Owning My Pain

I'm not exactly sure what that phrase means, but I have to figure it out. How to "lean into the suck" as Sheryl Sandberg says in a podcast that was recommended to me. The pain isn't going away and it likely will never fully subside. I will always have grief for the loss I have experienced. Going through this amount of hurt has forced me to be honest with some feelings that we aren't really supposed to have, or at least not admit to.

Coming home hurts. It's not the way it's supposed to be here. The life I left two months ago before we were readmitted to Children's is not the life I come home to. It's broken here. Last week I was crying when Asher wanted to play in Finn's room. I didn't let him. He couldn't understand why I was so sad. "What happened mommy, are you okay?" he asked me over and over again. In between sobs I tried to explain my tears to my innocent toddler. Mommy misses Finn and that he is supposed to be home so we can all play together.

Embracing pain is so uncomfortable. To say it's okay to not be okay. Lately it's survival for me. Things that used to bring me joy are now filled with guilt. Trivial conversations anger me. I can no longer find happiness for other people because I am so consumed with sadness and fear for my son. I'm told this will go away, that eventually I will find that new "okay" feeling. But, for now I hurt and more than I ever knew I could. When our nurse talks about going to a BBQ with her friends after her shift or how she doesn't have time to mulch her lawn while our yard is overgrown with weeds and it's been two months since my family ate a meal together, it breaks me. When a friend announces their new home purchase or a pregnancy, it kills me. I used to be happy for other's wonderful experiences but now I just feel pain. Loss. Then, after that I feel guilt. Guilty that I resent their perfect lives. That they get to be happy while my son lays waiting for what feels like an eternity, teetering a fine line between life and death. Why did he get chosen to go through this?

I know I shouldn't let it get to me, That I am better than that sad and broken person that is living inside of me but my brain won't let me stuff those feelings any more. So, I've decided to own my pain. To tell people how I feel. It's uncomfortable for them and for me, but if I don't share, how will they know? When someone asks me if I've seen a movie lately or talks about their big plans I have to be honest. It's the only way I will survive. Pretending I am okay isn't working.

I couldn't sleep last night because two members of the ECMO team were getting a little too comfortable around me. Talking about shopping online during their shifts, their plans for after work, or complaining that it was raining on their days off. On numerous occasions I have been told that Finn is the "easy baby" and that they fight over his room because there is nothing to do. I'm not okay with that. I had to remind them that this is not normal for me. And, although this is their every day, this is my once in a lifetime. That while they are making plans to hit up Target after work or sitting on Facebook reading clickbait that my son is still dying in the bed that I haven't left for 16 straight hours and I can't remember the last time I showered or ate food that wasn't from a vending machine.

Perspective. I've gained a lot of it lately. And, whether or not I wanted that lesson Finn was adamant that I get it. As Memorial Day ends and Facebook is littered with cabin photos I think of the families who are grieving a loved one who paid the ultimate sacrifice for our freedom. When I see an email with a sale or a cliche status update about thanking the fallen while raising a beer on the boat I think of all the families who are crying at their child's bedside. Then, I think of the mother who somewhere is tucking in her child tonight. Not knowing that sometime in the near future she will lose her baby. That she will be singing them to sleep for the last time before something bad happens forcing them to make decision that will save my son's life. And that, that is real pain. The kind that not many people have ever experienced. That some other mom somewhere will have to feel a loss and pain greater than mine so that I can come out of this dark place I now reside in.

May 29th, 2017


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