Tuesday, October 7, 2008

365 days





365 days.  As of last night at 11:55 pm Sophie has been in heaven for 365 days.  For me, it's been 365 days of longing to hold Sophie, to rub her back,  to smell her hair.  I miss her so much, more than I can explain.  At times the pain of having a broken heart is unbearable, but other times I will read a card or a email, or have a conversation where someone tells me how Sophie or our family has changed them for the better, and it makes the pain more tolerable. On one hand, I want her back with me on this Earth, but on the other hand I realize that her being in heaven -already for 365 days - makes me one blessed mother.  I believe that is the best achievement one can hope for their child, and to know that Sophie is there, provides some comfort.

Yesterday was tough, I thought about Sophie every minute.  I had plans of posting last night, and when I had a minute, I knew I was too emotionally spent to write anything.    During the day, I played with Sarah, and during her nap, I exercised and tried and tried to distract myself with housework and organizing.  As hard as I tried to suppress the sadness, there were times throughout the day where the tears would flow.  We received many thoughtful cards and many beautiful bouquets of flowers, and as wonderful as they were, I was reminded again of the days after Sophie's death because that was the last time we had received so many cards and multiple bouquets of flowers.  But likewise I was reminded of the love from our friends and family; and so we say thank you to those of you who sent cards, flowers, or email messages.  Your support continues to provide us comfort and means more than you know. 

My fellow "women of faith" in Cincinnati had a memorial mass for Sophie at IHM at noon on Monday.  It may seem strange, but during that time, Sarah and I were completely consumed playing and before I knew it we had missed lunch.  It must have been their praying that kept my thoughts from being so focused on Sophie during that time.  The picture I've included was sent to me by them; it was where they met to say the rosary at 7:00pm, surrounding  the brick they sponsored on the grounds of IHM.  How beautiful!  Thanks ladies.

A special thank you to the Ekis Family for sending Sarah the adorable webkinz pink pony (which we named Grace) along with the gorgeous bouquet. I smiled watching Sarah playing with it, and she held on tight to it all day and night.  Thank you for thinking of her on a day whose significance she doesn't know, but will come to know in the years ahead.

Another special thank you to my Mom and Kristin who planned a casual candlelit service at Sophie's grave site last night.  Many weeks ago Kristin had asked me how I felt about it, and I wanted to talk to Marc before we planned anything.  Well I dropped the ball, and when the subject was brought up again on Sunday, we made a quick decision to do this because we believed it would be meaningful and helpful for us to be surrounded by our family and friends while we prayed and remembered Sophie.  It was planned last minute, but lovely and touching none the less.  We held candles with rainbow wax catchers and we left rainbow roses at Sophie's grave.  We listened to Sophie's favorite song "Women of Faith." Marc shared some moving memories of Sophie, and others in attendance offered their sentiments as well. To close the "ceremony" while the sun had set, my Mom read a poem and we listened to the song "Somewhere Over the Rainbow."  As we stood there listening, two flocks of geese flew directly over our heads honking loudly.  I, (and we) took it as a sign that Sophie was there with us.  (I would venture to guess that at that moment, maybe one of those women of faith praying the rosary in Cincinnati was asking Sophie to give me a sign that she was there....)

As the days continue to pass, we continue to miss Sophie, and continue to wonder why.  At the same time we continue to be blessed and surrounded by people who care and support us.  And so we do our best to use this support and inspiration to try and make a difference in the world of pediatric brain cancer.  

We currently do not have any major upcoming foundation events, but I want to ask for your support in another way.  I have decided (with the support and encouragement of couple of my loyal friends) to run the Grizzlies House 5K on December 6, 2008.  This event is part of the St. Jude Marathon which takes place on the St. Jude campus in Memphis, TN.  I have never been a runner, so the full or half marathon was way too daunting.  I figured the 5K was an attainable goal, and a way for me to give back to the amazing facility that cared for Sophie after her diagnosis.  I registered for the event and to be a "St. Jude Hero" with the intent of setting up a fundraising web page.  However, when I was told that only 85% of the money raised goes to St. Jude, I decided to go about fundraising using this blog and paper mail communications instead of using the website.  I'm hoping that we can set up a "fundraising update" on Sophie's web page where we can inform our supporters of our efforts.

I'm asking you to consider sponsoring me in my efforts.  All of the money that I raise for this event will go directly to St. Jude.  Any amount that you can send will be appreciated by me, and helpful to the families and kids of St. Jude.  I've tried not to think too much about how I will feel being back in Memphis and at St. Jude.  Obviously the last time I was there, Sophie was with me, she was showing signs of progression and we had received the news that her MRI showed enhancement.  We were making the most of every day we had with Sophie and those days are so clear in my mind.  I know it will surely be an emotional trip, but I also know that God will continue to give me the strength I need to get through the week end with more smiles than tears.  I'm counting on you to give me the financial support that I need to make my effort worthwhile and beneficial to St. Jude

If you feel called to support me, please make checks payable to St. Jude, and send them directly to me so that I can track these efforts.  My address is 31722 Leeward Ct. Avon Lake, OH 44012.  I thank you in advance.

