Throughout the month of September, I am going to share re-posts from back in Sarah’s cancer days. I’ve just been sitting and rereading some of those posts this morning and have cried over some of the stories and laughed over others. I figured that if the posts still had the power to move me after all these years, they would be worth sharing with my Smithellaneous family once again. (I am reposting the pieces to commemorate Childhood Cancer Awareness Month.)
THE LONG GOOD-BYE (from 2003)
Two thoughts have been on my mind this week.
The first is something I read some time ago about Ronald Reagan’s struggle with Alzheimer’s disease. Nancy Reagan described those years together as “the long good-bye.”
Then I got an email from another mother who has a daughter with Neuroblastoma who wrote, “I catch myself grieving her while she’s still here.”
I thought of those words this morning as I held Sarah in my lap for our traditional morning snuggle. We usually sit for five or ten minutes while I wrap her blankey around her, stroke her hair, and absorb the rhythm of her breathing.
This morning as we were quiet together inside our mother-daughter cocoon, tears began to run down my face as I thought how desperately I would miss those moments if the day ever came when she was no longer here.
She was completely unaware of my melancholia and when our snuggle time was over, she jumped up and went and got a shoebox she had transformed into a house for her stuffed dog, Butterscotch.
Sarah explained to me that she had put Corn Flakes in the box so Butterscotch could have breakfast and she had cut a bone out of paper for him since she didn’t think that Snowy would want to share one of his personal bones. She had placed a collar (fashioned from a pipe cleaner) around his neck that held a piece of paper with the name “Butterskoch” printed on it along with our phone number, “in case he gets lost.”
Her skin was pale and her face was covered with peeling, dry skin from her medication, but her eyes were bright and merry. I’m sure she didn’t understand why looking at her and Butterscotch would make me cry but any mother of any daughter on the planet would have understood—there is a certain language called tears that needs no interpretation.
A couple of days ago I was getting ready to take her to the hospital for her checkup and blood work. As I was walking around the kitchen cleaning up a little, I remember that I hadn’t yet gotten Sarah’s blankey, which always accompanies us to the hospital. I retrieved the blankey from her bed and as I carried it to the kitchen, Sarah stopped chewing her Wheaties and was quiet for a few seconds. Then she rather matter-of-factly requested, “Mom, when I die, will you please put blankey in my grave with me?”
I froze momentarily and then did my best to put on a calm smile and said, “Is that what you’d like, Sarah?”
“Yup” she replied and went back to her cereal bowl.
Is this the long goodbye? Conversations over what to put in her grave? Crying over Butterscotch and his paper bone, so lovingly hand-drawn?
Some people may chide me for my lack of faith, and say that I should just believe that she will live and she will. However, I know countless parents who have believed with all their might, and yet their children have gone to another World, taking their special toys and their precious blankies with them.
I read the statistics. I know the probable prognosis of her disease.
On the flip side of the coin, I do believe in healing. I know that throughout history, countless people have been healed.
I also know that when Jesus was praying in the Garden of Gethsemane He asked God to spare Him from the cross. He ended that heart-rending prayer with the word, “Nevertheless.” That one word says it all. “Nevertheless, not my will but yours be done.”
If Sarah lives to be ninety-five, I will be so grateful.
If she dies while she’s young, while she can still fit into my lap for snuggle time, I will be grateful for the time we’ve had.
But the not knowing. The long goodbye.
The wait for the phone to ring and a doctor’s words to shatter my world. The sermons about healing. The books about children’s cancer. The stories on the websites of other children who have died from Neuroblastoma.
I look at the symptoms she’s been experiencing lately and wonder if they are the beginning of the end. And then I look at the symptoms she’s been having lately and wondering if they’re nothing at all. It’s the not knowing that’s so hard.
All I want is for her to grow tall, to have hair long enough so that I put it into pigtails. All I want is for her to live long enough to truly taste life. All I want is for my little girl to live.
Nevertheless. Not my will.
It sounds so spiritual to say, “Not my will but Yours be done.” However, I don’t feel very spiritual today. I feel like a grieving mother who is so afraid that the morning will come when my little girl won’t be there for our morning snuggle. I‘m so afraid that Butterscotch will lie alone in his shoebox, left behind by his little mistress who had an appointment to keep in another world. I’m so afraid that if she goes, so many clouds will cover my heart that I will never feel the sun again.
