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.

Tuesday, April 17, 2007

Praise God for Chocolate!

Sorry for the lapse in posting... for me it has been a long, frustrating and emotionally trying few days.

Ellie continues to do well physically as the days pass. She is moving around with a walker and sitting up in the playroom. She even made a couple of craft projects!

Mentally and emotionally have been a different matter altogether. For days Ellie has been - for lack of a better description... numb. The smiling picture that I posted a couple days ago was one of the only brief happy moments that she has had. She pulled into herself and wouldn't talk much - even to me. Most questions were answered with a mumbled "I don't know" and there was no life in her face. I can only imagine what it must be like to be in Ellie's head and have lived through the past three weeks. So much of it is unknown, even to her, because of the drugs... Then this afternoon I was able to have a wonderful talk with her. We talked about what happend to her. She is so sensitive and smart and really does want to know what's going on, so I told her that she almost died. Someway, somehow, in her heart she already knows that. She has to. I told her how pleased the doctors were at how strong she was to fight and get better so quickly. (One doctor today even told me "On March 28, I don't think anyone here thought that she would make it. But here she is and all of her organs are fine... I don't know what she's made of...") I also tried to find out what things she does remember and began to carefully and selectively fill her in on what was going on from our side of things - what was REAL. Her memories are a mix of real and non-real - mostly like a very vivid dream that has pieces of reality interspersed throughout. And there are, I think, blocks of missing time... mercifully. I was able to make some of it light - I teased her about how she got superhuman strength and she just giggled over that! I know that she's not finished sorting everything out yet, or possibly remembering - but she is beginning to. And for that I am thankful, because for the first time in weeks Ellie is really here. She smiled and laughed and TALKED. A non-talking Ellie is unthinkable... some of you out there know what I mean!

I have been fighting some discouragement (which I suppose is an understatement) regarding the process of changing hospitals and doctors. Everyone has been so good to us - it's not that - it's just the whole process... I have counted 5 attendings, somewhere between 5-10 fellows and 5-10 residents that we dealt with over in the PICU. Oh yeah, plus about 5 surgeons... Of those 20-30 doctors, there were only TWO that I can say were following Ellie's case (and staying in contact with us) off and on for the whole 18 days - one fellow and one surgeon (whose contact with us was often through his team, but we always knew he was consulted). And then we left there and came to this hospital where we have so far had 4 nurse practitioners, a team of 3 "pain management" doctors, and 1 attending physician (so far), and 1 psychiatrist, plus our oncologist (who is part of a team of doctors and nurse practitioners). I know that everything was charted properly and they can all read the data and they're all competent and respectable individuals, but yesterday something snapped in me and I lost it. It was all simply too much! I just wanted to look in the face of one doctor and know that he or she was there when Ellie coded... and when she was intubated, and extubated - three times... and when we had to hold her down while she was hallucinating... and when she went through withdrawals... and when she looked at us with clear eyes and smiled... and the list goes on. I was just so TIRED of fighting to be understood and listened to. I actually wished we were back in the PICU. (Yes, I know... the Israelites longed for Egypt too...) I left Ellie with John in the playroom, and left Belinda to unpack into our new (non-private) room and I walked away from the hospital in a fine fury - without telling them where I was going or why. Once out on the street I quickly realized that there was no place to be alone. I didn't have a plan when I left... I just walked away and hoped that something dramatic and helpful would materialize. I actually momentarily contemplated finding a bar (hey - don't be shocked... I promised you guys I would be honest and share with you where I'm really at...) but the image of myself sobbing into a drink just didn't sit right, plus it scared me a little. Then I decided Starbucks was a much saner choice but was too far to walk because by then I was hyperventilating from walking fast and trying to hold back the violent tears that were threatening burst forth all over the unassuming masses. (And quite frankly I'm tired of crying all over the unassuming masses - they don't deserve that...) The image of myself passed out on the streets of New York scared me to death. So I did the only rational thing I could do and went home. How boring! It was, however, the only place I could think of to be alone - and I was lucid enough to realize that it was the safest place to be given my alarming train of thought. Of course I didn't have my room key - that would be too easy. So I had to interact with two people without crying before being let into my room. I promptly threw myself across the bed in a fit of angry tears. And that is how I learned that it is not wise to stuff angry tears that long. I nearly had a panic attack trying to catch my breath. I eventually checked in to let the team know that I hadn't gone AWOL - well I guess I did go absent without leave, but confessing and reporting for duty within so little time should at least count for something! I then just vegged out on the couch and watched TV and ate chocolate. I awoke after about 9 hours of good sleep feeling much better about coming back to the hospital and dealing with it all. Somewhere in the midst of it all (I suspect it was at some point after the little talk I had with God where I appologized for the rage part...) I realized that sometimes there are just things that can't be changed - the process, the not being able to choose who you get to deal with and how well they will understand you. And in times like those, God still makes provisions. True, I didn't go home and read my Bible and pray (things which I will admit are always a great idea) but really what I needed in that moment was for the dam of emotions to break and to rest. And the chocolate was just the cherry on top. I can't tell you how many times I've been thankful that God made the cacao tree!

