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I am… (Shannon)

April 2, 2008

I am a mother, just like the rest of the posters here, I’ve been reading since the beginning of this website, but have yet to see a story like mine. Therefore I decided the time has come for me to share. I have two daughters. The first was born in 2004. She left stretch marks that began on my upper thighs and reached upwards like flames around my belly button. They faded rather quickly from bright red to beige matching my skin tone. I only gained 30 pounds with her, and in two years time I was down to my lightest weight (180 lbs, I’m 5 foot, 11 inches tall). My first daughter, J, is a shining star, a streak of light and sound. She is strong, fierce, fun, and a constant source of joy (and headaches, I have a strong willed child). She was the unplanned blessing, bringing my boyfriend and me together as husband and wife, making us into a family. In June 2006 I became pregnant a second time. We believed that this was likely our last child, so my pregnancy was something I wanted to enjoy as much as I could. How I treasured every kick and wiggle. I didn’t get any new stretch marks, gained 35 pounds. It was an uneventful pregnancy. My second baby girl, M, came on her due date, after 8 hours of agonizing labor as she was “sunny side up”. Finally she turned, I pushed five minuets and my blessing had arrived. This is generally what the website is about, our pregnancy and labor stories, but my second daughter’s story began later, and it has changed the person I am, the sort of mother I am. It has changed everything. M developed normally until she was 5 months. At that time we noticed she had a bit of a tremor, it grew worse, and at 6.5 months she was seen by specialists. The diagnosis rocked our world. She has a form of Mitochondrial Disease, known specifically as Leigh’s Disease. The mitochondria in her cells are unable to produce enough energy to properly fuel her body, in my daughter’s case this is due to a genetic mutation. The prognosis is poor; life expectancy varies from months to a few years. Leigh’s Disease attacks her brain, the area that controls motor control (both voluntary and involuntary) is being eaten away at, a little bit at a time. Eventually, her brain will no longer send the message to her lungs to breath. At the time of diagnosis she was sitting supported, babbling, just shaky. She has regressed, she no longer sits. She no longer rolls or holds her head up. The talking has ceased, she no longer cries and the silence is deafening. M is not able to hold things in her hands; her big sister is hit hard by her no longer holding any toys. She rarely makes eye contact and each smile, rare as they are is a celebration. We are loosing our blessed girl, far too quickly. So, that is my story. As I type she is on my lap, staring contentedly into space. The cocktail of drugs she takes daily is designed to control seizures and make her as comfortable as possible. Some days she is present, some days her little mind is in a far off place. She is fed by a tube in belly, scars on her beautiful skin. Her eyes are shockingly blue, her hair brown like mine, and she is beautiful and absolutely perfect. In just a year I came to know her, and came to know that I must let her go. I read the stories here, finding comfort in the other women who have lost children, but I am different from those who loose in childbirth. I read the other stories, women who seem so consumed with their bodies changes they almost miss the miracle before them. I cannot help but want to scream. I no longer care about the stretch marks that scar me, or the extra pounds around my middle caused more by emotional eating than baby weight gain. I am proud that my arms are strong to rock, my back able to bear the weight of motherhood. My eyes are older now, but I’ve seen such beauty along with all the sadness. My feet have walked miles comforting children; it’s made my legs strong. My breasts are unrecognizable after nursing two girls, but I am proud that I was able, and will continue to nurse M as long as we can. I have learned so much about faith, so much about myself, I have learned how amazing a man my husband really is. Our babies are beautiful, treasure them. In the end the size of jeans you wear is so little compared to the smile they give. That is my story, I am proud to have shared.

(a family portraite as seen through the eyes of my four year old)


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70 Responses to “I am… (Shannon)”

  1. Kim Says:
    April 2nd, 2008 at 9:00 am

    Im crying as i read your story. it touched my heart. You are such a strong person to do what you do everyday. Im so sorry for everything that you are going through and are going to go through. YOu will be in my prayers

  2. Dee Says:
    April 2nd, 2008 at 9:10 am

    I am so very sorry to learn that you will ultimately lose your beautiful daughter to Leigh’s Disease.

