News for the New Year

Merry Christmas and belated new year wishes to you all.  Hopefully you all had a chance to spend the holidays with those you love.  We didn't travel to Florida on Christmas like we did last year, and I wish we would have.  It was hard for us to put on a happy face and act like everything was just fine, especially when it seemed like most people moved on and celebrated Christmas just like nothing was different; when to us, Sophie's absence at the celebrations was the elephant in the room. 

For many people, Christmas is a time for giving and receiving gifts.  And it used to be like that for me.  But since Sophie has died, the idea of asking for gifts has become so trivial.  I wanted to scream when people asked me what I wanted for Christmas, because the truth of the matter is, that what I wanted for Christmas could never be bought at a store, or wrapped in paper and bows.  Don't get me wrong, I enjoy buying presents for others, and the anticipation of Christmas, but the commercialization of Christmas really bothered me this year.   I tried to stay focused on the reason we celebrate Christmas, and why we exchange gifts instead of asking for "stuff", and that helped me put everything into perspective.  

I would like to thank those of you who so generously made donations to our foundation or to St. Jude.  Those truly are the gifts that mean the most to me.

Somehow I keep thinking that the days will be easier, but they just aren't.  Like last year, the beginning of a new year stirs up many feelings.  A fresh start is always appealing, yet with each new day and new year, the days when Sophie was here get further and further away.   It's strange to think that it wasn't "last year" anymore that Sophie died.  I was reading a blog that mentioned the kids that died in 2008.  I was surprised that Sophie's name wasn't on the list, and then it occurred to me that she would have been on the 2007 list.  I honestly can't believe it's been so long.  There has not been one day, probably not one hour, nor even one minute that I haven't thought of Sophie during the last 15 months.

Over the week end, our little Sarah made the transition into a big girl bed, and for her that meant moving into Sophie's room.  It was bittersweet because we liked having a room in the house that was still Sophie's (although the rainbow guest room will always be hers) but at the same time, it was a transition for us that we felt ready for.  We know that Sophie would want Sarah to have her room, and Sarah is proud to have it.  Sarah has really been taking me by surprise lately as she tends often to mention Sophie out of the blue.  At times, I am not sure how much her little two and a half year old mind comprehends because she frequently tells me she wants Sophie to come here now.  While I was putting the bed rails on the bed in her new room (Sophie's room), Sarah was reading books to her dolls  and then all of a sudden she got quiet.  When I looked at her, she was staring off into space.  I said "Sarah, what are you doing?"  She just smiled at me and said "Sophie".  I asked her "What about Sophie?"  and she didn't say anything else, but went back to reading to her dolls.  I wondered if she felt Sophie's presence.

We were watching videos over the holiday and one of them had Sophie in it dancing with a large Dora doll/pillow.  She was about Sarah's age, and Sarah was convinced it was her in the video.  She became obsessed with the whereabouts of that Dora doll.  She kept asking where it was, and saying she wanted it.  Now I found that strange because she inherited more Dora toys/dolls than you could imagine from Sophie, and the one doll that seems to have disappeared was the one that she wanted.  She even started crying, and was really upset that we didn't have that doll anymore.  She said, "Let's go to heaven and get it."  It took us a while to calm her down.   I had forgotten about the episode, and a couple days later Sarah said to me, "Sophie is in heaven with a really big door."  I asked her "How do you know the door is big?"  and she told me, "Because she had to get that big Dora doll in with her."

We sold all of the ornaments that we had purchased!  Thanks to all of you who supported us again in our fundraising endeavor.  Next year, we will be doing this again and hopefully we will have the information out right before Thanksgiving.

Our foundation has mailed one check to a family fighting DIPG, so your dollars are being put to good use.  We have received several more requests for the financial assistance application, and hope to award more money soon.

We are in the early stages of planing a brunch to be held on Sunday May 10th in honor of Mother's Day and Brain Tumor Awareness Month.  If you are looking for a way to celebrate with Mom, why not support our cause as you dine with family and/or friends.  More details will be coming soon.  Please save the date.

Even though it is only January, and freezing here in Ohio, we are thinking about the 2nd Annual 5K on July 4, 2009.  Yes, we will be holding this event once again this year, so please save the date.  More information will be coming soon.

