Heartbreaks to Reality Checks...

This has been one of those weird weeks...maybe it's the heat that has my brain flying all over the place. Every day I look at my sweet boy and fight the conflicting feelings of joy and sorrow.  Part of me feels selfish...I have nothing to complain about...my son is alive, but I am in mourning over the boy he was, the boy he is now, what he has lost. Each day is a struggle. He can't swallow, can barely move his hands or turn his head. I try not to focus on what he can't do but rather what he can do or has learned to do since he came home... He can smile (he learned again), he can put his lips together for a kiss. He is happy...

The last thirteen years have been a roller coaster of emotions. It has been a series of times where I have mourned accomplishments he would never make, trying to keep in mind that his mere survival was a miracle in itself. People kept reminding me how lucky we were whether through direct comments or innuendos...reminders that I should be grateful, not make others feel bad.

In many areas of my life I am the positive one...the one that looks at the world from a place where all things will be okay. Even through all the ups and downs, I have always stood in a place where Javad will come through all of this okay on the other end but sometimes, even I struggle. This is a struggle that I usually carry alone, one that is hard to explain to others. I try not to speak of it because I will seem like a complainers or like I am trying to bring attention to myself, which is far from what I would ever do...the fact that I am writing this at all even makes me a bit nervous and we'll see if I actually post it. It is like the dark secret that I carry...my life is what it is...I am not sorry, I love the littlest beyond what I could even imagine possible, but there are days, like today, when my heart feels broken inside my chest. I don't want to talk about it to anyone, but if I don't purge these feelings from my brain they begin to take over and eat away at my ability to be positive.

I imagine that this is the way the life is...a cycle of mourning to celebration. It is strange in many ways, because it really isn't that different than parenting a healthy child...except the valleys are lower and longer, the peaks more rounded. The celebrations of the small things are bigger because you never know when your story might end. On March 16, our story came close to it's final chapter...I am well aware of the line that we narrowly missed. I think about the smallest of details that made the difference for us...simply being directly taken to the hospital of our choice saved us precious hours that, I believe, made the crucial difference.

Today is one of those days where I am struggling. My heart hurts, I want to climb to the highest peak and scream and cry until there are no more tears. I kissed my boy a lot and said a thankful prayer that I still have the ability to do so, but then felt angry that he can't do the things he could do such a short time ago. The feelings whirl around inside and I am unsure what to do with them. I try not to give them too much play time in my head...more time gives them power and I don't have the energy, frankly, to give them power.

So, for today, I let the feelings swirl...tomorrow, I try to lift my head and move forward. It's the only direction I can move, but first, I might have to pick myself up off the floor.