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Posted by tamara in Untagged
Grace is given not because we have done good works, but in order that we may be able to do them.
Happy “I Love You Day!”
It is hard to know just where to start....when Grace first joined the angels it was impossible to believe that we would be able to make it to the 5 year anniversary of her journey to heaven. At that time, we couldn’t imagine that we would exist without her. The pain was so intense that we were unable to see beyond a few months, days, or even hours. Now, 5 years later, that intense pain does not consume our every moment as it once did. We have learned how to put it away to survive the everyday, replacing it with a yearning, a desire for Grace to be here with us, experiencing all that life has to offer. We find ourselves wishing she were here to play with her little sister, to see her brother on the field on senior recognition night, or to laugh at the dinner time jokes and stories. That longing will never cease; we will forever miss her presence in our everyday.
People ask how we are...we are continuing to find the blessing God has to offer…being able to share in the joy of a new baby with good friends, watching Claire grow and light our lives, being surrounded by loving and supportive friends and family… We continue to be touched by the stories of others who remember Grace, her journey and the impact she has made on so many lives. We appreciate more than you can imagine those who continue to tell her story, reminding people how incredibly brave and selfless she was, even in her last days on Earth. We remain honored to be the family of Grace Elizabeth…
As our work with the foundation continues and grows, there is still much to be done. We must continue to support research and help families. When I speak with distraught parents, correspond with social workers or read the stories of the families we are helping, it validates the importance of our mission. All too many families are struggling to pay mortgages, afford medical travel expenses or provide daily necessities as their children battle brain cancer. The startling fact remains that there is no cure for many types of pediatric brain cancers. Research is still under-funded. Children are being diagnosed and children are dying from this illness every day. It can strike any child from any socio-economic background or ethnicity. It can be Grace, Aly, Sophie, Alexis, Caleb, Andrew, Easton, John, Charles, Xzavier, Carson, Sean, Austin, Breanna, Evan, Brian, Ashley, Cole, Matthew, Mary, Francesca, Morgan, Liam, Aubrey, Edder, Crystal, just to name a few…
We invite you to join us in any way you can…donate, volunteer, run, walk, cheer, dance, watch, stroll, sponsor…all to continue the fight against this horrible monster…the 6th Annual Race For Grace on Saturday, April 6, 2013.
Happy I Love You Day, amazing Grace…we miss you every single day! You continue to be our inspiration…we WILL love you FOREVER!
Happy 10th Birthday to our sweet Grace!
Not a minute goes by that we aren't thinking of you and wishing that you were right here with us.
Dance away sweetheart...we love you!
Mom, Dad, Colin, Garrett, and Claire
Posted by tamara in Untagged
Our deepest thanks to all who joined us at the 5th Annual Race For Grace! The kindness and generosity displayed by the committee chairs, volunteers, runners, walkers, spectators, corporate sponsors, and individual donors is truly appreciated. Yesterday was yet another record breaking event, as both registration and fundraising goals were surpassed. Between the 2,164 registered runners and walkers, 300 volunteers, and estimated 400 spectators, the total number of nearly 2,900 attendants is absolutely amazing. Even more incredible is the total amount of money raised -- over $101,000 – exceeding our expectations once again!
This being the 5th Annual Race For Grace was a difficult and emotional milestone for us, but looking around yesterday, it was evident that Grace was at work. We are humbled to see such growth and unity for the cause year after year. The overwhelming success of the 5th Annual Race For Grace would not be possible without the unwavering support of the community. Although words do not seem adequate, we thank you most sincerely and wholeheartedly!
Posted by tamara in Untagged
We Are Not Alone…
I am sure that many of you noticed that I did not post an update on Valentine’s Day...I did post a small tribute to Grace on Facebook, but found myself unable to come up with anything different to say on Valentine’s Day this year. Although it has now been four years since that day we felt her breathe for the last time, there are many feelings that have not changed. We still miss her desperately, still love her deeply and still wish she were here with us. There are many instances that we find ourselves longing for Grace, wanting to be able to share that moment, that experience with her. There are many times that her name is on the tip of our tongue, forefront in our minds. Those moments are ones when we just want to call her name and have her smiling face appear...
