Keeping Hope Alive
These past several months have been rather difficult. Despite the fact, that in many ways I think we have a good handle on how to manage a life with special needs, lately we seem to experience more disappointing and deflating moments than uplifting and optimistic ones. Although we thought we had figured out how to navigate several important systems in our lives, such as school, family time, therapies, and support; something was still missing, or actually, something got lost in the shuffle.
It was during a conversation with my son Cole that I suddenly realized what we had lost in the chaos of our daily lives; it was hope. Over the last few months, I had become keenly aware that there had been a significant change in his relationship with Sydney. In fact, Cole seemed to be pulling away from Sydney. He used to have the patience of a saint. Now a simple “hello Sydney” was too much to ask. I was perplexed by this shift in behavior so the other day while driving Cole from one activity to the other I asked some pointed questions. I began slowly by discussing how hard it was sometimes to deal with her labile emotions and how I needed to work on my patience with her and then I asked him if he shared those same feelings. Cole who is normally a very quiet and introverted kid quickly offered up that he felt the same way. He then shared with me what I had already noticed for weeks, “I used to be so good with Sydney and now I don’t want to do it anymore”. He then went onto share “Mom I guess I thought that by the time she was 6 it would be different”. He continued with “I remember seeing her in her crib, before she had SMS, and I just remember that she was a regular baby”.
I was intrigued by his last statement, specifically the “before she had SMS” comment. It gave great insight into how his mind worked and how he is managing to cope with his sister’s disabilities. Of course, in the moment I was speechless and had nothing helpful or insightful to offer him. I just simply said “I know its hard Cole, I am sorry, I don’t know what else to tell you”. Ugh, what an awful response! And with that he went onto his next activity and I took sometime to process what he said.
“Before she had SMS” and “by the time she was 6 it would be different”, just kept replaying my mind. It was then that I realized that Cole, and maybe to some degree all of us, have unconsciously felt that if we just made it to a certain place or achieved a certain goal with Sydney, we would all be fine. And more specifically in Cole’s mind, once Sydney was 6 she would go back to being the typical child he remembered before SMS entered into his and our lives.
The next day Cole and I continued our previous discussion. He was less than enthusiastic since he does not enjoy rehashing his feelings (after all what 9 year old does) but I felt it was vitally important to validate those feelings. I even included Ben (my 10 year old) in the conversation. I shared with the boys that Sydney’s special needs did not magically appear one day and, unfortunately, they will not magically disappear either. I explained to Cole that Sydney has always had SMS (even as a baby) and she will deal with the effects of it for the rest of her life. She will always have delays, always have difficult behaviors, and always be different than the other kids. But, she is and will always be the same Sydney you knew the day she was born, the same Sydney you see today and the same Sydney you will play with tomorrow. I expressed to him that what I think happens to all of us now and again is that we lose our hope. The hope that things will get easier, the hope that tomorrow it will be different, and the hope that Sydney will stop having SMS.
I went onto explain to both my boys, and maybe even to myself, that hope is very important. It is a crucial emotion for moving forward in your life. To lose one’s hope is to lose one’s balance and once the balance is gone you can find that you fall into a very negative and angry place. First, I clarified that no matter how much we hope SMS will never go away. No matter how much we hope, Sydney will always be different and struggle with things that come easy to others, and she will always require a great deal of our patience. However, we should never give up hope that she will be able to manage those behaviors better, learn to play with other children, and will in time grow up a little more. And I also stressed that we should always remain hopeful that the efforts we put into the SMS Research Foundation would someday make a difference in the lives of children like Sydney.
I recently read a quote that stuck with me. It forced me to take a moment and to give it some real thought. Norman Cousins wrote: “Death is not the greatest loss in life. The greatest loss is what dies inside us while we live”.
I have come to realize that the most important thing I can do for myself and for my family is to never allow our hope to die. Because that is truly a loss from which we could never recover.