    The wisdom she has imparted to you in her lifetime is beautiful, and all of it so true. So many mothers tend to focus on the negative in terms of changes to their bodies as a result of pregnancy and childbirth–forgetting, at times, the miracle and beauty of babies and our bodies. How strong the heart is, if only the mind could be as strong all the time.

    May your daughter continue to grace your life with her gorgeous presence long after she is no longer with you physically. My heart goes out to you knowing you will face her too-early loss.

    I’m sending love your way, and hers, through the universe. And now, I’m going to go hug my babies (1 and 3) extra hard and remind myself what is really important on a more regular basis.

  3. Miranda Says:
    April 2nd, 2008 at 9:18 am

    I have no words ..i cannot possibly imagine what you are feeling at this time ..but i pray peace for you and your little angel. Your words remind us how fragile life really is, and how we take advantage of it.

  4. Lauren Says:
    April 2nd, 2008 at 9:35 am

    I have been looking on this site for a year now. I am not a mother, but cannot wait to become one. I felt compelled to tell you how strong of a women you are. I can’t imagine what you and your family are going through. You really put what giving birth is all about into perspective for me. Thank-you for sharing your story. It brought tears to my eyes.

    God bless,

  5. deedee Says:
    April 2nd, 2008 at 10:23 am

    my heart goers out to you. you and your beautiful family will be in my thoughts and we are sending you good energy. you are an amazing woman and mother. take care.

  6. Grace L. Says:
    April 2nd, 2008 at 10:34 am

    Wow, I’m tearing up after reading your story as my 10-month-old cuddles in my arms. It’s so sad, yet your outlook is so positive. Like the previous poster said, I want to cherish every moment with my little girl too.

    Thank you for sharing, and may you enjoy your sweet little M!

  7. Brooke Says:
    April 2nd, 2008 at 10:34 am

    God bless you. Your strength is incredible.

  8. judi Says:
    April 2nd, 2008 at 11:04 am

    That is such a BEAUTIFUL story. Thank you for reminding all of us of the important things in life.

    God bless you

  9. Sheila Says:
    April 2nd, 2008 at 11:39 am

    I’m bawling right now. Not only because of the inevitable “loss” of your little girl but because of the strength, wisdom and beauty that pours out of this post. I almost lost my daughter but got lucky. But I can’t imagine what you are going through and I won’t pretend to. Your family will be in my prayers.

  10. Rebekah Says:
    April 2nd, 2008 at 11:40 am

    Thank you so much for sharing your story. My heart aches for you and your family, and my prayers are with you all.

    Your story really touched me, your writing captures so much emotion. I feel like I connected with you as I read. Even though my youngest is napping right now, I have the greatest urge to go hold her.

    Shannon, you summed it up perfectly, “In the end the size of jeans you wear is so little compared to the smile they give.” This is the gospel truth. Absolutely. Hugs and love to you, mama, as you continue on this painful journey with M. ((((hugs)))) Your grace, wisdom, and insight are so inspiring. Keep cherishing the smiles and cuddles. And if it’s not too much trouble, keep us posted?

  11. sugar mama! Says:
    April 2nd, 2008 at 1:59 pm

    thank you for sharing your touching story. you and your family will be in my thoughts and prayers.

  12. Helen Says:
    April 2nd, 2008 at 3:16 pm

    God bless you and your family. I can’t even begin to imagine both the pain and the strength you have. Love and prayers from Ithaca, NY.

  13. April Says:
    April 2nd, 2008 at 3:26 pm

    Thank you for sharing your beautiful story. Your eloquence and grace was so moving to me. I am due in two weeks, and have been coming here to feel connected to other mothers in their joys, fears, insecurities, and strengths. Your elegant entry encapsulated it all; I send you peace and love.

  14. Milk Mama Says:
    April 2nd, 2008 at 3:26 pm

    I am so sorry that your angel must leave you, but I am assured that you are not sorry that you were ever the mother to her! God bless your family. All of you. May He comfort you in your times of sadness.

  15. krissy Says:
    April 2nd, 2008 at 3:51 pm

    I cried when i read your story. God bless you and your family. After reading your story, I am sorry i ever complained about my stretch marks, weight, & how tired i am at the end of the day from chasing around my 15 month old. You put it all in perspective for me. thank you.

