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

What a day! Sincere thanks to all that attended and sponsored the 4th Annual Race For Grace! Everyone’s contributions were truly appreciated. Yesterday was yet another record breaking day, as both registration and fundraising goals were surpassed. Between the 1,800 registered runners and walkers, 300 volunteers, and 300 spectators, the total number of approximately 2,400 attendants was really remarkable. Even more astounding was the total amount of money raised….over $88,000!! These extraordinary accomplishments would not have been possible without the tremendous help of our dedicated volunteers and the overwhelming support of the community. From the bottom of our hearts, thank you!

"...in everything give thanks..."
I Thessalonians 5:18

There are some days that will be difficult to get through, no matter how many years that pass; no matter how many times we come upon them. This is, without a doubt, one of those days. It will remain the single day that changed our lives forever- Grace’s day of diagnosis. This is now the third time I have written a reflection on that day, and I still find it hard to find the words to accurately describe my feelings. I want to write something inspirational, something poetic, but the words aren’t flowing.

On many days in the past 3 years, I have found it necessary to not let my guard down and allow myself to feel the overwhelming, breath-taking pain I experienced when Grace took her journey to heaven. It is a conscious decision at times to not “go there”. It is one of the ways I have learned to cope. Today, however, it has taken all of the strength I have to not allow that grief to overtake me. On Grace’s birthday I can remember the celebrations we had, on holidays we can think of the family traditions and time we spent together…today, there is nothing to remember but the pain, the fear…nothing to hold close, just the words that shattered our lives…

To combat those feelings of despair, I offer the positive…our family has been given an incredible gift this year-Claire Anneliese has filled our days with smiles and joy…the foundation is thriving and we have been able to help over 21 families financially deal with having a child with a brain tumor…we have been blessed with wonderful volunteers who selflessly give their time, talent and expertise to fulfill the mission of Reflections Of Grace…we are preparing for the 4th Annual Race For Grace on Saturday, March 19, 2011…

Yet, there is still much work to be done. Families are still being thrust into the world of childhood cancer…children are still fighting for their lives with incredible bravery and courage…there are still limited options that are offered for a child with DIPG…there is still no cure. We continue to dedicate our work through the foundation to Grace and her amazing spirit as we hope for a bright future for those children who remain in the fight. We pray that the families of these children will be given the gift of time…one day after another together… Right now, we offer special prayers for some of the children and families who continue to battle…
Alexis…www.caringbridge.org/visit/teamalexis
Nicole…http://www.carepages.com/carepages/NicolesNotes
Ella…http://www.carepages.com/carepages/EllaNewmiller

As we continue, we invite you to join with us in the work at hand. Our next organizational race meeting will be on Saturday, January 15 at 9:00am at our home. Please feel free to email Ashley, our race director, at Ashley@reflectionsofgrace.org to express your interest to help in planning. Keep up-to-date on meeting times and places by logging on to the foundation website, www.reflectionsofgrace.org or following us on Facebook.

As a testament to Grace, we choose to walk in hope, to offer the positive, to embrace the lives we have been given… Grace’s words continue to ring in our minds and our hearts…“It is better to have a better life than a worse life…”

“Now may the God of hope fill you with all joy and peace in believing, that you may abound in hope…” Romans 15:13

As many of you may know, for several months we have been experiencing trouble with the email notification when Grace's CarePage is updated. We have contacted CarePages numerous times and they have stated that they cannot solve the problem as a whole unless no one is being notified of our updates. Since the update notification has been random, they said that they are not able to fix the problem. Many other CarePage parents have been having the same issues, and recently CarePage managers have stated that the notifications will go out to the entire guestbook if the update is marked urgent. So, I have marked this update as urgent for that reason. I am sorry if this caused any of you unnecessary alarm, but we felt that it was the only way to try and reach everyone in our guestbook. If you have not received email notification of the last few updates, please go back and read the previous posts. In addition, we are urging ALL of you to register on the new Reflectionsofgrace.org so that we can send our own notifications and not have to rely on CarePages.

It is that time of year again to begin preparations for the 3rd Annual Race For Grace, benefiting the Reflections Of Grace Foundation. Mark your calendars --- the race will be held on Saturday, March 20, 2010 (one week earlier) at Norwin High School.

For those willing and able to contribute, the first planning meeting will be held on Sunday, November 15, 2009 from 2:00-4:00pm at the Norwin Public Library, 100 Caruthers Lane in Irwin. All interested individuals are encouraged to attend this kickoff meeting to learn more about joining committees and getting involved. Volunteers from previous Reflections Of Grace events, as well as brand new volunteers are both welcome to participate. The tremendous success of the 1st and 2nd Annual Race For Grace would not have been possible without the support from many committed volunteers. So, feel free to bring a friend, recruit new volunteers, and spread the word about helping to plan this upcoming event.

