procedure went well, his heart is strong, and he went home after only a few days in hospital. Now it will simply take time for his sternum and the incisions to heal. So far so good.

While I was with him at the Oregon Health and Sciences University Hospital (OHSU) I spent a lot of time exploring the sprawling campus. Seriously, that place is huge! And confusing. Floor 9 is the main floor while my father’s room was on floor 17 of an entirely different tower from the main hospital. It’s built on the side of a hill with incredible views of the city of Portland and the Willamette river. From my dad’s room we sat and watched the sunlight change the colors of snowy Mt. Hood. From a terrace below his room, I could see Mt. St. Helen.  I took a hanging trolly down to the water’s edge and then walked to the City center, about two miles. If you have to have major surgery, have it done at OHSU.

I’ve spent way too much time in hospitals in the last ten years, which makes me somewhat of a hospital connoisseur. My daughter has twice been a guest of Lucille Packard/Stanford Medical Hospital. My husband was hospitalized twice at University of California San Francisco (UCSF) for cancer treatment. And recently my daughter was a guest at our local, rural hospital due to pneumonia. I have tasted the food, walked the halls, interacted with staff and doctors, watched the nurses closely, taken in the views, strolled the neighborhood, and fought with insurance companies at some of the best hospitals on the West Coast. And OHSU is the absolute best.

It comes down to staff and communication. OHSU beats all the other hospitals we’ve dealt with in staffing levels and nursing care. Every single nurse was positive, helpful and considerate. Everyone worked hard to maintain a patient’s dignity and to communicate with them to alleviate fears. And if a nurse needed information from the doctor, she got it quickly. No paging the doctor for hours like at UCSF. Plus, the rooms were large and comfy, super clean, and had great views.

The downside to being a hospital connoisseur is the PTSD that hit me every few hours. While sitting beside my father I would suddenly feel the same panic I did when my daughter was hospitalized for metabolic failure. The past and the present would blur until my body didn’t know the difference. My father was resting comfortably, but my heart would pound the same way it had when my husband was groaning in agony. The only cure was walking. I’d pace up and down the halls, outside on the terraces, up and down stairs, walking to town and back… just walking until the panic would subside I could feel the present pushing away the past.

This is old fear. Don’t let it blend in with the new fear. Will my father survive his surgery? Will he heal? Will my husband’s cancer come back? Will my daughter crash again? 

shhhhhh… let it go. Keep walking. Keep breathing.

Now that my father’s surgery is over and he is well, I have one more request from the universe: no more trips to the hospital this year!  I don’t need to explore new hospitals, or even old ones for that matter. Please keep my loved ones healthy and safe. Keep me healthy and safe. I may be a hospital “pro” now, but it doesn’t mean I want this to become a habit.

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.

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.

My ancestors owned slaves?

Be careful when you research your family, you might not like what you find.

I guess that’s what freaked out Ben Affleck so much.

My uncle has been researching our family for 20 years, and has traced our ancestors back to the 1600’s in the United States; we were here before the country was. We fought in the Revolutionary War (I wonder if the Daughter’s of the Revolution would let me in?), built cities and “tamed the west” (killing many natives along the way). We’re mainly Scotch-Irish with a lot of German thrown in I discovered. And my grandmother’s family were genteel plantation owning Southerners who owned slaves.

Slaves? My ancestors bought and sold black people?

I suppose it’s not all that surprising seeing as my ancestors have been here for 350 years. But I’d lived under the illusion that my family were all abolitionists. Many were. I have ancestors who fought on both sides of the Civil War. But seeing the documentation stating how many slaves a particular ancestor owned when he died makes me shudder.

When I lived in San Francisco there was a hair salon near my house that was owned by a black woman with the same last name as my grandmother. “I wonder if we’re related?”, I thought. Today, I wonder if my ancestors had owned hers.

Slavery. We see the effects of it all around in the high proportion of poverty in people of color and the institutional racism that impacts everyone’s daily life. To be black in this country is to be judged. What is it like to live with the weight of that, day in and day out?

My ancestors were slave owners. Rather than turning away from that fact, I acknowledge it. I recognize it as a part of my history. Am I guilty about it? I’m not sure. Should I be? I myself have never owned slaves, but again I think about the black woman who owns the salon with the same name as my grandmother. If we go back six generations, what will we find?

If you’re an American with ancestors who’ve been here more than 200 years, there is plenty of blood in your family closet.

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!