Today’s word is heartache.
My question is this: why don’t I forget?
I have read so many blog posts lately in which the authors refer to the fact that their lives are typical and ordinary, so much so that they often forget that their little one has a diagnosis of Down syndrome. Perhaps in the past I have even been the author of a similar post, or subscribed to a similar vein of thought. These days, however, I absolutely do not feel that way. Which begs the question, why don’t I forget?
Don’t get me wrong. I love Jake so dearly. I cherish him, I admire him for the amazing little person that he is. I parent him similarly to my other children, and when I look at him, I don’t see his diagnosis, I see Jake. Period. Full stop.
I don’t see him through the lens of his diagnosis. I also don’t forget that he has one however.
Maybe it’s just because Cole is catching up to Jake, and beginning to surpass him in many ways. Maybe because of this I am more aware of the things that are different between them. Maybe I am just sleep deprived and it is beginning to catch up to me and taint my perception. In this stage of Jake’s development, however, I feel that the diagnosis of Down syndrome truly does color everything. Down syndrome is never far from my mind. I don’t forget.
And I am tired. Not physically, although I am tired physically as well. I’m tired emotionally. I’m tired psychologically. I am just tired.
Today I had a “chronic grief” moment ~ I went into the kitchen to pour myself another cup of coffee, and Jake took the opportunity to dump his food all over the floor. Again. For the zillionth time. And I cried. I went into my room, lay my head down on my pillow in defeat, and let the tears flow.
I wasn’t crying for the spilled food. That was just the proverbial icing on the cake. I was crying because I’m tired. I was crying because this is sometimes hard. I was crying because I feel I’m failing him. I was crying because there are so many issues, health-wise, behavior-wise, and other that I don’t know how to navigate very well. I was crying because in this stage of life, I find it hard to forget.
Thank goodness Jake is not defined by what I can’t forget, but by so much more:)