We are also getting closer to the upcoming Breakfast With Santa on November 28 and spots are filling quickly. At this point, the 9:00am session is getting close to maximum. If you have an interest in attending either session, please do not delay in reserving your space...visit www.reflectionsofgrace.org for details.

"And do not neglect doing good and sharing; for with such sacrifices God is pleased..."
Hebrews 13:16

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

Good morning!

We've been made aware that some people may not have received notification from CarePages of Saturday's update. Hopefully this new message will get to everyone! If you haven't already, please go to the prior update to read up on some exciting things happening with the Reflections Of Grace Foundation.

One item of note that was omitted from the previous update: Today -- Monday, September 28 -- is the day that Chili's restaurants nationwide donate 100% of their profits for the day to St. Jude Children's Research Hospital. What a great way to commemorate Childhood Cancer Awareness Month as September draws to a close! Wear your gold ribbon and head to Chili's today to support St. Jude and all that they do for children stricken with cancer.

For Love, For Hope....For Grace

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

This Saturday, July 18, Relay For Life of Norwin will be held at Norwin High School's Knights Stadium. Celeste Koutavas will be the host, once again, for an Amazing Grace team. There was no pre-registration for the team this year, so if you would like to attend and want to join the team, registration will begin at 9:00 am. A limited number of Relay t-shirts will be available at the time of registration. Anyone who is planning to attend the event and still has their Amazing Grace shirt from last year is welcome to wear it. The actual opening ceremonies will begin around 10:00 am, with the first lap starting time of 11:00 am.

If you would like to come and just enjoy the event without joining the team, please feel free to do so anytime during the day. There will be booths with activities, games and food available. There will be a Survivor lap and ceremony at 6:00 pm for anyone fighting cancer. The beautiful luminary ceremony will begin at 9:00 pm. Throughout the day, you can purchase luminary bags in memory or honor of a loved one.

We will be attending and selling Reflections Of Grace Foundation bracelets and pins to benefit Relay for the day. Although our main fundraising focus has certainly shifted from Relay to our Foundation, we are glad to come out and support this community event in honor of the many families in our area affected by cancer.

We celebrated on that Relay day in July 2007...Grace was fighting and surviving; we remember fondly that it was one of her most favorite days ever; now, we fight back, because what we loved so dearly has been taken from us....

"Trust in the Lord with all yor heart,
And do not lean on your own understanding..."
Proverbs 3:5

In the weeks before Grace made her journey to heaven, she had been thinking about summer. She had me draw many pictures and cards for her closest friends with pictures of water, swimming and smiling suns. One even said "Don't you wish it was summer?...I sure do!" She was fondly remembering the summer before when she went up the street to swim with Meghan and Delaney. So, as the summer begins and we embark on yet another season of change without her, it is difficult to get through mere minutes without thoughts leading back to her. I think of the dance recital she so eagerly anticipated. Her dance costume and shoes are hanging by the front door, reminding us of how excited and thrilled she was to get ready for the Showcase and to dance on stage. How she loved the feeling of performing with all of the "big girls"! Knowing that the Showcase is this weekend, it has been hard not to remember her excitement and fight the still-intense pain of heartache.

I realize that it has been a while since I've updated, the truth is that I have tried to write this many times recently and just haven't been able to complete my thoughts. So now there are a few things to share....

May was Brain Tumor Awareness Month and we had a Sarris candy bar sale to raise awareness of DIPG and pediatric brain tumors. Reflections Of Grace Foundation, with the help of Ashley Metz and a group of dedicated "candy salesmen" sold over 3,000 candy bars stickered with brain tumor facts and our foundation information. We made $1,200, and, more importantly, helped to raise awareness about brain tumors and DIPG. Thank you to everyone who helped and bought candy bars, especially to the top candy seller Cheryl Natale who sold 26 boxes at work and through her friends! Please continue to check the Reflections Of Grace website (www.reflectionsofgrace.org) for upcoming information as we continue the mission of helping families and children affected with pediatric brain cancer.

On July 4, 2009, we will travel to Avon Lake, Ohio, for the Smiles For Sophie Forever 2nd Annual Birthday Bash and Dash. The Quayles have become great friends to us and we encourage you to visit www.smilesforsophieforever.org for the details of the race. Emily and Marc brought their family and friends to our race in March and we are happy to share in their mission in memory of their daughter Sophie.

As my school year ended, I guess I overcame another personal hurdle. After not knowing just how I would get through the year with kindergarteners, I realized that the beautiful 5 and 6 year old faces that greeted me each morning were a motivation in my life. They made me smile on days that I thought I couldn't...they filled my heart with pride and joy as I watched them grow into readers and writers...they touched me deeply when they told me that they would miss me and that they loved kindergarten…

So, enjoy the long summer days with your families, watching for “night-light” bugs (that is what Grace called them), swimming, playing in the sun, taking time to simply relax and savor the moments you have been given together.

“A time to weep and a time to laugh; A time to mourn, and a time to dance…”
Ecclesiastes 3:4