I feel like there is no concept of time anymore. My days consist of the ebb and flow of nurses, Nathan sleeping during the day, keeping Oliver to a dull roar, and feeding Noah. The hours pass so slowly yet how can it already be the middle of August? Didn't we just celebrate Noah's birthday?
I feel like I am constantly trying to stay afloat. Trying to keep my head above the ever-rising waters. I feel like I am just surviving. Doing whatever I need to do to make it through to the next day. Keeping Oliver mildly satisfied with cartoons or the occasional outing. Keeping Noah healthy. Keeping food on the table for my family. Keeping money in the bank account. It is all overwhelming. And this tidal wave of things to-do is threatening to take me under at any moment if I let my guard down.
I feel like we are waiting for a miracle. For Noah to miraculously get better and get his trach taken out. I feel like there is progress, but it is so painfully slow that you may miss it if you aren't paying attention. The doctors certainly don't say much when it comes to the process of decannulation. I know it has only been a little over a year but it feels like it's been too long. This is taking too long. We need to do something now.
I feel like I don't understand why Noah has this disease. Scientifically, I get it. He has a point mutation on the PLP1 gene which causes Pelizaeus-Merzbacher Disease. But in my heart I don't know why. I don't suppose I will ever know in this lifetime. But I wish I could be at peace with it. I wish I didn't have to fight back tears every time I think about it too much. I wish I could write about it with poise and grace and faith instead of sitting here with tears streaming down my face in sadness and in anger.
I feel like we are stuck. We are at the edge of the cliff with no way to get to the ever-so-wonderful "other side. The other side where things are better. The side where it is easier. The side where I can make sense of this horrible disease and what it has done to my child, my family. The side where I can take Noah out in public and be okay with people staring.
I like to think that we will be on the other side someday. And we will look back on this time and it will remind me of my strength and courage to find a way to get there. For now I will wait. Patiently wait to be shown the way. But maybe I'll pick up a book or two on "How To Build A Bridge" just to help us along ;)
You will get there... To the "other side" one day. It is a lot to take in, a life changing event... Even more so then the "normal" life changing event that having a kid is. To have a special kid is a roller coaster of emotions and adjustments. Letting go of all of the plans and expectations that you had for them and accepting them and all of their achievements no matter how great or small they may seem to people on the outside. When you feel like the world is closing in on you or you are in a rut take a few mins (and deep breaths) and rejoice in the love you all share and know that one day you will get to that ever so elusive "other side". With that said, remember that the other side, may not be exactly as you envision in in this moment.
ReplyDeleteSending smiles to you. There will be lots of bad days... frustrating days. But, your boys will get you through the bad days with their smiles and their love for you. Dexter has a vision impairment and cerebral palsy. He has an ipad now, too. He has a fireworks app, which has a black screen and coloured fireworks spark up when his fingers run across the screen. There's also a piano app he enjoys... it looks like a piano, but instead of musical notes, it plays burping noises. I found you via Love that Max :)
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