Today went much better. Things are falling into a rythm at this hospital now and I'm feeling much more comfortable with everyone and everything that is being done. It also helps that Ellie is much more herself. That great big elephant stood up and got off my chest. It's amazing what breathing can do for a body...

Thank you all for hanging in there with us. I love how happy you get over seeing Ellie smile and hearing good news. You are such a part of our lives each and every day. When something bad happens I know that you cry with us and when our hearts overflow with joy, sharing it with you is the first thing on my mind. And when I go into a funk like I have the last few days, you patiently wait for me to be able to express myself again and then you accept me where I'm at. I am so greatful.

28 Comments:

At 9:36 PM, Anonymous Anonymous said...

I'm so glad that Ellie is doing better. I've been praying for you all for so long, but haven't been able to write. I know that God is with you and little Ellie and He is the only one who can provide the miracle for her. thanks for your posting, it has helped me see a little more of God's amazing character.

~Bekah Harper~

 
At 9:47 PM, Anonymous oneofhisfriends said...

Well, I'm glad you're getting some exercise.

 
At 10:01 PM, Blogger c.g. said...

Sarah,

Thank you for sharing so honestly.

You needed a 'time to cry' and a time for 'chocolate', although, it isn't in the 'there is a season for everything' chapter - I think that when the Lord made chocolate so good - He must have had such as a time like this in mind.

You are a remarkable very wise mom with a very remarkable daughter!

May the Lord continue to give you strength for each day and when needed - good chocolate!


I have a maker
He formed my heart
Before even time began
My life was in his hand

He knows my name
He knows my every thought
He sees each tear that falls
And hears me when I call

I have a Father
He calls me his own
He'll never leave me
No matter where I go

He knows my name
He knows my every thought
He sees each tear that falls
And hears me when I call.

 
At 10:03 PM, Anonymous tara said...

sarah,
I must confess,the way you write is so vivid I could actually see in my mind what you were thinking and feeling,to tell you the truth I couldn't stop laughing. I think I can honestly say I've done almost the very same thing,different circumstances and city,but same emotions. I walked 5 miles and got lost, had to call home for help:(
BE STRONG MY SISTER!! You are not alone. Let others do their best for Ellie. praying always! Tara McClintock

 
At 10:29 PM, Blogger Mrs said...

I've been pretty stoic through so much of this, knowing that God is totally in control. When you wrote about the Israelites longing for Egypt, THAT'S when I lost it. You really struck a nerve with that one!

How quickly we forget how very far we've come. Thank you for your insight and candid post.

JoAnna

 
At 10:52 PM, Anonymous Anonymous said...

Talk about "superhuman strength!" I can imagine your red cape fluttering in the wind as you took to the streets of New York.

From a fellow chocoholic and Starbucks addict,
- Diana

 
At 11:16 PM, Blogger Penny-Sue said...

Ahh, Sarah!!
It is refreshing to hear that you ARE human! (I was beginning to doubt!)

We are praying for you and the family everyday and KNOWING that our precious Father is SO MANY steps ahead of us and paving the way with His tender care, sovereign grace and everlasting love.

