Reflections Of Grace latest weblog entries
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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."
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…”
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…”