Since August 2nd I have had a really tough time. Part of it is coming back from Mexico where I thoroughly enjoyed my family, new friends, and meeting locals…and the other part is that somehow, 2 years later, my emotions; anger, frustration, deep sadness and longing, all of these are more poignant than they were in the hospital with Noah. Maybe because then, while experiencing those same feelings, at least I could hold him and soak him in my tears. I could eat his toes, nuggle his sweetness and stare at his beautiful face. Now, I try to cry when I am alone. I know Em has seen me cry, but two years later, does she have to be dragged through my agony? Jason wants me to see a counselor, and I really want to, but I’m afraid I’ve left out some details lately that are probably appropriate at this point…So, remember how Jason and Em and I drove up to South Dakota for the 4th of July? Well, the first morning we were there, Jason’s job situation changed. Declaration of independence. So, though I’m not a big spender anyway, I’m not out purchasing expensive counseling sessions presently, either.

I really enjoyed our group sessions with the other parents. But I know that those meetings aren’t all about me, my sorrow, my son, my hell, or my hope. I’ve been extremely frustrated lately at ‘the system’. I can recall everything that transpired and DID NOT happen upon our arrival at the hospital with Noah. Noah is whole. He is safe. He’s happier than I’ll ever be until I’m in his position. But he never had to get that sick! We took him off the ventilator because we trust God but also because he was so very sick. Did I ever mention that he died right away? He was ready. Apparently, regardless of my hope in Heaven, my heart was not ready, regardless of my peace, my heart has a hole and it aches. He never had to get that sick. Did you know that from the day we walked into the hospital until the day after his lung collapsed, Noah was never treated?! #$%^&*#$%^&*#$%^&* THAT WAS 22 DAYS! Which is 22 more days than the 2 or 3 weeks of diarrhea he had at home. He had diarrhea and was weak. He was treated for his weak respirations. (Man, I can feel blood surging through my body right now because I am so angry when I think about the hospital situation and the room full of experts trying to catch a greased pig.) He was not treated for his diarrhea until AFTER his stool killed dozens of mice at the Center for Disease Control. Our hospital experience, save the nurturing care of the many of the staff, was a political nightmare!

And, after my AVON walk in NYC, I want to try, again, and I DON’T WANT TO TRY, at all! I am an oxymoron! I don’t feel a need to replace Noah, I’ve said that on numerous occasions, because he could never be replaced, obviously. But my heart is sad for Em. She’s got to be so sick of hanging out with two 30-somethings! And, the reason I don’t want to try is not because I am fearful that this could all happen again. I used to be in a place where I wanted to solve Noah first before I entertained the thought of more kids. I have more than solved it, at least in my heart and through much of my research, so it happening again, I can’t imagine it could…since it’s PREVENTABLE! #$%^&* (I’m just puking out loud here…sorry)

So, all that to say, admittedly, I know I am an escapist. I like to retreat from my life at times because, as I found out at the hospital for 5.5 months, life still goes on without me…Mexico was great for so many reasons that I will continue to share, but Mexico was great because I got to leave my daily life and focus outward instead of on the anger that rages in this machine…



23 Responses

  1. Adrienne,
    Please know you are NOT alone in your anger. I have followed your blog since early January before Noah went home. I have many times wondered why certain things were or were not done and been very sad and angry for you. I lost my daughter 16 long years ago. She DID NOT have to die, she was let die due to medical #$@^*&(. I still get angry. I still rage, and still wish I could see the doctor face to face that failed her. Your faith is amazing and so is your honesty. Thank-you. I hope it can offer you some comfort knowing you are not alone in this journey. I also wanted to tell you that this past weekend we went to San Diego beach which is my place to be with my daughter. I wrote her name in the sand like I always do then I added Noah and Stellan. I took beautiful picutres of the names and then jumped in the waves with my camera in my pocket. I am sure they were seen though. Praying for you still.

  2. I cannot imagine what you must be feeling.. Oh! The rage I would feel too!!!!
    I’m so very sorry Adrienne, I will be praying for you.

  3. Adrienne,
    I found your blog while visiting MckMama’s blog. I must say, when I first caught sight of your sidebar with sweet, beautiful Noah it took my breath away. Since then, I have looked back a bit and my oh my. You and your family amaze me. You amaze me. I really don’t know what to say, other than I have cried my eyes out. I have also felt uplifted and energized by your faith. I can’t imagine. Thank you for sharing your story. Noah’s story. It has touched my heart in a great big way. I hug my boys a little tighter (if that’s possible) with thoughts of you and Noah on my mind. I will pray for you and the hole in your mama heart. I know I’m a stranger but, if I could email or text you a hug, I would do it.