I would like to take this opportunity to ask for your support in helping another Cleveland child diagnosed with DIPG.  His name is Derric Williams and his website is http://www.caringbridge.org/visit/alotofloveforderric .  A fundraising dinner catered by Bubba's BBQ is being held on Saturday February 7th to offset medical costs and transportation. To see the flyer and for more details, please go back to the www.smilesforsophieforever.org homepage and click on "Smiles For the Season".  Thank you in advance for your support.

There is another local event coming up put on by the Prayers From Maria Foundation on February 21st.  It is the 2nd Annual Sunflower Soiree and it will be held at the Corner Alley in downtown Cleveland.  We went last year and had a great time.  For more information and to buy tickets, please visit www.prayersfrommaria.org

Finally, I would like to share with you the opportunity to participate in an event being held March 29th near Pittsburgh, PA by our friends Tamara and Brian Ekis of Reflections of Grace. This is a foundation that they started in honor of their daughter Grace who lost her battle with DIPG last Valentine's Day.  Marc and I are running this race in honor of Smiles for Sophie, and have started a fundraising page.  You can donate to our page by clicking on the following link.  http://www.active.com/donate/RaceForGrace2009/EQuayle  All donations will go towards to the 2nd Annual Race for Grace.  We will be truly grateful for any amount you can give.   If you'd like to join us, and register for this race, or donate to the cause, or read Grace's story, please visit www.reflectionsofgrace.org.  We thank you in advance for your support.

We hope 2009  is a year filled with many blessings for you and your families.  Please remember to pray for those children diagnosed with brain tumors.  I've heard of at least 4 families with children diagnosed with DIPG just in December of 2008, and I'm sure there are more. For a list of children affected by brain cancer, please visit www.icouldbeyourchild.org.

Merry Christmas Sophie!  We love you.

Exciting News

 
Wow, I have a lot to share!

First, I've included pictures of the awareness tree that we decorated in honor of children who have battled, or are currently battling brain tumors. I received more than 90 requests so there are almost 100 names on the tree. Obviously that is just a small percentage of the children diagnosed with brain tumors, but we felt this was an important step in raising awareness during this holiday season.

The other pictures you see are from the St. Jude Grizzlies House 5K that I participated in on December 6th in Memphis. I made the drive with two of my good friends and fellow Smiles For Sophie Forever board members, Kim Walters and Elizabeth Gedeon. These two overachievers didn't settle for the 5K,  they both ran the half marathon. I was happy to share the experience with them, and am so very grateful for their support and friendship and commitment to a cause that they know is so important to me.

The race was such an awesome experience. There were 14,000 total people registered to run in the 3 events, and 3,000 registered for the 5K. I am happy to say that, yes, I finished the run. You know from my last post that I was unsure of my ability, but on race day, I know that Sophie carried me. I definitely didn't win any awards and finished in 35 minutes and 22 seconds, but still I finished and felt good doing it. There were times when I thought I might walk, but never did. I actually finished the race feeling like I could have kept going. It was an emotional day and I worked hard to keep my composure for fear of having a break down. Of course being there without Sophie was tough, and seeing the hospital grounds and the look of downtown took me back to a time with Sophie. The 6th was also the due date for the baby I lost back in June. Again, the day was one I look back on and wonder how I survived, but once again, I realize that it is so much bigger than me. Looking around at all the people there supporting such an amazing facility made the 12 hour drive so worthwhile.

While I was there, I met up with Becky Jones (mother of Sam Jones) and her three friends from Michigan. I first met Becky at St. Jude back in the spring of 2007 while Sophie was receiving treatments. At the time, Sam (also diagnosed with DIPG) was there receiving a follow up MRI. Now, a year and a half later, Sam and Sophie watched Becky and me finish our 5K from their special place in heaven. I know they were with us throughout the race and I hope our attempts in raising money for St. Jude might make a difference in the treatment of DIPGs so that other children won't face the same fate. 

Sophie gave me many signs that weekend to let me know she was with us. From the rainbow colored arch that marked the start and finish line, to the number 11311 on the bib that my friend Kim wore, to the rainbow reflection streaming through the window in the ALSAC gift store, Sophie was there.

Kim and Elizabeth (who have run other races) said they were impressed with the organization and friendliness of the people running the event. Kim even said that she would tell someone considering training for a race, that this is the one to do. I think that speaks for itself. I plan on being there again next year. If I was really ambitious, I might shoot for the half marathon, but the realistic part of me is sure I will be running the 5k in 2009.

