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I am… (Shannon)

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 comments… add one

  • Sarah Saturday, April 5, 2008, 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!

  • claire Saturday, April 5, 2008, 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.

  • Jan Sunday, April 6, 2008, 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.

  • Kim Sunday, April 6, 2008, 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.

  • Elizabeth Monday, April 7, 2008, 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.

  • sarah Monday, April 7, 2008, 6:55 pm

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

  • Jessica Monday, April 7, 2008, 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.

  • Carolyn Tuesday, April 8, 2008, 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.

  • Erica Wednesday, April 9, 2008, 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

  • Alana Thursday, April 17, 2008, 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.

  • Val Saturday, April 19, 2008, 7:18 pm

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

  • Kristin Thursday, April 24, 2008, 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.

  • michele Friday, April 25, 2008, 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.

  • Andrea Monday, April 28, 2008, 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.

  • MotherOf ASpecialChild Saturday, May 3, 2008, 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.

  • Sarah Beck Tuesday, May 6, 2008, 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…

  • Jenn Thursday, June 5, 2008, 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!

  • Krisha Tuesday, July 1, 2008, 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.

  • Maria Friday, July 25, 2008, 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.

  • rayna Sunday, May 17, 2009, 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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