Frieda’s new mom

Frieda stares out the bathroom door, her unblinking green eyes focused on the dogs. She didn’t have to deal with dogs in her old home, and so she isn’t quite sure what to do about this dog. Eventually Frieda and the dogs, as well as my two other cats, will work it  out.

I am Frieda’s new pet mom. Her first mom, my daughter, is a woman who faces many challenges. My woman-child underwent surgery for the removal of a herniated spinal disc. We rejoiced that the surgeon didn’t find a tumor as the underlying culprit. She has also undergone the removal of a desmoid sarcoma. Desmoid tumors are cancer-like in that they can occur anywhere and will spread to, and destroy, nearby tissue. Unlike cancer, they do not send cells on expeditions to distant organs.  A desmoid sarcoma diagnosis is extremely rare, occurring in just 1 in 500,000 people.

The psychiatric community has arrived at its own set of conclusions. These expert opinions run the gamut from bipolar disorder, to OCD, adult ADD/ADHD, and depression…I find it somewhat frustrating as it seems that the diagnosis depends upon the specialty of the issuer. And inexperienced counselors are very easy to manipulate.

My daughter works, attends college classes, and generally can function in society. Key word here is ‘generally.’ By my count-unofficial though it is-she functions well about 75% of the time. The other 25% is filled with heart-rending phone calls detailing broken relationships, financial disasters, and lost jobs.

My husband and I try to help her pick up the pieces. See, we are not her legal guardians, nor hold a power of attorney on her behalf. At 35 years old, she is cognizant of her surroundings, and all those things an incompetency ruling would demand. So, wrestling away control of her life would be an exercise in futility. That does not mean we lack influence. Many talks on the need to find and keep a job-any job with benefits, sticking to a budget, routine car maintenance, and a myriad of other concerns have taken place.

We belong to the vast number of parents who have adult children with, for lack of a better term, issues. We discuss endlessly, the doctors diagnose and prescribe endlessly, and the therapists counsel endlessly, but somehow not much changes. While the day has not yet arrived, I can envision a time when her dad and I will be unable to provide not just financial assistance, but comfort, guidance-such as she’ll allow, and love.

I don’t know what to do about that. And it scares the hell out of me.

 

 

 

 

 

 

 

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This Momma Never Sleeps

She won’t be three until  next July, that beautiful little girl with the shiny coffee colored hair. Her expressive brown eyes look through you, not acknowledging your presence. She sees a different world, the one inside her head. She doesn’t really talk to you, or anyone else. She mumbles in a sing song language all her own.

Doctors have just saddled this little girl, and her family,  with an autism diagnosis. At the severe end of the autism spectrum, Gabriella is nonverbal. Like many other autistic children, deviations in her routine are met with resistance. This can make the introduction of new foods challenging.

There are therapies available to help autistic children overcome their social and physical developmental delays. Many times, especially for families in rural areas, the waiting list is long and the therapy center far away. But, early interventions give autistic children their best shot at normalizing their lives

This leaves many families having to make terrible choices. Of course they love their child and want the best for them. The associated costs of therapy, like gas, food, and perhaps lodging, can mangle a family’s budget. It is for this reason that ‘Gabriella’s Voice’ a GoFundMe account was established.

Any donation, even 1.00, will go toward helping this family get the treatment Gabriella needs. 

Oh, and sleep disturbances are another challenge autistic families face. Gabriella rarely sleeps throughout the night. Guess what that means for Momma?

To Donate: https://www.gofundme.com/gabriella039s-voice

Crime Scene

The cat strolled nonchalantly past me looking quite pleased with herself. Of course, she’s a cat.  Cats always look pleased with themselves. I made my way to the coffeemaker and pushed the button. The blessed sound of coffee splashing into the pot was my reward.

The sun peeked in around the closed curtains. I worked my way around the room opening them, allowing the day to enter. It wasn’t until my return trip to the coffeemaker that I noticed it. That smear of blood on the floor. Too much for a bug, not enough for me. But clearly something died in here last night.

Then I remembered the cat.

blah blah blah CANCER

His thumb drew slow circles on the back of my hand. He squeezed my fingers gently.

“Whatever it is, we’ll deal with it,” he said softly. I nodded, not really listening.

The man in white arrived. Entering the small room, he leaned against the door clutching a clipboard and some files. He looked uncomfortable, not like he recited pathology reports every day. I wondered if he picked that spot so he could leave quickly if I got too upset.

“I have some very bad news, and then some very good news,” he said looking down at me. “You have cancer.”

My husband’s grip tightened as he turned to look at me.

I stared at a point in space, not focused on anything. Air molecules maybe.

The doctor stood silently for a few moments, and then sat at the small desk. He went on to explain why my prognosis was rosy and bright. I was one of the lucky ones. I would live.

I didn’t hear any of it. I never got past ‘You have cancer.’ They tell me that’s a very normal response. They told me a lot of things.

There are some things they missed though. Like anger. Not simply a passing emotion, my anger burned brightly for a long time. The kind of fury that keeps one warm at night. This was especially true when, two years later, the man holding my hand received a cancer diagnosis of his own.

They didn’t prepare me for the isolation cancer imposes. Shunning, and separating the afflicted from the healthy is an institutional response I found. When first diagnosed, the treatments recommended by the oncologists were conducted in the same part of the hospital as everything else. Cancer patients shared a waiting room with everyone else.