I want to thank all of you who have given me financial and emotional support. Today I mailed the envelope with exactly $6500 to St. Jude, and I couldn't be more proud.  Lately I've really realized that it is in giving that we receive, and I owe this to all of you.  I appreciate all of you who continually asked me how the training was going (even when it wasn't =), those of you who called or emailed to say "good luck" and also those of you who showed me your support in the form of a financial donation to St. Jude which will make a difference in the lives of children receiving treatment. Did you know that it costs over 1 million dollars A DAY to run St. Jude? So thank you for your support. It means more than you know.

If you are in need of holiday gift giving ideas, please consider shopping from the Smiles For Sophie gift store. We have some cool things that would make great gifts and help us raise awareness. We are still selling ornaments, so you can go to www.smilesforsophieforever.org and look under "upcoming events" and find out how to order one.  Another way that your holiday shopping can benefit the foundation is by clicking on the "igive" link under "ways to help".  This is an online shopping portal that gives a portion back to the foundation.  There are many stores to choose from, so if you plan to do some shopping online, it would be great if you would use igive.

Another foundation dedicated to finding a cure for DIPG is selling holiday cards. Here is a last call for this year's cards.
The Cure Starts Now holiday cards were designed
by three wonderful kids: Andrew Smith from Michigan, Ellie Willaert
from Minnesota, and Caleb Spady from Oklahoma. All three kids are
battling brain cancer and have put their heart and soul into
designing truly unique cards to represent The Cure Starts Now. Please
help us honor these kids, and every child battling brain cancer.
Proceeds go towards funding brain cancer research at respected
children's hospitals nationwide.

The holiday card pack contains 18 cards including a sampling of each
of the 6 custom designed cards for $18. Each card tells a little bit
about the child who drew the picture and about the need to fund
pediatric brain cancer research. Order by Thursday and get them by
the end of the week- There is still time! Please support brain cancer
research while spreading holiday cheer. Cards can be purchased at
www.thecurestartsnow.org under "Merchandise"

Lastly, I have some news that I have been waiting to share since we formed the foundation and set our mission. We are finally ready to begin awarding grants to families battling pediatric brain tumors. If you are the parent/guardian of a child with a brain tumor, you can request an application through our website. It's been about 6 months since we began our fundraising efforts, and we are so excited to be able to do one part of what we set out to do.  To request an application, go back to the www.smilesforsophieforever.org home page, and click on "Grants for Families" in the top tool bar to find out how.

Obviously, we want to find a cure. That is why we give to St. Jude, as well as other organizations that are raising money for research grants. If we knew the cure would be found soon, we might consider allocating all our money to research, but the fact is that while we raise money to help search for the cure, children will continue to be diagnosed with brain tumors and we can't ignore the financial challenges families face while caring for their sick children. In the next couple of months we will be adding a spot to our website so that other non profits committed to finding a cure can inform us of their efforts to raise money for research. Then the Smiles For Sophie Forever board will meet to allocate these funds.

We are so so excited to announce this to you, our loyal supporters. We feel this is so fitting given the season and we will certainly keep you updated with information about the families that we help.

Thank you again for your continued support. We appreciate all the kind wishes, holiday cards, and thoughtful emails to let us know you remember us and how difficult the holidays are without Sophie.

We in return wish you all a Merry Christmas and a blessed New Year. Please keep all the families who have lost children in your prayers, as well as those children and families who are currently fighting cancer.

God Bless You!

Rainbow Christmas Ornament

Your response for the rainbow Christmas ornament was overwhelming. The demand has far exceeded both our expectations and supply.

To meet the numerous requests, we contacted

several companies and suppliers. all to no avail.

We were able to find another rainbow ornament, different in size, construction, material, color, and cost.

The new ornament, in generous supply, still features our signature rainbow (see photo above ) and a Smiles For Sophie Forever ribbon for hanging. We've taken the liberty of substituting this ornament for the original at the same cost to you. Most orders received after December 4 will be placed using the ornament pictured here. Please contact Emily at quayleem@oh.rr.com before Wednesday, December 10 if you do not want the newer version. Your check will be returned. Orders will continue to be filled with our new supply. Thank you for your support and interest, so very fitting in the spirit of the Christmas season. God bless you.

With Gratitude

Once again, I wanted to post on the 6th, but just couldn't do it.  I feel like I say the same things every month.

