This Little Light of Mine
The window in my laundry room faces west. Folding laundry is out of the question about an hour before the sunset; I have to squint and the glare distracts me. The harsh light is another great excuse to skip laundry chores. But, just after the brightness is muted by the tips of the pine trees or low lying clouds, I can return to folding. The gentle light of dusk, sometimes with hints of pink or orange, feels peaceful in the room I generally loathe. Light is tricky that way; sometimes callous, but within a few moments, saturated and rich like this sunset outside my laundry room window tonight.
Merritt reminds me of the sunlight. She turns six years old today. Dark, ominous storm clouds filtered any hint of a sunny day when her doctors told us, “She may live to two.” But over these last six years Merritt has flooded our lives with that peaceful kind of light. Her presence doesn’t shine brightly, like the other kids, brilliant and big. She is the quiet light, the moments before dusk.
At the beach a couple of weeks ago we watched the sun sink over the bay. You physically can not walk away from a sunset. The pull of its thick colors wraps up all the worry and scorn and ugliness of a day and puts it aside, begging you to be calm. That’s how Merritt’s light shines.
Bright sun is one dimensional. Merritt’s sun, the purples, filtering through the clouds, with glimmers of pink, yes lots of pink, is complex. She doesn’t smile or giggle or say, “I love you”, yet I feel a depth of love for her that goes beyond the surface of loving a child. God taught me how to look for His light in Merritt. I am blessed to have felt the warmth and peace of her light for these precious six years.
To learn more about mitochondrial diseases or make a donation toward research, visit www.umdf.org
20 Responses to “This Little Light of Mine”
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August 25th, 2007 at 10:12 pm
Happy Birthday to your special ray of sunlight. May God continue to use her to shine His light in
your family!
BTW, you have a widow in your laundry room! WOW! I have a little closet for a laundry room. I
painted it bright yellow a couple of years ago to brighten it up………a window……I’m jealous!
August 25th, 2007 at 10:56 pm
Kids with special needs always shine like that. Makes me sad that more people don’t realize it and are so willing to abort a child that MIGHT have a problem. They are cutting their life experiences by more than half.
Happy birthday, Sunshine! :o)
August 26th, 2007 at 7:52 am
What a beautiful post. Happy birthday to the birthday girl, and I will pray for you all. God bless you.
August 26th, 2007 at 12:34 pm
Beautifully put!
Happy birthday, Merritt.
August 26th, 2007 at 9:12 pm
Happy Birthday to beautiful Merritt… your eternal sunrise. Your post today is a magnificent gift to all who read it.
God Bless you all…
Sharon - Pinks & Blues Girls
August 26th, 2007 at 9:28 pm
Our cups runneth over thanks to the depth of joy Merritt and her family have brought to our lives. We are ever grateful and thank God for these past six years!
Grandma and Grandpa P
August 26th, 2007 at 10:01 pm
Happy Birthday to my sweet girlfriend! You have touched our life in such a wonderful way. You bring a smile to my face everytime I think of you! You are a ray of sunshine to all who know you. Merritt you have the most wonderful parents and may God continue to bless you and your wonderful devoted family. We love you and HAPPY HAPPY DAY to you!
Much love and hugs,
The Copelands
Kathy your post today was so touching and your so blessed with the way you write your words! Can’t wait to get that book in my hands!
August 26th, 2007 at 10:08 pm
HAPPY BIRTHDAY Merritt! Six years–that’s a great milestone. I’ve always loved the Biblical references to light, so Kathy I think your reference is perfect. It’s been great to watch you and your family learn, grow and share through your journey with Merritt.
August 26th, 2007 at 10:13 pm
What a blessing little Merritt is. It is amazing what we can learn from our young ones.
That is a beautiful photo, and beautiful thoughts to go along with it. Thank you for sharing. Happy Birthday to your little girl!
Jane, P&B Girls
August 26th, 2007 at 11:57 pm
Beautifully put, Kathy. The best to all of you. Birthday cheers to Merritt.
God be with you - Love, Lynn
August 27th, 2007 at 12:34 am
Kathy,
I have another favorite post! Beautifully written and describes Merritt perfectly. Happy Birthday Merritt!!! I’ll think of Merritt when I get the pleasure of seeing the sunset. Love, Susan
August 27th, 2007 at 8:26 am
Kathy,
I recently began reading your writings. I have a little one with mitochondrial disease. He is 15 months and has Leigh’s disease and complex 1. You put my thoughts into words. I have described our lives as perfect. Not perfect the way we would have chosen, but perfect the way it is. Special children ease your life back into the calm even during the most trying times. Happy Birthday to your Ray of Sunshine!!!!!!!
Melissa
August 28th, 2007 at 2:51 am
Kathy,
I don’t visit your site as much as I should…for reason’s a mom who has a child with a mitochondrial disease can understand…denial! But tonight I can’t seem to sleep. Had our appontment with the neurologist today and my mind is racing. You have a true gift for putting thoughts into words. Merritt certainly is lucky to have a mom who loves her so entirely and sees her for the belssing she is. I strive every day to love my baby past my own dispair, it’s the least he deserves. You give me hope.
Happy 6th birthday, Merritt. What an achievement! Keep beating those odds!
Mary Beth
August 28th, 2007 at 1:26 pm
Merritt
Happy Happy Belated Birthday! Your “Light of Life” has shone so bright on so many people. It has been said that “lighting one little candle” can make such a difference. Well, Merritt, your light will eternally make a difference in so many lives. May God Bless You and your family.
Pat Green
August 29th, 2007 at 3:07 am
You write that through Merritt, God “taught me how to look for His light.” Through you and your family’s love for Merritt, we see the Hand of God. Thank you, Sally Domm
August 29th, 2007 at 5:31 pm
Kathy, what a beautiful post. we live hundreds of miles away and yet we are both a part of a SPECIAL family. Those that see only the “outside” of our lives usually feel sorry for us. Truly that is never the case. We are blessed to have the purest love ever imaginable living in our own homes!
God bless you and your family.
August 29th, 2007 at 9:59 pm
Dearest Merritt,
I am late with this wishing. My heart overflows with the gifts you’ve imparted to all of us who’ve come to know you through your dear Mom. You, Merritt, and,she, are truly God’s vessels overflowing with love and faith. Thank you dear little Sunshine. Thoughts of you will always bring the sun shining no matter how severe the darkness.
Happy Birthday
Betty D.
August 30th, 2007 at 12:32 am
Dear John and Kathy,
You have had and will continue to have a powerful influence over
all who meet you and your adorable children. On this birthday for Merritt may you know that beauty comes in many forms…and God
uses all of His children to bring blessing.
We love you all and pray daily that your testimony is shared with many who seek to know how you have come to peace with the mystery that medical science has yet to understand. Much love to all.
Aunt Debby
September 10th, 2007 at 11:36 am
Hi Kathy,
You remind me to look for the light when sometimes I see only the ominous clouds. Thanks for the attitude adjustment
October 10th, 2007 at 5:13 pm
What\’s a web surfer to do? I was going along, searching for some info on Girl gone wild beach, and saw a link here. You can bet I\’ll be bookmarking this site TODAY (Wednesday). Great post!