I think we freaked ’em out. Wasn’t long before us cancer people had our very own lovely wing-floor-section whatever. No more would the vasectomy men and  urinary track infection women have to look at us, with our bald heads, and IV ports hanging out of our necklines.

People’s reactions proved to be an interesting study in human behavior. Some simply didn’t know what to say. Uncomfortable, they avoided eye contact. And after a while, me. For others, I represented their worst nightmare. Oh, she has cancer! Run!

My spousal unit and our offspring struggled to support and distract me. “What do you need?” I heard over and over. The truth was, immediately following my diagnosis, I didn’t know what I needed.  When contemplating your mortality, you come to the realization that you may lose everything: sunsets, macaroni and cheese, your favorite TV show, and of course, everyone you love.  That’s a hell of a lot of grieving to work through. I didn’t know where to begin, nor how to help them. I will never fully know how hard they fought to keep our connections alive.

My mom, also a cancer survivor, told me there would come a time when I wouldn’t think about cancer every day. Now that I’m a ten-year survivor I no longer check myself for lumps at stop lights. My mom also told me that the day I didn’t think about cancer would be a long time coming. She was right.

 

 

 

 

 

 

The Long One

She opens the glass door and ushers her four kids inside. Almost at once, the rank humidity envelopes them. Simply put, it reeks. 

“Ewwww-what stinks?” asks Mr. Nine year old, holding his nose. Misses Seven and Eleven, eyes scrunched shut, make gagging sounds. 

 “Oh. My. Gawd! Who pooped?” asks Ms. Fourteen disdainfully. And loudly.

She scopes out the dentist’s crowded waiting room and finds someone familiar. Another mom of four reading a book. Carefully making her way across the too small space, she crouches on the floor-the only available spot left. 

Eyeballing her brood, she issues a one word instruction, “Sit.” They drop to the floor, knowing better than to argue for once. Looking up at her friend she asks, “How long?”

Trying to push limp bangs away from her eyes, Mrs. Friend answers, “We’re almost done, but we’ve been here 2 1/2 hours. He’s behind.”

Audibly sighing she asks, “Who filled the diaper?”

“Lady by the magazine rack. They told her where the bathroom was, but she was afraid if she took her kid to change him, she’d lose her seat. Receptionist finally made her go-” From somewhere in the back a child’s screams interrupts Mrs Friend’s poopy pants story.

Three children suddenly spill into the waiting room clutching new toothbrushes. They quickly locate Mrs. Friend. “Mom, mom, we’re done. Can we go now? Pleeeasse?”

“We have to wait for your brother,” she says, giving them ‘the MOM look.’ “He’ll be done soon. I heard him screaming.” Soon, a teary-eyed three-year old staggers out. Thrusting his new toothbrush at his mom, he tugs her hand trying to drag her out the door and into the fresh air.

Smiling your good-bye, you quickly claim Mrs. Friend’s seat, and dig into your bag for something to read. It’s gonna be a long one….

I know you. I really do. See, I was that woman. Back then, I waited at the dentist  and a myriad of doctors’ offices. I froze in my car when some team’s practice ran over. I waited patiently while the volunteers had to move the hurdles farther apart at the track meet. And then back again.

But that was then. Waiting has taken on a different tone these days. Instead of holding small hands at the dentist, I now hold older hands at the doctor’s. Waiting, just waiting to be called, or for results, or….

I write for you. I write stories for women who need a vacation but can’t leave the room. I write for those of us who need to leave it all behind, at least for a little while.

And I write for me too.

 

 

 

Me n’ My Elliptical

I creep down the basement stairs, and peer around the corner.  There it sits, steel and black metal finishes reflecting the dim light from the bare bulb hanging above it. Sighing heavily, I approach slowly, knowing that soon, my body will be screaming.

Oh, I try to delay the inevitable. Carefully pulling my ratty old green sweatshirt over my head I toss it so that it drapes gracefully atop the boxes of stacked Christmas decorations. Gently plugging in my iPod, I scrutinize the settings ensuring that only the songs with the heaviest drum beats will play. Lastly, I set my phone near me-not that I’ll stop if someone calls. No, never that. Once begun, this session cannot be interrupted.

Slowly, I mount the great beast. Searching the lighted display, I increase the incline and resistance levels to 7. Fingers trembling, I grasp the handles, and begin my hour’s run….

Shortly after my breast cancer diagnosis I read somewhere that 90 mins per week of aerobic exercise would decrease the chance of cancer recurrence by a third. I was one of the lucky ones, as a mammogram discovered the little nest of wayward cells very early in their development. My biopsy was the lumpectomy, and I didn’t need chemo or a mastectomy. I mention this out of guilt, and in deference to the thousands of women whose journey has been fraught with much more pain and anguish than mine.

That explains my single-mindedness when it comes to using the medieval torture device living in my basement, but not why that particular form of self-inflicted misery. Several years following the cancer diagnosis, it became apparent that familial genetics had struck again. Progressive, degenerative, osteoarthritis, or as the neurosurgeon said, “Let’s talk about your crappy spine.”  He provided a remedy: two rods and eight screws which he embedded during a 5 hour surgery.

So, I elliptical. To others, it may appear that I’m running in place, and getting nowhere. But in a real sense, the faster I go, the farther away my problems seem. Maybe the combination of pain and adrenaline leads to a false sense of euphoria-I don’t know. I only know it works for me.

And that phone. I bring it with me in case I fall and break something, cuz I’m pretty sure no one will hear me scream.