Time for a little truth-telling. Some "brutal" honesty, as some may say. I know that the humorous blogs are more fun. I know that making fun of life is more entertaining than what I've been writing lately. But, I write what I feel. It's therapeutic for me to see my feelings written down. And that therapy goes both ways. Unfortunately, lately I've had more of those downer moments than I have good ones.
The truth is, this is really hard. Living life afraid all of the time is exhausting. I've always had an anxiety issue, but now it seems that the anxiety is warranted. Before, all of my "what if" situations seemed crazy and unrealistic. Now, my anxiety is reality. We go to bed every night wondering what the next few hours may bring. Neither of us plan ahead anymore, and that alone is a huge change for us. We think about things that we'd like to accomplish the next day, but also know that we could be leaving for the hospital in the middle of the night without so much as a warning. In fact, I've made a list of things to put together for an overnight bag in case I have to call someone to bring our supplies to us. I keep it in my son's room. I've gotten into the habit of showering at night and keeping a change of clothes next to my bed so that if I have to leave on a moment's notice, I can go that much faster.
The hardest part is the unknown. We have no official diagnosis. We have no actual path to follow. Will this be something we look back on as some long nightmare? Will we still be having this same conversation in 20 years? Is 20 years something we can even hope for at this point? Who knows? I know that other people struggle with so much more. I know that others have more hardship than we do. I know how lucky we are to have support and love around us. But, that doesn't change the pain and frustration of the day to day. It doesn't make this easy. I know that we are supposed to always smile and be grateful for what we have, and to remember that tomorrow is a new day with new possibilities. But, if we're being honest, that isn't reality. Do we have a new appreciation for life and the blessings we've experienced? Absolutely. In fact, it's one of the things for which I am the most grateful. I have a passion for life that I never knew was possible. I appreciate more in one day than I did in a year's time before all of this happened. And, I will certainly write about those things. I will cherish those things and even brag about them from time to time. However, I will not forget to share the hurt. I will not avoid talking about the pain because it's too hard. I don't believe in only highlighting the pretty things. I will not be fake. I will not hide my fear and sadness. They are part of this, too.
My husband and I have gotten stronger, that is certain. But, our strength has come out of necessity. It has come because while one of us is beaten and weeping in the corner, the other is standing and taking the wheel. We do this together, because it's the only way we can survive. We feel defeated over and over again on a daily basis. We revel in the good moments, and feel the sting of the not so great ones. We are lifted and dropped, lifted and dropped, lifted and dropped. No matter what we do, the outcome is going to be what it's going to be. We can't "work harder" or "try more". Helplessness is not something to be dealt with lightly. It's one thing to say that you would die for your child. It's quite another to know that you would actually do it.
I want to stop being angry all the time. I want to stop wondering why we are going through this and others aren't. And that's the ugly truth of it all. I am mad because I feel so alone in this sometimes. All of the support in the world isn't going to make someone else understand the life we live:
-You know that time at the end of the day when the kids are in bed and you and your spouse just get to talk to one another? It doesn't matter what it's about as long as it's just the two of you. I want that back. Instead, we fall into bed nearly comatose and without even a word.
-I remember that time, when babies are discovering things and they point to everything around them and want you to see what they've discovered. I remember being fed up with that, and gladly giving the job of explaining every object in the surrounding area to someone else for awhile. I want to be bothered again.
-Have you ever noticed that most toddlers have one thing in common? Skinned knees. I know chasing a toddler can be annoying and time consuming, but all I can think about right now is how incredible it would feel to see my son take steps on his own. I would give nearly anything for my baby to have skinned knees. His knees are perfectly intact. No scratches from running too fast and falling. No bruises from climbing into things that he shouldn't. I want to kiss boo boos and fix things with bandaids. I want to make it "all better" with just a hug.
I feel loved. I feel grateful. I feel happy. I feel excited. But I also feel pain. I feel helpless. I feel despair. I feel loss. All of these things come with the territory. I know that, and I'm certainly willing to admit to all of the above. But, if I could, in what may be a moment of weakness, can I just ask for one skinned knee?
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