**I wrote this post a few months ago. It's probably my most vulnerable post to date. It's taken me quite a while to hit the publish button because I don't want this blog to become a place where all I do is complain. January was a really rough month for me and putting my thoughts into words like this has really become a great way for me to cope and process my feelings.
Things have been tough lately. Maybe it’s the holidays. Maybe it’s the gloomy winter weather. Maybe it’s the state of the world. But whatever it is, it’s left me teetering on the edge of sanity.
I’ve never been a crier, at least not in public. I‘m usually an expert at hiding my emotions and not letting anybody see me upset. But lately I feel myself tearing up at everything. I feel like I’m constantly on the verge of tears, just waiting for that one thing that causes the flood gates to open.
I feel like our world is just standing still. And I’m just going through the motions of life right now. Just doing whatever it takes to get to the next day, the next hour, the next minute.
I just wish things were different. I wish I would’ve pushed harder for the doctors to help Cooper sooner. I wish I would’ve been more concerned about his lack of muscle tone. I wish I would’ve made a bigger deal about his regression. I wish Ohio would’ve started newborn screening for SMA just a couple months earlier. I wish Cooper would’ve been born just a couple months later. I just wish we could go back in time and change things.
As Coop gets older and becomes more and more aware of his differences, I find myself thinking about how things should be. I should be watching my two year old run around the house, chasing the dogs and cats. I should be yelling at him to stop jumping on the couch. I should be woken up by his little hands grabbing my face after he's climbed out of his bed for the millionth time, not by him crying and screaming my name because he's awake but has no way of getting to me or his dad. I should be thinking about when I'll be signing him up for t-ball and how much fun it will be to watch him swing and miss. I should be chasing him around the race track and the campground. I should be excited to teach him to ride a bike. I should be raising a typical toddler.
But I'm not. Instead I'm cheering my two year old on when he lifts his head off the floor during tummy time. I'm praising him every single time he's able to lift a leg on his own. I'm constantly reminding him how strong he is when he lifts a small object higher than his chest. I'm moving him from one toy to the next when he gets bored. I'm fighting with him about wearing his AFOs and doing his stretches and working on therapy at home. I'm listening for the slightest changes in his breathing because if it changes then we need to start more breathing treatments and increase our cough assist usage to prevent pneumonia. I'm worrying about how often he's pooping and whether or not he's getting enough Miralax so pooping isn't too strenuous for him. I'm getting frustrated with him for not sleeping through the night and then remembering that if I couldn't reposition myself while sleeping, I probably wouldn't sleep all night either. I'm watching all the other kids running around and playing with each other while my little guy is stuck sitting on the floor, playing by himself.
Even with all of these things constantly running through my head, I still couldn't pinpoint why exactly I've been struggling so much lately. But then, in the middle of a breakdown the other night, I realized what it is. I'm worried we're going to get left behind. I'm worried we won't be able to keep up with everybody else's lives. Everybody in our life gets to move on and do whatever they want and we're just stuck in this endless cycle of what if's and maybes and hopefully someday. I don't mean I'm worried about people forgetting about us or giving up on us. We have an amazing support system and I know they'll always be there for us. I just know that our lives are always going to revolve around SMA, the good and the bad. Nobody else's life will. We'll always have to consider SMA and the hold it has put on our family before doing just about anything. Because of that, I'm worried our lives will stay where they're at right now, at this moment, but all of our family and friends will continue to grow and move and flourish. And we'll still be here, in the trenches, hoping for someday.
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