The internet is filled with helpful facts about Fragile X Syndrome, and they are all appearing in concert with Fragile X Awareness Month. You can find everything from transitioning your child to school, therapy methods, toileting training strategies and all of the genetic information you so desire. But, you know what’s not listed anywhere?
How to die peacefully as a parent of special needs child.
Chris and I have worked tirelessly for 31 years since diagnosis to learn and implement what works best for our two guys. We’ve adapted every aspect of our life in hopes of giving them a world that takes all of their needs into consideration. Truth be told, time ticks away but our guys are stuck in a time warp. As they live a high quality of life in the bodies of men, strongly affected by a genetically passed cognitive disability, their routine is incredibly stable and smooth. In contrast, we are aging closer and closer to our assembled reality.
Eight years ago, I wrote my memoir that outlined our plans for our sons’ future as it was known back in 2014, but the specifics were a bit murky.
As I reread one of the last chapters in my book, the words resonate even more than when I originally wrote them. (page 278)
“….The point is that we can see a future. We can envision success. We can even visualize the actual steps now…..
When I think about the actual implementation of “the plan” though, it scares the crap out of me. The reality is daunting. Can it be done? Who will help? Will there ever be anyone who will love Jake and Joe as much as us? Will they be well taken care of? What if there is a difficult behavior issue that arises? Will anyone know how to manage this or what tools to use? These are scary questions—scary because we don’t know all of the answers.”
With the passage of time, we’ve been able to fill in a few blank spots, at least the physical steps.
In January of this year, we had the opportunity to purchase the home across the street from our current house. Even though it wasn’t an easy decision, it seemed in complete alignment with our life-long plan for “Jake and Joe community”. So, we’ve spent the past 5 months renovating the house in hopes of allowing 2 caregivers to live there. We have always envisioned having 2 caregivers live in our house when we retire, but this additional home will allow a full team to occupy space in a very close proximity to meet, hopefully, every possible need.
We anticipate that there will be two people to oversee the daytime routine across the street, and two others to manage the nighttime care here in our house. It is our hope that this will also allow for backup in every situation. During the past several months, I have been able to see clearly that there are many possibilities for Jake and Joe community. The reality is that we will not know every hurdle until we can put the actual plan in place.
Even after every foreseeable detail has been addressed, and every person involved is in place…we still cannot know every scenario. We cannot anticipate every possible minute, hour, or day. Without these answers, how can we find that necessary peace that Chris and I so desperately need?
With a majority of the physical pieces in place, now comes the really hard work….the mental preparation for all four of us. This is the monumental task.
Who will know when Joe needs a hug, or when to back away because he might bite you instead? I do. How do I teach that? There are a million details, but it’s the little things that I stumble over. Like, when we tuck the guys in at night (yes, we still do this). Likely a caregiver will not do this. I know we need to begin to back away, but my heart won’t allow me to right now.
It’s the little things….each and every detail needs to be addressed. On the other hand, who in their right mind would want this life? Will there ever be someone who wants to give up years of their life to take this on?
We spend our days trying to live our best life without exuding worry or fear even though it occupies the back depths of our mind. We are filling Jake and Joe’s years with memories and experiences that will hopefully stay with them long after we are gone. But, the facts still float around in our heads. Chris and I know that likely one of us will be left to finish it alone. There aren’t many couple that pass away together. In the meantime, we are working together as long as we can to see our plans through without that guarantee of time.
We are banking on the hope that we will live long enough to see every detail through, but no one is guaranteed tomorrow. We are awash with fear every day even though we exude hope through our actions.
What we are left with is faith; faith in our ability; faith in our friends, family and caregivers to finish what we started. There is no guidebook for this chapter. We have to wander aimlessly in the dark, feeling our way each step.
The darkness is so terrifying, I imagine it is comparable to the sheer panic one might feel just before jumping from a bridge while tethered to a bungee cord. You know you’ll be ok, but there is still that 1% of contagious doubt that courses through your body just before you plummet. In theory, we have 5 years before we retire. Then, shit gets real. We can’t wait to be ready. We have to keep plugging on. The eminent clock is ticking.
There may not be a point of absolute peace. Now, I wonder if everything will ever be done to the point where we can say, “Ok, we are ready”. At present, we have no idea how we will fill this new home with kind, capable people that will care for the most precious gift of our lifetime. We already know that no one will love them the way we do. But, how do we begin to take the tiny steps necessary to pass the baton on to the next custodian? On paper, I estimate the transition process to take 2 full years once we begin.
I pray that we have that many years to see our plan come to full fruition—to see our sons happy and enjoying their life without us. I know the truth in my head. I know that I have wasted mountains of energy in the past worrying about things that always work out. I know that Chris and I are capable to doing this. The life of a special needs parent is never done. It sucks. But, we will do it. Our purpose is defined. Step by tiny step.
We count down the moments we have left, even at our “young” age….because we must. We try to focus on enjoying every moment, doing things we all like to do together, not knowing what the future will grant us.
Now, this is some real Fragile X Awareness.To learn more about Cindi Rogers, her book or follow her family, please visit mrsrogersworld