One of those moments was when we recently boarded a plane destined for Disney World. It would not only be the first time we traveled to Disney since the wish trip in 2007, but the first trip for Claire. We were lucky to be traveling with both my parents and my brother and sister-in-law. The entire family was off to experience the “magic” that Disney had to offer. In addition, the trip was taking place over Valentine’s Day. It was the first time that we had chosen to go away on such a momentous day. Our aim was not to run from the memories, but to celebrate and honor the beautiful life of Grace. We did have second thoughts and much trepidation about traveling over this time, but, like so many instances before, we took a deep breath and forged ahead. Our wish this time was to be together in a place that Grace enjoyed so much on a day that remains so hard for us all.
The trip went well. We enjoyed time together and allowed ourselves to have fun. On Valentine’s Day, our friend Celeste arranged a fireworks pontoon boat cruise on the bay around Magic Kingdom for us. It was a peaceful way to spend the evening, watching the fireworks and imagining that Grace was also seeing them from heaven. As the week went on, we remembered rides she enjoyed, princesses she loved to meet and things she relished when she was there.
It was not until the last night, however, that we experienced the reflection of Grace that we had longed for all week.
We knew all that we wanted to get Claire her own Mickey Mouse ears like Colin, Garrett and Grace had gotten. We had not purchased them yet, and it was now our last night of the trip. Although we had had a long day in Epcot, we persuaded Colin and Garrett to go back to Magic Kingdom with us, despite Garrett’s reluctance. It was late and crowded when the five of us arrived in Magic Kingdom. The parade was about to begin and there were what seemed to be a million people on Main Street. As I began pushing the stroller towards the gift store behind the castle, the boys told me to go to the hat store right at the front of Main Street. I turned Claire around and we fought the crowd to get to the store to make our purchase. Actually, once inside, there was no one else buying a hat or ears at that time. We were the only ones in the store. We chose pink ears with the classic embroidery for Claire. The ears were handed to the embroiderer and I pushed Claire to the far side of the store to wait for them to be finished. It was then that I noticed a shelf behind the counter where the completed ears were placed until they were picked up by their owners. I could not believe what I saw. On that shelf, at that very moment, there was a pair of light pink ears with a satin pink bow. Embroidered on those ears was the name Grace. My heart stopped… Brian and the boys noticed them just about the time I did. We were overcome with emotion…of all the names, of all the types of ears that one could buy; there was a pink pair with Grace… I handed the cashier Claire’s ears and asked her to set them beside the ones that said Grace so I could take a picture. Just then I heard Colin say, “Mom, look at the rainbow ears on the shelf above with Sophie’s name on them!” Incredible. Amazing. (If you do not know Sophie’s story, please read about this special little girl at www.smilesforsophieforever.org) The tears began to stream down my face as I told the cast members in the store our story and Sophie’s as well...we left the store still crying, not quite able to fully comprehend the breadth of this reflection. It was like she was saying, “I am right here with you, you are not alone! We are right here…we are with you wherever you go…”
So, when we least expect it, Grace reminds us that she is with us. We are not alone. How blessed we are to have experienced such a child, such a wonderful reflection!
“For I will not presume to speak of anything except what Christ has accomplished through me…in the power of signs and wonders…” Romans 15:18, 19
Join us as our journey continues… There are only two days left to register under the early bird prices for the 5th Annual Race For Grace. Visit http://www.reflectionsofgrace.org/index.php/5th-annual-race-for-grace.html for information and to register. If you are unable to attend, please use the same link to make a donation. Our mission remains…we will not leave the children and families of pediatric brain cancer alone!!!
Posted by tamara in Untagged
It’s not too late to reserve your places at this year’s Breakfast with Santa event benefiting the Reflections Of Grace Foundation. The 3rd annual Holiday gathering takes place this coming Saturday, November 26 at Pluma restaurant in North Huntingdon. Plenty of spaces are still available at both the 8:30 and 11:00 AM sittings. Bring the entire family for an opportunity to meet Santa in a relaxed environment while enjoying a delicious breakfast buffet that includes pancakes & waffles, full omelet station, sausage & bacon, fruits, breads, pastries and more! Also included in your reservation is a complimentary group photo with the man of the hour himself – Santa Claus! Don’t miss this wonderful way to kick off the Season while also helping Reflections Of Grace in continuing to assist children affected by brain cancer. Prices are $18 for adults, $12 for children (12 and under), and kids under 2 are free! Please go to www.reflectionsofgrace.org today for additional information and to purchase your tickets.
