I am tired of hoping.
All I want to do now is to be here and accept that I am here. I have been trying to drill this into my brain and I have been repeating mantras like "this is my life" over and over just so I can get to the point of acceptance. Living in this battle between acceptance and hope is relentless, it has worn me down and I am done.
This is actually a really huge step for me.
I have been fortunate to become phone friends with someone who is an similar situation only her sweet boy is three years older than mine. I want so much to be where she is. I love that she can hear the things I have to say and identify 100% with me but say that is where she WAS. Yes it's still hard, probably really hard but it has become her new normal at long last. I want to stop missing normal. I want to stop feeling jipped and forgotten when people speak in generalities that leave out my son and me.
This last week John Michael's intense spasms that have left me sobbing have taught me to let go of the death grip I had on a fistful of things I was not willing to see happen. Such as the inevitability of seizures, a feeding tube, a wheel chair etc. These are all things that initial doctors gave as a prognosis and I refuted it all. I wasn't in denial I just thought enough aspiration and perspiration and faith could get you where ever you wanted to go and you are allowed to just down right refuse possible outcomes and because of that refusal they won't happen.
Let me put it this way;
Whenever we have a new mom join our CMV Facebook group everyone gives the advice "don't have any expectations, just love them and let them show you who they are going to be."I feel like the truth is had I done that more maybe I wouldn't have been tormented so. That is why I cry at the thought of breastfeeding. Because I tried so hard for so long, with every ounce of hope and belief in miracles I had in me. I had an expectation. And it didn't happen. Just like when he was a few months old I had an expectation that surely when he turned one he would hold up his head. I was desperate for ANY signs of progress. So desperate that the hours and hours he has spent having "tummy time" it felt like a blade to my heart to see him just lay there content to be listening to music but not interested in going anywhere or looking around. I felt so helpless... I couldn't make him lift his head, I couldn't show him the way. But when HEALTH is on the line it teaches you to be grateful. Since John Michael has had these spasms and I realize their seriousness, that they could dammage his brain more or cause regression, I have been able to lay him down on the floor and just be happy that he is happy and not hurting or scared. I can't fix him. It hurts to say it, but I can't. I don't have many ideas left on why this happened or what I am supposed to do but I am tired of trying to change it.
I feel like I can breathe a little better. Hopefully this is a good direction for me and not just a more cynical one...