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