My Emory talk

Hello friends,

First, foundation news.
The gagrage sale date is set!! April 28th. Mark your calanders.
We will have TWO locations, watch the newspaper and this site for addresses.
We will have new and used items from furniture to DVD's to household items and toys.
We will also be selling baked goods and drinks.

If you would like to donate items, please email me.

Ok. This is cheating a bit, especially since I will be posting the same update later on caringbridge, but I wanted to share the talk I gave this week to the chapalaincy grad students at Emory. It was very difficult, but I think it went well.

My talk:

For anyone who has ever had a child diagnosed with a life threatening illness, there becomes a “before and an “after. A moment in time that divides life as they once knew it forever. Into a “Before and an “after.
On Jan. 21, 2001, I was a “before person. I had a husband, four healthy children, I sang in the praise band at church, and taught Sunday School.
I can tell you the exact moment I became an “after” mom. Jan 22, 2001, Our 7 year old daughter stayed home from first grade with a fever. She was snuggling with her dad, who happened to be a FP doctor. A father’s caress turned into the probing fingers of a doctor on her abdomen. Then he came to tell me the words that started our nightmare. “Her spleen is huge.” I tried to tell myself it was nothing, but I knew in my heart it was something.
And it was
24 hours later, our daughter was in the PICU. 48 hours later she was being transferred to Duke by air ambulance, and on a ventilator after suffering respiratory failure.

Our story is long, but Haley was finally diagnosed with an immune disorder that was attacking her liver. One night in the hospital about six weeks into this new life, Haley was having horrible pain, despite many doses of IV Demerol.
She saod to me, “Mommy, I have been praying so hard. Why doesn’t Jesus just take this away?”
It was like being punched in the stomach. After all, she was an innocent first grader who had been raised in church, believed in prayer, believed God loved her. How could I explain how a loving God could let her suffer. I couldn’t comprehend it myself.
I went into the hall to compose myself, and I prayed, “Lord, I would rather she lose her life than lose her faith. Please let her feel your love”. I reminded myself that God loved Haley even more than I did, and walked back in to her room. I told her I didn’t know why she was still in pain, but what I DID know was “God is real. God loves you. And he never promised us we wouldn’t suffer in life, only that He would never leave us. And He never will leave you.”

We spent the next 5 years on the up and down rollercoaster of this illness. Mostly down.
Haley endured one crushing blow after another. She was hospitalized many times, often,right into the ICU, she needed to be on a ventilator 4 times, she had 2 bone marrow biopsies, 5 liver biopsies, 2 skin biopsies, the added blow of a second life threatening illness, making her one of only 4 in the world with this combination of diseases, she had to have emergency brain surgery and woke up in the ICU with a shaved head.
And know that I am leaving out hundreds of office visits, blood draws, scans, xrays and IV sticks. She has had shingles bad enough to paralyze her foot and her bladder to shut down. She had to be catheterized every six hours for weeks. She went through 2 rounds of chemotherapy in desparation to get control over her immune system. She was placed on the waiting list for a liver transplant, and then taken back off because she was too sick.

While she went through all of this, I saw something amazing taking place.
A miracle, really.
My daughter, in spite of all this unfairness, was growing into a beautiful, compassionate, brave, kind-hearted child.
In spite of taking blow after blow, my daughter’s faith grew. She started writing songs, first funny songs about liver disease, that she gave to other kids struggling…and then, praise music.

We visited a friend in the hospital, she was in pain and really unhappy. Haley and I were staying at The Ronald McDonald House. Haley sat at that kitchen table and wrote a song for her friend…and the next day, she brought it to her and sang for her. She named it “Sarah’s song” and she sang about how God would never leave Sarah, no matter what.
I am happy to tell you that Sarah had a liver transplant a few weeks later, and has not spent a single night in the hospital since then.


I thank God that I started this journey with a strong foundation of faith. Because few things test your faith like watching your child struggle and suffer, and fight, and stand by helplessly. Nothing tests your faith quite as much as watching that child. Why? I asked myself, “If God were going to take her anyway, did she have to suffer, our whole family had to suffer for 5 years? The answer, I believe, is that there are many lessons to be learned through suffering, lessons that can ultimately help others. As a Christian, I am in excellent company, being in the midst of suffering. I can give you example after example of suffering for a greater good all through History. God wants us broken before Him. He does His best work, offers his most amazing grace among the broken hearted and vulnerable. A vulnerable heart is a heart ready to be molded…one way or another.


I think about the moms and dads across the street right now at that Children’s hospital who maybe don’t have such a strong foundation. I know how scary and isolating those hospital walls are. As chaplains, you will have the unique opportunity to reach out and comfort them. And you will find them in all types of states. They will be sad, angry, depressed, numb. And they all need the same thing…love, compassion, and most importantly hope. Hope for this life, and hope for eternal life as well.

When Haley died on October 1, 2005, a big part of me died as well. I lost my daughter and so much more. I lost my own life, my way of living, I lost my innocence and optimism. I lost family and friends who just didn’t understand the depth or length of my grief. I lost my job as her mother and caretaker, I lost my best friend, and I lost my mind.
I truly cannot imagine a worse trauma than losing a child. If there is one, I don’t want to even know what it is. As isolating as her illness was, her death was so much worse. My world shrunk to my bedroom and my living room. I never left my home. I just wanted to curl up in the smallest place I could and never move again. 18 months later, I still feel that way very often.
What I would tell others about grieving a child is pretty simple, but very important.
1. It takes a long, long, long time to get any kind of “life” back. Years. I am no where close.
2. We cry all the time, every day for years. It is normal. Don’t try to make it better. You cannot. Just pass the Kleenex.
3. Visit armed with meaningful scriture, not clichés. Not she’s in a better place. Or God doesn’t give you more than you can bear. UHH Yes he does. But, from the Bible verse, “His grace is suffient for me”…makes sense to us. We can only deal with one day at a time, sometimes one hour at a time, and His grace is suffient for that amount of time.
4. And don’t give up. These people need to know someone cares. Keep calling. Leave messages, send emails, and, of course, keep praying.

I’ll leave you with a song about hope and faith, written by a pretty amazing 11 year old girl. In the face of tragedy, my daughter sang.


The song "Everywhere" plays.

Cheryl