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 30th 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 6th 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.