  16. Lori Says:
    April 2nd, 2008 at 4:16 pm

    Thank you for the powerful reminder of how precious life is. I wish many blessings and peace on you and your family as you journey ahead.

  17. Trenton Says:
    April 2nd, 2008 at 4:56 pm

    Wow! Thanks so much for sharing. You are so right. Enjoy your gift.

    Many blessings.

  18. Jo Says:
    April 2nd, 2008 at 5:15 pm

    thank you for sharing your story, it touched me deeply. Enjoy each moment you have with your darling M. Certainly puts my day back into perspective. thank you.

  19. Melinda Says:
    April 2nd, 2008 at 5:39 pm

    I don’t know what to say other than I am sorry. I am sorry you will lose this precious gift but I know that she has blessed your life in the ways that matter most to you. Many prayers for you and your family!

  20. Anon Says:
    April 2nd, 2008 at 6:04 pm

    I am so sorry to hear about your little girls disease. I cried reading your story. Cherish every second you have with her, I’m sure you already do. She was sent here for a reason and soon will be an angel in God’s kingdom.

  21. erica Says:
    April 2nd, 2008 at 6:42 pm

    Oh My Goodness. I cannot tell you how sorry I am that you have to all go through this…I have a little girl who will be one in May, and I try and put myself in your shoes, and I just cry…I cannot imagine how difficult this must be for each one of you, every single day. may God be with you and your beautiful daughter and your husband and your baby’s older sister as well. May you find comfort and peace and know that when she is no longer in this world with us, she will be waiting for you to be with her again one day, and until that time, she will be with you, all of the time, day and night, watching over you and loving you and thanking you for all of your unbelievable love and care. I know she loves her mommy and daddy and sister more than anything. I will pray for a miracle for her and for you and I am thinking of you….Blessings forever….you are an AMAZING mother…

  22. Becky Says:
    April 2nd, 2008 at 6:42 pm

    While I can’t relate to Leigh’s, I can relate to mitochondrial issues and the effect they have. My family has them as well, and I look at my son knowing he had a 54% risk of it affecting him. I pray your strength stays strong and your love for M carries you. I have no words, and I think there are none, except thank you for sharing your story with us. (And the picture with the feet, priceless.)

  23. Nina Says:
    April 2nd, 2008 at 7:24 pm

    M is a treasure sent to you by God. cherish her. you are an amazing woman as well. i am praying for your family.

  24. lisa Says:
    April 2nd, 2008 at 7:58 pm

    your story is so sad and also so beautiful. my youngest daughter was stillborn in 2003 (she has an identical twin sister who survived) and although it isn’t the same as what you are going through, i also know what it is to lose a cnild. i wish you joy in every moment you have with your precious daughter, you are blessed to have each other.

  25. carole Says:
    April 2nd, 2008 at 9:25 pm

    thank you for the gift you give to me of perspective. thank you for sharing your story and my prayers will be with you and your family.

  26. Cyn Says:
    April 2nd, 2008 at 10:00 pm

    This entry has made me feel like a horrible, selfish person. I look in the mirror and am digusted by what my little girl has done to my breasts, but I never even think that I am so lucky to have them damaged, and to have her in perfect health.

    I am so, so sorry.

  27. victoria Says:
    April 2nd, 2008 at 10:51 pm

    I am wiping away my tears to tell you that today, your post, your voice, has changed me in a small but significant way. Thank you, and bless you and your family.

  28. beki Says:
    April 3rd, 2008 at 3:01 am

    my eyes filled up with tears when i read your story. i have so much respect and admiration for you, your such a strong woman. enjoy your precious angel for aslong as she is with you, and remember she picked you to be her mummy you were both ment to be together.
    my thoughts and prayers are with you. god bless.


  29. mary Says:
    April 3rd, 2008 at 3:11 am

    your story brought tears to my eyes. you are strong and wise. i wish you and your family the best. motherhood is true love. there is nothing more pure or absolute.

  30. Shannon Says:
    April 3rd, 2008 at 8:41 am

    Thank you for sharing your story. You have touched my heart and reminded me what is really important in life.

  31. Karinda Says:
    April 3rd, 2008 at 8:45 am

    Oh, sweetie. I want to hug your entire family right now. You are such an amazing person. Your story brought me to tears. I cannot imagine the strength you have or the emotions you go through. All I know is that you amaze me and I am honored that you shared your story.

