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, November 13, 2006

Mommy, are you bigger than Spiderman?

Ellie felt very well today. She is completely covered with chickenpox, but today there was a sparkle and contentment about her that made our hearts smile. I noticed on Saturday that Ellie could not stop humming. Everything she did was accompanied by a happy little tune. Some days are so difficult - where everthing is an assault to her system - taking medicine, eating food, and just the general irritations of life, but over the past three days a peace and joy have settled down on her little heart. Tonight we cleaned her sores and put the medicine on, then she put on nice clean tinker bell PJs and brushed what little hair she has left and carefully placed the barrettes in (this is tricky because her scalp is covered with chickenpox). She sat in front of the mirror and put lip gloss on (I have no idea where she gets this from :-) When her daddy came in she was all pretty for him. She struck some dramatic poses for the camra, then we got a couple video clips of her doing a little ballet dance. On her first try, Ellie spun around and got brought up short by her IV line. She kind of gasped a little and untwisted herself, then started over after dryly commenting "I think I'll not spin this time."

As was mentioned on the blog, I was able to get away from the hospital for a full 24 hours. I was starting to feel a heaviness settle on me for a couple of days, so I was beginning to realize that I just needed to have some time away. I have been careful to take breaks often, but this time there was an overwhelming need to go away overnight. It has been three months of almost continual sickness for Ellie, and all of the mothers out there know what night time is like when you have a sick child! John was already planning for me to get away on Saturday night - he realized my need before I did, but on Friday night I had a bad meltdown. When I am around Ellie so constantly there is not a chance to deal with my emotions as they arise, and I had started thinking more about the possibility of loosing her. Earlier in the evening John and I spent a couple hours with Ethan in the playroom at the Ronald McDonald house. I was so tired and drained that I just laid down on the floor while Ethan played. He would periodically come over and lie on my chest and just hug me, then pop up and start playing again. He even dragged over a bean bag for my to rest on. When John went out of the room, Ethan looked over at me and said "Mommy, you're weak." When I asked why, he said "because you are." I thought this was odd because we play this little game where he asks me if I would fight the bad guys, and I always reply that yes, I would and I would win because I'm strong. He wants to know if I'm as big as spiderman, and I tell him that I may not be bigger, but I'm stronger because I have God helping me. (I know that what he's trying to ask is if his world is still secure, and I want to assure him that he has nothing to fear.) My perceptive little boy just hit the nail on the head that night and came right out with the simple truth: "Mommy you're weak." Later, when we were back in the hospital room, John went out to the car for something and I put Ellie to bed, then the tears just came and wouldn't quit. When John got back, he found me in Ellie's fort in the shower sitting in a pile of crummpled tissue. I could no longer breathe through my nose and my head was starting to pound.

...so Saturday night I left the hospital and didn't come back for a whole 24 hours! It was completely wonderful, and horrible all at the same time. I had such a good time relaxing and not being needed physically or emotionally by anyone. I have an amazing friend who knows exactly what to feed me and how to listen to me vent, so I spent the night at her house and was fed both physically and emotionally. Then we went to the mall and I was struck with a pervading sadness. I cannot shake the feeling that everything that should be happy feels sad. I had the same feeling when we took Ethan to Sea World a few weeks back. Everywhere I looked there were happy people with their happy children, seemingly unaware of how much pain children can bring. I didn't resent them, I just mourned that we were no longer the young new family with the tiny little girl on daddy's shoulders enjoying the Shamu show - we used to be that family. So I came back to the hospital refreshed, but also thankful to be back in the room with Ellie.

Even tonight when John came back to the hospital, it felt like this room has become a little cocoon of happiness. It's like the big world out there is so overwhelming and sad, but when we are together we can just concentrate on Ellie and each other and be happy. When John came in this evening, he brought a little tiny coffee maker for the room! I was so excited to finally have my own coffee every morning, but the thought occurred to me that it would be tainted because I had to drink it out of styrofoam cups. I banished the thought as terribly ungrateful in the face of such a thoughful surprise, then the blessed man pulled out my favorite mugs from home! I cheered and clapped my hands like a little girl. It's the little things that mean so much! When I'm sitting on the couch at home, I curl up with my hopelessly gigantic coffee mug (it's so big that the coffee gets cold before I can drink it all)and take comfort just in the experience. Now I can even have that in my little cocoon here at the hospital.

And now, so as not to leave you depressed and sad, because truly I am not, I will leave you with a quote I found in a book. It was a happy new year card that read: "I said to the man at the gate of the year: 'give me a light that I may tread safely into the known' and he replied 'go out into the darkness and put your hand into the hand of God. That shall be to thee better than a light and safer than a known way.'" I get sad and overwhelmed, but my hand is resting safely and securely in the hand of God and I do not fear the darkness. Yes Ethan, mommy may be very weak, but her God is stronger and even bigger than all of the superheros put together!

