She slipped into our arms on a cold gray Saturday morning exactly ten years ago today. A little blue around the gills, the nurses blew some oxygen in her face. I was shaking all over (they tell me that’s normal after giving birth) as my doctor suctioned out her nose and wiped her off. The nurse threw heavenly pre-warmed blankets on me as I stared at this little wiggling person who had just squeezed out of my body. Her umbilical cord played the role of “fig leaf” that morning, so I had to ask Scott if she was a boy or a girl. He had tears in his eyes and a catch in his voice as he answered.
“It’s a girl.”
“What is her name?” the nurses asked, as they scribbled notes and assessed her vital signs. Her APGARs were low at first, but came up to normal the second time.
“Ellie Renee,” Scott answered.
Ellie is a form of Eleanor, which means “light,” and Renee means “reborn.”
I surprised myself, watching contentedly as they did their thing with our baby and the doctor stitched me up. Almost too quickly, Ellie was laying on my chest, blinking gooped-up eyes and looking bewildered.
The feeling was mutual. I had expected this dramatic outpouring of emotion when I laid eyes on my firstborn child. Instead, I felt awkward and shy and even a little detached. Looking back, I’ve always wondered if that detachment was some sort of premonition.
For three days later, we found ourselves in a tiny consult room in the children’s hospital emergency department watching a doctor draw what he thought our baby’s heart looked like. It was nothing like the heart anatomy I studied in Biology 101. That doctor told us that her heart was so malformed that she would probably need a transplant. We sat in dumbfounded silence as they fed lines into her navel and hooked her up to monitors.
And weirdest of all? Walking out of that hospital at 2:30am without her. Her carseat ached its emptiness from the back seat of our little sedan.
The next morning, a different doctor sat us down in a small library in the newborn intensive care unit. He told us that Ellie’s heart had stopped beating for thirty minutes that morning. They had finally gotten it beating again, but no-one knew how much damage had been done… if she would wake up… if she would survive that day.
I was twenty-four, married for only seventeen months. We aged years in those first four days of Ellie’s life. We both wept in the shower, pleading with God to heal her, trying to hold onto hope, and yet trying to prepare to give her back to him all at the same time.
Three weeks later, a pediatric cardiothoracic surgeon slid a paper across the counter toward us. He told us that he would give Ellie about a 20% chance of surviving the surgery he was preparing to do that afternoon. We signed the forms, knowing that she had a 0% chance of surviving without surgery. We waited through twelve hours of surgery that day, surrounded by family and friends who knew that we might walk out there for the last time and without our baby.
She lived.
Ellie lived for eight years and eight months. She woke up, she opened her eyes, and she started a glorious and highly successful game we affectionately call “Stump the Doctors.”
Everything came slowly, but she eventually learned to take a bottle, to smile and laugh (her smile could brighten the darkest day and her laugh… oh her laugh was musical). She scoffed at sleep. We could tell time by her naps — thirty minutes to the second.
She struggled mightily through those eight years. Plagued by seizures, swallowing disorders, respiratory weakness, and lack of muscle and bone growth, she became “famous” at our hospital — notorious for throwing curve balls and for the incredible way she triumphed over horrendous infections and battled back from three more open-heart surgeries.
I’ve never seen such strength, especially in such a little body.
The love I felt for her was very different than the love I have felt for anyone else. It drove me to overcome some of my worst fears.
I used to get nauseous just thinking about hospitals. On a field trip in high school, I almost passed out when we made a stop in the blood bank. I dreaded shots and throat swabs. But when Ellie was born, I dove head first into that foreign place called the medical world.
If she needed something, I learned how to do it. I learned how to insert a feeding tube into her nose and feed it down her throat into her stomach, how to measure, mix, and feed her high-calorie formula, how to give shots, how to disassemble, adjust, reassemble, and fix wheelchairs, bath chairs, standers, walkers, braces, and splints. Sometimes she and I drove to the hospital every day of every week, to see doctors or physical/occupational/speech therapists or to have lab work done. I know the best plebotomist (draws blood) in our eight-county region. When we finally got her a communication device, I learned how to program it, trouble-shoot it, and teach her various assistants how to use it with her.
That’s how I showed her how much I loved her. I learned everything I could and did everything in my power to get her what she needed. We tried to give her the best life possible within her limitations… and ours.
Even though I did as much as I could for her, I still often wonder if I made Martha’s mistake. Was I too busy doing things for her that I didn’t spend enough time just being with her, enjoying her company? I suppose everyone who has lost a loved one to anything wonders that. But it’s one of the questions that still haunts me… did she understand how much I loved her? Did she know that was why I did all those things for her? I won’t know the answer to that until I meet her again in the afterlife. Until then, I will do my best to show everyone else how much I love them… and make sure they understand.
