Looking back at the date of my last update, I realize it has been a very long time since I have posted a message. I cannot tell you how many times I have started to write something but have not been able to finish my thoughts. In some instances, what I have to say seems too “every day” to share, while other times it feels as though the perfect words are just not flowing. We are doing okay…we are living every day to the best of our ability. We have learned that this means different things on different days. With that realization, we are able to count our numerous blessings as we continue on our journey without Grace.

There are still days when it seems as though she will come bouncing through the door any second…then there are days that it seems like a lifetime ago that I felt her hand in mine. I still have those moments when I am in disbelief that it was OUR child, it was OUR family, and it was OUR life that this all happened to.

Every day we tell Claire about Grace. She certainly knows Grace’s name, picture and voice. Just the other night as I was putting her to bed, I asked her if she had met Grace in heaven before she came to us. She nodded her head yes. Maybe, you think, she had no idea what I was asking her. Then again, maybe she knew exactly what I was asking…

I find that I think about everything so deeply now…from everyday, ordinary things to “special moment” types of things. This summer, Brian and I attended two weddings. I found myself thinking intently about beginning a lifetime together. What a privilege it was for us to witness two couples begin their journey; the love and joy they exuded was apparent. When the vows were repeated, I thought back on our wedding and how never in our wildest dreams would the “for worse” mean what it does to us today. I prayed for both Ashley & Jimmy and Missy & Jonathan that their “for worse” would never mean what it does to Brian and me…that their journey will be different than ours…

Our work with Reflections Of Grace is moving forward. The foundation is thankful to have been able to provide financial assistance to numerous families this summer. Some have used their family grant to pay the rent or mortgage for a month while they take time off from work to be with their sick child. Some have used the funds to assist with co-pays or travel expenses related to treatment of their child’s brain tumor. Others have used the money in the most unfathomable way – funeral and related costs for their son or daughter. Reflections Of Grace is proud to have given over $70, 000 in grants to 49 families in the past two years. What an amazing statistic! We are humbled and honored to help these families and gracious and thankful to our supporters and volunteers who have made it all possible.

As for Foundation news, we still have a few spots open for the 3rd Annual Golf For Grace on Saturday, September 17. This year the outing will be held at Butler’s Golf Course in Elizabeth Township. If you would like to participate, go to www.reflectionsofgrace.org for details and to register on-line. In addition, we will once again be hosting a fundraiser at Max and Erma’s restaurant in Monroeville. On Wednesday, September 21, 20% of your total lunch or dinner purchase will go directly to Reflections Of Grace. To participate, just present a flyer to your server when ordering. A PDF of the flyer is available to download and print on the Max and Erma’s page of our website at http://www.reflectionsofgrace.org/index.php/max-erma.html. Please remember to bring a flyer with you, as they will not be available at the restaurant. Last, but certainly not least, the date of the 5th Annual Race For Grace is now official. It will be held on Saturday, March 31, 2012, again at Norwin High School in North Huntingdon. Mark your calendars and save the date!

Did you know that September is Childhood Cancer Awareness Month? Do you realize that cancer is the number one killer of children under 15? Thirty six children are diagnosed with cancer every day in the U.S. 1 out of 5 of these children will lose his or her battle with cancer. Of those who do survive, 60% will experience significant, sometimes life threatening, long-term side effects. The average age of a child diagnosed with cancer is just six years old. Forty thousand children undergo treatment for cancer each year. And although the overall survival rate for children’s cancer has increased from 10% to 78% in the last 40 years, a diagnosis of DIPG is still a death sentence for a child. This is why we still have so much work to do! People frequently ask if we are having a Race next year. Although we are, the true “race” is not over -- there is no cure. We will continue that race, that work, that fight…until a cure is found.

So this September, wear a gold ribbon to commemorate Childhood Cancer Awareness month. Tell a stranger the story of a child who is battling or has battled cancer. Take a few minutes to check up on a family who struggles on in the absence of a child. Or leave a message on the website of a child who valiantly fights this monster. Our hearts ache as these kids continue to journey to heaven, most recently the daughters of two families that we have helped through Reflections Of Grace -- Nicole Mackintosh (www.carepages.com/nicolesnotes) and Juliana Silvernail (www.caringbridge.org/visit/julianasilvernail). Another DIPG mom, Maria Reilly, posted an update on her son’s Caringbridge page the other day that so clearly articulates much of how I feel. Liam and his twin brother, Owen, were born two days before Grace in April 2002. The Reilly family continues on, to the best of their ability, despite Liam’s call to heaven on June 22, 2009. Take a minute and visit his page to read Maria’s eloquent message: http://www.caringbridge.org/visit/liamreilly

There is so much to say…so much yet to be done…thank you for joining us on our journey, for joining the fight…

"The eternal God is your refuge, and underneath are the everlasting arms." Deuteronomy 33:27

I have been meaning to post an update for a while now, but it seems that I do not either have the right words or the right time…this summer is passing all too quickly! Having Claire’s light shine brightly in our lives is a true joy. I am amazed at the happiness she brings, but daily fight the thoughts that it is not fair that Grace is missing this…she should be here to see Claire! As Garrett reminded us recently, Grace always said that there would be another baby in our family…and now she isn’t here to enjoy her! Grace would have been a great big sister. We have joked that if Grace were here, she would want Claire to change outfits 4 times a day and be the youngest baby ever to wear dress up clothes. One of the special gifts Claire received when she was born was a bathing suit that is really just like a tutu...it was the perfect gift for Grace’s baby sister. When Claire wore it for the first time, I thought that Grace would have adored it!

 

 

Along with trying to relish every second with Claire and keep Colin and Garrett involved in soccer, lacrosse and an occasional round of golf, we have been busy with Foundation work this summer. We have been planning the second annual Golf For Grace outing on September 11 and you can now – finally -- Find us on Facebook! All of this hard work by our many supporters is done for the ultimate goal of supporting families with financial relief and finding a cure for pediatric brain cancer. In the months of June and July alone $10,000 was awarded to eight families of children battling brain tumors and an additional 5 grants are set to be delivered by the end of next week. It is such a good feeling to be able to connect with these families and know that our efforts are easing the burden, if just a little bit. At the same time, our hearts will always feel pain as we learn of a new family struggling to deal with the overwhelming emotional and financial weight of a pediatric brain tumor diagnosis. We cannot thank our supporters, fundraisers and volunteers enough for making this family grant program a reality.

We know our work with the Foundation is still in its infancy. Recently we have learned of more children being diagnosed with brain tumors and still others are experiencing progression of their tumors. We have watched as families have passed anniversaries of their child’s journey to heaven and we have read CarePage and Caring Bridge updates that have announced that another precious child has joined Grace. This confirms that our effort to fund research and help families has merely just begun…

I share with you the most recent newsletter from the Reflections Of Grace Foundation. Please click here to read it. We hope to keep you all informed about upcoming events and our accomplishments in this way in the future. If you would like to get email newsletters right to your inbox, be sure to register your name and email address here.

 

“May the God of endurance and encouragement grant you to live in such harmony with one another, in accord with Christ Jesus, that together you may with one voice glorify the God and Father of our Lord Jesus Christ…”

Romans 15:5-6