For Love...For Hope...For Grace
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."
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
Posted by tamara in Grace
Posted by tamara in Alexis
As we meet to plan and discuss our upcoming race, we stop to remember just why we work so hard...
Our hearts are re-broken each time yet another precious child makes their journey to heaven... Yesterday, the angels came for dear Alexis, who bravely fought for 33 months.
Please join us in praying for her family...Jon, Neely and Gabe.
"He will send from heaven and save me...God will send forth His lovingkindness..." Psalm 57:3
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…
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
A few weeks ago, Garrett and I took the shortcut home. As we came down a wooded hill, there stood a mother deer and her two fawns in the middle of the road. They were adorable, still having spots and looking very young for this time of the year. I slowed down to a crawl and the deer and her babies hopped across the road to a nearby yard. We stopped and watched the fawns prance around and then dash into the trees. As I drove away, Garrett and I discussed how cute the deer were and continued home, smiling at our encounter. A few weeks later, as I drove that same road on my way back to school, I came upon the mother deer again. She was, like the last time, standing right in the middle of the road. This time, however, there was only one baby at her side. I drove very slowly, looking intently for the other fawn. There was only one. I could barely breathe, let alone continue my drive. The tears streamed down my face as my mind made instant parallels between that mother deer missing her fawn to me, forever missing a child. It took all the strength and courage I had that day to continue on to school. Since that day, I have looked for that mother deer every day, somehow feeling a strong connection with her.
When we go places as a family, I always feel as though we are leaving someone behind. I wonder if the mother deer keeps on looking for her missing baby. When I see a family, I wonder if they are all there. When someone looks at us, I wonder if it is obvious to them that we are an incomplete family. Our lives are not normal and, as another DIPG mom stated, we do not exist in a”new normal” either. There is nothing normal about losing a child and that pervasive feeling of being incomplete will always tug at my side. I cannot tell you how many times strangers have commented on the number of years between the boys and Claire…the comments like, “Well, you finally got your girl!” or “Wow! That is a big gap between kids!” Sometimes we don’t say anything and the stranger escapes that conversation without incident. Most times, however, I dig up some courage, take a deep breath and I tell them about Grace.
Monday, September 13 is Childhood Cancer Awareness Day. To mark this day, Reflections Of Grace Foundation will receive 20% of your total bill at Max and Erma’s in Monroeville. You can eat in or take out any time throughout the day and all you have to do is present our coupon. The coupon is available on the foundation website, www.reflectionsofgrace.org. What a good reason to spend some family time together eating out! We are not permitted to hand out the coupons on site, so be sure to remember yours when you go.
The DIPG world has been shaken once again this past week. Four children have gained their wings, two of which are children whose families received family grants from us this summer. Please offer prayers for the families of Ashani Morris (http://www.carepages.com/carepages/PrincessAshani) and Kole Miller.
In addition, another family we know has just learned that their beautiful daughter is experiencing tumor progression--please lift up Nicole Mackintosh (http://www.carepages.com/carepages/NicolesNotes) and her family in prayer.
September is Childhood Cancer Awareness Month. I urge you to pray for the families that will never again be fully complete because of childhood cancer. I urge you to tell the story of a child who bravely battles their cancer without complaint. I urge you to find a few extra moments to spend with your child this month just because you can.
Believe it or not, just last week, I saw the deer in the middle of the road once again. I approached her with trepidation because I did not at first see the fawn. As I got closer, she jumped to the side of the road. I watched her dash into the bushes and to my surprise, there stood not one, but two fawns, waiting for her to join them. This time, as the tears began to stream down my face, I could only imagine how it felt to be that mother deer that was, again, complete.
“…hope we have as an anchor of the soul, a hope both sure and steadfast…”
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…
“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…”
With Mother’s Day this past weekend, there have been many DIPG moms that have shared their most intimate thoughts and feelings about what motherhood means to them on their child’s website. I became overwhelmed with emotion as I read -- understanding and relating to their similar experience of becoming a mom and then losing such an integral part of your being.
For me motherhood was, from a very young age, something I always wished would happen. I dreamed of having children and what I would name them…I thought about how many kids I would have and whether they would be boys or girls. I remember that for a time, when I was asked what I wanted to be when I grew up, I responded with “a hospital administrator”. Secretly, however, I simply wanted to be a mom. I have always wanted to be a mom…maybe that is one of the reasons I followed my heart and became a teacher instead of a hospital administrator. That way, even if I did not become a mom, I would still have children to “mother” in my life.