Not what we say about our blessings, but how we use them, is the true measure of our thanksgiving. 
~ WT Purkiser

November 6 came and went without a post. Many times posting something positive can be difficult, so I don’t post at all. I want so badly to share "happy" thoughts. We stay busy hoping to block out the pain. A year later, you would think I would know that doesn’t work, and it’s better to just acknowledge it. Yet sometimes letting the pain “in” is so raw. I long to be happy, yet I still have the nagging feeling, heavy in my heart, when I think about the 6th of each month. Here are a couple of the things I have been doing lately to stay busy.

The picture you see at the top of this post is our first Christmas ornament which is now for sale. We debated about using Sophie’s rainbow artwork for the ornament, but decided that for the foundation’s inaugural year, a true rainbow would be best. The ornament is a three inch glass rainbow ornament marked 2008 and hung with a Smiles For Sophie Forever ribbon.  We have a limited number; so if you’d like one, please order it soon. I know I am biased, but it sure is a pretty little thing and I know Sophie would approve. Each ornament is $10.00 and shipping will be $5.00 per order (regardless of how many you buy.) To order, please send a check to Smiles For Sophie Forever 31722 Leeward Ct. Avon Lake, OH 44012. Please include a phone number or email address so that we can contact you if we run out of ornaments.

All proceeds go back to the foundation so that we can further our mission.

We are also in the process of collecting names for an “Awareness Tree” that will be on display throughout the holiday season at the University Hospitals Medical Center on Clague Rd in Westlake Ohio. If you know a child diagnosed with any form of pediatric brain cancer and would like them included in the tree, please email me at Emily@smilesforsophieforever.org the following information about that child:
Name
Age
Type of cancer

On the 6th of December, I won’t be posting because I will be in Memphis at St. Jude participating in the 5K. I’m anxious about the event, but hopeful that I will be able to complete the run. I’m not a runner; never have been, so finishing it is my goal. I’ve had a few set backs in my training. From knee, to ankle, to burned hand, to tinnitus, I’ve had my share of obstacles. I am looking forward to the challenge, and know that if Sophie endured what she did, I can suffer through the pain of a mere 3.1 miles!!!!

As of today I have collected around $6,000 for St. Jude, and I am grateful for everyone who has supported me. I know times are tough right now, and so your donations mean even more. I am still collecting donations and I can mail them in to St. Jude up to two weeks after the event. So if you feel called to give, please send the check to me (made out to St. Jude) to 31722 Leeward Ct. Avon Lake, OH 44012.

This time of year is one of so many emotions. I can’t believe it is the third year that I placed the thanksgiving centerpiece on the table that Sophie made in preschool, yet she was only here for one of those three years.

Recently I had a bad habit of getting on the computer after Sarah was in bed. I would catch up on all the posts from the DIPG Yahoo Group and read about the kids newly diagnosed, those doing well, those in progression, and those in the final stages. (And I wonder why I still have a terrible time falling asleep each night.) As if thinking about Sophie wasn’t enough, I went to bed thinking about all of the other kids and their families. When I think of these families and children, it makes me remember…

I remember how extremely hard those days of progression were. I remember them like yesterday, and I think I always will. I remember how hard it was to be patient and giving all the time. I remember how Sophie always wanted me to hold her. I remember how heavy she was, and how difficult it was for me physically to lift her and carry her, and support her weight. I remember feeling guilty for taking the time to take a shower and dry my hair. Even though those showers where the only time when I could cry and cry and Sophie would ‘t see me. I remember how my heart felt to be torn open each time I would look at her and she would reach out her left arm because she could no longer speak. I remember that was her only way of communicating. I remember how she would get frustrated with me when I would get out our communication board when I didn’t know what she wanted. I remember realizing that what she was really trying to tell me could never be found on a communication board. I remember that all she wanted was for me to be close. I remember how she would rub her belly (that was how she said she was hungry) and I remember feeling sad as all I could offer her was another bowl of soggy Life cereal. I remember the laundry, the cleaning, the care Sarah needed. I remember trying to juggle it all. I remember wondering how I could get through it. I remember thinking that there is nothing worse than a child with cancer. I remember how tired we all were, and how I begged and pleaded with God to give me the tumor because it just wasn’t fair. I remember the tear that was falling from Sophie’s eye the night she died. I remember learning the true meaning of stress, and the true meaning of love.

