I never had a two-year-old, so I can't honestly claim I have any inkling of what it's like, but I think I understand a morsel of the experience now. I did babysit, and sometimes, it feels a bit like I'm babysitting now. Sometimes, it even feels like I have a two-year-old who has learned the power to declare loudly, even when he hasn't practiced his speech therapy, "No!" (Usually when I'm trying to coax him into daily speech therapy.)
I adopted. I adopted hard-to-place kids. I adopted kids whose previous adoptions failed. I fostered kids between placements. I fostered kids with horrific backgrounds. My terrible twos were cantankerous sevens and oppositional tens and defiant thirteens. I never gave birth, but boy, oh, boy, did I ever have labor pains. I always thought there was nothing quite as taxing as teenagers. Especially troubled teenagers. I mistakenly thought troubled teenagers were the worst thing I might experience. I've learned a stubborn adult with Parkinson's can be every bit as rebellious as a teenager.
As an adoptive parent with ongoing (and often overbearing) supervision and monitoring by government agencies, I often felt I wasn't a parent, only a babysitter. I had to apply (well in advance) for permission to do common things most other parents don't give a second thought. I had to have permission to take kids to church, to take kids to a doctor, to take kids on vacation, to schedule IEP meetings with educational staff, etc, etc, etc... In restrospect, I guess I always had to prepare for the worst and expect the bizarre. It was a lifestyle. I adapted because I wanted to be a parent, and that was the only way I could accomplish the goal. I knew it would be a hard thing, but I had learned through the process I can do hard things. I think that experience serves me well now. There are so many hard things.
I wanted to make life better for someone who needed love and second (and third and hundred and twenty-seventh) chances. I wanted to teach abused children how to love and trust. I wanted to love and trust someone others thought was unloveable and untrustworthy. I wanted to love unconditionally.
Once I completed that journey (which actually is never finished, even if your adoptee runs away, even through years of no contact, and even if, upon unexpected reconciliation, the now-grown adoptee vows to never adopt your lifestyle, your beliefs, your outlook on life), I still had that insatiable hunger to share adventures, teach, learn and love unconditionally. I wanted to be part of a familial unit that lasts forever.
I found Lizard. He was the most incredible human being I'd ever met. We experienced 17 of the most joyous years anyone could ever expect or plan. There were hard times, particularly involving my adopted kids. There was sadness and heartache along the way; the death of his brother, my health issues, work struggles, financial challenges, home repairs. But I woke up every morning knowing I'd get to spend the rest of my life with this wonderful human being who respects me, loves me and treats me as if I am the most important person on earth.
Lizard was grateful the diagnosis was Parkinson's. I still remember the day he told me everything would be all right because it was "just" Parkinson's. Not ALS, as we'd feared.
Neither of us had any inkling how vicious Parkinson's can be. Lizard expected to one day not remember me, and I would always assure him, "We'll just start dating all over again and fall head over heals in love all over again. It will always be a new adventure. We will always fall in love again."
We were so oblivious.
For many, Parkinson's is tremors. For many, there are memory and/or balance issues. Sometimes there are digestive issues. Communication issues are common. These things we knew. We hoped we wouldn't experience the full throttle, but we thought we knew what we were facing. We didn't anticipate skin conditions, hallucinations and dementia. Never in a million years would we have expected psychosis. Every person is different; every person experiences Parkinson's differently. Not everyone experiences every symptom. We never expected to experience the full spectrum, and then some.
Almost everyone who is diagnosed with Parkinson's learns very quickly that staying active is the key to happiness. Boy, were we going to seize that bull by the horns!!! We experienced more adventures in our (too brief) first 15 years together than most couples experience in a lifetime. This week we celebrate our 19th anniversary. I'm SO grateful for so many years and so many memories!!! And yet, it feels every day as if more of my favorite person is being harshly snatched away from me.
Everyone who is diagnosed with Parkinson's has their own unique journey. Lizard's wellness goals have been fraught with trauma that continually ramps up the Parkinson's. When your Parkinson's-specialist neurologist tells you he's never seen a case move this fast, you feel almost abandoned. Lost and all alone in a wicked nightmare. You still have all the resources, and you still keep trying to do all the right things. But nothing works. Nothing slows the Parkinson's. Nothing stops what feels like a car careening down a narrow and curvy canyon at 90 mph with no brakes. No breaks. Literally.
This isn't the life we planned or expected. We definitely wouldn't have chosen it. I recently joined a new online support group that focuses on the silver lining of Parkinson's. Because I desperately need that. I'm not sure it really exists.
We often tell each other there are many who have it much worse, and we try to do what we can to help others. That's always been such a key part of our lives. But as the Parkinson's progresses, it keeps robbing us. Lizard's abilities. His personality. His strength. His peace of mind. His happiness. His passions. His willingness to cope.
I often catch myself wondering why I don't have time to exercise, to crochet, to design, to edit snowflake photos, to quilt, to read, to sit peacefully and just ponder...
This is my schedule these days. I work, sometimes more than ten hours per day. Thankfully, from home all but a few hours each week. And, extremely thankfully, for bosses who understand the multitude of interuptions. When I'm not working, I help Lizard tend to personal tasks he can no longer do alone. I organize for him. I try to help him find misplaced things. I help him clean up spills and accidents. I walk with him when his legs are restless. I massage his legs when they are restless. I get up when he gets up. I try to be there for him every time he needs help. More and more often every day now, sometimes every hour, I try to calm him and assure him he is safe and that I will always protect him.
I spend what time I can on my knees begging God to please take the hallucinations away. We can deal with the rest. Please, please, just take this one thing away.
But the hallucinations continue to get worse.
I believe in miracles. I know not everyone can be healed just because a prayer is offered. I can see tender mercies every hour of every day. I know God loves me, and I know He loves Lizard. I see proof continually.
I know some of the hard things we go through help us to become stronger. I've learned I am stronger than I realize. I'm never going to give up.
But there are moments when the loss is just so overwhelming. The loss of my life companion, my soul mate, the person I could turn to for everything. The loss of cycling and climbing. The loss of the mountains. The loss of adventure and exploration. The loss of photography and designing. The loss of writing. The loss of social interaction. The loss of freedom. Sometimes, the loss of sanity...
There is shut-in-ness. There are agonizing hours of tantrums fueled by psychosis. There are blurts of anger and frustration over the loss of control and independence. There are so many sleepless nights, that is now our norm. There are so many tears, my pillow often resembles a leaky waterbed.
We were encouraged in April to share our journey to help raise awareness during Parkinson's Awareness Month. I sat down to the computer several times to try to compose something I could be proud of and that might help others. I chuckled at the meme about Parkinson's awareness lasting a lot longer than one month when you're actually dealing with Parkinson's.
At the end of each day, all I've got is faith and hope. I know one day Lizard will be whole again. I know our reunion on the other side is going to be the most joyous experience either of us has ever known. I long for that day. I miss my best friend so much, I can't wait to be in his arms again.
Until then, I'll just keep trying to get through each challenge as best I can. I'll keep trying to calm and soothe him. I'll keep looking forward to the day I know eventually will come.
