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

As November begins and we enter the upcoming holiday season, we wanted to announce that the foundation will be hosting a “Breakfast with Santa” on Saturday, November 28 at Banquets Unlimited in North Huntingdon. There will be two seatings, one at 9:00am and one at 11:30am. Prices are $8.00 for children and $10.00 for adults and the menu consists of pancakes, sausage and coffee, tea or milk. We are limiting each seating to 50 children, so if you are interested, please do not delay in purchasing your tickets. For more information and to purchase tickets, click here.

In early October, we traveled north to Grove City College's Homecoming celebration. Although this had traditionally been a time when we took all three kids for the annual trip to visit our alma mater, we had not been there since Homecoming 2006. This year, we finally found the strength to return to the place we had so willingly shared with the kids in the past. I had been eager to locate the specially engraved brick dedicated in Grace’s name by a group of my younger sorority sisters and placed in a new courtyard on campus. So, with a pink rose in hand, we set off to find her brick amongst the many. It took Colin a short 2 minutes to find his sister's name. We placed the rose carefully and I traced her name with my fingers...although it will never be easy to see her name in this way, the brick is a lovely tribute to Grace in a special place for both Brian and me.

 

We've seen her reflection many times recently; in the bright pink line that stretched across the otherwise dark sky one cool autumn morning, on the sleeves of the Norwin girls’ soccer team t-shirts, spelled out on the wall of a store, in the lyrics of a new song introduced on a talk show, in the excited eyes of the trick or treaters knocking at our door. So, although we continue our journey with unanswered questions of why we walk without Grace’s physical presence, we embrace the ways she continues to be in our lives, even from above…

 

This photo was taken in August 2007.  At that time Grace had already mapped out her Halloween costumes for the next several years.  That year she would be Gabriella from High School Musical (while "she was still popular" was Grace's reasoning), then a beautiful bride the following year, Sleeping Beauty in 2009, and a butterfly in 2010.  This Sleeping Beauty dress hung proudly in the entryway of our home this Halloween.... 

One final note...our fellow DIPG warrior Andrew Smith is facing more challenges in his journey. Please keep him in your prayers and visit his website to post an encouraging message:
www.caringbridge.org/visit/aws

“…And we desire that each one of you show diligence so as to realize the full assurance of hope until the end….This hope we have as an anchor for the soul, a hope both sure and steadfast…”
Hebrews 6: 11,19

As we approach the last few days of September, there are a few things we’d like to share.  First of all, after months of hard work, Reflections Of Grace has a new web site.  The address (www.reflectionsofgrace.org) is still the same but the site is totally redesigned.   Brian and his brother Corey have spent countless hours tending to each and every detail of the site to make it informative and user-friendly.   All of the content has been re-written and we have added photo galleries and slideshows of our events in the past year.  My favorite part is a last-minute addition to the “Grace’s Story” page (make sure to read to the bottom!).  We are so thankful for Corey’s meticulous diligence and devotion of time, along with his expertise and talent that has made the site look so professional, yet beautiful.  Please take a few moments and check out the new look!

Secondly, on Monday, October 12, 2009, Reflections Of Grace presents its first golf outing.  The event will be held at Madison Club Golf Links in Madison, PA.  We have extended the deadline for registration and sponsorship to Friday, October 2.  Please go to the golf outing page of the web site at http://www.reflectionsofgrace.org/index.php/golf-outing.html to download a registration form.  If you are interested in golfing or sponsoring a hole, please print, complete and mail the form as soon as possible, as spots are filling quickly.

We continue to engross ourselves in foundation work and are gearing up for the planning of the 3^rd Annual Race for Grace, set for Saturday, March 20, 2010 at Norwin High School.  In addition, we are in the initial stages of planning a “Breakfast with Santa” event in North Huntingdon on Saturday, November 28, 2009.  Most days, it is still hard to fight the realization that our lives are very different than we ever would have expected.  Sometimes I find myself looking down and expect to feel a little hand holding mine as we cross a street or walk in a crowd.  We see Grace’s friends and wonder how she would look and what she would be wearing.  We have typical every day experiences and imagine how Grace would react.  The other night I caught the end of the show Grey’s Anatomy where the characters were dealing with their grief of the death of a co-worker.  The show was a chronology of the day by day dealings of how grief had enveloped their lives…it was one of those shows where I probably should have changed the channel, yet I continued to watch.  I thought that some of the sentiments shared were so raw, so true… that grief sneaks up on you and just when you think you have a handle on it, it leaves you breathless. 

So we must acknowledge that those moments and then somehow find the courage to take the next breath….

 

“…He Himself gives to all life and breath…for in Him we live and move and exist…”

Acts 17:25,28