I know today is not a "significant" date as far as milestones go for living without Sophie. This month I had decided not to post on the 7 month anniversary just because I wanted to wait until it had been 7 and a half months, as a reminder of how short 7 and a half months is, and that Sophie only lived 7 and a half months after being diagnosed. (Obviously it hasn't quite been 7.5 months just yet, but I wanted to post anyway.) Many people say to me that they can't believe she's been gone 7 months already; like the time has gone so fast. There are times when it seems that way to me. But for the most part, I feel it, and remember it like yesterday.
Think back to what you or your loved ones were doing on October 6, 2007. If you, or your loved ones were given Sophie's diagnosis on a day in your "normal lives" of October 6, today you/they would be suffering like Sophie, and would be on your death bed paralyzed in every physical sense, and about to take your last breaths. Most of us can't even remember what we were doing 7 and a half months ago. But a DIPG diagnosis changes that. You count every day. Not wanting to get to the 9-12 months past diagnosis knowing that the end may be near. Then suddenly you take a turn for the worst, and then you are gone. That is what DIPGs do, and that is why a cure needs to be found. Everyday I remind myself that 4 years, 3 months, and 2 days is WAY too short of a life time. My prayer is always that something good might come from Sophie's pain and suffering. Right now, we focus our efforts on the foundation, easing the burden on other families and raising money to search for the cure.
I want to say thank you to all of you who commented to my last post describing Sophie's last moments with us. From all the comments and emails, I realized just how touched so many people were. Many people have commented that it made them more aware, more appreciative, more dedicated to the cause. When I write these posts, I do so with the goal of having something good come out of it. I don't do it as therapy for me. I don't do it so people we feel sorry for us. I do it to educate the people about the disease that took Sophie's life, and to encourage people to listen to the calling to help try to save another child's life. I thank those of you who show us your support by responding to the blog and encouraging us to continue to share the deep emotions that make this storm so real to the many of you who admittedly say you can't even begin to imagine living this nightmare. And we also want to say thank you to those of you who have made positive comments about the new site. Just the other day, a friend of mine, said she sometimes goes to the site just to listen to the song and look at the pictures of Sophie. Again, we are honored that you take the time to comment.
Race planning is coming along. Soon I hope to post all the details for the kids activities as well as some of the door prizes and fundraising incentives. All of our committees have been working so hard to make this an unbelievable event; not just for the runners/walkers, but also for the children. After all, it is in a sense a "birthday celebration" and I know Sophie would want the kids to have fun. We have received many race registrations, but are still looking for so many more. I wasn't surprised to see my Mom, Dad, sister and brother among the first to register. They have been there to support me through thick and thin. I was pleasantly surprised (and also very excited) to see the names of people who I haven't met registering. And I have to say I was surprised that many of you who have told me you plan on participating haven't yet registered. (You know who you are =0) and it only take a few minutes.) As Kristin and Katy's Team Fundraising page is entitled "DIPG - Don't Ignore, Please Give. I encourage you to embrace that motto and give to the cause that could one day save a life.
Magnets are still for sale on the site, for those of you who are interested in purchasing one for the cause. If you live in near my Mom in Trenton, MI, or here in Avon Lake, near me you can now purchase them directly from one of us. My sister is in the middle of a move to Washington D.C. so she has temporarily given us the supplies to manage while she gets settled.
I have to say that I have some sad news. Little Ashley Boross lost her brain cancer battle this morning. Everytime I hear of another child dying, my heart aches. It aches for the parents left to grieve, and it aches for the life lost and what could have been. Please remember Ashley and her family in your prayers.
I also have some heart warming news. My good friend Jen has a daughter, Maria, who is 3 months older than Sophie. This past month, her preschool - Red Bell - in Plymouth, Michigan held their second annual trike-a thon for St. Jude, and this year they decided to donate the money to St. Jude in Sophie's name. We were touched, and honored. The students raised $5360.00. A friend of mine once told me that she read that it costs St. Jude 1.2 million dollars to run their facility for ONE day! We know we were so blessed to receive the care for Sophie at St. Jude. We thank the owner of the preschool, its staff and these children and their families for all their efforts, and hope they fully understand how every little bit helps a family at St. Jude with a child battling cancer.