And despite all the hard times and “bad” memories of Sophie’s illness, I am thankful for that lesson of love. I am thankful that I have friends and family who support me in doing what I need to do to make sure Sophie did not die in vain. I am thankful for those who seem to know when to offer to help, as those offers always seem to come in when I am feeling discouraged, overwhelmed and not sure if I could ever do enough to find a cure. I am thankful for God’s guidance and encouragement, as there are days when I want to curl up in bed and stay there, and let someone else fight the fight. I am thankful that I got a glimpse of the lesson here on Earth, and I am thankful for God’s patience as I learn it. Happy Thanksgiving to you all. May you realize all you have to be thankful for. Be grateful for the little things. For one day you will look back and realize they were the big things.

Do not get tired of doing what is good. Don't get discouraged and give up, for we will reap a harvest of blessing at the appropriate time. 
~ Galatians 6:9

Please say a prayer for all those families and children fighting this cancer.  That they may live in the moment and enjoy the day and all they DO have to be thankful for.  

Please pray for those who have lost children.  Every day is hard, but holidays are even worse. Pray for peace and comfort, and signs from the children who are so dearly missed.

Feeling gratitude and not expressing it is like wrapping a present and not giving it. 

~William Arthur Ward


365 days

365 days.  As of last night at 11:55 pm Sophie has been in heaven for 365 days.  For me, it's been 365 days of longing to hold Sophie, to rub her back,  to smell her hair.  I miss her so much, more than I can explain.  At times the pain of having a broken heart is unbearable, but other times I will read a card or a email, or have a conversation where someone tells me how Sophie or our family has changed them for the better, and it makes the pain more tolerable. On one hand, I want her back with me on this Earth, but on the other hand I realize that her being in heaven -already for 365 days - makes me one blessed mother.  I believe that is the best achievement one can hope for their child, and to know that Sophie is there, provides some comfort.

Yesterday was tough, I thought about Sophie every minute.  I had plans of posting last night, and when I had a minute, I knew I was too emotionally spent to write anything.    During the day, I played with Sarah, and during her nap, I exercised and tried and tried to distract myself with housework and organizing.  As hard as I tried to suppress the sadness, there were times throughout the day where the tears would flow.  We received many thoughtful cards and many beautiful bouquets of flowers, and as wonderful as they were, I was reminded again of the days after Sophie's death because that was the last time we had received so many cards and multiple bouquets of flowers.  But likewise I was reminded of the love from our friends and family; and so we say thank you to those of you who sent cards, flowers, or email messages.  Your support continues to provide us comfort and means more than you know. 

My fellow "women of faith" in Cincinnati had a memorial mass for Sophie at IHM at noon on Monday.  It may seem strange, but during that time, Sarah and I were completely consumed playing and before I knew it we had missed lunch.  It must have been their praying that kept my thoughts from being so focused on Sophie during that time.  The picture I've included was sent to me by them; it was where they met to say the rosary at 7:00pm, surrounding  the brick they sponsored on the grounds of IHM.  How beautiful!  Thanks ladies.

A special thank you to the Ekis Family for sending Sarah the adorable webkinz pink pony (which we named Grace) along with the gorgeous bouquet. I smiled watching Sarah playing with it, and she held on tight to it all day and night.  Thank you for thinking of her on a day whose significance she doesn't know, but will come to know in the years ahead.

Another special thank you to my Mom and Kristin who planned a casual candlelit service at Sophie's grave site last night.  Many weeks ago Kristin had asked me how I felt about it, and I wanted to talk to Marc before we planned anything.  Well I dropped the ball, and when the subject was brought up again on Sunday, we made a quick decision to do this because we believed it would be meaningful and helpful for us to be surrounded by our family and friends while we prayed and remembered Sophie.  It was planned last minute, but lovely and touching none the less.  We held candles with rainbow wax catchers and we left rainbow roses at Sophie's grave.  We listened to Sophie's favorite song "Women of Faith." Marc shared some moving memories of Sophie, and others in attendance offered their sentiments as well. To close the "ceremony" while the sun had set, my Mom read a poem and we listened to the song "Somewhere Over the Rainbow."  As we stood there listening, two flocks of geese flew directly over our heads honking loudly.  I, (and we) took it as a sign that Sophie was there with us.  (I would venture to guess that at that moment, maybe one of those women of faith praying the rosary in Cincinnati was asking Sophie to give me a sign that she was there....)

As the days continue to pass, we continue to miss Sophie, and continue to wonder why.  At the same time we continue to be blessed and surrounded by people who care and support us.  And so we do our best to use this support and inspiration to try and make a difference in the world of pediatric brain cancer.  

