There is something that special needs parents can never get enough of and it is often in very short supply. Sometimes it’s free, and other times we pay for it, but it’s worth every single penny! Most of us would say that this gift is invaluable and it is much appreciated when we receive it. I am more aware as time moves on how essential “it” really is for my mental and physical health. In case you haven’t already guessed “it”, I am referring to the most coveted and much needed “respite”! It is often considered to be a luxury for many special parents and unfortunately hard to find. However, it’s truly a necessity that we cannot do without if we expect ourselves to take care of our special kids long term. This fact becomes more relevant as time moves forward. I forget sometimes that I am getting older; call it a case of extreme denial, although my body gently ( and sometimes not so gently) reminds me that things are changing, slowing down, etc, the inevitable part of the life cycle that each one of us will face…
Acceptance and awareness of middle age finally occurred to me last year, after my 57th birthday. I’ve noticed over the past 9 months, small differences, albeit significant enough, to get my full attention. Things like experiencing the Tin Man Syndrome when getting out of bed each morning; the stiffness in the joints that require movement and the fish oil to get me going again. Or my energy level that was once quite robust ( in my heart I will always be a night owl), but is now mostly depleted by the time Brian goes to bed. Speaking of sleep, it’s been disrupted many nights by menopause, racing thoughts, Brian’s moonlight shenanigans and other pesky interruptions. Chemo-induced neuropathies in my fingers and toes will forever remind me when cold temperatures are here and can also be quite tiring. Finally, changes in memory, being forgetful, like standing in front of the pantry for several seconds trying to remember exactly what brought me there in the first place. It’s all predictable, inevitable, and sometimes scary if I think too much about it. I pray daily that Jim, Brian, and I don’t lose our memories simultaneously- can you imagine what a disaster that would be?! Hence, the emphasis that we try to place on good nutrition, exercise, and rest, the important ingredients for a long and healthy life. Eating well and physical movement are under our direct control, but the rest and relaxation component requires more than just a good night’s sleep. We are dependent upon others to help us get a much needed break, which is quite often. I look at these breaks, wherever and whatever they are, as an investment in my emotional and physical well being, which results in being a happier, more patient Mom and wife.
When Brian was first born and for quite a long time after that, I did not believe that I had the right to relax for some reason. This was not a conscious thought, but my actions and lifestyle were so unbalanced and “Brian Centric”, that it’s no wonder I didn’t have a nervous breakdown. I came close, however, when my body and mind sent warning signals that I just couldn’t ignore, like depression, and eventually colon cancer. Cancers can be caused by inflammation in the body, which can be triggered by extreme stress, which was my experience at the time.
So, when you know better, you do better! Going through these experiences have taught me that I needed to dramatically change the way I was living my life and that respite must be part of the daily regimen, along with nutrition and exercise of some kind. Respite comes in many shapes and forms. My personal favorite is alone time. It’s funny how introspective I’ve become in recent years and how I crave solitude for physical and spiritual replenishment. I’m outgoing, but I’m a private person. I love being in a crowd, yet I most enjoy “one on one time” with family members or friends. I especially covet that alone time to walk, read, nap, or watch a favorite program; it really is the simple pleasures in my life that can be most restorative. So, any opportunity I can create to make the aforementioned happen,, I do so, even if it is just for an hour, Every. Single. Day. These things are as vital as breathing air, so they MUST happen, no excuses! I’m too important not to take care of myself.
I am so grateful for any and all respite opportunities that I receive that keep Brian busy, whether just for an hour, or overnight. It really is good for both of us; I get to relax and he has opportunities for social independence, which is especially important for later on when Jim and I are no longer here. I enjoy catching up with other parents/friends or taking the time for myself or with my husband. I am refreshed and able to resume my caretaker role for Brian when I return. Brian is learning skills and spending time with peers. I can’t think of a better way to detach and recharge my batteries: it’s a true “win win” for all concerned. I have also learned that respite time doesn’t have to break the bank or require days away ( although that is certainly the best kind of break!) to have the same refreshing effect. The key is the respite frequency and to incorporate it into the daily schedule.
Remember: if the “Mothership” ( or “Fathership” ) goes down, the whole family will sink… That is not good for me, my husband, or Brian. There is too much at risk if I don’t take care of myself; self-care is my priority and must be my life-long mission for me to survive this special needs walk for the long haul. There is no other way- “you are worth it, so work it”,repeat!!😊👍🏻
Below is a list of some of my favorite things to do whenever I take a respite. How about YOU?!
Reading a non-special education book
Talking with a good friend
Taking a bubble bath
Going out to dinner with Jim
Meeting a friend for breakfast or lunch
Listening to music
Watching old Seinfeld episodes
Getting on a plane
Planning a vacation
On a final note, most special families would agree that one of the top gifts they would LOVE to receive for Christmas, Chanukah, or their birthdays, would be RESPITE! The precious gift of time alone or away for those parents raising disabled children is truly most appreciated, more valuable than any present money could buy, believe me!
May you experience the daily respite that you need and deserve, in order to live the special needs life with strength and grace. Until we meet again, thanks for reading!