I spent last week up north at my parents cottage with Mom, Dad, sister Sarah, Baby Zach, and my little Sarah. It was nice to get away, but strange being there as it brought back so many memories of the times we spent there with Sophie. Sophie loved "grandpa's cottage" and so it was hard to be there without her. The week was a little rough, and then this Mother's Day was certainly a hard day for me. Probably the hardest "holiday" we've had. I could clearly remember every Mother's Day that I spent with Sophie, and couldn't get it out of my head that I couldn't give the little girl, who first called me Mom, a hug. I do want to say thank you to those of you who thought of me on Mother's Day. I read each and every card and email and thanked God for putting so many good people in my life. My Mom bought me a rainbow/star garden spinner that I love, and Marc's sister Leslie made a contribution to St. Jude in my name and Marc's Mom, Susan Turner, in Seattle made a contribution to Smiles For Sophie Forever. Those were the best gifts. So thank you to all of you who showed your love and support. I truly appreciate it.
While my sister was here, I took advantage of her awesome painting skills, and I helped her paint my guest room a couple crazy bright colors and then I put the rainbow comforter I found on the bed. I wanted to have a place that will always be "Sophie's Room". I ordered some quotes to put on the walls. These are the 3 I chose. I think they are all so fitting and serve of the reminders we need every day.
"The soul would have no rainbow if the eyes had no tears."
"Somewhere over the rainbow, way up high, there's a land that I heard of once in a lullaby."
Every time I make a post, I never intend for it to be so long. But once I start writing, I realize there are so many things I would like to share. Tonight I am too tired to even proof read, so please ignore my mistakes. I will leave you with this last story - it's a comment that we received on the blog. I know many of you read through the comments, but for those of you that don't, I thought the shoes story, and the relation to all the "shoes" we will see on race day was worth posting for everyone to read. It made me cry, as I related too well to the mother's sentiments. Pray for little Isabella.
Marc and Emily,
I don't know any other way to get an email to you, but I wanted to share a story with you that a friend of mine shared in her blog. Monica Battle's 2 year old daughter, Isabella, has leukemia. They've been fighting since December 2007. I've kept up with Sophie's blog since the beginning and I'm keeping up with Isabella's. Monica shared a story in her latest that I think would resonate with you, especially Emily. I find that her observations and attention to detail match yours (you once talked about taking a walk and noticing a leaf or pinecone that Sophie would've liked or picked up, I remember that fine detail in your writing). And after you read this post I hope that you take a look at Sophie's shoes and thank the Lord that he blessed you with her, a Saint. She surely blessed my life here in Cincinnati, and I share her story whenever I can...perhaps even at your race in July everyone can look down at their (racing) shoes and see that by running they are contributing to such a wonderful cause, but most importantly to remember such a beautiful, beautiful girl.
"Isabella is sleeping and I am thinking…thinking…thinking…. I hope that you all are well and that your week is off to a good start. I found out today that we may be heading home as early as Wednesday this week. We go for a full body CAT scan on Wednesday morning and if her counts continue to rise we’ll be discharged. Isabella is still on three antibiotics and her regular anti fungal but she is feeling good. I’m not sure yet how much time we will have at home in between rounds, I’m hoping for another week. Thanks for the continued support for my family. It means so much to all of us.
Tonight I want to share a story with you.
Shoes
While shopping for a new pair of summer sandals for Isabella (she has outgrown her other ones since we’ve been here. Actually, she is growing like a weed), I over hear a woman talking about another child’s shoes. She mentions that she wished her kids could keep their shoes so clean. I politely smiled all the while silently thinking, get down on your knees and thank the Lord your children are able to get their shoes dirty. What I wouldn’t give for Isabella’s shoes to be filthy. Why? Because that would mean she could play like normal kids, she could get dirty and not worry about her counts, not worry about potential life-threatening bacteria … just play. Then I realized I needed to get down on my knees and thank the Lord. I know there are countless parents out there who would give anything to have their children’s shoes be “clean” because that would mean they are still here, instead they have been taken from this earth. Cancer changes everything. Even the way you look at shoes.
When you finish reading this take a moment and go look at your children's shoes and say a prayer of Thanksgiving for them. For "clean & white" shoes, filthy shoes, outgrown shoes, and to grow into shoes. Give thanks for your children's need for shoes.
Good Night All! Hold your loved ones tight!
Monica"
Love,
Sarah Regan
(Maria Holaday's past babysitter in Legend Hills)
God bless you all, and your need for shoes.