Marc and I were really hoping to have the Smiles For Sophie Forever board of directors in place by now.  It was our hope that we would currently be in a position to provide financial support to families that are batting pediatric brain cancer.  We have funds available, but unfortunately we are still working to create our board.  We will wait to post our "application for help" to Sophie's blog until after our board is formed.  More details will be coming in the very near future.

Although we haven't given any money directly to families yet, we have, in honor of Sophie's 365th day in heaven, made a $5000 donation from the foundation directly to St. Jude - as a way of fulfilling a part of our foundation's mission.  So we thank those of you who have supported us financially making this donation possible.

While I am saying thanks, I want to thank those of you who came to the 2nd Annual Family Fall Festival that was held this past Saturday.  Sophie provided us with another beautiful day and the smiling faces of the kids as they participated in the activities made me feel so proud of the work that the dedicated planning committed did to pull the day together.  It truly was awesome.  I can honestly say that every activity there was something that Sophie would have enjoyed, and that inspires me.

So I thank the girls who worked countless hours planning (you know who you are) =)  and their families for their help.  I also thank Holy Spirit for once again allowing us to use their great facility, the volunteers who helped staff the event, the vendors, the local businesses who donated their goods, the performers, the sponsors, the K of C, the pony owners and preschools for all their help.  I feel as though I am forgetting to mention someone, and once I realize who, I will post again!  The event raised over $4000 for the foundation and we are so grateful.

Reflecting on the past 365 days, I hold tight to the promise that God is with us always.  If you told me 10 years ago that I would have lived through what I have in the past 2 years I wouldn't have believed you.  The day Sophie died, a part of me died too.  I honestly felt like there was no way I could live without her.  But still, here I am still living without her 365 days later.  When I stop to wonder how I am surviving, it is clear to me that it is something I am only capable of because I know and love God and am confident of His plan and of His love.

We thank you for your support and prayers on this first anniversary of Sophie being in the arms of God.  

We pray for you that you may feel the love that we feel in some way or another.  Kiss and hug those little ones in your life, because life goes way too fast, and you never know what tomorrow might bring.

Sophie,

I miss you, I love you.  You are an inspiration to me and you will be with me forever.  Daddy says, "You're awesome, you're the best."  Shine on little star.

xoxo
Mommy





Wednesday, October 1, 2008

Please Read and Share with Everyone


Today is October 1st.  And the first day of Breast Cancer Awareness Month.  I was reminded of this on the Today show this morning.  I needed this push to post the following letter that was written by a mother whose son is currently battling the same tumor Sophie was this same time last year.  She wrote it at the end of September and I've been meaning to share it with all of you.

This family lives in Michigan, and the mother, Sandy, who is a member of the DIPG Yahoo Group, received her breast cancer diagnosis just before her son's diagnosis almost a year ago.  I post this because last month was Childhood Cancer Awareness Month, yet I saw no national coverage.  It is so disheartening because right now childhood cancer is grossly underfunded when compared to other types of cancer.  We need to increase funding, and equally important, increase the awareness of childhood cancer.

You can read her letter at www.justonemoreday.org
It is on the home page, just under the gold ribbon.  (I tried and tired to paste this directly into the blog, but I haven't had success.)  Please take the time to go to this site and read her moving story.

I encourage you to share this with anyone and everyone you know.  Childhood cancer stinks. There is nothing worse.  I wouldn't wish this on anybody and I can only hope that one day our children will have more hope for a cure.  Especially children with Sophie's diagnosis, where the current survival rate is less than 1%.

On a happier note, our Family Fall Festival will be held this Saturday at Holy Spirit Church in Avon Lake from 11-4.  The planning committee has been working very hard to plan this day.  There are so many cool activities planned, and the minimum donation is only $10 per child.  There will be pony rides, multiple bounce houses, performances, a hay climb, loads of crafts, face painting, hair glitter, cookie decorating, food, drinks and bake goods for sale, and even vendors selling their goods.  Of course we will also have the Smiles For Sophie Forever items available for purchase so you can help us raise awareness about pediatric brain cancer.

The weather is supposed to be "fall perfect".  We would love for you to bring your kids out to join us for a fun filled day.  Last year, this was Sophie's last real "fun" outing, and I remember how much we could tell she loved it...even though she could no longer talk or smile.  I hope you take this opportunity to make some happy memories with the little ones in your life.  You never know what tomorrow brings so make the most of the opportunities you are given.

God Bless you all.