Silas was diagnosed with Spastic Quadriplegia Cerebral Palsy when he was around 7 months old.
The visit went like this.
We entered the room, sat down and were given his diagnosis. The next thing that came out of the neurologists mouth was:
"The divorce rates in families with special needs children are really high..."
Really? Yes...really.
Well, we told him thank you but we weren't going to be a part of that statistic.
Not without work though...it's damn hard. And really, he's right. The divorce rates are high, because this life is really freaking hard. But please, be more sensitive to the fact that you just gave a life changing diagnosis to our family, can't that little speech wait until the next visit?
Anyway...I'm focusing on this tonight because today has me thinking how lucky Matt and I are for making it this far. Because during times like right now, where you just pass each other by, exchange details about your child, relieve each other from shifts in the hospital, and go hours without talking because you want any excuse not to have to replay the "shift" you've just had and the pain you've had to see your child endure just to let the other person know how it's going...
When you live a life like ours you don't get many chances to make time for each other...you get to trade off shifts, you get to sit in silence not knowing what to talk about because you can't stop your mind from running to think about anything but the pain your child is in. You get to tell each other how you are sorry for being so distant and disconnected but that you love them and hope they can remember that through everything thats going on.
Matt and I didn't get a honeymoon. We don't get to vacation. We don't get to spend much time together and definitely don't get to spend much time together as the three of us because one of us is usually needing a break. We got the time before the brain injury. And the time after has been forever changed. We mourn the loss of what our family would have looked like. We mourn the loss of making memories together that don't involve pain and stress, and tears and hardship. How are you supposed to remain strong together in this life? I'll tell you it's hard and I don't have the answer because were simply trying to just survive this right now. But I guess I just feel lucky were still in this together.
Tonight my heart just hurts for my family. I want to acknowledge how hard this is. How lonely it feels. And how painful it can be.
I know we will get through it, because we always do, but i'm just hurting right now and I needed to write about it. Just for one night I wish Matt and I could enjoy what we used to have...
I want to thank my family and friends for letting us have time together, and helping us try to be able to enjoy each other, even if it's just to sit down to a dinner and ask the other person "when do you think this will get easier?" "what do you think is wrong this time?" "why did this happen to us?" "what did the doctor say?" or to even just sit in silence with each other.
I hope we get to a point where we can someday fully experience a glimpse of what we thought our family would have looked like, what our marriage would have been. But until then our life is what we have and we'll make the best of it, and remain strong together.
Brain injury has taken a lot from us, but it will not break us apart.
The visit went like this.
We entered the room, sat down and were given his diagnosis. The next thing that came out of the neurologists mouth was:
"The divorce rates in families with special needs children are really high..."
Really? Yes...really.
Well, we told him thank you but we weren't going to be a part of that statistic.
Not without work though...it's damn hard. And really, he's right. The divorce rates are high, because this life is really freaking hard. But please, be more sensitive to the fact that you just gave a life changing diagnosis to our family, can't that little speech wait until the next visit?
Anyway...I'm focusing on this tonight because today has me thinking how lucky Matt and I are for making it this far. Because during times like right now, where you just pass each other by, exchange details about your child, relieve each other from shifts in the hospital, and go hours without talking because you want any excuse not to have to replay the "shift" you've just had and the pain you've had to see your child endure just to let the other person know how it's going...
When you live a life like ours you don't get many chances to make time for each other...you get to trade off shifts, you get to sit in silence not knowing what to talk about because you can't stop your mind from running to think about anything but the pain your child is in. You get to tell each other how you are sorry for being so distant and disconnected but that you love them and hope they can remember that through everything thats going on.
Matt and I didn't get a honeymoon. We don't get to vacation. We don't get to spend much time together and definitely don't get to spend much time together as the three of us because one of us is usually needing a break. We got the time before the brain injury. And the time after has been forever changed. We mourn the loss of what our family would have looked like. We mourn the loss of making memories together that don't involve pain and stress, and tears and hardship. How are you supposed to remain strong together in this life? I'll tell you it's hard and I don't have the answer because were simply trying to just survive this right now. But I guess I just feel lucky were still in this together.
Tonight my heart just hurts for my family. I want to acknowledge how hard this is. How lonely it feels. And how painful it can be.
I know we will get through it, because we always do, but i'm just hurting right now and I needed to write about it. Just for one night I wish Matt and I could enjoy what we used to have...
I want to thank my family and friends for letting us have time together, and helping us try to be able to enjoy each other, even if it's just to sit down to a dinner and ask the other person "when do you think this will get easier?" "what do you think is wrong this time?" "why did this happen to us?" "what did the doctor say?" or to even just sit in silence with each other.
I hope we get to a point where we can someday fully experience a glimpse of what we thought our family would have looked like, what our marriage would have been. But until then our life is what we have and we'll make the best of it, and remain strong together.
Brain injury has taken a lot from us, but it will not break us apart.
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