Tuesday, May 28, 2013

Changes

I haven't updated recently because I remember when we first began Madeleine's cancer Journey we were scanning the web looking for insight to this disease- anything that would give us hope that she could win her battle. And as you can imagine, there were very few happy sites- because all of these parents started out (for the most part) with hope and faith.... and all their children died. The blogs became a very somber place and completely overwhelming for us because we were trying to maintain our faith and focus that she would win, she could beat this, she has to be okay because we are faithful... and the sorrow I read about from these grieving parents would overtake me like an undercurrent wave in the ocean. I couldn't handle it. All I wanted was somewhere in the world to find another baby who had won their battle against ATRT and was now thriving in pre-school, elementary school, first communion, ANYTHING. 
So back to our updates:: I was doing GREAT for a while. We had gone to a grief camp in March, and while the weekend was completely exhausting, I left feeling lighter on my toes, as though God had taken some of this burden from me and I could actually begin to feel ok, dare I say pretty good, and I could begin to help other grieving mothers. In April- on April 17th exactly- a dear, sweet little girl close to my heart went home to heaven.
And I fell apart.
My tears were so strong and forceful I couldn't speak that morning; I quite literally couldn't get out of bed that day. I was reliving the every emotion and every moment of the day and night that Madeleine died. My own anguish over my daughter's death to such an awful disease led me to believe I understood the very thoughts of Sarah's mother. And now having been part of mothers' support groups, I know that I did that day, understand and was feeling everything she was going to feel, because she was still in shock. The shock phase of grieving is a lot like driving in thick fog- you can stay the course without much distraction but there is no real thought or feeling taking place because it just doesn't seem real.
So the 17th was a dreadful day. And 10 days later we got into our best dressed and stepped out, alone but as a unit, to celebrate and honor Madeleine at the NEGU Gala. The organization blessed us by highlighting our baby and our family as a means to demonstrate how a relationship is begun with a family through the first gift of a JoyJar. Her pictures, her big beautiful smile, flashed across a big screen and it took my breath away. It turned out to be a lovely evening, celebrating the children fighting and succeeding, and raising all this money to help more and more kids fighting for their lives. For us it was also very emotional and connecting to be with a family so publicly going through our same trials in bereavement, yet so privately holding their real daily anguish like us. We immediately felt like we had known them for years, felt like they were family, and I hope our time together brought them as much comfort as it did for Daddy and I.
Shortly after that, many other things took place in our life that actually helped distract us from the overwhelming sadness we had been feeling. We went from our family of four, back to three, and in some ways, back to four, since my 6yo nephew has been staying with us for the summer. Talk about a completely different household for all of us...
There is truly only ONE thing that is as it was September 30, 2011: our home. Other than that, NOTHING is the same. We don't recognize our old life. We are different people to the very core, we don't feel the same, we don't think the same. Even Annalise. We have all lost greatly.
Isaiah 61:3 ...to bestow on them a crown of beauty instead of ashes, the oil of joy instead of mourning, and a garment of praise instead of despair....
And as a result, how to do you settle back into an old life? It cannot be done. So eventually I began to look for what I thought would be cool [distracting] and convenient [close] to go back to work. I fell in love with a job at NFL network. I applied for some upper management position in the glamorous 90210. But nothing was coming through. Hmmm.... why not? I'm a very qualified individual. And then it occurred to me: I am not only qualified, but usually passionate. And with my heart ripped out of my body and shattered into a million pieces, there wasn't much passion to be had. I have always taken great pride in my career, choosing to focus there instead of my personal life for many years until I started a family. And I realized... I have passion. It's for cancer and grieving families. Children damaged but alive after a treacherous battle to claim their lives, and they prevailed- what inspiration, what courage! I want to help those children, those families, those organizations who offer support and genuine concern for these families. Because more than likely the people running these organizations started them out of the ashes of their own hearts.
I have a dear, sweet friend, a cancer mom whose daughter is recovering beautifully from a tumor in her leg, who wants to start a foundation because she is overwhelmed at the support she received during their family's time in the trenches of cancer treatment. God bless her and her tender heart. What I fail to mention is that she has not one, but three daughters. Her little surviving warrior is a twin. She's got her hands full with lots of flowing blonde hair and Barbies. And to her I say, you have done your due diligence... let me carry that burden for you. What I wouldn't give to be raising my daughters with their sister.... Let me give back for the both of us. Devote yourself to raising your daughters. And all the love and passion and grief I have for my Madeleine, Sunshine for all of us who love her, let me pour all of that back into these organizations with the talents God has given me. I love you Talli!!!
So that's what I'm doing. I'm planning to use every resource I have to bring more money to these organizations from all of the rich people, foundations, and grants that will fund programs and services for these children and families. Wish me luck.