  4. It is only after reading this that I get what you meant on the phone earlier about having to distract yourself from life (not a direct quote but the main idea?) I am sure your newly painted and replastered walls look great 🙂 but
    I am sorry. I am sorry you had to loose Noah, I am sorry that there wasn’t more done for him, I am sorry that it hurts so badly.
    Please let me know if I can do anything for you.
    Ya know… Em and I are like best friends 🙂 we can always hang out if you need some time to cry or be angry, or whatev.
    Wow, long comment… lets talk tonight at the concert if you want.

  5. Adrienne,
    I followed your blog from just before Noah went to the Kingdom and for awhile after. I have marveled at your strength, faith and endurance. I prayed that God would forever comfort you and that if I were in a similar position, I would be able to let my child go. Our own lives and medical needs of our son took my eyes away from your blog for a time. But after we let our own son go, I came back to your blog because I was looking for an example. An example of how to go on after doing what I think is the hardest thing a mother would do. To allow your child to go to Heaven because in the end, it is in their best interest. It means they will have a quality of life far superior to what they would have on earth. I read through every post from the time I stopped reading to the present and was filled with hope and joy that if you could go on, I could too. I know as I walk this hard road, there is a time for joy, a time for sorrow and a time for anger. So as I read your entry today, I know that anger at the medical establishment far too well. I pray that God will bring you the peace that only He can bring. Peace that you did everything you knew how to do at that time. There was nothing else you could do while you were at his side. You were first and foremost his mother. You were not called to be his RN, or his MD. You were his mother and you loved him. You were there from beginning to end. Whatever thoughts are bringing you back to anger over something you cannot now change are Satan trying to get a foothold on you and bring you back into a place of sorrow and despair. I pray that those demons are bound in Jesus Name, I pray the let go of you and that God bring you joy and peace. You deserve love and joy and a crown of Glory. You were his mother. You loved him in sickness and in health. You might be seperated by his physical death, but your spirits are together forever. I pray this brings you peace. You are an inspiration always.

  6. Just wanted you to know that you are still in my prayers. After reading this, I will be sure to send a few more up to the big guy for you! Praying for peace for your heart!

  7. Anger is a part of the healing process and it is a completely normal and healthy emotion. Trying to stifle it will only make it worse when it resurfaces (and it always does resurface). And distraction, while it can give you breathing room when the anger is too much to handle, is only temporary. Finding a lasting way to help you cope…finding your own way to cope…that is key.

    Somebody once suggested buying ten-cent dishes at a garage sale and smashing them as a way to deal with it. Someone else suggested physical activity in sports. I chose gardening. Digging at the soil with sharp tools, ripping out offending weeds with my bare hands, and planting something new and beautiful. Maybe it’s just a matter of wearing out the body so the mind can’t think about it anymore…I’m not sure. I hope you are able to find your own way to deal with the anger.

  8. Adrienne

    I have been following your blog since you first started it. The last couple of months I lost it because my computer cashed. I have
    the computer and Noah’s blog again. Adrienne, I AM SO SO DEEPLY SORRY and so VERY angry that
    what Noah had WAS preventable and yet they could not help him. That just breaks my heart. SO HEARTBREAKING. Adrienne, I too know what it is like to lose a baby son……and my heart grieves deeply for you. Everything you feel is what most mothers WOULD FEEL…… deserve to have expected more from the hospital. You deserved to have expected them to HELP NOAH…..when they knew that his stool was KILLING lab mice. You deserve doctors to treat your baby boy’s life as IMPORTANT….not just for the sake of learning for the FUTURE but for helping NOAH have help while he was here on this earth in the hands of medical people. This
    just breaks my heart for you Adrienne. Noah was NOT their
    EXPERIEMENT!!!!! Noah was a gift from God…who deserved them to try and help HIM, Care for HIM,
    find answers for HIM…..not just use Noah’s life as an example for FUTURE medical solutions.
    Adrienne………you are so loved and cared about…and all the mommies here who have gone through something even half as much as what you endured with the doctors at the hospital UNDERSTAND WHY
    you feel the way you do. I know that I understand….because it is
    maddening. It is heartbreaking
    and it just is so wrong….when
    it doesn’t appear that they cared as much about what was happening to Noah as they should have, in their CHOOSEN PROFESSION. Adrienne, I hold you in prayer, my sister in Christ….and I love you and I care about you. The journey is heartbreaking…….but you have sisters walking that path WITH YOU….you are not ever alone. Please know that Adrienne.
    love & hugs & blessings~
    Lynda Bishop