  32. Violet Says:
    April 3rd, 2008 at 8:55 am

    Your story has touched me. Thank you for posting. I am fighting back tears as I type this. I also have two little girls, and your story has made me reflect on them…I can’t even imagine what you’re going through. I will pray so that you can stay strong and take care of your babies.

  33. Maijken Says:
    April 3rd, 2008 at 9:12 am

    this is so sad, and so touching. i can’t imagine having my baby come home with me, and having to watch her slowly die. and putting her to bed one night, not knowing if she’ll be awake the next morning. reading this just broke my heart.
    i’m so sorry that this happened to your family. but it’s good to know that you’re treasuring every moment, never knowing when it will be your last.
    God bless you and your family, and especially your littlest girl. *tears*

  34. Caurie Says:
    April 3rd, 2008 at 9:21 am

    My heart breaks for you. Thank you for reminding us all of what is truly important in life. I am so sorry that M’s precious time here will be cut short. You are in my thoughts and heart.

  35. Kier Says:
    April 3rd, 2008 at 10:49 am

    My heart is aching, hurting so badly for you. There are no words that I can think to say to express how deeply your story has affected me. You and your family will be in my daily thoughts and prayers. Thank you from the bottom of my heart for sharing this with us.

  36. Sarah Says:
    April 3rd, 2008 at 11:32 am

    I was crying as I read your story. I am going through a hard time as well. My 20 month old daughter was diagnosed with a rare blood disorder in October 2007. She is currently on Chemothearapy. Before we found out about her disease, I was obsessed with my body image, and even considered plastic surgery. Now I realize how shallow I was acting, and pray everyday that God lets me keep my baby girl. My thoughts and prayers are with you and yours.

  37. marjorie Says:
    April 3rd, 2008 at 1:32 pm

    I’m a teacher, and two years ago one of my students died of Leigh’s. I am so sorry to hear of what you are going through, and I send you my prayers. May you treasure every moment you have with your little one.

  38. Sarah Says:
    April 3rd, 2008 at 2:29 pm

    I’m without words. You are the very definition of the word “Mother.” Thank you.

  39. Alexis Says:
    April 3rd, 2008 at 3:24 pm

    God bless you and your family! Your story brought me to tears, your strength is amazing! I will keep you and your family in my prayers!

  40. mia Says:
    April 3rd, 2008 at 3:56 pm

    Thankyou for sharing your story shannon, i wish i could give you a hug, and have you feel all my love and compassion.

    your story touched me very deeply. And it makes me sad to the point of tears when ever i hear of children and babies suffering, Just know when her time in this physical body ceases that her soul will always live on and she will always be with you until the end of time.

    Love of love
    Mia xoxoxoxo

  41. Kim Says:
    April 3rd, 2008 at 4:52 pm

    Hi i just wanted to know if anyone had any links to charities for Leighs disease. This story really touched my heart and I would like help people like shannon and Her daughter and others in her situation. I want to make a difference. i need to

  42. Nikki Says:
    April 3rd, 2008 at 9:30 pm

    Incredibly redefining.

  43. kathy Says:
    April 4th, 2008 at 3:02 am

    Thank you for giving me perspective. You and your family will be in my prayers. I wish I had some word of comfort/wisdom but I don’t think there really are any. Thanks for sharing your amazing story.

  44. Andria Says:
    April 4th, 2008 at 7:43 am

    You are a strong and amazing woman. Your daughters are blessed to have such a loving and insightful mother. Thank you for sharing your story with us all, your words have increased the appreciation I have for my children and my body. You have touched me deeply.

  45. micaela Says:
    April 4th, 2008 at 10:01 am

    After I gave birth to my daughter, I am more emotional than I used to be. But anyone who wouldn’t be moved by this is heartless. I am crying even now after reading your post. What an amazing person you are to be able to face this head on and share your story with us. Although I honestly cannot comprehend the kind of hurt and sorrow you have felt and will feel, I thank you for sharing your story with us. How lucky your daughters are to have you for a mother; and how lucky your husband is to have such a wonderful person to go through this with. You and your family are in my prayers. God bless.

