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Apr 20
2012
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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
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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
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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
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..."
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. Dance on, sweet angel... "Pursue love..." 1 Corinthians 14:1
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. 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 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....
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..."
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…”
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
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!"
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,
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. 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. 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.
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 |
