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)
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
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.
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.
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,
Lauren
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.
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!
God bless you. Your strength is incredible.
That is such a BEAUTIFUL story. Thank you for reminding all of us of the important things in life.
God bless you
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.
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?
thank you for sharing your touching story. you and your family will be in my thoughts and prayers.
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.
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.
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.
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.
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.
Wow! Thanks so much for sharing. You are so right. Enjoy your gift.
Many blessings.
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.
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!
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.
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…
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.)
M is a treasure sent to you by God. cherish her. you are an amazing woman as well. i am praying for your family.
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.
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.
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.
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.
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.
xxx
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.
Thank you for sharing your story. You have touched my heart and reminded me what is really important in life.
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.
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.
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*
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.
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.
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.
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.
I’m without words. You are the very definition of the word “Mother.” Thank you.
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!
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
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
Incredibly redefining.
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.
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.
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.
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.
Michaelene
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
This brought tears to my eyes. Thank you for sharing your story mama.
God bless you and your little ones.
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.