A few days ago I was paired up with another mother through my local Down Syndrome support group who shares this journey of raising a child with Down Syndrome. This program allows you to have someone who can relate to my small victories, large frustrations and the sometime sadness that can creep up when you least expect it. When I received Avery’s diagnosis just a short 14 months ago, I was paired up with another mother but she seemed to lead a very busy life and we never really connected. Needless to say, my feelings seem to be surfacing again lately and I am craving a friend in this new community of mine. As new challenges arise, I am starting to feel like the idea of “coming to term’s” with his diagnosis is not as straightforward as I once thought.
I have been seeing photos of kids Avery’s age, or even younger, using their fine motor skills and cognitive abilities to do simple tasks and as time goes by I grow more anxious to see Avery do the same. I am watching the list of things he can’t do grow longer and longer and it’s becoming overwhelming. Desperation is setting in and I am feeling helpless. Just this week I looked at his speech therapist and said, “I need you to tell me how delayed he is. I need you to tell me if I should do more therapy with him and what we can do get him as caught up with his peers as possible before he starts Preschool.”
When I was asking her this, I felt my tears start to well up (although they did not surface – as cutting myself off from crying is a skill I have perfected) and felt slightly out of control with my feelings. Remaining positive and keeping my feelings under control has been my first priority since we received his diagnosis. So much so that maybe I have not taken the time to explore the other feelings I am holding.
As I have mentioned in prior posts, when Avery was a baby it was hard for his delays to be noticeable. Now that he is a toddler and those around me with other kids his age and younger are progressing at a typical rate, I am feeling the sting of comparison beginning to rear its ugly head at every turn. I think in order for me to not allow the constant comparing to steal my joy, I need to allow myself to acknowledge that at this moment, the whole thing really sucks. I love my son with my whole being and am grateful every day for every single thing he does but I need to tell myself it’s ok to also have other feelings – that it’s okay to be upset and angry! There, I said it!
So, maybe for me, this whole idea of “coming to terms” with a disability or diagnosis does not have to only mean being “at peace” about it but maybe simply learning to be ok with whatever new obstacle we have in front of us at that very moment. It is also gaining the wisdom of accepting the fact that once we have conquered one set of challenges, a whole new set is right around the corner. As life changes so will my feelings and if it’s not the daunting notion of him entering preschool, it will be something else. I have always been so scared of sadness and pain. I need to allow myself to accept how I am feeling in the present, and then know when it’s time to walk away from those feelings and move on.
But one thing I can come to terms with is how incredibly happy this little boy makes me on a daily basis.