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

I WILL ALWAYS BE THEIR MOM

First I was a girl

Then I met him and I became a wife

I held our firstborn in my arms, and I became a Mom

We became a family

I worried about a sniffle, a cough or a tumble

He grew, but at a rate that didn’t seem quite right

A Mother’s instincts are stronger than facts

We longed for more love

So we had another son

As I held him in my arms

Many questions surfaced

The day I heard “diagnosis” was a new chapter of sadness

My worries grew and grew

I felt unrelenting guilt as I gazed into his blue eyes

The gene came from me

I prayed to God for some kind of resolution

If only I could do more

I knew if I did more that it would cause a cure

No cure came

But the behaviors and challenges did

I saw my sons as a representation of Fragile X

Long face, prominent ears, speech delays, motor delays

It defined my every waking moment

I didn’t know how to love this

I had to redefine my expectations

I quickly learned to always have the green Gecko shirt clean

Then I learned to buy 5 of everything

Then I taught him to do his own laundry

Waiting was especially hard

So I hurried at everything

Then I taught him how to wait

This took a very long time

I was consumed by all things Fragile X

School meetings, therapies, strategies, approaches

Each day was a learning experience

How to dress, how to learn, how to care for their every need

Then I saw that they could learn some things

And do some on their own

As the years passed, we continued to learn together

I focused on tasks and jobs and life skills

They rose to unexpected heights

They taught me patience and perseverance

I am still learning those

Together we learned how to live together

I learned how to cope with my own expectations

They learned how to tolerate me

Then, finally, we learned how to live

It took me a long, long time

I had to give up the traditional definition of Mom

We had to learn how to spread our wings

And fly together
In an unconventional path

Now, I almost never think about Fragile X Syndrome

I like to think about quality of life

Sometimes it’s a quality of life without me

Without Mom

I’ve learned that it’s ok to think

About their life without me

Life without Dad

Life without family

It allows a new realm of thoughts to emerge

New thoughts about reality
New difficult questions

Who will care for me and Dad

What about our own retirement

These question bring about worry
But it's also forced us to act

Action has brought about peace and contentment

We are able to breathe deeply

We are able to feel encouraged

I found out it can be ok

We are making plans

Transition plans

Quality of life plans

Difficult plans

The best things can happen when

I allow myself to think ahead in a positive way
To take action instead of worrying

The good people come through

They emerge when I least expect it
This has taught me to have faith

Nothing has ever or will ever be perfect

That’s part of my own learning

But they are perfect

And I am their Mom

I’m glad I’m their Mom

Even through all of the really hard parts

I’m grateful for all of the learning

Mostly for learning to cope

I’m forever a Mom

To two amazing sons

The learning will never be done

I will make mistakes
But they love me anyway

Thankfully

At 28 and 30

They still hug me daily

They still call me “Mom”
My love could not be any deeper
I will always be their Mom

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

Looking in The Rear-view Mirror

It’s taken me nearly a year to formulate the words to write this blog. My oldest son, Jake, turns 30 -years-old this week. If the very words weren’t enough to freak me out, then the facts could be. As I’ve come to this harsh reality over the past many months, my emotions have been a virtual roller coaster.

First, I began to feel a sense of panic over the fact that my son is 30!  T-h-i-r-t-y!  3-0!  That makes me….errr….well….not a spring chicken anymore! That also makes him not a young man anymore.  He’ll be 30! I don’t think I even had this much trepidation over my own 30^th birthday.

Once the panic began to ebb, I felt a strong sense of urgency.  An urgency to make sure that my husband and I have done all we can to teach him what he needs to know to go forward without us—a fact that seems to be creeping closer with each passing day. This urgency comes when you have a son born with a cognitive developmental disability, and you are responsible for teaching them every single thing they need to know to be set up for their own success in life.  I’m not talking about business sense or some other professional nonsense.  I’m talking about very basic skills to get through each day with as much independence as possible, like dressing, showering and eating—basic life skills.  Gradually teaching Jake, and his brother, Joe, 28, who is also affected by the same developmental disability, is something that my husband and I have worked our butts off at for the past 20 plus years…in fact, I wrote a book about many of our methods and strategies in an effort to help others get to where we are-- Becoming Mrs. Rogers-Learning to Live the Fragile X Way! But, we are not finished yet.  They are not completely ready yet, and this frankly scares the shit out of me.

So, I do what I have always done….I take some time…..like a year….and I analyze my emotions and try to make sense of them in a way that helps me get a handle on them.  I have to find ways to cope; I need to be courageous and present for our family.

