Almost a Year...

I can't believe it has been 11 months since we lost Sophie's physical presence.  The next time that the 6th of the month rolls around, it will have been one year.  One year.  That sounds so long.  

I can't believe it.  I want the days to stop going by.  

I want to go back to last year. Will the pain ever go away?

Will I ever not feel angry when I hear a mother or father "yell" or raise their voice at their child, because I long to tell them how blessed they are that their child is still with them?  Will I ever stop feeling guilty because I couldn't do anything to help Sophie?  Will I ever have a restful night's sleep? Will I, will I, will I...

These are the questions that continue to flood my mind as I try to deal with the grief of losing Sophie.  I don't want another family to ask the questions I ask.  Recently I joined the Yahoo DIPG group.    Somehow I hope to be able to help other families fighting this battle, and once we have our application process finalized, it will be a great way to communicate our support to families.  However, the contact that I have had with the families currently faced with a DIPG diagnosis, makes me so sad.  I feel so helpless because most of the parents are in the same shoes we were in 2007.  They are searching for answers and there are none.  They are asking questions to doctors, and to themselves, and there are no answers that can help them.  They are becoming all too familiar with words and phrases like , protocols,  medi - ports, blood counts, palliative care, relapse, steroids, clinical trials, withdrawals, MRIs, sedation, NPO, and so on and so on.  I feel their pain in such a deep way and I long to do something; something, so one day they won't feel how we feel every day.

I've been getting out the Rubbermaid tubs to make the change from summer clothes to winter clothes in Sarah's closet.  These "jobs" that I have, bring back so many memories as I pull out each outfit that Sophie used to wear, and I can vividly remember a specific time that she wore it.  Sarah is reminding us more and more of Sophie each day.  So many people tell us how much she looks like Sophie, and her personality is similar as well.  She is very shy around new people, which is how Sophie always was.  She repeats old sayings that I used to say with Sophie, and she sounds just like her.  The other day she was out with Marc and she called me on the phone.  I couldn't believe how much she sounded like Sophie.  I instantly thought of the time when Sophie was two, and she and Marc called me while I was out running errands.  I sang "Twinkle Twinkle" to her the entire drive home, and when I walked into the house and upstairs, she was falling asleep in Marc's arms as I sang.  

Sarah plays with Sophie's old toys, and begs to watch video after video in Sophie's Dora collection.  While Sophie was sick, TV was what she loved, and I believe she collected over 30 Dora DVDs during that time.  I remember which ones she liked the best and how she would sing along to the songs.  I hate that Sophie is not here to play with Sarah.  I can't even begin to imagine the fun they would have with each other.  

The other day I needed a box to mail a package, and the biggest one I could find in my stash was one addressed to "Ms. Sophie Quayle".  I had saved it from last year after Sophie received a collection of toys in the mail.  Those little things are so hard.  And they happen all the time...each one as hard as the last.

So I can't say it gets easier.  The grief is a part of me.  Something I will always have.  Some days I handle it better than others, but it's hard to explain , or to understand unless you've experienced this loss.

We continue on with the foundation channeling our grief in a way to somehow, someday help families and find a cure.

We want to thank our supporters who came out to the golf outing in Grand Blanc Michigan on August 18.  It was a gorgeous day, and everyone had fun.  We gave Smiles For Sophie Forever bracelets to each of the participants, and it was touching to see so many men (and women) wearing their pink bracelet at the end of the day.  It means so much to see people showing us their support by wearing their bracelets.  We notice them, and it lets us know you are still with us in this journey, 18 months later.  Thanks to Marc's Mom Kathy, and Dad Bob, and brother Brett and sister-in-law Amy for planning and organizing this event.  

Michelle Redfearn and Chris from Deluca's Place in the Park, hosted a delicious steak fry for the foundation on Saturday August 30th.  Thank you Michelle.  The steaks were delicious and the company was great.  Thank you to those of you who were able to attend.  We are so excited that Deluca's will be the location for our winter 2009 fundraiser.  More details will be coming soon.