Peace, I leave with you, My peace I give unto you: Not as the world giveth, give I unto you. Let not your heart be troubled, neither let it be afraid. John 14:27

Still praying in China,
Penny-Sue and many others

 
At 11:20 PM, Blogger Robyn said...

Sarah, I'm so glad you were able to let it all out! After the past few weeks, even if everything had been perfect you would be overdue a huge cry and vent. I CANNOT imagine how much stress and fear you have been going through. Anyway, I'm keeping on praying for you all, and I'm so glad you're getting Ellie back :)

 
At 12:27 AM, Blogger missellen said...

Oh, dear Sarah! Thank you for sharing, you give us so much of your strength when you write! Try to take some of our strength back unto yourself, knowing our prayers are without ceasing for Ellie and all of you!

 
At 1:28 AM, Anonymous Anonymous said...

Thank you so much for your honesty. I think you have been doing so amazingly well over these last weeks and been so strong. God is with you in those times but He's also with you when you feel you aren't doing well. You are only human but have a Supernatural God who loves you and knows your pain and allows you to be open and honest with Him.

SO many prayers are coming your way. TAKE CARE.

 
At 3:26 AM, Anonymous Anonymous said...

Footprints..................when you saw one set of footprints...it was then that I carried you.

So glad to hear that Ellie is doing better and out of PICU. We continue to hold Ellie and her "team" up in prayer, knowing our God is able.

Your family are "Stars" shining His light, following His path - and through the darkness, you have shone the brightest. Know your journey is touching so many other lives.

Steve & Priscilla (Deb's mom & dad)

 
At 6:27 AM, Anonymous Rebecca said...

Just so you know - when there is a lapse in posting we figure something is up.Either you are too busy or too tired or going through an especially difficult time. But we still pray, and commit you to the one who knows exactly what you are going through, and is able carry you through it.
Thanks for your open heart and showing us how God is caring for you always in all ways.
Love you guys,Rebecca

 
At 6:57 AM, Anonymous Anonymous said...

Thank you for the update, Sarah. It's great to hear that Ellie is doing pretty well. Thanks, also, for your honesty. Three cheers for chocolate!
You guys are always in my prayers.

Beth Nichols (Kim's sister-in-law)

 
At 7:08 AM, Anonymous Anonymous said...

Love you Sarah!!!!!
Vickie

 
At 7:20 AM, Anonymous Anonymous said...

i am so happy to hear that ellie is doing better and getting stronger each and everyday. i continue to pray for complete healing. we all need a good cry now and then and i think the Lord knows that. i am right there with you with the whole chocolate thing. its a wonderful thing!!!!!. in our prayers always. love the simons family

 
At 7:23 AM, Anonymous Jennifer Wiser said...

Sara,

You don't know me, but I've posted a few times. My son Alex has been in such amazingly similar situations at the hospital that your story has become so dear to my heart. Here I am this morning, weeping reading your post as I've been waiting to see how the first couple of days out of ICU have been. I can relate so completely with you in so very many ways and the situation is still so very fresh in my mind - that I know the pain, frustration, helplessness, fear, and anger that comes with being put into a situation where you feel like you've talked to literally hundreds of different people, explained the meds, described the pain, given instructions, and then had to start all over again. I've also been in the blessed place you've been of feeling God's strength carry you through another day, His peace comforting your heart when it felt like it indeed leapt out of your chest during your crying rage, and His love picking you up and whispering, "Be still, and know that I AM God!" We are all the way in Michigan, and I've wanted to just come to New York to meet you and tell you, I've been there, and I know. Your pain and postings have so truly moved me to become a prayer warrior for not only Ellie but for you as well. During our valley with Alex last fall, prayer warriors carried us to God thousands of times over. What an amazing thought! Last night at revival at our church, our speaker said this about God answering prayer, sometimes, He wants to answer our prayers in such a way that everyone KNOWS that it was God who did that! He wants to show Himself strong, He wants us to recognize it was God who performed a miracle. He doesn't want to share His glory with anyone! We've seen Him do that in our Alex, and I believe He is also performing His miracle in Ellie. I look forward to meeting you someday, if not on earth, then in Heaven for sure. At that same time, we can thank God together for His creating of chocolate - which soothed many of my tear sessions. II Chronicles 16:9a, "For the eyes of the Lord run to and fro throughout the whole earth, to shew Himself strong in the behalf of them whose heart is perfect toward Him..."

