Wednesday, September 8, 2010

I don't know what to write

So, it's been a week since I last posted something, and I've tried to figure out something new to post, but nothing is coming to me. As a momma who has lost a child, I am going through peaks and valleys. I have read other mothers' stories on blogs, and this weekend I finished reading my first book written by a mother who lost a child. We've received many books, and I'm sure they are in a safe place, but I can't seem to remember what I've done with most of them, nor have I felt like reading any until the other day. Angie Smith's book, I Will Carry You...The Sacred Dance of Grief and Joy is just what I needed at this moment in time. I cried most of the way through the book, which was a good thing. Sometimes, I don't feel like I have the time to cry like I need to...life is too busy around here, and we don't even have TV! As Angie put it, we are "women who [are] often just going through the motions of normalcy, partly for our children and partly for ourselves. I began to realize that this was going to be a part of my new life because the world has a way of going on all around you even when you are in the depths of sorrow that belie its pace and fervor." I have had a hard time penning my thoughts, even trying to figure out my feelings and thinking of words to describe them. It was good reading someone's thoughts that so meshed with mine...some sort of validation, I guess.

Tomorrow (which is now today) Kelvin and I are going to a luncheon for a company in Houston who is spotlighting different charities, encouraging their employees to give. What an honor that they would choose Emma's Hugs as one of those charities to spotlight! As I was preparing something to say, I realized I was very thankful that Kelvin was able to clear his schedule and go with me, because I wouldn't be able to speak about anything regarding Emma or Emma's Hugs without crying bawling. I don't think a sobbing, grieving momma is what the company had in mind when they asked for a representative from our charity to say a few words about our organization. As I was researching the right words to pen for such a presentation, I came across a website that listed the description of Emma's disease, and the tears started flowing..."In the Early Infantile variant of NCL (also called INCL or Santavuori-Haltia), probands appear normal at birth, but early visual loss leading to complete retinal blindness by the age of 2 years is the first indicator of the disease; by 3 years of age a vegetative state is reached and by 4 years isoelectric encephalograms confirm brain death." Not exactly what any parent wants to read about his/her daughter. Sweet, sweet baby girl, I am so sorry. We have to find a cure for this dreadful disease so that other precious babies given this diagnosis will have the hope of life.

I've heard others say grief comes in waves. I believe that to be true, very true. And sometimes, the waves hit really hard and knock me off my feet, leaving me struggling to find the ground beneath me, arms flailing, coughing and spewing the salty water that keeps crashing in my face, burning my eyes, and stinging my skin. When I was driving down the road today, for some reason my mind wandered to the day, hour, and minute Emma took her last breath. I remember walking out of our bedroom and seeing Carleigh. We asked her to come into our room and told her what had happened. I can't remember what it was Carleigh was so concerned about now, but she was so upset that she had not been able to do something for Emma. Her little body just collapsed in our arms and she began to sob. As I recalled these events tears began to stream down my face and my body began to shake. I couldn't cry though, because I was headed to the presentation for Emma's Hugs, and I didn't take my make-up with me! Lesson learned...always take make-up to important meetings. You never know when a sobbing attack may come.

So, the book Angie Smith wrote about her journey through grieving the loss of their baby, Audrey spoke to my soul. I loved the reminder that God never backs down. She writes...
He never backs down,though, and I am grateful for that love. It is the love of a Father who Himself is well acquainted with sorrow. It is the love of a Father who has lost His Son. He understands the ranting and door-slamming. The emptiness that wraps around me when I think of my sweet Audrey [Emma]. He knows. And He only has one request. Bring it to Me, Angie [Christy]. Every time the anger roars in your heart. Bring it to Me. Every time you feel like nobody hears you. Bring it to Me. When you think it isn't fair. When you think it isn't true. When you can't think at all. Bring it to My feet, and I will make an altar from your suffering.


Isn't that something? She also writes, "As a Christian, I know that I am called to glorify the Lord no matter the circumstance, but that doesn't mean it's going to make sense." That's the hard part, for me anyway. She also says we have to make a choice. "Either we will go through life as bitter servants, or we will make Him famous with our love. I want Him to be famous." I do too. Right now, if I'm honest though, I'm pretty darn bitter. Time...in time.

Well, for not knowing what to write, I sure wrote a lot, huh? I will close for now. Here is a final thought or two from Angie...
To hurt so deeply is a sign that we live in a fallen world, not that we serve a small God.

To love Him in spite of our pain is a gift He freely gives to those who will accept it.

Daily I must remind myself that He is not threatened by my doubt nearly as much as He is glorified by my faith. We are vessels of hope, you and I, made in the image of Jesus, breathing in this world as we yearn for Him.


"He heals the brokenhearted and binds up their wounds." Psalm 147:3

7 comments:

  1. I'm sorry you have to walk through these valleys and wish I could help carry you through. I hope you know you are loved, admired, cherished, and idolized. It was so good to get to see you guys, if even for a minute, last weekend. Thanks for taking the time to stop. I wish we could have spent more time together. Hopefully, you guys will be in town when I come down next. Should be soon. Love you dearly!

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  2. Such touching and heart felt words. Praying for you and your family as you journey in the valley.
    Such words of wisdom fron Angie's book. So true, that God will take all the hurts and frustration and emptiness and lovingly place them on the alter of suffering.
    You and Angie are indeed making God famous with your love (weather or not you feel it right now.)
    Praying for God's peace and love and hope and strength to fill your heart and mind.
    Love and hugs and prayers,
    Debi

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  3. I sometimes check Angie's blog, and would like to read her book, eventually.
    I'm glad that you're able to, through Emma's Hugs, have an even broader platform to raise awareness. I've never read a description of INCL that was that specific -- it's hard to read. Thank you for sharing your time in the fight against Batten, and for sharing your struggle with all of us...

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  4. Well said Christy! Have you said in a prior post this club you have joined not one that you where wanting to be a part of. I can assure you, I do not know a mother in this world that has lost a child that has not a moment of bitterness, but your faith will turn that bitterness into motivation and in turn make HIM famous!

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  5. Praying for you...

    ~Jaime Richards-Grigsby

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  6. May God wrap you in his arms and give the comfort only he can provide. Thank you so much for sharing with us Christy. You continue to educate, inspire, and enlighten those around you. I am so sorry for your pain. What amazes me most is the strength that you exhibit every time I see you. A strength that only comes from God. I know every day, you must come across instances that bring back the feelings of grief, but you forge ahead. Just know that I think of you amd Emma every day, and am so grateful for the blessing of having you all in my life. We miss you sweet Em. Stay strong Mommy, and know that we are all here for you. Jami

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