Thursday, October 6, 2011

It's Been A Very Long While

I have been writing this update in my head for a long time. I realized how long it has been since I posted when I couldn't remember the "log in" information! There have been so many times I thought that I should "write that on the blog," but somehow time and other priorities get the best of me. It has been over a year since I have posted, but finally on this 4th anniversary of Sophie’s death I am inspired to share. As I try to type with Marie on my lap (please forgive the typos), I feel so many emotions.

Funny how time moves on. 4 years. It sure sounds like a long time. From day to day, it seems as time moves slowly, but when you think of time in months and years it seems like they are moving so fast. Sophie only lived seven and a half months after diagnosis. They told us she would live nine to twelve. Wow did those months fly by. Everyday during those months I just wanted to freeze time. Recently I heard that losing a loved one is like a mountain in the distance, so huge you can see it from everywhere, yet still so far away. That is exactly how I feel.

Today, 4 years later, I can hardly remember Sarah as a 1 year old at the funeral of her big sister. When I look at her now, I can’t believe, at age 5, she is older than Sophie ever was. It's strange to see her growing up and it leaves me wondering how Sophie would have been at five and a half, and how she would be today at almost eight and a half. I can't begin to imagine all the things that we have, and will continue to "miss out on." Sarah still talks about Sophie all the time. I think she knows more about death, dying, and heaven than any kid her age, but it comes with the territory I suppose. I try to explain things so she understands them, but recently she has been very bothered by the idea of being buried. There were tire tracks across Sophie's grave the last time we visited; not malicious ones; it looked like a truck had been driven across the grass to a new grave site. Anyway, Sarah was so bothered by the fact that someone would drive "over Sophie." Although Sarah has no real memories of Sophie, she speaks as though she really knows her, especially when she says, “I miss Sophie,” and “I wish Sophie were here.”

4 years can be a short time when you think in terms of a life cut tragically short by a horrible disease. But today, for me, 4 years is a long time…long enough for the smell of the nightgown that Sophie was wearing when she died to fade. I have it in the drawer of my bedside table and smell it from time to time. Just recently, I shed a tear when I realized that it is starting to smell like the wood of the drawer. For some reason, I thought it would always smell like Sophie. Now her locks of hair are the only thing I have left, that and the memories which help to sustain me. From time to time we still come across things that were Sophie’s. A half colored page in a coloring book, a paper decorated with stickers in the stack of paper in the “craft box.”

Even four years after her death, I find myself asking the same questions; how, why, what if… The feeling that I just might somehow wake up from this nightmare is still there. Sounds crazy I know. I used to be able to picture Sophie at age 5, 6 and even 7. But now, I have a really hard time imagining what she would be like as an 8 year old. I see little girls that are 8, and they seem so old, so grown up. I still imagine Sophie as such a little girl. I sit here and wonder if I will ever feel differently. They say grief comes in stages. Not sure how long each stage lasts, but I have been in this same one forever.

About this time last year I found out I was pregnant. Fast forward one year later, I get to wake up with a little miracle named Marie Elizabeth beside me. I look at Marie every day and think of Sophie. Of course I believe all babies are gifts from God, but for some reason the feeling that Marie was sent from heaven is overwhelming. I just know that Sophie had a hand in her getting her here. Since Marie’s birth, many well meaning people have asked, “What does it feel like to have two kids?” and “Will you have a third?” And I know they mean well, but my heart sinks when in my mind I answer, “I have done this before,” and “I already have three.” It’s those day to day things, that a parent who has lost a child has to deal with. And yes, it is hard for most to imagine. We all have our times of hardship, of weakness and of loss. I am not hardened to the pain that others feel . I just know that the loss of a child has got to be way up there in the “hard to imagine” category.

People say, "Find something fun to do on October 6.” Or “Try not to think about it.” But truthfully it feels comforting to think about “it.” To think about the warm, beautiful day October 6, 2007 was. To think about how Sophie was able to eat and drink that day. To think of holding her body late at night as it went from warm to cold and wanting to stay in that moment forever. To remember and reflect on the pain Sophie endured and the battle she fought. When I look at four year olds I know, I can’t imagine a single one going through what Sophie did. Just the thought of it makes me shiver.

