We will always remember Ellie for her love for others, her creativity, sensitivity, and delight in life! Ellie's light has spread far and wide... may it continue to shine in our hearts.

Monday, March 31, 2008


Have you ever noticed how shocking the word "dead" is? Most people, particularly from generations older than mine, will almost whisper "passed away" or even pause without saying a word at all to describe the departing of the departed one. It's as if an elephant has torn through the walls, leaving debris and destruction littering the floors. This large, grey beast is standing right there swinging it's giant trunk from side to side and all of the people standing around politely avert their eyes and pretend that there is no elephant. Everyone, that is, except children. I love children. Leave it to a child to point and say "oh my goodness, there is an elephant in the middle of the room!"

On Easter, we were able to go to a potluck at John's work. Some of our family was also there, and I got the biggest blessing from Ethan's little cousin, Alec (who is about the same age as Ethan). We were sitting around the table and Alec piped up and asked me "didn't you used to have a little girl too?" Bless his little heart, he stood right up and called the elephant out! His candor touched me so much. There we were - John, Ethan and me - an incomplete family, with gaping wounds in our hearts and someone came forth to acknowledge that something was wrong with this picture.

I have been spending much of the past evenings looking at pictures of Ellie to decide which ones to hang up in the house. It has been a much more complicated process than I ever thought it would be. Like I mentioned before, I want to be aware of the temptation to make our walls into a shrine. But I am finding the temptation much greater than I ever thought possible. I am at the point where I would wallpaper the walls with Ellie's pictures if I could. I love all of the pictures. It's as if the summation of the past year's pictures together form such a whole view of Ellie... like drawn animation. They form a moving, expressive look at who Ellie was. But I resist the temptation because I don't think that it is healthy for our family, particularly Ethan. There will still be plenty of pictures. One will not be able to see any angle of our living room without an imprint of Ellie, but it will be a little more subtle than wallpaper! I will have some of her artwork framed on one wall, my collage will be on another with the vinyl quotes. I will also heavily include Ethan. I want him to be able to see his sister, but also know that he is just as important. I want him to see how the family fit together when Ellie was alive, and then know that we are still a unit without her. But a unit that will never forget our Ellie. I am also going to hang pictures of both kids as babies and toddlers. I have enjoyed going through the old pictures as well. But every so often I would come across a photo of a healthy, vibrant, pre-cancer Ellie and my heart would lurch and I would think "she's DEAD!" I know... it's just... shocking. But I suppose that I'm just childlike enough to want to look that elephant in the eyes sometimes. Every once in a while something comes over me and I want to yell "We are not o.k! She's DEAD, and it's not o.k!" That's all. It doesn't change anything. But sometimes it has to be said... if only to myself.

Yesterday my friend, Jen, and I went shopping for the final pieces to bring the living room together. We had so much fun laughing and shopping. I felt normal for the first time in a long time. And I heard myself saying things like "I have always hated shopping with the kids - even Ellie. She was such a pest when it came to going into stores." All of my memories of Ellie are not special, beautiful, Hallmark moments. It somehow feels good to weave them all into the fabric of my remembrances. It feels... real. Jen took it all in stride. We found some lovely little brushed silver figurines in ballet poses. I wanted one to go next to a picture of Ellie, but the ones I saw were a little off. The hair was in a bun, or the figure was too curvy. Then Jen said "look!" and pulled out this little form that almost looked like a stick figure - no curves with skinny little arms and legs in a ballet pose. My heart almost stopped. And then Jen said "look, she's bald!" You should have seen the two of us in that isle, exclaiming and giggling. It was wonderful. Needless to say, I bought the bald stick-figure!

So... this is my life. Life without Ellie. Grieving, laughing, crying... life. In the words of Ethan: "I'm a power ranger all alone. My sister is dead." Yep. She's dead. It stinks.


