Sunday, September 6, 2015

Surprised by Death

At this point in our journey I really shouldn't be surprised by death. But I am, every-single-time. When my friend Katie and I first discussed how to organize the She's a Fighter marathon running team we talked about each of us running for a specific child to make their Christmas dreams come true. I reached out to our friends and asked for referrals to parents and children who really needed a pick up, especially at Christmas. We found six little girls and moved forward with the project.

Two days ago I found out that Natalie died. She was on hospice, I should have seen it coming. I should have expected her to go home to God. Was I shocked? Yes. Maybe the chemo mom in me needs to believe that they will pull through, that this is just a bump in the road and things will turn around. Once I lose hope I lose everything.

I was in line at the drive thru Starbucks on my way to a co-op homeschool class with the kids. I
checked my facebook messages to make sure that the other Mama did not message me needing anything. Instead I found a message from Jenna, Natalie passed this morning. I sat in my car with tears running down my face, the girls in the backseat asking me what was wrong and why I was crying. I couldn't even bring myself to say it. That day was Emma's No More Chemo party. We were celebrating a huge milestone for her. One year of weekly chemo down and a three month break, we had happiness for the first time in a long time. I decided not to tell her until the next day.

I pulled up to the window and reached for my coffee with red puffy eyes and a tear stained face, "Are you okay Ma'am?" she asked. "No, I am not okay. But thank you." I knew Emma would take it hard, another friend we prayed for was gone. So much death for a 4 year old to experience. I cried the whole way to class then put on my game face for lessons and the party. The next day I told Emma and we held each other crying then released a balloon to heaven for Natalie.

Chemo might end, you could even win your battle with Cancer. Do you ever win the war? No. Once Cancer finds you life changes. Some of it is good; you live more in the moment, small things that would have created anxiety before are laughed off because you have bigger fish to fry. Somehow you develop a superhuman ability to withstand enormous amounts of pain and sadness and heartbreak. The negatives are too long to list. The tests, the needles, the tears, the bad news, the doctors who do not give a damn, the doctors that care too much, the waiting rooms, the unplanned ER visits, the inpatient stays, the hospital bag in the back of your car, the toll it takes on your own health, the damage you do to your other children from absence, the long list of medications you have to write every time you get a form for your child. That ends and you think life will begin again. Instead you are faced with nightmares, flashbacks, and fear of the future. A future with a child who is blind, needs extreme monitoring for the rest of her life, a child who will never know motherhood from her womb, will never know a life outside the glass walls for more than three months at a time, a life always living in fear that it could return to the hospital.

You might leave the hospital but the stories follow you home. Friends that are still stuck in that world. Children who die. Parents who struggle to keep their mental sanity at a time when most people would ask to be committed to the looney bin. You are at home but somehow you still "live" at the hospital.

I know this is a long and rambling post, that I do not have a clear point, that you may be somewhat confused why I am sharing this information. I share because I want the world to know that THIS is our life. This is how we live. It could get better, it could change. We need a cure, we need better medicine, we need more specialists with options better than chemo. We need more funding. What we need is people like you to care. Today it is our war but tomorrow you could join us. Share on your social media, be mad that Natalie passed away so soon, ask for more funding. #showyourgold

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