As I sift through my emotions, I find some calm in the one thing that has always been available to me—my hypothetical, historical rear-view mirror. I often find it helpful to gaze in my rear-view mirror in order to gain some significant perspective on a current situation. It allows me to use lessons from the past to cope with challenges that lie ahead of me.

Looking all the way back to when my sons were babies, and moving forward through some of the toughest challenges of my life to-date, helps me see that each one held a special gift.  Each challenge holds a special memory in my bank that I can draw on when I need that sliver of perspective. In hindsight, those gifts seem to be far more worthwhile than the actual time we spent toiling over the challenge.

I’m not particularly fond of the word “challenge”. I think it’s been grossly overused to the point where it no longer reflects the actual depth of each point it attempts to describe, but there isn’t always another word available. The fact is, who doesn’t have challenges in this human life, after all?

• When we received a diagnosis of Fragile X Syndrome for both of our sons within a short span of months, my husband and I suffered heart-wrenching agony over the loss of “normalcy”. This taught us grace and passion for each other and our family beyond anything we could have gained otherwise.
• As we painstakingly navigated ages 0 to 7 years with our sons, we wondered why the word “sleep” was ever created. We had not seen much of it! We were consumed with attempts to get them to rest, particularly our youngest, who, as it ended up, did not sleep through the night until he was 7-years-old. We steered our way blindly through each day and then each night as the years passed and we grew more and more weary. It took 7 years, but those days and nights did come to pass and we are all finally sleeping. Now, it only seems like a distant memory, but vital in the scope of life teachings. This difficult lesson taught us to appreciate good sleep and all that is brings to each day.
• When we grew frustrated and tired over, what seemed like eternity-but was probably 2-3 years, our youngest son chewed the collar of his t-shirt until the seams separated and we continually applied cream to his raw chin until we were blue: this experience taught us patience and resilience beyond anything we could have imagined.
• We ached from hunching over as we held our sons hands above his head and emulated the motions of walking, praying all the while that he would walk at the conventionally appointed time, only to be shown that forbearance was a crucial skill that we must learn. Each of the boys reached this milestone in their own time, but they did walk!
• We cried and tried to anticipate the day when Jake would utter his first words. Our patience grew weaker and weaker as the years passed. We thought we had done everything we could do to facilitate the arrival of that huge milestone.... it finally came at the age of 6 when he was completely ready himself. This taught us faith in things we could not change.
• I remember a seemingly insurmountable sadness and worry over our years of struggle with our youngest sons’ aggression as he navigated through puberty. This poignant challenge taught us morality and then it taught us everything else we needed to know on how to live the Fragile X Way.

As we face yet another struggle of unknown origin with an unknown cure, we find peace in that ole’ rear-view mirror once again. Joe, who has never had an OCD tendency in his life, unlike Jake whose had so many we couldn’t possibly count, developed an OCD behavior that we have not yet remedied despite 9 full months (so far) of attempts. The facts and attempts at a solution read something like a case study which I may blog about in the future, but for now remain an action plan. We are learning more about persistence and perseverance….even at the ages of 28 and 30. 

I could easily describe in endless detail 1,000 struggles, 1,000 trials and tribulations, 1,000 gut-wrenching challenges. The truth is, now that years have passed, I am able to look through that rear-view mirror and glean so much perspective that I am able to cope more easily. I only wish I could take back so much of the time and effort I wasted worrying about those challenges. This is a lesson in-and-of-itself for me. I wish there was a way I could gift that lesson to the many other families that I know that struggle with these things.

Even though I still have momentary bits of panic, my sense of urgency gets less and less; my acceptance of our life grows calm.  Milestones come and go without incident despite that worry. I have faith that it’s all going to be ok. We'll get through this birthday with jubilant celebration for all of our sons' accomplishments and the joy that he brings to us every day. Thirty is just a number--not an accurate reflection of the "miles" we've traveled.

Besides a birthday, this week, our family also hits another huge milestone. We are planning our 6^th airplane flight with the guys, but our first international flight. It will be a glorious break from the cold winter we are having here in Colorado. Both boys have somehow mastered the major steps required to take a flight, so adding a couple of steps for Customs and Border Security should be easy enough.  As a precaution, I’ve advised Chris that he and I should have a little drinky-poo on the plane so that we can set a good example and be ultra-relaxed when we arrive to face whatever unexpected, uncontrollable issues arise. It never hurts to be prepared.

Just in case, I’m packing a rear-view mirror.

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