Right now, she’s watching Arthur on TV. Butterscotch is in his box on one side of her and Snowy is cuddled near her on the other side. In a few minutes, we’ll start school and I’ll begin to teach her about Daniel Boone, punctuation, and carrying to the thousands place.
The truth of the matter though, is that throughout this past year, I have been the student and she has been the teacher. I’ve seen her go through chemo, surgery, more chemo, another surgery, apheresis, additional (lethal doses) of chemo, a bone marrow transplant, radiation, and more pain, tears, and sadness than any mother’s heart can bear.
And yet she gets up every morning, fusses over her little doggies, smiles at me with her heart in her eyes, snuggles in my lap, and exhibits incredible strength and joy as she unflinchingly faces what the future will bring. She has suffered unbearably and yet she is running full steam ahead into life. However long our good-bye turns out to be—seven months or seventy-five years—she will always be my sweet, brave baby.
We have a wonderful children’s book that I can never read without crying. It contains a mother’s poem to her child that says. “I’ll love you forever, I’ll like you for always. As long as I’m living, my baby you’ll be.” How true that is.
I hold that poem in my heart on this overcast Thursday morning, hiding at my computer until I can get my tears under control. In a minute, I’ll go down to the kitchen, fix Sarah her breakfast, and sit down to teach. And be taught.
My teacher is my child. My child is my life.
May our long good-bye never end.
That picture at the end is stunning, you should enter it in a photography contest! You can see Sarah’s story written into it and yours from the camera’s perspective. =)
Annie,
That is one of my favorite photos as well–quirky, sweet, brave, just like Sarah.
Thanks so much for sharing this, Becky. I have Sarah’s graduation announcement (thank you!) in the front of my Bible, and every morning, I look at her beautiful face and praise God for her LIFE. I also have a picture/bookmark from the funeral of my husband’s best friend Gary, who died within 6 months of his cancer diagnosis last year. I thank God for HIS life too, and mostly that he gave himself to Jesus a month after he was diagnosed! As I look at those two precious pictures, I always think “The Lord giveth, and the Lord taketh away. Blessed be the name of the Lord!” Rejoicing with you today, Becky. God bless.
JennyJo,
So sorry to hear about the death of your husband’s friend–people like that leave such huge holes in our lives. I know his life and memory will be held close for many, many years.
I’m glad that you’re enjoying having Sarah’s graduation announcement. It really is inspiring to look at and to think about her journey.
no words, just love and thankfulness for Sarah’s triumph for the long hello!
Mrs. Pam,
The long hello. Love that!
Thank you for (re)sharing this post with us. It’s so well written, and it so full of truth. I think of Sarah, and your family, so very often.
The story “Love You Forever” by Robert Munsch has definitely had a profound impact on me ever since I heard it for the first time, when I was 6 years old. My mom read it to me over and over again. The poem, she would sing it. And every.single.time, I would cry. I still do, just thinking about it. I remember trying to sing it to Lilia soon after she was born… I was never able to finish it, up until very recently, and she’s nearly 5 months old… It just brings too much tears! They are not sad tears, yet, not happy either. They are hard to describe… it’s just, emotions. Those words, I wrote them on the first page of her baby book… I hope she can say them to her own children one day too.
Renee,
Isn’t that an amazing book? I remember lying on our bed one night when Nathan was a toddler and Steve was reading that book to him in the other room. Steve got to the middle of the poem and suddenly I heard nothing but silence . . . I knew Steve was crying.
There’s just something about that story and those words. It’s like you said–not happy, not said, just deep emotion.
thanks for re-sharing this post with us – I was with you the first time it was posted also. I hope that all who read will share with the world this post – as it is a story of hope & faith
and quite frankly a miracle named Sarah as Neuroblastoma still steals our young ones. I have shared Sarah’s story with so many parents that need that hope. Also, Gold is the ribbon for children – let’s make it known as well as pink. Becky – thanks for reposting this month – I know it is hard for you to do so. Love this picture from those days and also the picture of Sarah sitting on the floor in Smithfield in the middle of all those birthday cards- can’t remember what year she was celebrating. Becky
Becky,
Yes, I remember that picture of her sitting on the floor with the cards. That was her 11th birthday because she relapsed in 2006. That was quite a roller coaster year!
Oh my gosh, I am never going to make it through this month! I have to run out and but a box of kleenex. I know you have so many posts to choose from…..