Praying in Michigan,
Love,
Jennifer Wiser

 
At 8:17 AM, Blogger tricia said...

I think they need to send you to my house for a few days.

 
At 9:17 AM, Anonymous LaVonne Bader said...

John and Sarah, Be assured we ARE praying much for you and trusting God for Ellie. We have our church praying for you all. Thanks for your honesty in sharing your heart. We know it has been almost an impossible situation for you. God understands and remember He loves our tears. We continue to keep Steve posted. LaVonne

 
At 9:43 AM, Anonymous Anonymous said...

Been praying during the lapse of blog entries...so great to hear the update. I laughed and cried!! Still praying and still caring...les

 
At 11:47 AM, Anonymous Anonymous said...

Sarah, dear, thank you for being so transparent. I love to read reality. Nancy

 
At 6:31 PM, Anonymous Alice Corbett said...

Hi Sarah,
Thanks for being so honest! I can relate!! Our God will carry you through this "night" season, to show you He can carry you through anything at all, and joy will come in the morning! Praying for sweet Ellie and ALL of you.

 
At 6:50 PM, Anonymous Kristina said...

Sarah,
Oh, you've got it, Girl! God loves an honest heart and when can get really honest and tell it like it is and how much it really hurts he comforts us. Really, I have been in such pain mixed with anger this year and have experienced that "gushing" to God is when my heart finds relief and satisfaction and rest. Oh, He hurts with us. He is made GREAT when we cry out to HIM. It hasn't always meant opening the Word, for me. Sometimes it has meant just letting it all out and communicating with Him about my pain. Your honesty alone is HUGE! You are way ahead of the game just by expressing yourself so vulnerably on paper. Thank you for letting so many in on your precious lives. Your impact on me personally is of great porportion. You know what Christ's words are about when he said, "Blessed are those who mourn, for they shall be comforted." -Matt.5:4.

One of the best books I read this past year was, "Good Women Get Angry." - by Gary J Oliver and H.Norman Wright. It revolutionized a lot of wrong thinking I had regarding anger.

I am praising God tonight that you were able to connect with Ellie. That is awesome! I will pray that continues to happen. I guess you said good bye to your private room. I hope this current arrangment will be okay for you all. Tell Ellie we are praying for her all of the time and so thankful to God for strengthening her more each day.

By the way, it is awesome to read Jennifer Wiser's words as it sounds like she KNOWS of your pain. God is good. At the end of EVERY DAY, He is good!

Standing with you and helping you "hold up your arms,"
Kristina

 
At 7:15 PM, Anonymous Anonymous said...

We'd love to be able to send cards and notes of encouragement to Ellie. Would that be possible?
KL

 
At 7:39 PM, Anonymous Judy and Jon White said...

Just to let you know if I don't message often, I am checking the web several times a day and praying. We love you all.
Judy and Jon White

 
At 8:51 PM, Anonymous Anonymous said...

I'm Terry's sister in Ill.I have been keeping your family in my thoughts and prayers.Terry called me and told me Ellie was not doing well. I lit a candle for her.I'm
praying for her for strength.And
for you and your family too.God
Bless Ellie and your family
"chris (Terry Ungers sister)"

 
At 7:39 AM, Anonymous Debi Hall said...

Friends of the Sumralls, familiar with loved ones with cancer, lifting you up in prayer today.
Debi Hall and family

 
At 7:16 PM, Anonymous tabitha Price said...

Just wanted to let you know that we continue to pray for little Ellie. Marshall asks regularly for me to check the page and give him an update. We love you and appreciate your faithfulness at keeping us in the loop. Thanks for being so real too. It helps us to know how to pray for you.

 
At 2:25 PM, Blogger Mandy Caley said...

I keep losing ability to log in and having to try again, I succeeded today- yay- chocolate and 9 hours of sleep- that is good. So hard about the wee girl who is dying. So hard. Your blogs are SO amazing Sarah and I cannot imagine how you do it. God is the answer obviously. We pray always. Andrew says hi to Ellie.
May He sustain you and yours.
Love Mandy

 

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