So, for a few years I’ve needed to do this. I get around to things when I have time. Today I had a little…I have wanted to do a quick summary post for people who have never read Noah’s story so they can be up to speed. Here it is…

Whenever I meet new people they ask me if I have children. My answer is usually dependent upon the vibe I feel from that person, and, quite frankly, how much time I have to answer. But, let’s pretend you and I have just met, or maybe we have known each other for years but are just reconnecting and that we have a substantial amount of time to get to know one another’s stories. I’ll go first, since you asked, and then I’d love to hear your story, because we all have one and yours is important to tell.

You asked if I had any children. I do. I could stare at my daughter, Emily, for the rest of time and never tire of the beauty and life she brings to the world. I am in awe that my husband, Jason and I have been entrusted with her life here on earth. We also have a son named Noah, but he passed away. It’s a long story, but the short of it is Noah was born healthy and beautiful but quickly showed signs of illness at about four weeks. He was breast fed but had chronic diarrhea, was increasingly weak, had a rash and had something called hypotonia, or floppiness. We took him to the doctor who said he just had a virus but that we needed to get his eyes checked by a neurologist at some point because they noticed he had nystagmus, a condition where your eyes ‘click’ or get stuck in the corners of your eyes. On August 2nd, 2006, just 7 and a half weeks after Noah was born, we took him to an outpatient neurology appointment. A lot happened during the next 5.5 months, which is the content of this blog from August 2006 to January 2007. You can click here to read from the beginning. We didn’t leave the hospital again until January 13th, 2007, the day after we took Noah off life support.

This blog started as a place to update family and friends about Noah’s medical status from his stay at Children’s Hospital. Since then it has served many other purposes, including my place to grieve, scream, shout, and learn to live and laugh again. I had said that if Noah ever died, I would surely die. That cold day in January I did, indeed, die. But I died to a way of living that was completely self-serving and me-focused. The impact my life had made on the world in 35 years paled in comparison to the one Noah had made in his short 7 months. I died, but I was also born that day to live a life here on earth worth living.

There isn’t a day that goes by that I don’t think of Noah. I wear a bracelet with his beautiful face on it every day and each night our daughter asks for a story that always begins, “Once upon a time, Emily and Noah went on a great adventure…” Just because I am able to share my story, wear a smile on my face and keep pressing forward does not mean I am ‘over it’ or that it has been easy. I’m not going to candy coat that the loss of a child absolutely sucks. There are no words to describe the daily reality of milestones he’ll never reach. January 12th, 2007 was the last time I tucked Noah into bed. I will never straighten his tie for the prom. I will never know what it is like to hear him say my name. These are heart wrenching realities for anyone who has lost a child, but the heartache pales in comparison to all that Noah’s short life continues to teach me and the many others who have fallen in love with him.

I have found hope that in sharing our story we can encourage others, knowing we aren’t the only ones on this earth to suffer loss, heartache or disappointment…especially in the way we think God is supposed to work. Even though our son died, I have hope and assurance that God is good and can see a bigger picture, one more beautiful than I can comprehend…and I have found peace. How about you? What is your story?



23 Responses

  1. I hadn’t seen that picture in a while and I have to say, it took my breath away. You brought tears to my eyes when you said you’d never straighten Noah’s tie for prom…I’ve been able to do those things. It breaks my heart to know some won’t. You have encouraged me not to take moments with my children for granted. Thanks for all your words of wisdom. Your story is an inspiration.

  2. Oh, those peaceful pictures of Noah stir such strong emotions. I rejoice for his sake that he is with our Heavenly Father, completely perfect. But the mother’s heart in me just absolutely breaks.

    As a Christian mom, you hear about how your children are not “yours” but are truly God’s, and in my head I understood and knew that to be true. But it wasn’t until I stayed up laaaaaate into the night about a year and a half ago as my baby boy slept upstairs, reading your blog from the beginning through the tears streaming down my face, that the Lord opened the eyes of my HEART and I began to understand more deeply my place in our children’s lives. My baby boy just turned 2 and also became a big brother to a little sister this summer. I am thankful for the perspective Noah’s life, and passing, has given me with my own little ones.

    (And I still can’t hear a U2 song without thinking of Noah.) :o)

  3. I’ve read your blog and remember January 2007 very well. I gave birth to my first, Abigail on Jan 31 and to our second, Luke in March of this year. I think of Noah often because of my daugher and their closeness in age.

    Thank you for sharing your difficult journey. My family is fighting for my niece Gracie, 7 yrs old, who has a brain tumor. I cannot tell you how many times your words and strength have encouraged my heart as we watch her struggle.

    I want you to know, I’ll remember Noah with you, even though I never met him in person. He changed my life and the way I love and cherish my kids every day.

  4. I don’t have a story but I remember every moment that I opened your blog just HOPING there was a change in his condition. I think of Noah and of all of you. (((HUGS))) to you today! Love you so much!

  5. I haven’t blogged in ages (not only my own, but reading my favorites) and something drew me here today. Very glad to have re-read your story! As always…

  6. I’ve read your blog since september of 06. I had just graduated from Teen Mania’s Honor Academy.
    My faith was a little shaken due to some life changes and reading your blog was a blessing.

    I was only 20 yrs old at the time but I felt like if we were next door neighbors we would be best friends.

    Noah’s story has taught me so much. I sincerely appreciate your honesty and realness. Thank you for being straight up about dealing with heartache and anger and continuing to follow Jesus.

    You are such a cool person with a beautiful heart.
    It will be fun to hang out with you and your family in Heaven one day! See ya then :]

  7. Thanks Adrienne. I certeinly think of Noah often. You always have had a way with words and although we have just met…I certeinly look forward to seeing you when we can. I met you after Noah left to be with the Lord…but his life has impacted me even now! Thanks for sharing his story…your story..again.