Thank you so very much for your love and prayers.
Love, Sarah for all.

7 Comments:

At 1:21 PM, Anonymous Tracey Whidden said...

Sarah (and family),

This is Tracey (Van Dyke) Whidden. I don't know if you remember me very well, but my husband and I are now on staff at NTM MTC (Camdenton). I just wanted to let you know that your family has been in my prayers a lot lately.

Having gone through some very hard things myself within the last couple of years, I know how encouraging it is to just have someone let me know they are praying for us. When I think of what little Ellie is going through, it just breaks my heart. It just doesn't seem fair that a little girl should have to grow up in so many ways so fast, as she deals with pain and big fears. My daughter, Kessa, is 2 and a half, and we thank God for each day we have with her. Since she turned 1, we have lost two babies to miscarriage and our twin daughters as well (5 1/2 months pregnant). My whole perspective on life, on God's goodness, His trustworthiness, His compassion, and His incredible love has changed soooo much for the better. We find ourselves 12 weeks pregnant with identical twins again (a 1/70,000 chance) and in my flesh I'm petrified. But, because I know WHO God is and that He will never change, I can find rest and comfort in Him.

People often make comments such as "You're so strong!" Or "God doesn't give you more than you can handle." I suppose that's true in a way, but I also believe it is somewhat taken out of context (that passage is talking about temptation). I think, honestly, that God DOES give us more than we can humanly handle. It makes us put our total dependence on Him. Yes, we are so weak, but He is our Rock and our Fortress!!

Anyway, I check Ellie's blog often and will be continuing to pray for her and for your family.

Love in Christ,
Tracey Whidden

 
At 6:15 PM, Anonymous Sarah said...

Thanks Tracey! Yes, I do remember you, and Vickie had updated me on your situation - I was actually at her house when she found out that you were expecting twins again. I'm so happy for you, and will pray for your little ones. I'm so sorry for all you have suffered, but I know what you mean about experiencing the love and goodness of God in such a special way. I also agree wholeheartedly that everything we go through is more than we can handle - and I'm so glad I don't have to handle it! I think that our greatest strength can be in knowing how weak we really are! Thanks so much for the encouragement. - Sarah

 
At 8:02 PM, Anonymous Heidi said...

I have come by way of Jessica's blog. I totally agree with you both in that God does give us more than we can humanly handle, thus making it that much more important to lean wholeheartedly on him. Ellie will remain in my prayers.

 
At 8:31 PM, Anonymous Tracey Whidden said...

Sarah,

There were just a few thoughts I left out in my first "comment." I got side-tracked and lost my train of thought. Anyway, I just wanted to say that I don't share my experience as something that "compares" to your family's experience. I've learned that hardships in life can't be compared to other people's struggles, because we are all different. I've had people say how they "know what I'm going through," etc. Well, maybe they've experienced something similar, but that doesn't mean that they truly understand, although they can sympathize. Only God really understands our innermost thoughts and feelings.

There's something about fighting for the lives of our children that is just plain HARD, though. We are supposed to be the tough parents...we are the protectors, providers...they're our responisibility. And it's so humbling when it seems that all of that is swiped out from our grasp. Yes, we hear all the time (and we KNOW) that God is in control. But it holds new meaning when our childrens' lives are in danger.

I picture myself just holding my babies up to God, saying "They're yours, I know, but can we please keep them here for a while with us?"

Anyway, I know I've started to ramble...and tears are now falling on my cheeks. I just want you to know that I Care. Ellie is in the safest place she can possibly be...and I know God's loving arms are surrounding all of you.

 
At 8:41 PM, Anonymous Sarah said...

Thank you, Heidi!

 
At 9:47 PM, Anonymous Sarah said...

Tracey,
Thank you so much. You know, I don't think that it matters what type of painful circumstance we all have in our lives - they are all different, but the truth is it just plain hurts. I'm so glad that God's love and grace pours out on each of us in our own very specific need!

I know what you mean about how hard it is to want to protect your children, but only be able to stand helplessly by. It leaves me incredibly humbled and vulnerable. I have felt that same emotion as I have held Ellie up with an open hand, but with the hope that somehow we can keep her longer. Then my heart is comforted by the knowledge that God has chosen our babies (yours and mine) to bring glory to Himself. Many people live long lifetimes without that result. I can tell that He has already given that purpose to your babies short lives, and my prayer is that He will do the same with Ellie's life or death. In all of our dreams and aspirations for our children, that one is the best.
- Sarah

 
At 8:09 PM, Anonymous Carleen Newton said...

Sarah... My heart aches to see you going through this experience of your sweet daughter's illness. The Lord has strengthened you for such big and difficult experiences in your young life. I have asked my Colombian missionary friends to pray with us for dear Ellie. Do you have anything written up in Spanish about her and how God is teaching you?
Carleen Newton

 

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