  46. Michaelene Says:
    April 4th, 2008 at 12:08 pm

    Thank you so much for sharing. I Pray that God will Bless you and your family with strenth and peace to share your beautiful journey with M. A multitude of Blessings and Prayers from Santa Fe, NM. Namaste.

  47. Elizabeth Says:
    April 4th, 2008 at 3:06 pm

    Thank you for sharing your story. My heart goes out to you and your family. God bless you and your precious children. Psalm 34:18

  48. jesse Says:
    April 4th, 2008 at 5:42 pm

    This brought tears to my eyes. Thank you for sharing your story mama.

  49. Allison Says:
    April 4th, 2008 at 6:56 pm

    God bless you and your little ones.

  50. haley Says:
    April 4th, 2008 at 10:46 pm

    I am now feeling truly awful about my thoughts and feelings throughout my pregnancy. I have everyday been consumed about my changing body and weight gain instead of praising God for this wonderful blessing he has bestowed upon me. I have six weeks left until my due date and truly believe I was meant to read this story today. I am amazed by your strength and outlook. I am also truly thankful to you for reminding me what is important. I believe God has a reason and purpose for everything far beyond our understanding. Your attitude and thoughts are truly an inspiration to me and should be to all. Never understimate the power of prayer and the power that God holds. God Bless You and know that you and your precious blessing of this child are and will remain in my prayers.

  51. Sarah Says:
    April 5th, 2008 at 12:26 am

    Matthew 19:14
    Jesus said, “Let the little children come to me, and do not hinder them, for the kingdom of heaven belongs to such as these.”

    My prayers are with you and your lovely family!

  52. claire Says:
    April 5th, 2008 at 5:21 pm

    I cried as I read your story, it really put things into perspective for me. We spend so much time worrying about what we don’t have and what we think we should have that we lose sight of the things that are really important. So what if we don’t lose a single pound of what we gain in pregnancy, or if our breasts and stomachs are a little saggy.It is our family and friends and the relationships we have with them that are important. I cannot imagine how I would cope if i was to lose my little girl. No parent should have to outlive their child, I think you are very brave and I pray that you and your family will have a lot more time left with your beautiful daughter.

  53. Jan Says:
    April 6th, 2008 at 5:04 pm

    Shannon, thank you for sharing your story and your strength. As you see from all the posts, your little M is changing lives! How many of us will have as much impact for the good as she already has? God picked the perfect family for M to do her work in this world. Bless you for being her voice.

  54. Kim Says:
    April 6th, 2008 at 10:42 pm

    I visited M’s page and saw your photos. They brought tears to my eyes. Your daughters are beautiful.
    Prayers for your sweet baby and your family.

  55. Elizabeth Says:
    April 7th, 2008 at 7:45 am

    your story brought so many tears to my eyes, i am so sorry for what you and your family are going through. thank you so much for sharing this, it really puts things into perspective and makes us appreciate our children and health so much more. it must have been hard. you will be in my prayers.

  56. sarah Says:
    April 7th, 2008 at 6:55 pm

    God bless you and your family. I’ll pray for you.

  57. Jessica Says:
    April 7th, 2008 at 8:05 pm

    I cried while reading your post and still have tears in my eyes…thank you for sharing your story and I am so sorry for all that you have and will endure. You are an inspiration to women all around the world.

  58. Carolyn Says:
    April 8th, 2008 at 12:54 am

    Blessings to you and your family. Thanks for sharing your story and may you have the strength to carry you through the rest of your journey. I’m sure your story will touch many hearts and hope that they take on board the valuable message youa re sharing. Peace be with you.

  59. Erica Says:
    April 9th, 2008 at 11:04 am

    I am so moved by your site “our girls” and the story of your little Marie, she is so beautiful. We are keeping you all in our prayers here in Northern Illinois…I prayed specifically this morning that it would be a good day for Marie, and for you. God Bless you all, forever! Erica

  60. Alana Says:
    April 17th, 2008 at 9:47 pm

    I cry as I read this. No one should have to watch their children like this and my heart breaks for you and your family. It is truly amazing how we find stenghth we never knew we had. Wishes to you and your family.

  61. Val Says:
    April 19th, 2008 at 7:18 pm

    Thank you. Thank you, thank you – for your story. My prayers are with you and your family.

