School Days

I have a new school morning routine since Lucy died and Max started at his summer school. I usually pick up something I forgot at HEB. Then, I get in the car, turn on Rob Thomas’s “Little Wonders” and just cry. That song serves as a very effective emotional trigger these days. It can be very hard for me to tap into my feelings about Lucy’s death, but that song pretty much always does it.

In a weird way, I feel like I spend more time focused on Lucy during school mornings now than I did when she was alive. I feel so guilty about that. When she was alive, other people would say that Max’s school time was a great opportunity for me to spend time with her. But I still wanted his school mornings to be for me. I wanted to spend time with her and I always enjoyed it. But I still wanted it to be time for me. I worried while she was here that I was focusing on myself too much and not taking the chance to have time with her. I kept trying to do better and I did sometimes. But I still feel so guilty about those school mornings now that she’s gone.

Basically, Max’s school mornings are a chance for me to watch TV shows that neither my husband nor son like. I would usually watch while Lucy napped, but sometimes, especially when I first discovered “Revenge” on Hulu, she watched with me. I attempted to involve her. I told her about the show. I asked her what she thought was going to happen. I finally gave up on “Revenge” completely, because it consumed my attention too much when she was around. I restricted my TV time to only during naps.

But I was still tired. And distracted. And busy. And I just feel like I never did enough. Especially considering that she was sick. We knew there was a very good chance we could lose her at some point. Even that wasn’t enough to overcome fatigue and longing for “me time” sometimes.

Having a sick child brings a whole new level of guilt. I’ve watched enough Lifetime and Hallmark movies to know how it’s supposed to go. You’re supposed to be a crusader for your child. Do research, travel miles for the best doctors, fight insurance companies for treatments, fight to get into clinical trials. We did do some research. We considered taking Lucy to Cincinnati where the best doctors for pediatric dilated cardiomyopathy are. We constantly had to balance between quality of life and concerns for her future. Not to mention concerns for Max. And most of the promising treatments we heard about just wouldn’t work for Lucy for one reason or another.

I know other people who have sick children. I am so in awe of a couple I know who have a daughter with cancer. They have written on their blog about supplements they read about in peer-reviewed studies that can help fight cancer.

Was I supposed to be reading peer-reviewed studies?? The one time I read one, it scared the bejeezus out of me. It listed absolutely terrible five-year mortality rates for kids with DCM. It turned out there were some complicating factors Lucy didn’t have. I decided not to read more for awhile until I had gotten over the initial shock of the diagnosis and we knew more where Lucy’s condition was heading. After the initial diagnosis, I couldn’t look at her bottles of medicine without getting sad and angry. I hated having a pediatric cardiologist in the contacts list on my IPhone. I needed adjustment time.

Plus, I didn’t think it would help her to have a mom who was constantly stressed and sad. I just couldn’t live and give her and Max a good life while worrying she was going to die all the time. Then, the doctor told us she was probably going to get better. And then, she started to get worse out of nowhere. It was happening too fast for us to keep up sometimes.

I was just trying to keep my head above water. But I feel like I was a slacker of a heart mom. Just keeping up with the regular medicines and doctor appointments and therapy appointments alone with regular life and Max swamped me. Plus, I still tried to include “me time” in order to keep my sanity, not to mention “couple time”.

I know all of those things are important. I know I did the best I could “for who I was at any given time.” (Thanks to “7th Heaven” for that quote.) But that is cold comfort now that Lucy is gone.

So, now I cry and write letters to and blog posts about Lucy. I feel like I focus on her more than ever now. And I wish more than anything that I had done that more when she was here.  

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4 Comments

  1. Laurie said,

    June 18, 2013 at 12:28 pm

    Don’t let guilt be the result of not knowing. I was on the floor with Reilly hours before he died. But I also was watching 41 about George HW Bush. So my full attention was not on my dying dog, but neither did I know that he was dying. If I had known I would’ve spent every second comforting him with familiar words and phrases, savoring each moment of time slipping by against my will. But I didn’t. I didn’t know. We can’t blame ourselves for something we don’t know. You would’ve spent every moment with Lucy if you had known. And you would have no guilt whatsoever. You didn’t know but that doesn’t change the fact that you would’ve given your all for your child, because you would. Take comfort in knowing that you did all you could and then some for the circumstances, Sara. Time passing will show you more of the love and less of your perceived faults. The pain may never go away but your guilt will, thankfully.

  2. debi shaw said,

    June 18, 2013 at 1:55 pm

    guilt is part of the grieving process…. Each of us would do things just a bit different if we knew there was no tomorrow……. I agree with Laurie… The pain may never go away, but your guilt will…… 🙂

  3. Jerru said,

    June 18, 2013 at 9:53 pm

    Sara. I enjoy reading these but at the same time i feel the pain that your in.To be honest i think you should write a book too help other parents that are facing what yall have gone threw. Love you sis


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