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

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

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

We continue to find ourselves thankful for the many blessings that have come our way, despite the turbulence of the past two years…

Our newest blessing arrived on Saturday, March 27 at 12:07pm. Claire Anneliese Ekis made her debut weighing 7 pounds and measuring 19 inches. We are thrilled and totally in love with our new baby girl. We chose her first name simply because we liked the sound of it…it’s kind of old-fashioned! It means clear, bright or famous (or, as Grace would say--“famouser”). Claire’s middle name was Grace’s favorite name ever…she wanted to name our dog Anneliese, her baby dolls Anneliese and just about anything else that she could think of Anneliese! The funny thing is that when I went to look up the meaning of the name, I found out that Anne comes from the Hebrew Hannah, which itself means Grace. And Liese is derived from the name Elizabeth, which means “pledged to God.” How could it be that our Grace Elizabeth loved a name that actually meant her name? I assume it was just one of the many things that she just knew. Hence, there was not a more perfect middle name…Anneliese. In caring for Claire in the past 9 days, I cannot deny that when I look into her beautiful eyes it is as though she has already met her big sister. The closeness of a newborn baby to heaven is undeniable to me…how I wish I were there to hear the conversation!

Yet another blessing is the incredible support our extended community has shown for the Reflections Of Grace Foundation. In the past few months, events such as a Longaberger Basket Bingo, Hillcrest Intermediate School’s “Valentines for Grace”, the University of Pittsburgh Katz School of Business Alumni Association’s Monte Carlo Night fundraiser, and Norwin Middle School’s “Penny Wars” have all directly benefited the Foundation. In addition, a number of schools and businesses have graciously participated in our Wear Your Heart On Your Sleeve program by sponsoring a dress-down day for their employees.

Then, the 3rd Annual Race For Grace was held on Saturday, March 20. Once again, the Race was an overwhelming success! It was a beautiful day in more ways than one. The weather was perfect (to think we were worried that there might still be snow on the ground!) and nearly 2,000 people were in attendance. After months of hard work and planning, the Race raised more than $70, 000 in support of the mission of Reflections Of Grace. The success of the day would not have been possible without the unending dedication of our wonderful committee members and countless volunteers who worked tirelessly to ensure that the day went smoothly. I urge you to visit the web site (www.reflectionsofgrace.org) and view the race results, photo gallery, television news reports and newspaper articles that summarize the day.

Speaking of the web site, we want to announce that the gift store is now up and running. There you can purchase Foundation and Race For Grace apparel, accessories, or make a donation. Also, remember if you have not signed up for email updates on www.reflectionsofgrace.org, be sure to do so by entering your email address in the space near the mail box on the left-hand side of the home page. This way we can email you directly from the Foundation web site even if Care Pages is not functioning correctly.

We remain blessed...

“It is the blessing of the Lord that makes rich….”
Proverbs 10:22