We currently do not have any major upcoming foundation events, but I want to ask for your support in another way.  I have decided (with the support and encouragement of couple of my loyal friends) to run the Grizzlies House 5K on December 6, 2008.  This event is part of the St. Jude Marathon which takes place on the St. Jude campus in Memphis, TN.  I have never been a runner, so the full or half marathon was way too daunting.  I figured the 5K was an attainable goal, and a way for me to give back to the amazing facility that cared for Sophie after her diagnosis.  I registered for the event and to be a "St. Jude Hero" with the intent of setting up a fundraising web page.  However, when I was told that only 85% of the money raised goes to St. Jude, I decided to go about fundraising using this blog and paper mail communications instead of using the website.  I'm hoping that we can set up a "fundraising update" on Sophie's web page where we can inform our supporters of our efforts.

I'm asking you to consider sponsoring me in my efforts.  All of the money that I raise for this event will go directly to St. Jude.  Any amount that you can send will be appreciated by me, and helpful to the families and kids of St. Jude.  I've tried not to think too much about how I will feel being back in Memphis and at St. Jude.  Obviously the last time I was there, Sophie was with me, she was showing signs of progression and we had received the news that her MRI showed enhancement.  We were making the most of every day we had with Sophie and those days are so clear in my mind.  I know it will surely be an emotional trip, but I also know that God will continue to give me the strength I need to get through the week end with more smiles than tears.  I'm counting on you to give me the financial support that I need to make my effort worthwhile and beneficial to St. Jude

If you feel called to support me, please make checks payable to St. Jude, and send them directly to me so that I can track these efforts.  My address is 31722 Leeward Ct. Avon Lake, OH 44012.  I thank you in advance.

Marc and I were really hoping to have the Smiles For Sophie Forever board of directors in place by now.  It was our hope that we would currently be in a position to provide financial support to families that are batting pediatric brain cancer.  We have funds available, but unfortunately we are still working to create our board.  We will wait to post our "application for help" to Sophie's blog until after our board is formed.  More details will be coming in the very near future.

Although we haven't given any money directly to families yet, we have, in honor of Sophie's 365th day in heaven, made a $5000 donation from the foundation directly to St. Jude - as a way of fulfilling a part of our foundation's mission.  So we thank those of you who have supported us financially making this donation possible.

While I am saying thanks, I want to thank those of you who came to the 2nd Annual Family Fall Festival that was held this past Saturday.  Sophie provided us with another beautiful day and the smiling faces of the kids as they participated in the activities made me feel so proud of the work that the dedicated planning committed did to pull the day together.  It truly was awesome.  I can honestly say that every activity there was something that Sophie would have enjoyed, and that inspires me.

So I thank the girls who worked countless hours planning (you know who you are) =)  and their families for their help.  I also thank Holy Spirit for once again allowing us to use their great facility, the volunteers who helped staff the event, the vendors, the local businesses who donated their goods, the performers, the sponsors, the K of C, the pony owners and preschools for all their help.  I feel as though I am forgetting to mention someone, and once I realize who, I will post again!  The event raised over $4000 for the foundation and we are so grateful.

Reflecting on the past 365 days, I hold tight to the promise that God is with us always.  If you told me 10 years ago that I would have lived through what I have in the past 2 years I wouldn't have believed you.  The day Sophie died, a part of me died too.  I honestly felt like there was no way I could live without her.  But still, here I am still living without her 365 days later.  When I stop to wonder how I am surviving, it is clear to me that it is something I am only capable of because I know and love God and am confident of His plan and of His love.

We thank you for your support and prayers on this first anniversary of Sophie being in the arms of God.  

We pray for you that you may feel the love that we feel in some way or another.  Kiss and hug those little ones in your life, because life goes way too fast, and you never know what tomorrow might bring.

Sophie,

I miss you, I love you.  You are an inspiration to me and you will be with me forever.  Daddy says, "You're awesome, you're the best."  Shine on little star.

xoxo

Mommy

Please Read and Share with Everyone

Today is October 1st.  And the first day of Breast Cancer Awareness Month.  I was reminded of this on the Today show this morning.  I needed this push to post the following letter that was written by a mother whose son is currently battling the same tumor Sophie was this same time last year.  She wrote it at the end of September and I've been meaning to share it with all of you.

This family lives in Michigan, and the mother, Sandy, who is a member of the DIPG Yahoo Group, received her breast cancer diagnosis just before her son's diagnosis almost a year ago.  I post this because last month was Childhood Cancer Awareness Month, yet I saw no national coverage.  It is so disheartening because right now childhood cancer is grossly underfunded when compared to other types of cancer.  We need to increase funding, and equally important, increase the awareness of childhood cancer.