  9. thank you for sharing your heart.

    you will never know the impact you have had on me. i lost my boys 5 months ago and its the hardest thing i have ever faced.

    know my heart hurts for you. you are a beautiful woman and i thank you for your honestly…its so great to know i am not alone.


    Oh Adrienne, I wish I could give you a big hug right now. I feel so hopeless but I want you to know that Sam and I are praying for you.

    In the morning I will put in a special prayer request for you at our church so at 8pm (today) your time know that down here in Australia there will be around 200 people praying with their whole hearts for you, Jase and Em.

    I pray that your heart is not overtaken by this anger that is consuming your body.

    There is a little care package on its way to your house for you, along with some pretties from Scarlett for Emily. I only wish it could reach you sooner.

    God Bless your beautiful heart 🙂

    Much Love Carly, Sam and the girls 🙂 xoxxoxoxoxoxoxoxoxoxoxox

  11. You have been faithfully in my prayers and will continue to be. I can not fathom your feelings of anger and sadness at losing your son. As a mom, my heart wrenches at the the thought. I still think of Noah and how indescribably precious he was. He will never be forgotten.

  12. Your post touched me hard and I’ve been praying so hard for you. I cannot imagine what you go through everyday. May God carry you through this. Melissa

  13. I just want to echo many of the previous sentiments and say thank you for being so genuine and honest. I have read your blog since Noah was sick, and I often marvel at your faith and your inspiring thoughts. I have dealt with tragic loss in my life, and I have been so touched by so many of your posts. But I so appreciate this post; I often think you are such the model mother, Christian, and person to have such understanding for Noah’s passing. It is good to be reminded that you are also human. You are in my thoughts, and I thank you for being so truthful even when it hurts. God bless…

  14. Adrienne,
    I’ve been following this blog for a while now. Each time I come to this site I have to prepare myself to leave with tears. Your family’s story has touched my heart. I’m not sure if you’ve heard the song “Held” before. Everytime I hear it, I think of you. Here is a link for the song and the words are included. I hope it will bring you some sort of comfort.

    ~Andrea Garcia

  15. We all have fears, rage, sadness and feelings of loss at times in our lives. It’s when those feeling start interrupting our daily lives and relationships with others that we need to seek help from someone else be it a chaplain, counselor, etc. Those people are not there to help us forget about our losses but to help us better deal with our feelings about those losses. Losing a child is so horrible and if at this time you or your husband feel like getting some outside help then maybe try it out and see if it helps and can give you some coping skills. This is just my opinion, of course. I lost a child when I was 15 weeks pregnant and remember how awful that was but cannot possibly comprehend the pain you feel from having lost little Noah after all those months.

    I love reading your blog and your openness and honesty. Hang in there…there will come a day when you will feel more at peace.


  16. Adrienne,

    I am a first-time commenter here, but have followed your story for over a year now. I am checking daily for updates on you and your precious family. And my curiousity has finally gotten the best of me…you mentioned that Noah’s health problems were preventable at the end of this post. Is this true?!?! I remember you posted that you had sent Noah’s labs & files to a certain doctor, but I don’t remember you ever mentioning a result or an answer. Please forgive me if I have overseen this. Maybe you are holding back for your book…which I will DEFINITELY be purchasing 🙂

    I wish you lots of courage, patience & love in your continued journey with your family.


  17. I feel so sad reading about Noah, and the medical blunders. Being an RN myself, I know well the frustrations of those nurses who came to be attached to Noah and his family. It’s one of the reasons I stopped working as a nurse. Doctors are making too many “corporate beneficial decisions” and precious lives like Noah’s are what end up paying for those decisions. Doesn’t necessarily mean the doctors are heartless, but it still sucks.

    You are so brave Adrienne. I wish I had half of your heart and spine … and I’d settle for 1/8 of your faith, even though I am pretty strong in my knowledge that He is out there …

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