At 10:38 AM, Anonymous mookilatte said...

sarah, sarah, sarah,
you are miraculous. what a fantastic post this is! there's an editor here in nyc who will win the jackpot when she discovers your writing, i am sure of it. and ethan's breathtaking words (i keep going back to read them, with my heart in my mouth) will make the perfect title. we think about you every day. we remember ellie.

At 1:42 PM, Blogger LindaSueBuhl said...

Even bald - dadgumit you'd think God himself was planning your life - OOPS - I guess He is. Cool about the little boy noticing (what was overly obvious). Yes Ellie is dead in this world and now fully alive in eternity. Glad you are so aware of not making your home a shrine to Missy El - 'cause Ethan is the one who has to still deal with stuff. Sorry he is an alone power ranger. Mooki is right you know - now isn't the time to think about a book - but it is there. I'd stand on street corners (or at least blog my stubby fingers off) to sell it. Yippee for elephants - Sarah - you need an elephant in the living room - not full sized - that would be worse than the big couch - but a little elephant statue or table or something. Love to all of you - and I'm still chuckling to myself. Those kids can call out a nekkid emperor any day - or point out an elephant.

At 3:48 PM, Anonymous TeamBettendorf said...

AMEN!! I loved it when some kid would say to me "Your daughter doesn't have any hair." The parents always tried to hush the child but I encouraged them. "You are right. She doesn't. Do you think that would be cool to never have to brush your hair?"

I'm proud of you. Thank you for continuing to share with us.

At 5:36 PM, Anonymous Anonymous said...

Wow, Sarah, what a hearfelt, painfully honest post. Thank you for sharing with us, Sheri

At 7:00 PM, Blogger pk said...

You all are just flat out amazing ! As always. love you, hugs, pk

At 7:05 PM, Anonymous Jen Johnson said...

I have also thought back on our day shopping and have thought about the same exact things. In fact, I came home and told Tyler how incredibly breathtaking it was to be able to be with you and freely talk about Ellie. I might be a weaker person, but I think that if I were in your same place.....I would pretend that she was still here. I think I would have a huge portion of denial on my plate. Though we only knew Ellie for a short time, I have found myself sobbing several times when I think about (very selfishly) Bailey having to let go of the only friend she ever met who was nice to her absolutely 100% of the time.
I went to bed last night with the vision of that silver figurine right next to the pic of Ellie in her white hat and posed to perfection.
You are an amazing friend, the kind that doesn't come into your life just everyday! I can't wait to see everything together in the house!
Much loves~Jen

At 7:58 PM, Blogger Kate said...

Well said, little Ethan. I don't have anything to add here, Sarah. Just thank you for being so real and honest and giving us a glimpse into your heart and life. Much love and prayers, Kari Schmidt
(bet Ellie got a kick out of the bald ballerina too!! ;) :D

At 10:11 PM, Anonymous kristen miller said...

sarah, i love you so much! that was one of the most amazing things i've read in a long time - thank you so much for posting with your true, honest, beautiful grace. i love the updates on the house, as well; keep em coming and good luck! can't wait to see when it's done ...

At 10:13 PM, Blogger c.g. said...

There's an elephant in the room

It is large and squatting, so it is hard to get around it.

Yet we squeeze by with, "How are you?" and "I'm fine."

And a thousand other forms of trivial chatter.

We talk about the weather.

We talk about work.

We talk about everything else-except the elephant in the room.

There's an elephant in the room.

We all know it is there.

We are thinking about the elephant as we talk.

It is constantly on our minds.

For you see, it is a very big elephant.

But we do not talk about the elephant in the room.

Oh, please, say her name.

Oh, please, say "Barbara" again.

Oh, please, let's talk about the elephant in the room.

For if we talk about her death,

Perhaps we can talk about her life.

Can I say "Barbara" and not have you look away?

For if I cannot, you are leaving me

Alone...In a room...

With an elephant.

~Terry Kittering~

Sarah - you are an amazing young woman. I think the way you described your home is beautiful -
when a home is decorated with such love how could it not be!

