September 30, 2014

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Consolidation Day 15: The 7 stage of grief

I hesitate to write anything with a sad tone because I’m not looking for sympathy or don’t want anyone to think that we don’t appreciate everything that you have done for us. But this is real life. I have bad days too. And this journey is tough. It’s not rainbows and unicorns on a sunny day. It has storm clouds and rainy days. Hopefully these bad days really will make us cherish the good days all the more. We are grieving. Not grieving the loss of a loved one but the life we have planned for, worked for and expected. This truly is a journey of the worst kind. I shouldn’t complain because its not really about us – it’s about Scarlett. But we are on this journey together as a family. And we are in the midst of the 7 stages of grief.

1. Shock and denial
I think that this stage is how I got through the first month. We didn’t let Scarlett’s diagnosis change anything. We went back to work. We continued to live our days as we previously had. We reluctantly accepted help but thought “it’s nice but not necessary. We will be fine.” It will be six months of chemo, a couple years of meds and check ups and then back to normal. We blissfully went through the month with unabated hope in this sunny fog of denial.

2. Pain and guilt
I spend a lot of time online lately – answering email, updating on Facebook, looking for foundations and inspiring groups – and happened across a study published a few years ago. It was researching the fact the children born to mothers who had gone through IVF had twice the risk of developing leukemia. My stomach dropped and I wanted to throw up. I quickly scrolled past it in the hopes that if I ignored it, it wouldn’t be true. Did my selfish desire to have children of my own cause this wretched disease? Did I poison my own children? I caved a couple of days later and read through a couple of the studies. The older study showed that 0.00005% of children conceived without IVF developed leukemia and 0.00013% of children born to mothers who had had a previous round of IVF developed leukemia. But more recent studies have discounted these numbers. Since the day they were conceived I have tried my hardest to be healthy for them. Yes, I gave in to my caffeine addiction and ate chocolate and deli meat. Does that make me a horrible mom? I nursed Tate until he was 10 months old and the twins until 15 months. I never gave them commercial baby food. I encourage vegetables first. I used cloth diapers (for the most part). I did everything right! Yet, somehow, MY child has leukemia. What could I have done or do differently?

3. Anger and bargaining
I hit this stage the moment that Scarlett’s last bone marrow came back. I was so confident that she would be in the low risk group. I wasn’t disappointed or sad when she wasn’t responding like we thought she would. I was just plain pissed off! I want to stomp my feet and scream and throw things like a child. I want to punish someone. If Scarlett has to go through this awful horrible experience, at least make it a little easier for her.

Which brings us to…
4. Depression, reflection, loneliness
I am at the point now where exhaustion has led to many tears. We can only be strong so long. We are now having to do more than just be there for Scarlett. We need to work, cook, clean the house, pay the bills, take care of all three kids and each other. The bills are coming in now in waves. The appointments are frequent and long. The tears flow easily. I sit at work and cry thinking about how I’m not there with her. My energy level is dwindling. I’m hoping this phase doesn’t last too long because I doesn’t suit my personality. I need to be doing something. I need to be helping others (maybe this is more of a bargaining thing). I need to be doing more to make memories with my kids. I need to be doing more to document this journey for her to look back at some day. I don’t have time to not be doing more.
The sadness fills my day. It lifts my heart to see her smile and hear her laugh. But it also breaks my heart to think that I don’t remember what it looks like when she runs. I can’t imagine her arms without the scars from all of her IV lines. I don’t remember the feel of running my fingers through her hair. Or the smell of her before chemo. I wonder what she would have been like without all of this. Because she will surely be different. Maybe better. Definitely scarred – both inside and out.
I am also grieving the life that we were supposed to have. When we got married I had this “plan” of having our 4 children and dream house, taking family vacations and having movie nights together. Part of me is grieving the loss of the life that we had planned and worked for. Even if everything works out for the best, our lives will still be forever changed because of this experience. We are facing the fact that the life we had planned will never be. We are no longer the innocent naive family that we were 2 months ago.

I am hoping that we will continue to press through these stages of grief because the next step is “the upward turn”. We could really use a lift up any time now!

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