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.

Saturday, March 31, 2007

Ellie Smiles!

Thank you all so much for the sweet and encouraging comments! Your love has been amazing. We have felt strength that we should not feel during this time. Loretta and I were talking about how we have felt like Moses today - when the people stood around him and held up his arms so they would not get tired. That is the way it has been! Another thing I've decided... you people are saving my sanity! After blogging half of the night away and sleeping in, I awoke feeling like a different person. I felt like I had stepped out of the dark night and into the sunshine. Everything was clear in my head and heart and I knew exactly what I needed to do! In order to understand what happened to me, you need to know what our "team" here in New York looks like...

Melanie provides the practical and medical expertise needed for navigating the complicated world of the ICU. She is able to handle being the only one in the room when the rest of us need to rest or eat. (And when she is not there, it takes three of us to replace her!) Ginger has been Loretta's eyes and ears in the room as well as our informational go-between. Loretta (out in Montana) records everything and provides much needed organization, continuity and balance. (When Loretta is "in the room" and she is ALWAYS in the room... I am there. I miss nothing because she keeps me in the loop about every detail. She also knows me better than I know myself sometimes, so she can often make sure the situation is handled to my liking. She is truly my proxy!) Mom and Pat have taken care of practical details such as grocery shopping, errand running, laundry, cleaning and most importantly are the beautiful loving grandma faces that Ellie needs to lay eyes on from time to time. Stan has provided a much-needed outlet for John as they have taken some time to explore the city and burn off some energy and steam. John has stood watch over Ellie in the hospital from time to time - learning the technical information and details. (John and Stan have both been there to look into Ellie's eyes and whisper loving words to soothe her heart.) And because of this entire amazing network - I have been able to have rest when I need it while still being in the loop as to Ellie's every move. And when I am in the room, I look down into my sweet little girl's face... and I just know exactly what she needs to hear! All of this, my dear friends is because of you. Teamwork like this never EVER runs this smoothly, but we have seen God work miracles and move mountains - even in the tiniest logistical details!

And so this morning I walked over to the ICU and introduced myself to the nurse. She gave me an update of Ellie's status. Because I had already been briefed on Ellie's night, shift change, rounds, and the surgeon's visit, I understood everything that she said and was able to ask questions and express any thoughts or concerns that I had. I also asked to speak to the doctor as well. Once all of this was taken care of, Melanie, Ginger and I formulated a plan for the next 24 hours. I knew exactly when I wanted to be there and who I needed to be with me. I'm telling you what, it was a power trip the likes of which I have never known! Most of you know that I am just about the most timid creature God placed on this earth, and the rest of you will have to take my word for it. I still may not have come across very bold today, but in my mind I was beating down the underbrush on either side with a machete! As I sit now, I can't decide whether I feel exhilarated or nauseous... I think God may need to give me a little more warning next time he decides to give me those kind of muscles - a girl's gotta at least warm up a bit first don't you think?

Tomorrow should be a big day for Ellie. The plan is to take Ellie off of the ventilator. She will begin to be weaned off of the sedation drugs early in the morning, and before she is extubated will be completely awake. This may be quite traumatic for Ellie and so John, Melanie and I will all be on hand to keep Ellie as calm and informed as we can. We will take turns sleeping during the evening and night. This afternoon Ellie had about an hour of awake time. She was still groggy from the drugs, but was able to nod her head, squeeze my fingers, and show us that she understood what we were saying. She remembers things that happened yesterday, and she still worries over the same things that she always did - i.e. taking the IV out of her arm. A couple of times she tried to talk to me around the ventilator tube and her eyes filled up with tears when she couldn't express herself. I was able to explain enough of what was going on to comfort her, and several times she just opened her eyes to make sure that I was still there. When John came in for a visit, he tenderly kissed her and spoke her name, and she looked up at him and SMILED! And not very long after that, I smiled in her face and told her how amazing and beautiful she is and she smiled in return. My heart just melted. She is the same little brave girl, talking it all in stride... fighting and working and loving! She has been sleeping so peacefully in the hours since that wake time. Tomorrow promises to be the hardest day that Ellie has ever known, but today she smiled. And she will do it again some day soon.

17 Comments:

At 7:07 PM, Anonymous Anonymous said...

We will continue in prayer for you all! The prayers of people all over the world are being raised to the Father tonight on Ellie's behalf. May you rest in His love. KL

 
At 7:14 PM, Anonymous Sharon Herbitter said...

Your story is zipping through the blogosphere and all over the internet; be assured that prayers are being offered up for Ellie and all of the rest of you. I don't know how many people forwarded the email that I eventually received (I live in Prattville, Alabama), but you are being supported by many during these challenging times.

I will write about your story and post it on my little blog so that even more prayers might be offered on Ellie's behalf. You are such an embodiment of the idea of God's strength being made perfect in weakness. Thank you for sharing Ellie's story in such a way that more of your Christian family might be made aware of your troubles. I am praying for all of you.

In Him,
Sharon Herbitter
Prattville, AL

 
At 8:12 PM, Anonymous Anonymous said...

I remember when Shane was weaned off his ventilator at 14 months and it turned out easier than we were ever let to expect. You need to remember only two things: love your baby and get on your knees and pray. God does hear. I personally know he is there as he was with us though our trials.
Just continue to love her and pray -It will be OK and you are doing well. -Dawn
PS: Insitncts play an important role!

 
At 8:19 PM, Blogger Amy said...

