My Life-A Race to the Finish Line

Our family enjoying the beach in FL, October 2018

When Jake and Joe were first diagnosed at the ages of 2 and months-old, I rarely thought about what my or my husband’s death would mean to their lives. I was too engrossed in the day-to-day. My thoughts were consumed with which therapy appointment I had to tote them to, or trying to interpret their every need when they couldn’t tell me.

As the boys passed toddler-hood and moved into preadolescence, my time was still depleted by their every need while contemplating which IEP goal I needed to focus on, how to stop shirt chewing, or the ever-elusive hand biting or groin scratching. I couldn’t face even the thought of looking too far into the future. There was too much uncertainty.

I wasn’t able to even conceive what Jake would be doing when he was 16 years old, or how Joe would learn to cope with all that consumed his little body when he was 10. The future was too scary to foresee, especially on those bad days when everything Fragile X Syndrome looked me straight in the face. Yes, there were even days when I hated that I had to think about all this when my friends were doing something totally different. Jealousy abounded.

My thoughts were only a dark place where images of the worst scenario lived. I couldn’t see the hope that existed within their ability or the people that endlessly supported us. Then, as with all things, my thoughts evolved. The boys grew and learned and flourished far beyond what I could have conceived in my own thoughts. 

Fifteen years ago, I did something that dramatically shifted my thoughts.  I attended a workshop put on by the ARC of Colorado that included planning for their future, a session on Wills & Trusts, Legal Guardianship, an explanation of the different waivers available through our county agency, one on Social Security and a brief touch on employment.  I was apprehensive at first to learn about all of this intimidating stuff, but, it changed our life!

As I sat waiting for the first speaker to begin, I gazed around the room at the other attendees. There were Mothers, Fathers, Grandparents and Guardians. The speaker began to introduce the days’ agenda and asked us each to give a short introduction. After each person had given their short spiel, it was clear to me that I had the youngest kiddos in the room….a testament to the fact that I have no interest in waiting until the last minute for anything in my life. I don’t like the stress that comes with waiting until the moment is upon me, nor do I like not having all of the information available to make a decision and plenty of time to analyze it. It was evident that this workshop would provide me with tons of information to jump-start my thinking in a new direction.

I raced home with all of my notes, eager to share all I had learned with my husband, Chris. For months after the workshop, I was still energized enough to tackle some of the issues they had talked about.

Over the next several years, Chris and I took the leap and created a will and special needs trust with the help of a lawyer that guided us to make decisions. One statement during our consult with him still resonates with me today.

He said, “Make decisions on guardians and trustees based on today, not what you think the future will hold. You can always revise the documents later.” This gave me peace and the ability to sleep at night. It felt liberating to be able to check that one HUGE task off of our to-do list without going into speculation about who would be around in the future.

I had a pile of information on Legal Guardianship that we put to good use when Jake turned 18, and later, Joe turned 18. We breathed a sigh of relief as we crossed off that daunting task. I subsequently took another course on how to file the Annual Guardianship Report by myself in order to save a few pennies (about $1500 a year to be exact).

When the guys were eligible, we filed for and received SSI and Medicaid. This is a privilege that I still struggle with. I was raised by folks who never took a handout so it stings a bit to accept help. Knowing that it will assure services for the boys long after we are able to (or if we are unable to) is the one thing that gives me reassurance that we did the right thing. I feel like it never hurts to question convention. Just because others do something does not mean we have to do it…but, in this case we feel it has helped our sons more than it has hurt our mental struggle. We strive each day to fulfill our part of the responsibility for our sons, too.

During our sons’ journeys through middle school and high school, we heard many options for employment, or ideas on how to obtain employment. This was the hardest thing by far to envision. We were told, “Think about your sons interests and focus on those.” I wondered how we could capitalize on an extremely high interest in Sesame Street or Mister Rogers Neighborhood as a job opportunity. Well, suffice it to say that we worked methodically and exhaustively on securing motivating and interesting jobs for both of our sons. I detail all of these challenges in my book, “Becoming Mrs. Rogers” (Click Here to order) if you wish to read more about that.

The compilation of everything I learned during that workshop caused us to write down a conceptual 2-year transition plan on how we hoped to retire without our sons and leave them in the care of others in our own home. Mind you, it’s been only on paper without super-fine details attached up to this point. There were some holes in the plan that we just could not fill 10 years ago when we wrote it. But, it would include the fact that we’ve left our home in trust for our sons so that they can viably stay in their own home with constant supervision. As with all things in their life, it requires a VERY gradual, methodical change in order to be successful.

This entire transition plan, we knew, would cost money.  We had no exact idea how we would fund the caregivers or the upkeep of the house. So, some years ago, we established some ways of saving money in the trust. I also continue to tap away at a 3-ring binder that will record facts about the upkeep and maintenance of the house. This gives us an idea on how much it will cost…. but nothing is perfect when you are projecting into the future. It’s a start, and perhaps a middle.

This month, a big thing happened. Jake qualified for a different waiver that will help fund his caregiver for the rest of his life, despite us believing that he would never clear the wait list we faced when he signed up at the age of 15. This came long before we ever thought it would. It was the best and the scariest news yet. We are thrilled that the question, “How will we fund the caregiver?” has been answered, but it puts things in motion that we were not ready to think about in our mid-50’s.  We will be ready. We are prepared to move forward, not backward.

It’s been fifteen years since that workshop, and we’ve arrived at a really good place in our lives. Our worst nightmare never came to fruition despite the worry. I only wish I could have that time back to spend in a more productive way.

Chris and I have spent a great deal of time over the last year talking and implementing many things that we need to tick off of our list in order to know that our due diligence is done. It’s been difficult to say the least. Morbid for some to even to read about, I know.

We are working with our lawyer to complete the third revision of our Trust as I write this. It’s all evolved in a very natural way and has come to a better ending than we ever imagined. We feel at peace with the decisions we’ve made so far.

Over the past year, we’ve taken time to talk about and resolve issues surrounding our own quality of life and the life after that.

-We were able to purchase long term care insurance so that when no one is able to care for US, there will be a plan. It was a nagging, unresolved issue that has since been dealt with. One less worry.

-We are in the process of pre-paying for our own funerals so that no one will have to think about or decide what to do. Check it off!

Another thing we have come to realize is that our sons enjoy many of the things we do, including spending some time at the beach during the cold, long winter months. So, we are exploring the idea of getting a small place in a warm climate where we can begin to practice another transition that will, hopefully, carry on after we are gone. It’s a work in progress. The ability to envision a positive future has allowed these thoughts to flow through and be a bright spot as we get older.

Our sons have some of the best quality of life of any people we know. They love their home, their jobs, their friends and all of the opportunities that come their way. Behaviors are still with us, but in a minimal way. No one in our family is perfect, so we do our best. Yes, we still have some learning to do before Chris and I exit this earth, but we have faith that it will all happen in due time.

So, for now and the rest of time, we are vowing not to spend every waking moment thinking about Fragile X Syndrome or what will happen when we are gone, but making memories to last a lifetime.

To learn more about Cindi Rogers, read her full story at Becoming Mrs. Rogers