It was when I became a mom that I felt truly complete…by having children and being married to Brian, I was living my lifelong dream. Colin, Garrett and Grace created pure joy in my life. Then, when Grace was diagnosed with a terminal illness, I felt that my dream was being taken from me…from us. It could not be that this was part of my dream! This was not the dream I had imagined. Over the past three years, I have come to realize that I am continually blessed by my children, and even though Grace is no longer physically with us, I will always be her mom. Although my journey through motherhood has included the most intense heartache a mother could ever experience, at the same time, my heart continues to grow in ways I never could have imagined.
This May, along with celebrating moms, I urge you to wear gray for National Brain Tumor Awareness month. Visit www.reflectionsofgrace.org and click on the “May is National Brain Tumor Awareness Month” slide to find out what you can do to promote awareness and help us to spread the word about brain tumors. Wear your gray ribbon pins, share Grace’s story, help sell Candy For A Cure, or sponsor a Wear Your Heart On Your Sleeve day at your workplace and pray for those families whose lives are forever changed due to a brain tumor.
“I have loved you with an everlasting love…”
Yesterday was Grace's 8th Birthday...I had wanted to post a message but as the day went on, it became increasingly hard for me to do so...
April 20th will always be Grace's birthday...a day to celebrate her incredible life...we found it fitting to gather with a few friends for balloons and pink cupcakes. Colin and I had McDonald's french fries for lunch and we made tacos for dinner. I thought how happy she would have been that this year; her birthday was on a Tuesday, a dance day! It is forever a day to think of how loving and how full of life she was, remembering her excitement for birthdays (whether it was hers or anyone else's) and cake!
It is, however, a difficult day because we cannot shake the feeling that she should be here, celebrating with us. All day yesterday, I tried so hard to focus on how happy she made us from the moment she was born, but all I could end up feeling was how sad I am that she is not here. I was so glad when it was time for the kids come and release the balloons, play on the play set and eat cupcakes! I thank you to all of our friends who remembered Grace and our family yesterday with kind gestures, thoughts and prayers.
I am sure that Grace was smiling and dancing as she celebrated in heaven while we celebrated here...maybe she is even having cake again today with fellow DIPG warrior Andrew (www.caringbridge.org/visit/aws) for his 9th birthday! Someday, dear Grace, we will share cake together again!
"I do not cease to give thanks for you as I remember you..."
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….”
I just wanted to post a quick reminder to all of you who have not yet registered for the 3rd Annual Race For Grace on Saturday, March 20. We are now only 10 days away from the race! If you wish to register online, please go to http://www.active.com/running/north-huntingdon-pa/3rd-annual-race-for-grace-5k-and-1-mile-walk-2010 in the next two days. Online registration closes at 9:00 pm this Saturday evening, March 13. If you plan on sending your registration in through the mail, you will need to do that quickly as well. If you are not registered by Saturday, March 13 (online OR via mail), you will NOT be able to pick up your race bags at the early distribution times.
In addition, we will take registrations on race day beginning at 7:00 am. We have ordered an excess of race shirts, but their availability will be on a first-come first-served basis.
We have an incredible team of volunteers that have worked diligently for many months to put together a great day for runners, walkers and families. We urge you to register, come and enjoy the day! For all of the details, please visit www.reflectionsofgrace.org and click on the race page.
Hope to see you there!
Posted by tamara in Grace
Happy I Love You Day, Grace Elizabeth!
We miss you, we long to hold you, to touch you, to hear your voice and yes, we will always love you!
Our hearts remain heavy today as we reach this milestone...2 years without you.
We hope that your beautiful life serves as a constant reminder to all to live fully, cherish others and love the life that you have been granted.
Dance on, sweet angel...
"Pursue love..." 1 Corinthians 14:1
It is hard to believe, but also hard to forget, that today, 3 years ago, our family began to travel this road of childhood cancer. On that January 4th, I can vividly remember that it was unseasonably warm, we didn't even have winter coats on...I recall the specific outfits both Grace and I wore...I remember those last feelings of innocence I had as a mother...it was nothing big, she just had an ear infection or something...