Hi Sarah & family,
I teach with Julie and she has kept us informed from the beginning of Ellie's cancer. Thank you for keeping the blog up so we can be informed of what's going on in Ellie's life. My heartfelt prayers are with you.

 
At 8:44 PM, Anonymous Anonymous said...

My dear Sweet Sarah, I now am able to write to you on the blog because Sharon is here and has shown me how. My heart is with you all and especially with Ellie. I love you all so very much and you are constantly in my thoughts and whole being.
My love to you all, Grandma Lois

 
At 9:16 PM, Blogger Whatleys' World said...

Hi Sarah, John, and Ellie (and Ethan with Gary.) Wow. Our God is good and His peace is calming when we can submit to His will for ours and our loved one's lives. God is shining through your family, the testimony that HE is leaving with all those who HE has allowed you to be in contact with. May you all continue to be encouraged in the Lord as you all grow closer to Him, allowing yourselves to be held in His loving and caring arms. Sleep well. 'Hi' to Ellie.

 
At 9:50 PM, Anonymous Kristina said...

Sarah,
You come to mind all day long. Little Ellie's face and only how I imagine it to be now these days does too. As I cry out to God for you, I pray that God will continue to bring many many people to Him through observing your lives. I can only imagine the affect it had to have had on the medical staff to observe you singing to Ellie, close in her ear for so long a couple of nights ago. Sarah, you and John and your family and dear friends around you have got to be a bright shinning light in that world. You certainly are outside the walls of that hospitall where all of us all around the world are challenged as you remember in the hight of your fear, uncertainty, pain and exhaustion that God is good and will always be good, that he can be trusted and never changes, that he loves you and has your best individually and as a family in mind. Sarah, thank you for every detail you share. They are precious words to me as my faith is challenged to watch God REALLY meet your needs in the midst of this horrible reality. Thank you for "calling it what it is" and not just smoothing reality over with "we are just trusting God." You are feeling the pain and going to the Maker of the Heavens and Earth to make it through each day. Thank you. You are blessing my life greatly.
I am so sorry for your pain and I cry as I read the updates, only trying to imagine what these hours and days must be like for you. Please know I am praying. I am so glad John could join you in at the moment he did. I think you are being very wise to keep Ethan in as normal an environment as possible.
Okay...I'll say "good night."
A BIG hug,
Kristina

 
At 4:43 AM, Blogger Phyllis said...

We came back from a trip and found out about Ellie's crisis. I was praying while we were gone, and now I know why. Thank you so much for sharing her smiles today.

Praying in Russia!

 
At 4:45 AM, Blogger Robyn said...

What a rollercoaster of emotions you must be feeling. I'm so glad you have a great team of support, and I'm praying that all goes well for Ellie tomorrow.

 
At 9:11 AM, Anonymous Anonymous said...

An excellent wife, who can find?

For her worth is far above jewels.

....She girds herself up with strength and makes her arms strong.

...Her lamp does not go out at night....

Strength and dignity are her clothing...

She opens her mouth in wisdom,And the teaching of kindness is on her tongue. She looks well to the ways of her household,

..."Many daughters have done nobly, But you excel them all."

...a woman who fears the LORD, she shell be praised.

Truly you are this kind of women, ( well the whole part, but I was wanting to keep it short).

Jesus in you makes you shine!
Love, Ruth Kime.

 
At 10:45 AM, Anonymous Anonymous said...

Sarah, I agree with the quotes that Ruth sent. You are truly a remarkable woman and you make us all a little stronger in our ability to deal with all of this. I am so very grateful that you and John are at the helm for Ellie every day!
Much Love, Aunt Sharon G.

 
At 11:44 AM, Anonymous LaVonne Bader said...

John and Sarah, Please know that we in our family love you and are praying for you and Ellie and all of you there with her. We are keeping you in our prayers. Love, Baders

 
At 1:07 PM, Anonymous Anonymous said...

Indeed, "undernearth are the Everlasting Arms" and THOSE Arms are never tired.
"When Christ is the physician nothing is impossible." J,C. Ryle
Granny N.

 
At 2:37 PM, Anonymous mema t said...

We will be praying for strength and peace for Ellie as she starts the journey tomorrow. In Psalms it says: What time I am afraid I will trust in Him (God. God knows that even in those frighting moments that all of you are trusting Him.

Blessed Assurance, Jesus is Mine!!!
Edith from SC

 
At 3:16 PM, Anonymous Anonymous said...

Praying for you and your loved ones Ellie. I am from Canada and have never met you or your family. You are an awesome inspiration of strength faith and love. I have two little girls myself. Stay strong

In His love

Peter and family

 
At 8:50 PM, Anonymous Alex Wiser said...

We vividly remember the day our precious Alex came off the ventilator. What a miracle it is to behold. Although it can be difficult and frightening, it taught us so much. Truly, that every breath is given and taken by our precious Saviour - who is our very life. We've been reading every day, spreading the word here in Michigan, and praying faithfully (often weeping) for Ellie, and all of you. We look forward to reading tomorrow to see how God takes care of her during this important day. We know He will! We continue to be amazed at all He has done in the life of Alex, and know that like you, seeing that smile during the challenge, is like God smiling through the life of our child.

Love and Prayers from Michigan,
The Wiser Family
Scott, Jennifer, Audra, and Alex

 
At 9:26 PM, Anonymous Mrs. Terry Davis said...

Our 4th grade class at International Community School prays for you every day. We hope you got our Christmas Cards back in December or January. We have also done a class skit of David and Goliath on video. We want to send Ellie a copy when she's ready.

 

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