Our love and prayers to you all.

At 8:24 AM, Anonymous Anonymous said...

I checked on the poem and wondered if it was the same Kittering from Sloan-Kittering, but it isn't, it's Kettering that wrote the poem. Did you know about the poem before you mention the elephant??? She also left out one line... just after "it is a very big elephant"...
"It has hurt us ALL"
It still amazes me how many lives Ellies story has touched...

I love you, Sarah
Aunt B

At 1:16 PM, Blogger Mrs. Rabe said...

Beautiful Sarah. Thank you for being so honest. I believe it is healing, and right to acknowledge it and to talk about it. It is truth.

God bless your whole family -

The Rabe Family

At 6:53 PM, Anonymous Anonymous said...

Sarah -- WOW! I'm thinking "Shock & Awe". I was shocked when I first opened the blog and saw the title for this entry. And then, awe over how well you always express yourself and get to the heart of it. Ellie is dead and it's not ok. It hurts. She is gone but is not forgotten. So many people have been touched by her and still carry her everyday in our hearts. Thank you once again for sharing so much -- we were blessed the day you joined our family!!!
Love you, Mel

At 9:58 PM, Anonymous Anonymous said...

I have been following your site for months. We pray for you and are living your pain and happiness with you. You are so great about letting your true feelings out and sharing them with us! You have a wonderful way with words, were a wonderful mother to Ellie, and are still a fantastic mother to Ethan!! May I suggest you visit Shutterfly.com and consider downloading your precious photo's of Ellie? You are able to make unbelievable books (just gorgeous) and you could fill a whole book with Ellie photo's to have on the coffee table or just on the shelf to look at when you need that little boost! Just a suggestion. We will keep praying for you and your family!
Amy in Minnesota

At 12:49 PM, Anonymous Anonymous said...

I have waited for days to comment because your post touched me so deeply I couldn't write without crying. I just want to say THANK YOU for being so honest. You put into words what I have imagined you might have been feeling over these months. She is dead, it's not ok and it hurts. And God fully understands your angst and your heart.

At 7:41 PM, Anonymous Anonymous said...

Hi Sarah,
You have such an amazing ability to put your thoughts into words. Thank you for continuing to share with us all...we continue to keep you all in our prayers.
Melissa Pflug

At 10:43 AM, Anonymous Anonymous said...

Oh dear Sarah,
I saw it in your eyes when Alec made his comment, I knew it had gone deep into your soul. I'm so glad to see that it has bubbled to the surface in a healing way.
Aren't children wonderful?!!
We love you all so much, and are looking forward to our playdate!
In Him,

At 12:36 PM, Anonymous Anonymous said...

So well written. I couldn't possibly imagine having to deal with such a loss. It's not fair,it's unfathomable, but God is good. I just delight in hearing all of Ethan's comments!Thank you for honoring your true feelings. Thank you for letting us be apart of this journey. God bless you Sarah.
Roxanne Julin

At 2:40 PM, Anonymous Anonymous said...

So well written. Thank you for never holding back, sharing your feelings and for the beautiful insight. It's unfair to lose a delightful child like Ellie. The death of Ellie is beyond our understaning.Just remember all things work together for good for those who love the Lord. You're beautiful Sarah. God Bless you and your family.
-Roxanne Julin

At 8:41 PM, Anonymous Jennifer Shelton said...

Sarah, I have followed your family's story from Ellie getting sick. I have wanted to drop you a line ever since, and just didn't know what or how to say anything. I read this post tonight and just had to drop a line. My daughter Ryleigh died in Dec. 2005 and I know about that elephant in the middle of the room. I know about the word dead, and how sad I am because she's not here. I rejoice that she is in heaven, but my heart is heavy for the now moments. Thank you so much for putting down the words that I have felt more times than I can count. One moment at a time! Jennifer
Here's my email just in case you ever want a new ear! babyfctry@AOL.com


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