  8. My story stems from something other than losing a child — it comes from the losing and finding my husband. But anyway…your story is amazing. I started reading your blog on January 12, 2007. I remember the day as if it were yesterday as I was at work…read every entry and cried, went home and hugged my little girl and my 3 month old son that had his own health issues.
    I think of Noah often…Carlie still has the picture she drew of him in heaven with the red balloon she sent him. I know your story has touched my life, my daughters and that of so many more! Love you!

  9. Adrienne, we’ve never met in person, we don’t live in the same state and you wouldn’t know me if you passed me on the street. That being said, your honesty and writing continue to touch my heart. I was sent to your blog just before Noah went to heaven, from a friend of a friend… we prayed for you all then and continue to keep you in our hearts and prayers.
    Our oldest daughter would have been 8 years old on September 28, and her skin and her smell and her face are just as clear to me as the day I held her in my arms for the first and last time. The grief never goes away, it ebbs with the seasons and the years… I am happy to say that God has blessed us doubly, just as He did with Job, and we’ve have four beautiful children since we lost Alexandra… including our youngest and only living daughter, Trinity. My story is too long to share, but I want to thank you for the reminder of the journey of grief, of how hard it is to answer the simple question “How many children do you have”… of the heartache and joys that we have as mothers.. of the incredible privelege God has given us.

    You remain in our prayers, dear one!
    Many hugs from across the country and thru cyberspace, Erin Preiser

  10. On Friday, I had emergency surgery for a ruptured ectopic pregnancy. I nearly lost my life. In those moments, I realized how selfishly I have been living. I long for another child, but my longing for another child has taken precedence in my life. God broke me on that day. He made me realize that I am nothing, dust, without Him, and that I have control over none of the things I THOUGHT I controlled.

    I have tears of joy in my eyes, because He has given me another chance. I am listening to the Newsboys sing, “Million Pieces” and I am crying my ever-loving eyes out.

    I asked God on Friday morning to lead me on what to do with this pain I was having in my side. I didn’t want to be that hypochondriacal patient that every OB doctor has. I was planning on just going to Costco but something prompted me to stop at the doctor’s. She says I would have just bled out on the floor at Costco…probably wouldn’t have lived long enough to make it home.

    Right before surgery, my eyes blurred as I watched my children give me kisses. The prayer changed. “God, use this life of vapor and make it as gold for YOUR kingdom.”

    Wouldn’t you know, Adrienne? Yesterday a friend called and said, point blank, “I want what you have. Tell me about the God you believe in.”

    Crying again.

    I love to read about how Noah’s life has (and is) shaped who you are. What a blessing he is!

  11. I love your blog, so, so good. Reminds me not to tie my hopes and dreams to this world, to live fully each day, to be ready to meet Jesus, and I get to see sweet Noah’s face, who lives in heaven and who lives in your heart.

  12. He is so beautiful Adrienne! So peaceful and such an angel. An image frozen in tim and yet and image that will alays produce tears from this mother’s eyes for your mother’s heart break and loss. Even though you rejoice in Noah’s life and place with God now, I know how your arms must ache to feel the weight of his body, how your senses must miss his smell and his softness and how you must crave just one for kiss on that bridge of his nose, just made for Mommy. I hope your reunion with your preciou boy is everything you hope for and more. Until then my dear friend, my heart and tears are for you and sweet Noah.

  13. Hi Adrienne & Jason,
    Just wanted to say that I still think of your little Noah often whenever I hear certain songs on the radio. What wonderful parents you two are….just wanted to say that I still and always will remember your little prince. Take care. – Nurse Maria

  14. Hi,
    My name is Dawn.
    I had (excuse me…have) a son Named Noah too. And he passed away also.
    He was not sick though. It was from a terrible car accident. Much like what happened to Steven Curits Chapmans daughter. Our accident was the day after his 5th birthday, life support was turned off 2 days later.
    I’m always looking, searching and digging for people to relate to without success.

    I hope that you are doing well, and you can recognize sunshine in your life.
    As for myself, I live one moment at a time.

    God Bless,

  15. Wow! You and your family are so strong and so beautiful to share your grief and love, to teach through your tears. I have 2 perfectly normal girls, and then I had JB. He changed my life in so many ways. In the midst of dealing with JB I also had his younger brother 1 year after him, who had some mild issues as well. Their medical issues brought me inpatience, exhaustion, frustration, sometimes darkness & tears; and yet they also brought me love, laughter, joy, understanding, grit, peace and most of all, he brought me to God. Would I love to choose the easy way out? Maybe. But I wouldn’t know life the way I do now. Praise God for teaching us through our little miracle babies!!

  16. I have not been to your blog in years but would think of Noah often. I just had twins after 11 years of infertility. One of my twins is a boy. I seem to always think of Noah when I look at my son. How truely blessed we are to have children. I pray often for your family and am thrilled with your latest news. I pray for peace to you.

  17. Your story of Noah has moved me greatly..may I leave you a quote from Helen Keller “What we have once enjoyed we can never lose, all that we love deeply becomes part of us”


  18. Adrienne, I just found your blog. I’ve been trying to catch up on your story when I have time. Your story and faith in God is very inspiring. Thank you for sharing. Your little Noah was beautiful.

    I also have a son named Noah (Noah Tobias – “Take comfort, God is good). He was diagnosed with anencephaly when I was 13 weeks pregnant. God allowed me to carry him for 31 weeks before he passed away and was still born April 15, 2010. I am learning every day how to relinquish my life to Him, accept His will for my life, and give Him my life to do with as He sees fit – it hasn’t been easy.

    Again, thank you for sharing your story and your faith – I will continue to follow what God is doing in your life.

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