I was recently going through some old pictures of Brian when he was a baby and was reminded once again how quickly time has flown, despite many agonizing moments along the way when the opposite was also true. I can’t believe that Brian will be turning 17 years old this Summer- how did that happen?! These precious photos tell me otherwise as I look at them. I remember so well the story that accompanied each one like it was yesterday, forever etched in my mind. A mother’s joy and sorrow all wrapped into one heart that will forever love her beautiful boy who will always be a blessing, and who is also vulnerable in the world. As Brian is getting older, so are Jim and I . Quite frankly, I’m in deep denial about turning 59 this year. In some ways, it doesn’t seem conceivable, though my body often reminds me these days that I am definitely not the spring chicken that I used to be. My energy level is not quite the same, and my wrinkles are reminders of my years of too much sun on the beach without sunscreen, though I would prefer to view each one as “wisdom stripes”, earned by years of life experiences.
As young as I would like to think that I am or remain in my mind, the reality is of course, we all grow older and will eventually die. It’s the inevitable part of the life cycle that each one of us will face. This harsh fact often stops me cold in my tracks and invokes a fear like no other: when Jim and I die, what will happen to Brian? It’s the unanswered question that keeps many special needs parents awake at night; I have woken up in a cold sweat on several occasions because of this nightmare that I have dreamt about while in a deep sleep. It permiates my thoughts and actions and is the driving force behind what and why I do as much as I can for Brian now while I am still alive. My husband often jokes that perhaps modern medicine will advance to the point where one day, all of our body parts that have worn out will be replaceable and we will become bionic people, living to a ripe old age. While anything is certainly possible, the reality is, Brian will most likely outlive us and this truth literally scares me to death.
Why am I so afraid? Brian will always require a tremendous amount of support in order for him to live a fulfilled/ productive life and there are no guarantees that such resources will be available to him in the future after Jim and I are gone. Writing these words pains me so much to consider, even for a second, but it is the stark truth. Brian’s disabilities are such that while he does make his progress, and will continue to learn throughout his life, he will always need permanent and consistent support. Brian will always require help with everything throughout his day, and when you break that down, it can literally be hundreds of steps that are necessary in order to accomplish a whole host of tasks. It truly is mind- boggling and overwhelming when you think about all the steps a person takes to complete an average day.
Adult programs and residential facilities for the disabled are slowly emerging, but the need is so great and there are no guarantees for the right placement . There will be many disabled young adults in the near future who will require supports of various kinds, but there aren’t enough options right now to accommodate everyone. This is exactly why graduation from special education programs at age 21 can be so frightening, with such an unknown future ahead for many graduates. I try not to think about this point too much, as Brian still has some time left in school, but am certainly aware that graduation day will come. I hope to have a game plan in place before that time if at all possible.
I often pray that Brian will pass on before Jim and I. That may sound morbid or strange to some people, but the reality is, no one will ever care for your child the way you do. I realize how absolutely devastating this would be and I would be forever heartbroken. Yet , when given the choice, this would still be my wish. No one will understand all the quirks, nuances, strategies and what your special child needs, the way you do. No one will ever love your child the way you do. I have no doubt that Brian will experience a sharp decline across the board if we die first. I see how dramatic little changes can effect Brian, let alone a major loss. So, for these reasons, and many more, that would be my preference if I had any say in the matter, which of course, I don’t. Yet, in the meantime, I will try my best to take care of myself so that I can live to be a bionic old lady and at least know that I am doing everything I can to be there for my son.
How do I prevent this fear of leaving Brian behind from consuming me altogether? The answer is doing my best and trusting God for the rest. This is not easy and requires a daily declaration of faith that does not come naturally- at all! It is often a painful struggle and a series of “why” questions or “ how”… I don’t have the answers at all and sometimes all I have are my tears and broken heart. Yet, I have also seen doors open unexpectedly, opportunities arise, or people, aka, “angels” who were heaven sent just at the right moment to help us help Brian.
There is no reason to think that miracles wouldn’t continue to occur throughout Brian’s lifetime. In fact, I expect to see many more along the way! In the meantime, a willingness to try, to explore, to risk- all of the things that we special parents already do on a daily basis to help our kids is what is most important . I know I am happiest when I am busy helping Brian live his best life; it makes me feel productive and also gets my mind off of my fears and other things that I can’t control.
Like Brian, I continue to trust daily that somehow, someway, his needs will be met, not only in this moment, but for all of his remaining earthly moments. This is true even when I don’t understand how it will be possible, even when it doesn’t make sense, and especially when there seems to be no hope. Hope is what gives me the courage to face the good, bad , and the ugly in Brian’s life and always will. Without hope and faith, life is just too hard to manage on my own terms. I am glad that I will never be alone on this eventful special needs journey, no matter what comes, and that makes all the difference!
Until next time… thanks for reading! 😊
2 thoughts on “What I Fear The Most..”
❤️so well said . My cousin has a Down syndrome girl who is about 36 years . They moved her 5 years ago into a group home . She has a one on one caregiver and it’s working really well . Lots of love and laughs. She comes home to visit mom and dad and have meals at least once or twice a week . They can go on holiday or go out for a movie and not worry about her anymore. We are in Canada with a different health system, as you know
LikeLiked by 1 person
Gail, that it is so good to hear and encouraging! The scenario you describe is what all special needs parents hope for their children, thank you for sharing this! ❤️😊👍🏻