So, our lives were forever changed that day. Our path was not the path we chose, for some reason, it was chosen for us. Now we must find the courage to keep walking that path, each and every day...remembering and reflecting on our lives with Grace. Some days, we walk slowly and some days, we must run...there are days the memories make us smile and days they make us weep.
Now, we have vowed to fight on through the foundation...For love, for hope, for Grace...
As we prepare for the 3rd Annual Race For Grace, here are a few updates...
The next planning meeting will be this Wednesday, January 6 from 7:30-9:00pm at the First United Methodist Church in Irwin, 310 Oak Street, Irwin, PA, 15642. If you or someone you know are interested in helping, be sure to make this important meeting as planning is in full swing.
Secondly, the registration for the race is now open via active.com. Please copy and paste the following into your browser:
"Be joyful in hope, patient in affliction, faithful in prayer."
Greetings...I wanted to post our Christmas 2009 message and also share some pictures of Grace's stone that was recently placed.
Our light is our hope…
The past three years have been the test of our lives. As parents, we have lived through our worst nightmare…the loss of a child. As brothers, Colin and Garrett have been forced to mature much beyond their chronological ages of 11 and 14. As a family, we deal daily with the raw emotion of longing for someone who brought us so much joy.
In the midst of all of this, however, we have been lighted by hope…hope in the belief that we will, someday, be reunited with Grace…hope in the work that we have pledged to complete with the Reflections Of Grace Foundation…hope in the faces of the many friends who have joined us in that journey…and now, hope in the new life that will join our family early this spring when our baby girl is born.
Merry Christmas! May your New Year be filled with many blessings and be lighted by hope…
"Arise, shine; for your light has come..."
On Friday, fellow DIPG warrior Andrew Smith earned his wings and joined the angels. Andrew had been bravely fighting for 2 years, much longer than many other DIPG children. Andrew's insight, wit and wisdom became a beacon of light for not only his family, but for many families traveling this road. I have often wished that Grace was able to meet Andrew. I imagine that the two of them could have come up with some VERY interesting ideas. I envision that when they meet in heaven, Grace and Andrew will become great friends.
When we received the news of Andrew's last breath here on Earth, Brian and I found ourselves with wounds again reopen. It is very hard to explain to you how we feel as we witness other families experiencing the loss of their children...we wish we could somehow stop them from going through this; that no one else would ever have to endure what we have experienced; that we could shelter them from the once unimaginable pain. It is even hard for us to offer words of sympathy, because we know that even though the words are spoken with the best intentions, they cannot begin take the edge off the devastation that is to come...
Please take a moment to visit Andrew's website and offer a few prayers for his family....www.caringbridge.org/visit/aws
"And we know that the Son of God has come, and has given us
understanding, in order that we might know Him who is true, and we
are in Him who is true, in His Son Jesus Christ. This is the true
God and eternal life."
1 John 5:20
Also, I wanted to remind you that on Wednesday, December 9 at 7:30 pm, we will be having our second planning meeting for the 3rd Annual Race For Grace. The meeting will be held at the First United Methodist Church in Irwin (310 Oak Street). Please enter through the side doors from the parking lot.
In other Foundation news, we now have our first Christmas ornament for sale. It will certainly be a beautiful addition to your Christmas tree! Please go to www.reflectionsofgrace.org to view and purchase the ornament.
Last but not least, I am sharing a message from fellow foundation The Cure Starts Now regarding the sale of their holiday cards:
Please spread holiday cheer while supporting pediatric brain cancer research. 13 amazing DIPG kids designed these adorable cards. Each pack has an assortment of 15 different designs on high-quality glossy 5x7 cards. Please visit www.thecurestartsnow.org and select "SHOP". Proceeds go to pediatric brain cancer research. Please help us to celebrate these amazing children by purchasing a pack!
Let us continue to walk in the light of the Christ Child as we encounter yet another Christmas season....
"Arise, shine; for your light has come..."
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..."
Posted by tamara in Santa , Reflections Of Grace Foundation , October , November , Norwin , Halloween , Grove City College , Grace , events , Breakfast , Andrew Smith
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:
“…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
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 3rd 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…”
Posted by tamara in Grace
This past week I remembered how excited Grace was to see our neighbor, Matt, walk down the street to get on the high school bus. She was awake and ready for kindergarten very early that first day and she saw him going to the bus stop. She was yelling from the window, "Matt is going to high school! Matt is going to high school!" This year, as I watched Colin walk to the high school bus stop for the first time, I couldn't fight the tears as I thought of how proud she would be to have a brother in high school. She would, undoubtedly, be yelling from the porch, "Colin is going to high school! Colin is going to high school!"