Tamara and Brian Ekis and their boys Colin and Garrett (parents and brothers of Grace Ekis) made the drive from Pittsburgh for the steak fry!  It was great to see them and refreshing to talk to a family who honestly understands.  Tamara was able to share Grace's story with some of the people in attendance, and I think it helped show that these are real girls, real daughters, who were once here, but who were taken from this Earth after their battles with DIPG.  They are such a nice family and one I wished we could have met in a "normal" situation.  Their boys were so great, and Sarah had fun with them!  I mentioned earlier how shy our Sarah is becoming, but the Ekis boys won her over with no efforts.  I was impressed, as I didn't know how Sarah would react to teenage boys.  She was laughing and tickling them, and they were tickling her.  It was sweet to see.  I know they were great big brothers to Grace.

We are in full swing with the planning of the 2nd Annual Fall Festival here in Avon Lake, OH.  

A full day is planned with a wide variety of crafts, activities and performances available for children age 2 and up. Admission for each child is only $10.00 and the event runs from 11-4. There will be food for sale, and a number of vendors on hand to sell their creations.  We will also be a feature in the Avon Lake homecoming parade to be held just prior to the start of the festival.  If you would like more information, or would like to volunteer, sponsor, or sign up as a vendor to sell, please contact Elizabeth Gedeon at gedeon4@oh.rr.com.

We are also still selling the Macy's Shop For A Cause coupons.  Please see the Smiles For Sophie Forever website for more information.  If you are willing to sell these coupons to your friends, family and/or co-workers, we can send you some to sell.  They are only $5.00 and entitle you to 10% or 20% off your purchases (some exclusions apply) all day September 20th at any Macy's across the country!  ALL the proceeds go to our foundation.  Macy's will not have their usual 15% off coupons in the paper that week end.  Please contact us for more information.

I sat and watched Stand Up to Cancer on Friday night.  I thought there was some very important information included about how we are all affected by cancer in some way. Obviously some of us are more closely affected than others.  I did think that not enough was said about cancers (like DIPG) for which there has been NO progress.  Hopefully some of the millions of dollars that was raised will be allocated for pediatric brain cancers.  I was thinking how valuable it would be to DIPG research if we could find someone of celebrity status to promote our cause.  So many people still have not heard of DIPG and it's grim prognosis.  We need to hear about it as much as we hear about other forms of cancer so that some progress can be made.  Unfortunately TV and radio time is expensive, and hard to come by.  One day when I feel like I have a handle on the logistics of running a foundation, I will spend some time contacting celebrities, asking them for their help.

I realize that we have many people who follow our website from the Cincinnati, Ohio area, and so I thought I would share with you an opportunity to help raise funds for pediatric brain cancer.  Ironically enough, they was a little girl named Sophie who was from the Cincinnati area and died of a different type of rare brain tumor.  Her family is holding it's second "Sophie's Angel Run" on Sunday, September 28 at 1:00 in Bridgetown, Ohio.  Also, ironic is the starting location of the race - St. Jude Church in Bridgetown, OH.  You can visit their web site to read more and to register for the event.  It is www.sophiesangelrun.org.  The Meinhardt family drove up here to Avon Lake for our race on July 4th, and we will be heading down to support them in their endeavor. It would be great to see some of our old friends from Cincinnati at the event.

Well, we continue on in this journey, reflecting on where we have traveled the past two years. We have had our share of obstacles, which have come and gone, but the one thing that has remained is our faith in God, and the support of our family and friends; for that we are forever thankful.

Below is a youtube link to a slideshow of the race.  I'm disappointed with how it turned out because it is so blurry.  Somewhere in converting the format, we lost a lot of detail.  Never-the-less, some of the pictures are cute. One day, I will fix it.  One day...

I saw this somewhere, and I thought it was worth sharing.  

"God, please give me patience to deal with my blessings."

God Bless you all.