  62. Kristin Says:
    April 24th, 2008 at 4:28 am

    Wow, I cried reading your story, and you are so true, so many women are so caught up in image that they dont see the actual miracle that has been given to them in having children. I am not all so innocent of this, but whenever I feel the slightest bit unhappy about my “after baby body” I think of all the people that can’t have kids, and struggle every day with that meanwhile I’m blessed with not one but three beautiful little girls. How can that compete to being “America’s Next top Model?”

    Your story is so powerful and I dont think anyone can hate their body after reading it. I’m only 6 weeks post parnum with my third daughter and sometimes I get so overwhelmed I let her scream in her bouncer so I can calm myself down. WSell, your story makes me want to run over and cuddle her for hours and thank God for having her in my life. I think you and your family sound like amazing people, and I thank you for posting this story.

  63. michele Says:
    April 25th, 2008 at 6:53 pm

    Thank you for your story. I have two little ones…twins that will be 4 in July. I can’t imagine what you are going through and what is to come. I will cherish my children a little more today because of you. Thank you.

  64. Andrea Says:
    April 28th, 2008 at 10:43 am

    Your story is a beautiful and inspiring story. I am one that has always been obsessed with my physical appearance… VERY ashamed of my stretch marks… which I now bear proudly. Your story has taught me that my body has truly been made beautiful by my most cherished gift… my 4 month old baby girl. You have taught me that my selfishness has hindered my ability to see myself and ultimately my girl for what it really is… MIRACULOUS! Thank you for your courage and love toward us all.

  65. MotherOf ASpecialChild Says:
    May 3rd, 2008 at 5:42 am

    I just had to leave a comment. I know it may get buried in the many others, but this child deserves it. I was crying as I read your page. Some of my tears were for your little girl, M. The others were for your strength. I have a child with special needs, but I could never imagine what it could be like to be in your position. I just pray that the days you have together aren’t seen as a countdown, but rather a celebration of her life, no matter how short it may be. She is your blessing, she grounds you. I know I appreciate my vision more now that my son has glaucoma. I know you must know more about the meanining of life than I could ever know. God bless you and your family.

  66. Sarah Beck Says:
    May 6th, 2008 at 9:03 pm

    I am heartbroken and bawling my eyes out and have been since I began reading your story and I can’t seem to calm my tears…I really don’t know what to say, but that you are in my prayers and that I am so thankful that I stumbled onto this site…I was just trying to find a solution to sagging breasts and tummies and I found this site…And I am thankful, because the reason I was on here, means nothing to me after reading your story…I have three boys myself and I have taken them for granted, which is making me cry my eyes out just thinking of just how much at this very moment…Thank you for sharing your story, and giving me a whole new outlook on life and what is really important, what REALLY matters, and that is my children and not the toll that bearing them has had on my body…I pray that God gives you the strength to carry on…You are in my prayers DAILY…May God bless that precious little girl and her very couragous and wise mother…

  67. Jenn Says:
    June 5th, 2008 at 11:38 pm

    Thank you for sharing your beautiful girl’s story…what a precious blessing she is and what an amazing mommy she’s been blessed with to! My little family is praying for your family every night during our bedtime prayers!

  68. Krisha Says:
    July 1st, 2008 at 6:39 am

    My neice Tayler Sonny was diagnosed with Leigh’s disease in March 08 at 15 months. It has hit our family so hard that we are currently forming a nonprofit organization to help families through this hard time. My heart goes out to anyone who knows anyone going through this situation. The foundation is still in its very early stages as of June 08 but I encourage you to keep your eyes out for us as we develop. We hope to help many families begining with our sister’s.

    Have strength shannon, you are holding an angel.

  69. Maria Says:
    July 25th, 2008 at 9:55 pm

    I am going to walk into my lil girls bedroom and kiss her right now. Thank you. Dont ever lose hope in the Might of God.

  70. rayna Says:
    May 17th, 2009 at 12:44 am

    i realize how old this article may be, but your story will last forever. I am sorry for your little angel and hope that peace finds her and you as well. i am pregnant and had been giving some thought to my changing body, but now i dont care, just as long as i do everything in my power to keep my little blessing.

    thank you for opening my eyes and making me realize what matters


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