You can read her letter at www.justonemoreday.org

It is on the home page, just under the gold ribbon.  (I tried and tired to paste this directly into the blog, but I haven't had success.)  Please take the time to go to this site and read her moving story.

I encourage you to share this with anyone and everyone you know.  Childhood cancer stinks. There is nothing worse.  I wouldn't wish this on anybody and I can only hope that one day our children will have more hope for a cure.  Especially children with Sophie's diagnosis, where the current survival rate is less than 1%.

On a happier note, our Family Fall Festival will be held this Saturday at Holy Spirit Church in Avon Lake from 11-4.  The planning committee has been working very hard to plan this day.  There are so many cool activities planned, and the minimum donation is only $10 per child.  There will be pony rides, multiple bounce houses, performances, a hay climb, loads of crafts, face painting, hair glitter, cookie decorating, food, drinks and bake goods for sale, and even vendors selling their goods.  Of course we will also have the Smiles For Sophie Forever items available for purchase so you can help us raise awareness about pediatric brain cancer.

The weather is supposed to be "fall perfect".  We would love for you to bring your kids out to join us for a fun filled day.  Last year, this was Sophie's last real "fun" outing, and I remember how much we could tell she loved it...even though she could no longer talk or smile.  I hope you take this opportunity to make some happy memories with the little ones in your life.  You never know what tomorrow brings so make the most of the opportunities you are given.

God Bless you all.

Childhood Cancer Awareness Day is this Saturday

According to the American Cancer Society, more than 10,700 new cases of cancer will be diagnosed in children under age 15 this year.  And while rare, cancer is the second leading cause of death in children, exceeded only by accidents.  

We know how deadly this cancer is.  We know that it can happen to anyone, because it happened to us.  For us, we focus on pediatric brain cancer, as diffuse intrinsic pontine glioma is one we are all too familiar with.  On this national day of awareness we ask that you take a minute to do something that might help lead to a cure.

You could write a letter to a Congressperson asking for research funds.  You could make a donation to an organization (like Smiles For Sophie Forever, or St. Jude) that is committed to curing cancer.  You could raise awareness by telling just one person about Sophie and/or all the other children afflicted with cancer. And most importantly, you could say a prayer for the children battling cancer.

We also ask you to take a minute to give thanks for the healthy children in your life.  Look them into their eyes, hug them, kiss them,  tell them you love them.  Let them know there is nothing you wouldn't do for them.  Tell them you will be with them and there for them no matter what.  We learned first hand how precious life is, and how cancer changes everything. As parents we want to fix things, and make things better.  However, cancer is often times something that cannot be fixed.

As it is with life, one person can't do everything, but everyone can do something.  Please do something to recognize National Childhood Cancer Awareness day, this Saturday September 13, 2008.

God Bless.

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.

Steak Fry!!

You’re Invited!!

What: Steak Fry for Smiles For Sophie Forever

Catered by Deluca’s Place in the Park
There will be kids activities too: bounce house, games, etc

When: August 30, 2008 at 3:00 p.m.

Where: Michelle Redfearn’s
2821 North Hayes (Centennial Park off Detroit)

Avon, OH

Cost/Donation: $25 per person includes (proceeds to benefit SFSF):
14oz strip steak, baked potato, salad, roll, and beer

$5 kids option: hot dog, chips, and drinks

Deadline: Headcount and payment needed by Thursday, August 28th

Please mail checks to:
Smiles For Sophie Forever
31722 Leeward Court
Avon Lake, OH 44012

Feel free to pass this invitation on to family and friends!!

For more information, please contact Michelle at redfearn_michelle@yahoo.com

Time Marches On

I feel like I start each post apologizing for not updating sooner. The 6th of August came and went and I couldn't update. As always, I have been meaning to. Usually my excuse is time, but this month when I sat down to write, my thoughts were those of despair and sadness so I have been putting off writing.

We're approaching the one year anniversary of Sophie's death. I cannot believe how fast time goes by. I still say it seems like I haven't seen Sophie in many years, while at the same time I remember every detail about her as though she was just here. This time last year was not a good time, as Sophie's cancer was progressing fast and she seemed so helpless most of the time. Labor Day was the last time I heard her voice. It was very slurred and hard to understand, but at least she was talking. Then one day she woke up and could make no sound. Thinking back to those times pains me because I still wonder and wonder about how scared she was.