So, the buses came and went this week and it still hurts. She should be getting on, going to second grade with all of her peers. The black-eyed susans have bloomed and are now beginning to fade and she was not there to have her picture taken in front of them.
As we have learned in the past 18 months, we take deep breaths and try to turn our pain into action. September is Childhood Cancer Awareness Month and Saturday, September 12 has been named Childhood Cancer Awareness Day. We have planned a few activities to commemorate this with the Foundation. First of all, on Thursday, September 10, Max and Erma's in Monroeville will donate 20% of your total bill to Reflections Of Grace. All you need to do is present your server with our flyer, which can be downloaded from www.reflectionsofgrace.org. Once you have printed the flyer, feel free to share one with your friends and family or anyone you know who might be able to eat there anytime that day. The one thing we are not permitted to do is to distribute the flyers at the restaurant on the day of the benefit. So be sure to print your flyer, distribute one to a friend, and remember to take it with you to Max & Erma's on Thursday the 10th!
Secondly, on Monday, October 12, we are hosting our first annual golf outing at The Madison Club in Madison, PA. The event will be an 18 hole scramble and we can only take the first 144 golfers that register. For more information and a printable flyer, go to www.reflectionsofgrace.org. You will find the link to both the Max and Erma's flyer and the golf outing flyer at the top of the main page.
In addition, there are several other things you can do to help spread awareness about Childhood Cancer Month. You can simply wear a gold ribbon in September (gold has been chosen for childhood cancers as a whole) and tell anyone who asks why you are wearing it. You can sponsor a "Wear Your Heart On Your Sleeve" dress down day at your place of work (visit reflectionsofgrace.org for details). You can visit www.icouldbeyourchild.org to read about the many children afflicted with DIPG and then pray for them and their families. You can tell someone who doesn't seem happy with their normal life how blessed they are to have healthy children and then share with them the story of a family that has lost a child to cancer...
Feel free to contact us if you have any questions about any of the upcoming events...you can email us at email@example.com.
"And without faith it is impossible to please Him, for he who comes to God must believe that He is, and that He is a rewarder of those who seek him..."
This week marked 18 months since Grace danced away with the angels. Early this morning, Grace's Great Grandma joined her in heaven. In some sense, Grandma's journey was much like Grace's journey, yet in many ways it was very different. As we watched Grandma in her last days and hours, we were reminded of Grace's last days and hours. The pain we felt then returned; it stared at us, made our hearts heavy, and weighed us down.
Grandma's long 89 year life, however, is hard to compare to Grace's short 5 years...Gram lived a full life; she enjoyed 3 children, 7 grandchildren and 3 great-grandchildren. Although we grieve this day and will for many to come, we thank God for the multiple blessings bestowed on the life of Evelyn Ruth Slater Asson.
My cousin Jenni took the following video on October 28, 2007, which was Gram's 88th birthday. Grace was obviously teasing her Great Grandma about being old as they enjoyed cake with my mom, "Beggy". Grace even gave Gram one of her tiaras to wear for the occasion. It was the last birthday they would celebrate together.
As I told my Gram goodbye, I reminded her that she was, in one way, very lucky. She would get to be the first one of us to hold Grace again. I reassured her that Grace would be waiting for her, wanting to hold her hand, showing her the way.
"The Lord will protect you from all evil;
He will keep your soul.
The Lord will guard your going out and your coming in
From this time forth and forever."
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..."
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…”
Posted by tamara in Grace
Happy 7th Birthday, Grace Elizabeth!
We miss you so much everyday, but on this special day, the day we first looked into your eyes and felt your tiny fingers, it is so difficult to be without you.....
It is hard to imagine what a birthday in heaven is like...do you get breakfast in bed? Do you get to pick the dinner menu? Do you get to ride a unicorn? Do you get the cake with the doll in the middle, the one you saw in the bakery and had asked for?
We love you, Grace! We hope that your birthday in heaven is a beautiful celebration of you...
"For whatever is born of God overcomes the world....."
1 John 5:4