5 Months Without Sophie

For those of you who didn't get to attend, I thought the Sunflower Soiree for the PFMF was pretty awesome...and I can't wait for next year's!  In addition to raising money which is so important for funding research and finding a cure, I think the event raised something which is equally important.  And that is awareness.  My hope is that everyone who attended the fundraiser and everyone who knows of Sophie and Maria and their stories, will tell at least one person what a gray ribbon means, and how underfunded pediatric brain cancer research is. Thank you to those of you that came to support us as well as this very important cause.

While we were at the soiree, we had the honor of meeting yet another family traveling the same road we are.  Tamara and Brian Ekis lost their beautiful little Grace to DIPG this past Valentine's Day.   I asked Tamara for permission to copy her explanation of how this illness makes a parent feel.  I related so well to her description; she said this about Grace's journey to heaven. "For almost 14 months we felt as though we wanted to wake up from a nightmare.  Now it is like her life was but a beautiful dream that we cannot get back to..."  I am amazed at how she described to a tee what I feel every day.  The only difference for us is that our nightmare lasted 7 and 1/2 months...I don't know if that is good or bad.

Even though I've had over a year to process Sophie's diagnosis and prognosis, it still shocks me when I think about it.  The fact that the doctors at St. Jude, this great facility known for breakthrough discoveries in cancer research, told us there was nothing they could do for us is shocking.  As a parent, we come to expect that taking our child to a medical professional will make her better or cure her.  Unfortunately for us, there was no cure, and nothing the doctors could do.   I will never forget the feelings of despair when we were given the prognosis and the overwhelming feelings of anxiety and responsibility as we realized that we had to try and find our own cure, all while taking care of Sophie.  These feelings of helplessness are something that I really hope another family will not have to feel.  My hope is that by raising awareness and money, someday we will be able to say that we have accomplished this goal.

Two weeks ago, we had a big snowfall, so I bundled Sarah up and took her out for a walk around the block in the sled.  As we got to the other side of the block my mind began to wander and I started thinking about Sophie and how throughout her last months we would put her in the stroller and take her around the block.  She never really wanted to go, but we always thought that the sunshine was good for her.  I remember how she would reach her hand back to hold mine as I pushed her.  She really didn't want anyone else to push her, and this was her way of making sure she got her way.  During September, she could no longer support her body, or turn her head around.  Somedays I feel bad that I took her for these walks because she really was way more content snuggled up in bed or on the couch.  As I pulled Sarah in the sled, I was having one of those moments of guilt, so I started telling Sophie again, that I loved her, and that I was sorry.  As we approached the corner, I saw a truck turning toward us.  As I looked at the truck, I could see that there was a rainbow on the side of the truck and it said something like "...Rainbow Rentals" and this truck was pulling a trailer of 2 porta potties.  I smiled because I knew Sophie was with me in that moment just as I was thinking of her.  I had seen this truck once before...on the way to the cemetery for Marc's Grandpa's funeral.  Then  I was thinking of Sophie as we passed Rainbow Babies and Children's Hospital - where I hadn't been since my last clinic appointment with Sophie in September.  I know she is with me every day giving me more reminders somedays than others.

We went to Michigan last week end for the funeral of Sam Jones.  He was another courageous warrior fighting the DIPG monster.  We met Sam and his parents at St. Jude when we were there for radiation.  At the time, Sam was there for a follow up MRI and was doing so well. Another reason why I hate this tumor...he was doing so well, and then the tumor came back with a vengeance, and now he is gone. 

Marc's parents watched Sarah for us while we went to the funeral, and on Saturday morning Marc's Mom who is a realtor went to show a house.  When she looked up the address, it was 1111.  And while she was showing the house, she went into one of the bedrooms, and on the wall, in large letters, it said, "remember the name...Sophie Elizabeth"  The little girl who lives in the house must share the name of our little Sophie...I don't believe that was a coincidence as Sophie was heavy on our minds as we attended the funeral.  Please pray for Sam and his family as the initial shock wears off and the extreme feelings of loss set in.

Today Sarah and I visited the cemetery.  The snow was very deep, and covering the Easter flag and decorations I had placed at her grave.  The ground was frozen, so I couldn't "fix" anything...I wrote in the snow "I love you Sophie"  and do I ever.  We miss you Sophie girl.  Sometimes 5 months feels like 5 minutes and other times it feels like 5 years...

Thank you to those of you who continue to show us your support, and for those of you who have already purchased the magnets.  My sister is going to be busy shipping them, but that is a good thing.  I can't really put into words just how meaningful your support is.  God bless you.