It can be hard to see at first, but sometimes something good can come out of something bad. It can be like a slap, an epiphany flashes through your brain, or it can come on slowly, a gradual realization that something fundamental in you has irrevocably altered. For me it was the latter.

It’s always been evident that my mom was meant to be a mom and that she always wanted me. I felt that she would literally cut off a limb if it meant it would help me. She’s supported me through success and failure, love and heartbreak. She attended my performances, encouraged my creativity, and never once made me doubt that she loved me. Her wishy-washyness was adorable and endearing, her sense of humor was silly and fun, and her strawberry rhubarb jam was blue ribbon award winning.

(This is one of my absolute favorite photos of my mom – She was eating watermelon out of a pot because she didn’t want to get a plate dirty. I pointed out that she was getting the pot dirty and caught her mid-reaction.)

The year before my wedding, my mom decided to have both her knees replaced, as she wanted to be able to dance at my wedding. It was clear to us after the second surgery that something was different. Whether the anesthesia triggered it or it had been whispering its presence before she went under may never be confirmed, but it was obvious she wasn’t the same.

A multitude of doctors and tests later, we had an answer: Parkinson’s Disease.

Since Parkinson’s can present itself through a variety pack of symptoms, we weren’t sure what to expect as the years went by.

Armed with the knowledge that her mobility would decrease, she visited her sister-in-law in Florida while my dad renovated the downstairs into a more handicapped-accessible space. In those few short months we saw the obvious beginning of her mental and physical decline; added confusions, a lack of personal hygiene, and unsteadiness leading to falls. My aunt sent my father a novella of emails, detailing everything she observed. Reading those emails in one sitting crushed me.

The woman who raised me was fading away. Who would I be without my mother?

When she returned home her deterioration was painfully evident. Seeing her broke my heart. The simple things she once could do with ease were now a massive struggle. Conversations with her were confusing and abrupt, often dissolving into tangents within tangents of nonsensical thought and incorrect words.

Those emails fresh in my mind and witnessing my mother’s rapid decline was too much. I contemplated suicide. The idea of watching her decay in front of me felt torturous, and I wanted to end that emotional pain. Better to feel nothing than to feel agony, I thought.

Obviously my story didn’t end there.

I realized I was mourning my mother while she was still on this earth. I decided instead to focus on each day I had with her and to be totally present in those moments instead of fearing what would someday come. It was difficult to push past that mindset and the fear that accompanied it…but as time passed I realized I was doing it.

I would take my mom to the mall – her happy place – and take her shopping; pushing her around in her wheelchair, helping her try on clothes while she sat, helping her walk a few unsteady steps so she could look at herself in the mirror… Having those precious moments where it felt like there was no disease between us allowed me to appreciate the present.

And when her health declined further, and the mall was too much for us both, I’d take her on a walk to the park a few blocks from my childhood home. My husband John might bring our dog too, and for a moment, I could imagine we were just enjoying the beautiful day together.

And when her health declined further, and transfers between her wheelchair and the toilet became shaky, we watched TV together in the house. Most shows she couldn’t concentrate on, but she loves the Ellen Show, and would smile and seem to focus whenever that came on. We’d sit and watch together, while I tried to convince her that there were no other people in the house (Parkinson’s can cause vivid hallucinations), or try to follow her train of thought as she was undoubtedly distracted by her dopamine-inducing medicines.

Then she fell and broke her shoulder.

Surgery, a hospital stay, a sub acute nursing home stay, and she was back home. A little worse for the wear, but surprisingly little change.

Then she fell and broke her hip.

After her surgery, hospital stay, and a stint at the same nursing home, we realized she had to be secured in her wheelchair to help prevent falls. We realized she couldn’t be left alone for long periods of time.

Then she fell the day before Thanksgiving and gashed open her eyebrow.

I held my mom’s head still with my bare hands while the ER doctor stitched her up. Afterwards, we realized we hadn’t eaten all day, so my dad attempted to find food for us all while I washed her dried blood off my hands. After that, we realized she couldn’t be left alone at all.

In taking care of my mom, I have done things that I had never expected to do in my life. I have changed her diaper, bathed her, wiped her down with baby wipes when the water in their house wasn’t working. I have dealt with smells and sights that turned my stomach and broke my heart. Neither of us planned for a time where I’d have to care for her similarly as she had cared for me as an infant – but here we were.

 

I witnessed as she struggled to do anything – get out a lucid thought, feed herself, wipe herself, walk a single step or two…and I began to see my body differently. No longer plagued with self depreciating thoughts about my size and shape, I saw my body past pure aesthetics and began to appreciate what it could do for me.

As my mom struggled to do the things that we take for granted – things we just automatically do – I realized how lucky we were to be able to do them. I feel fortunate that I can have a riveting conversation with friends, or walk around NYC, or play with my dogs, or travel the world. I appreciate the fact that I can take a shower by myself, wipe myself, feed myself, dress myself in beautiful clothes (and not just utilitarian pieces that can handle a daily wash).

Seeing these simple things taken from my mother changed everything for me.

Since January, she’s been hospitalized twice for a severe UTI. The first time her temperature was 90 degrees, the second time – less than two weeks ago – her temperature was 93 degrees. UTIs are prevalent in people with Parkinson’s and, of course, in people who are incontinent. It strips away almost every last bit of her.

They did surgery on Thursday to put a feeding tube in her stomach, and ejected her from the hospital 24 hours later. She’s back in the same sub acute nursing home, and we’re not sure if this fourth stay will be her last time or her final place of living.

Currently, she’s not able to speak, can barely make eye contact, and this time around, hasn’t been able to squeeze my hand to let me know she knows I’m there. She seems sad and in pain, her brow furrows, her eyes water, she writhes a little with what meager movements she can muster.

It feels like the end.

But so did all those other times.

Ultimately we cannot know when that will be – for her, or me, or any of us. As much as it destroys me, her decay is a powerful reminder of how precious life is. How we need to do everything we can to make our world a better place in the short amount of time we have on this Earth. The impact we can make is monumental; whether it’s on the world, an industry, or even just one person.

My mom knew that, even before I was in the picture. One of her art works speaks for itself…

“My pillows are a means of entering and affecting the future even if I cease to exist. I reach to the future in the belief that mankind will continue to love surprises and that the human soul will still delight in a treasure hunt.”