It still is not getting any easier. I long for her, to hug her, to smell her, to hear her. Many times I hold the nightgown that she was wearing when she died close to my face. I used to be able to smell that and feel close to her, but after 10 months, the "Sophie smell" is going away and all I have left is the nightgown. They tell us that grief is a process and that it takes time to heal. I don't know if I believe that. Right now, time is doing nothing but making me miss her more and more.

I got a post card in the mail from Bob Evans. Sophie was part of the birthday club. It was wishing her a happy birthday and said to bring the postcard in for a free kids meal. That was really hard to receive. It symbolizes how life goes on for everyone else, but my world without Sophie stands still.

It's hard to come to terms with the fact that this fall would have been such a big year for her. Sophie would have been starting kindergarten and she was so excited to ride a bus to school.

Earlier this week the Avon Lake Early Childhood PTA was having an ice cream social. I went thinking I would be okay. I knew it was going to be at the "Lake House" which is where the picnic was that we all went to the day Sophie died. I had never been in that building before the picnic, and obviously hadn't been in there since. That building was the last place Sophie went, and it was where she ate her last meal. I had to get out of there before the sadness overwhelmed me. It's those things that I can't imagine not feeling or "getting over" one day.

I was driving with Sarah in the car this evening and I told her to look out at the pink, red beautiful sky and sunset. I then said "Sophie did that." I know that is something hard for a two year old to understand, but we talk about Sophie all the time, so I didn't think it would be a big deal. Sarah said to me "Fofie, heben. Come here now." And then she started crying saying, "Mommy call Fofie, Mommy call Fofie, come here now, no heben, no Jesus." I was so sad. Sarah wanted to see Sophie and of course I couldn't explain why she just couldn't "come here now". I think about how much fun those two girls would be having and I'm saddened by the loss in Sarah's life, especially because it seem like she is finally starting to realize that "Fofie" once really was here.

Many of you know of my pregnancy that ended at 15 weeks in the beginning of June. I didn't mention this on the blog before because I am not one to try and bring more attention to myself, but I bring this up because I realized that so many of you were so kind to me and sent such nice cards and showed your support. I feel like I never thanked many of you for your support during yet another difficult time. I told Marc not many people have 3 children in heaven like we do. (I miscarried a baby at 12 weeks when Sophie was just 7 months old.) When I feel sad, I pray to those little saints and ask them for guidance. I know that Sophie is an amazing big sister to those in heaven with her, and that makes me smile.

And when I'm feeling sad, I remind myself how blessed I am to have my family and so many caring friends in my life. One time my sister said to me, "you've met some awesome people in Ohio" and it's true we really have. I know that surviving this ordeal would be a lot more difficult without people who surround us with their love, and for that I am thankful. So, it's not all doom and gloom here.

We are excited to announce the 2nd Annual Fall Family Festival that will be held here in Avon Lake on October 4. Please click on "Fall Festival" under Upcoming Events on the website to read more about it. Some amazing girls are putting this together in record time, and it is sure to be loads of fun for the kids. I remember how much Sophie liked it last year. Even though she could not longer talk, eat, smile or support her body weight, I will never forget when my Mom told me, "I could tell Sophie was smiling by looking in her eye."

Within the next week or so, we will be selling 20% off coupons for Macy's. They have an event called "Shop for a Cause" and this year the Smiles For Sophie Foundation will be participating. It is really easy. All you do is buy a shopping pass from us for $5.00 and we will give you the pass to use at any Macy's in the country and you will receive 20% off your purchase all day. Macy's will be having some raffles and prizes of their own at each store. It's a quick way to donate to our foundation and get something back in return. Amy Schmidt will be heading up this fundraiser. She will be accepting cash or checks for payment. If you would like to purchase a shopping pass, or if you would like to help sell passes, please contact her at schmidthouse5@oh.rr.com or 440-930-2447. (Please see the SFSF website for more information.)

I've been working on putting a slide show together with pictures from the race. So many generous people have given me CDs with hundreds of pictures on them. I am trying to wean out duplicates and put them in some sort of organized fashion. When I do, I will post them on the website, or on this blog.

We still have race t-shirts available for $5. We ordered a few more because many people said they wanted one. Some people have actually purchased them, but we haven't heard from some of the others. So, if you want a t-shirt from the inaugural Sophie race, please email or call Kristin at pkvaneuwen@oh.rr.com or 440-781-1179.

Thank you all for your continued support and prayers.