Ellie has been gone for sixteen months now. She slipped into the arms of Jesus early in the morning in October, 2008. Today would have been her tenth birthday.
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That's a beautiful and sad story. You continue to honor your daughter with your writing. My thoughts and prayers are with you as I'm sure Ellie's are every day. Grace and peace.
Oh, Joy. Thank you for sharing Ellie's birthday with us. You've been a mom for 10 years – 10 long, painful, wonderful years – and in my heart, I know she knew how much you truly loved her. Please be gentle with yourself. xoxo
Thank you for sharing this Joy. She did know that you loved her. She would light up as soon as she could hear your voice, or see you. The looks, laughs, and kicks she did when you and Scott appeared where so expressive of how much she loved you and knew your love. She was such a perceptive girl, so aware of all things. Oh how she loved it when you two would sing, more than anyone else singing, she lit up when she saw that you were going to sing.
I love you sister. Miss her so much, so very very much.
I agree with Adwen. Love looks a little different to a 2, or 5, or an 8 year old than it does to a 30 or 56 year old. She new, and loved you and Scott in return. And I do too.
Love,
Dad
Happy Birthday my little soprano girl. "Light Reborn" is very special…she lit up the world. God knew her and created her before she was born…how? By what she has done in your life and what she continues to do in the lives of many! I am one, and I am nothing! I love you Elli!
thanks for sharing this…it brought tears to my eyes. She is beautiful and precious and still is now that she is with our Savior and in eternity!
Yes, Joy she knew you loved her. And oh, how she loved you! Kids are very perceptive about things like love. And Elli is pretty smart.
I ended up having a very special Elli birthday celebration at my meeting Friday night. I learned that our denomination is working to make families with special needs members welcome by working to find ways to make the church building and ministries special need friendly. They are also looking for ways to encourage these parents too. I don't know the details, but just knowing they are working on it was encouraging.
Thought you'd like to know.
We love you very much,
Mom
I just have to agree with what Scott said, about honoring Ellie with your writing. What a beautiful love story of her life.
Joy,
Thank you for the beautiful memory you so openly shared with us. You are truly gifted at putting down in words the truest of all human emotion. You are an amazing woman to me. I will always feel a close connection to you and Ellie. I also feel a close connection to Gracie and Ellie–almost like they were "out of this world" the whole time they were in it. You know. And, I continue to find connections that amaze me. Ellie's birthday just 9 (or 10 on leap year) days before Gracie's…March 7. Ellie's homegoing just days after Gracie's. Strange connection..but I believe they have met each other in their Glorified bodies. I also had a "weird" feeling when pregnant with Gracie. I had a dull excitement and crazy thoughts would pop in my head, like, "Well, even if I lose this baby, I have one son. Not like I wanted it, but a weird feeling that she was not mine." I continue to read you and pray for you and your beautiful family! I admire you for a number of reasons! May God be your strength. Love, Amanda Lockyer
There are no words. I'm sorry.
Wow, beautiful story!!
Thank you so much for sharing your beautiful daughter with us and ofor your amazing support as i struggle again through the nightmare of grief. http://www.livvyssmile.co.uk/index.php?option=com_content&view=article&id=10&Itemid=13 this link tells you more about my amazing daughter. I hope one day to have the courage to write about Maverick soon xx thank you and God bless xxx
Thank you for sharing Ellie Renee with us….
what a beautiful child…I envision her dancing with the angels at Jesus's feet.
xox
Joy,
I, too, am the mom of two specially-abled kiddos. While I do not share the pain of loss, the questions and insecurities are so familiar. My DH once told me (OK, so he frequently says it, since I need the reminders), God gives children the perfect parents for each child. To mold, shape, co-create unique testimonies and to love as we can.
It may not always make sense to us, as the big picture, rarely does. But in the words of Jeremiah 29:11, He knew the plans he had for you AND for Ellie. She was yours so she could have a life of hope and future. And you had her for the same sweet reasons. And sure we mess up and every Mom could name a dozen times they did. But God knew what you would do with Ellie, and He gave her to you because of it.
He also knew you write her story, so please, keep going! You're blog is so encouraging.:) TY
What a beautiful daughter you have, such a heart breaking story told with much courage. From the few photos I've seen, she sure looked like a happy and loved child. Thank you for sharing her story and I'm glad you found me from lady bloggers. You're an incredible mother
Thank you for sharing your heartbreaking journey with us. Your story could have been mine. We were lucky that our son's CHD was not so severe. He has Tetralogy of Fallot. I felt that same disconnect the day he was born. We knew about his CHD long before he was born. He has had 2 open heart surgeries now and many more to come. Your Ellie is a beautiful girl and I know she knew how much you loved her.
sending you hugs and saying thanks to God that he gave you and your family the grace to bear with your lost.