It’s been a while since I’ve written. Trying to find my way back. I’ve been struggling to find time and energy to put “pen to paper.” The last 3 years have been a huge, long, dark time for our family. Depression hit our family hard. Not me- well, not the hardest. Of course, if you deal with a family member that is depressed, you realize depression IS a part of the entire family.
Our life journey hasn’t been an easy one, as most know. Everyone has their stuff. We seemed to be dealt with a bigger share than most. Less than a few. I come from hearty stock.
We started this journey with Sophie over 22 years ago. In the beginning it was full of unknowns, lots of hospital stays, lots of questions. 22 years later it still has this flavor. We traded our youth for many sleepless nights, both in and out of the hospital that was starting to feel like a 2nd home. The level of worry that goes with this rare disorder and the constant diligence, searching for ways to help her and educating everyone is very draining.
In the beginning, we enjoyed a cute baby with these beautiful eyes and smile that brought you in, surrounded by family and friends trying to help us through this scary time. Life changed drastically. Some friends and family stayed. Some drifted away as the years became more years. We have always been fortunate to have those who have helped us over the years, many who were “strangers” until they were touched by this amazing soul. Some stayed for a long time, some stayed and walked with us for a short time, others came back after a time. I’d like to believe they all were touched by this child of ours.
Then there were some years where we felt like “we got this”, we can do this. Less hospitalizations after finding some solutions to the many issues Sophie has to deal with on a day to day basis. We were not asking for help all the time. Asking for help is not only exhausting, it isn’t the way we were raised. Pull yourself up by your boot straps and keep going.
And going. And going…
We live a life on high alert that goes with someone who is medically fragile, non-verbal and doesn’t feel external pain. Sophie has a very rare disorder called HSAN type 2. While this explains some of what it is, there is so much more. We’ve spent many years of in and out of the hospital, trying to find answers to why her GI tract doesn’t work well, how to help her on so many levels, infections that go unnoticed until there is a crisis, broken bones that show up out of nowhere. This life has been compared to someone with PTSD (Post Traumatic Stress Syndrome.) However, there is no “post.” It is an ongoing, relentless, unwanted passenger in your life.
This certainly takes a toll. Everyone handles things differently. While I was busy keeping the girl alive, keeping appointments, keeping track of everything, making sure the kids were clothed and fed, Rick was silently falling apart. Maybe silently isn’t a good word for it. He has had a history of migraines- debilitating migraines. They got worse. And worse. He entered a world of pain, medications, and depression. Spent more and more time “in the cave.” After 2 hospitalizations for pain management, he still wasn’t getting better, only worse. Worse with the depression. I was too busy scrambling to keep our ship afloat while we were becoming overwhelmed financially and Rick was drowning. Social stigmas certainly kept us quiet, telling very few people our issues. I finally reached a point that I couldn’t keep the secret.
We know we cannot do this alone. We (meaning the entire family) see professionals to help us through this life. I found help with friends, professionals, medication, meditation, breathing and yoga. Rick continued to isolate himself. Watching someone descend into the darkness is very painful, you feel very helpless. I’m a helper- I should be able to help. No, this was his journey to take.
What happened next is interpreted differently between Rick and I. Sophie had a medical crisis that Rick witnessed and had to act upon. I feel like this was the catalyst. Sophie ended up in the hospital for a month. Her life was saved, but she had numerous complications.
Just a week before this happened, Rick had started in a Depression Outpatient program that was to run 21 days. Interrupted. He had to be there for his daughter. I’d like to believe that Sophie had something to do with getting him outside of himself. First steps. Then he went back to the program which seemed to be a great fit- people who understood what he was going through and gave him tools to emerge. Follow-up. Continued weekly meetings. It is awesome to see him interacting with his children, laughing at the animals, smiling again. While he has a long way to go, the changes have been wonderful. I’m hopeful that they will stick. We have a long way to go. I’m not even sure of our destination.
So, what is the take away? Caregiving in the extreme is exhausting and financially it can ruin you both mentally and physically. Take time for you, but don’t isolate. Covet the people who stay by your side, those who understand, those who are “your tribe” for they will help you just by being. Keep searching for the key to unlock your happiness-it’s usually within yourself. Ask for help-so many people who live “normal” lives understand in the abstract that your life is unique, but don’t know how to help. Get creative or find someone who enjoys thinking outside the box for you if you just can’t go on. Everyone has their limits. Reach out before you find yours. Peace.
(Rick bravely approved this writing, so that others like him will recognize when they need to get help.)