BUY a box of kleenex!
Lesley,
Buy (or even but!) a box for me while you’re at it. 🙂
So powerful…so poignant and so celebratory!! She is too big to fit in your lap, her hair is long enough for pig tails and she is a high school graduate. I am so grateful that His will and our will were together for her life. I am grateful for a little girl in Heaven named Sarah and beautiful young lady right here named Sarah. God is good…so incredibly good. I praise Him today!
Lisa,
Our hearts are full to the brim with the two girls behind that name, aren’t they? Hugs.
Wow, joining the above group with tears streaming down my face, I was not following you that far back so this post is new to me but touching beyond belief and that book you quoted, I have never read that without crying, Becky, what a beautiful post, what an incredibly brave tribute to your daughter, we all know how it turned out now, but back then, you had no idea what was going to happen and to be able to put your fears and your hopes into those heart wrenching words, well, it is just beyond anything I could ever imagine doing…..
Dale,
I think that’s one of the things that kept me sane during those difficult days was the opportunity to put my fears and feelings into words. And I felt especially blessed that there were wonderful people out there reading them and crying and hoping right along with me.
Thanks for your encouraging words!
I am so incredibly glad Sarah beat the odds. I cried as I read this : it is especially poignant and meaningful reading this in the future and knowing that she would go on to not just survive but grow up to be such a lovely, perceptive, compassionate young woman who really lives.
The quote about the long goodbye relating to alzhiemes also touched me as I have a way precious grandma who will be 99 in November. She has dementia and is frail and I love her so much. It is so painful, because I know she is in her final months. And yet I am so incredibly thankful for having her in my life even still. .
Jenna,
Ninety-nine? What a life your grandma has had and what changes she has seen as she nears a century of living. Saying good-bye won’t be easy; I know though, that even after she’s gone, she’ll be with you always.
Ooooo-kay… new rule. No reading Smithellaneous as I settle down to my desk at work, at least not during Childhood Cancer Awareness Month. Crying is not conducive to productivity!
But beautiful post, Becky. So glad Sarah’s defied all the odds!
Kristina,
I hear you! If I had been anywhere but at home while writing it, I would have created quite a scene because I had big ol’ tears running down my face.
I remember this post and crying the first time. Today it hits closer to home and many of your thoughts then, could be mine today – though not for a young child. Thank you, Becky, for reposting.
Guerrina,
I think it’s interesting how different things we read (and then re-read) take on a whole new meaning the second time around–especially if a few years have passed in the interim. I know the person you’re talking about and I know the pain the situation has caused . . . you’re not alone and you are loved!
Tears streaming down my face as I read this. Thank you for your willingness to share with us all parts of the struggle. God has been so good and I thank Him for allowing us to have the Smith Family as part of our life. So proud of what Sarah is doing and the young lady she has become. What a joy she has been to us. Love you all.
Ann,
I still think of that picture we have from Duke with you and Jim; Sarah was in a wheelchair. You guys have been with us for a long time!
I remember this post and it still brings tears, though tears of joy for a young lady in college!
Cindy,
Yes, happy tears are a good thing! I’m crying them right along with you as she starts off in this new chapter of life.
Beautifully written, Becky!
Thank you, Kristi. So glad re-posting it has been meaningful to so many people.
Oh, Becky! I am crying tears of joy knowing that Sarah’s hair has been long enough for pigtails and your gorgeous, healthy daughter is in college. I imagine this victory seemed so far off and something it was hard to hope for back in the days when you wrote this post. Since this is Childhood Cancer Awareness Month and there are things swirling all around me about sweet kids and hateful cancer, this is especially poignant. Thank you for sharing these very personal moments as a reminder that even though Sarah’s story is a victory, there is still much fighting to be done on behalf of other warriors.
In friendship, Courtney
Courtney,
That is so true–as long as there is even one child diagnosed with this disease, the war goes on.
Thank you for all you and your organization are doing to help kids and their families. You’re an inspiration!
Beautiful!
Deb,
Thank you so much!
Oh my. What a tear-jerker. Again. I remembered this post. :'(
All praise and glory to God for Sarah’s healing!!
LeeAnne,
If you remember this post, you are definitely one of the old-timers. 🙂 Thanks for hanging on with us through all the years.
This was just beautiful. 🙂
Olivia,
Beautiful words for a beautiful girl and a beautiful miracle of survival. We are so very grateful.