I know many of you follow the updates of the foundation in our e-newsletter. I say thank you to those of you who support the foundation. We couldn’t be doing this work without you. Thank you for keeping Sophie’s memory alive and for caring enough to do something for the future. We don’t often get to say thank you, and as usual, words don’t seem enough, but if you have ever done anything for us and/or the foundation, we are truly truly grateful.

We will be “okay,” time will move on, and we will go through the day to day. We will forever be changed people for what we have gone through, what we have survived. As I was out walking on Sunday, I set my ipod to shuffle my entire music library, and this song from Wicked the musical (which I haven’t heard in a long time) came on. Obviously its meaning in Wicked is a lot different from what it means to me, but I must say that I am forever changed because of Sophie.

Lately I’ve been out running again. Hoping and praying that somehow I will be ready to run the St. Jude half marathon for the second time. I remember training last year in the early weeks of my pregnancy and thinking how tired I was. Little did I know it would be a lot harder this year as my body doesn’t seem to have that “muscle memory” everyone talks about! I am counting on Sophie again to help get me through the 13.1 miles. I know with Sophie as my inspiration, along with all the other children fighting the battle and the memory of those who have gone on to heaven giving me strength, I will finish. I am so proud and honored to say there are 11 members of Team Smiles For Sophie Forever traveling to Memphis December 2. We have set our fundraising goal at $20,000. Smiles For Sophie Forever has granted us $10,000 and we are trying to match it by raising an additional $10,000. If you’d like to do something today to honor Sophie, consider donating to our team page by clicking on the link, or by mailing a check to me made out to St. Jude at 31722 Leeward Ct. Avon Lake, OH 44012 I don’t have to tell you what an amazing place St. Jude is, and ANY amount truly helps. With your help, I believe one day a cure can be found.

The last bit of foundation news for those of you local to Avon Lake is the holiday pie sale that is going on now. We’ve made it easy for you to have a delicious Thanksgiving dessert this year . Visit for all the details.

Say a prayer today for all the families who will be told today their child has cancer, and for those whose journey will end. My prayer is that no one will ever feel my pain and have to celebrate their child's "angelversary" instead of their birthday. I wish you and your families health and happiness.

Until I am inspired again…
Xo Emily


grandma and poppy turner said...

I have a bulletin board on my desk with pictures of all my grandchildren. Not a day goes by that I don't think about Sophie without my mind going into that "unbearable" zone that I have to drag myself back from.
Whenever I am asked, "How many grandchildren?" I always answer five, no explanations necessary. I do, however, get a great deal of comfort knowing the work that her foundation does. I am so very proud of you guys.

grandma and poppy turner said...

I have a bulletin board on my desk with pictures of all my grandchildren. Not a day goes by that I don't think about Sophie and have to drag my mind back from that "unbearable" zone. When I am asked, "How many grandchildren?" I always answer five, no explanations necessary. I do get a great deal of comfort knowing all the good that her foundation is doing. I am so proud of all you guys.

Anonymous said...

Oh, Emily........It is impossible for me to put myself in your shoes, to imagine all your emotions as you sit quietly on the anniversary of your baby's death. There is nothing I can say or do to make it all go away. I do know that you have carried on admirably, in that you have kept your family together, you have been brave enough to bring Marie into the world, you have mothered little Sara into a happy little girl, and you have been there for other families facing this horror. The world is a better place because of your strength,determination,and love. God bless you, Emily. I believe your Sophie is watching you. Love, Lynne

Kassie said...

Good morning Emily! I stumbled onto your blog this morning, and I have to say I am so thankful I did. This august my daughter who is 5 was just diagnosed with pulmonary hypertension caused by 3 undetected, therefore, unrepaired congenital heart defects. I just wanted to say this latest blog has given me hope. So thank you! Thank you for putting this out there for me to read, for being such a strong mother, for trudging through the unimaginable and still functioning. You are now forever in my prayers.

Anonymous said...

Thank you for writing this blog. My friend's little 7 yr old boy became an angel October 27th, 2011 from DIPG. He lived 9 1/2 months after diagnosis. Back in January I found Smiles for Sophie forever. I learned instantly what to expect from reading Sophie's story. The real stuff that doctors do not tell you. Like loosing the ability to walk, talk and swallow. Thanks to your courage for writing your journey I was better prepared as a friend to help. I hope I live to see the day a cure or even a remedy is found for this dreadful, dreadful disease that is taking our most beautiful children.
God Bless.