Tuesday, May 13, 2014

He's not doing well. It's now been 20 days that we've been watching him slip away from us. Each morning I wake up and think "I can't do this, I can't make it through another day of this" and each night I'm surprised that somehow I did. I don't know how I did.

His breathing has been very slow and very shallow and has been for days and days and days. He's skeletal, it breaks my heart to see all of his bones, his body stopped digesting food 2 weeks ago. His face, his eyes and cheeks are sunken and bluish. I cry at what MLD has done to our son. I scream at the unfairness of all of this. Our baby boy, I am so so sorry. I feel like I'm falling into a dark abyss, this is every parents' worst nightmare, and I'm living it. Most days I can't believe this is my life, staring at your own child wondering which will be his last breath. It's torture. Our chubby cheeked sweet boy that loved giving hugs and pointing at cars. We don't know how he's still hanging on. We continue to hold and cuddle and kiss him. He's holding on and we're not sure why.

25 comments:

  1. Lots of prayers for all of you. I can not even imagine the pain you are going through. We think of all of you every day.

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  2. I am sorry you are all going through such pain. Poor little Oliver. He is so sweet and adorable. Somehow he is hanging on to spend every last moment he can with you. I, too, think of your family everyday. I cry when I read your stories and look at his pictures. It is so unfair....a parents worst nightmare. Sweet little innocent children should not have to go through this...nor should their mothers or fathers. Lots of prayers and hugs from my family to yours.

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  3. My sister that lives in Newtown lost her 2 1/2 year old son Christopher, to MLD. As I follow your journey, I can see that you and your husband are living the same nightmare. I admire your strength and devotion to Oliver. He is a beautiful and amazing little boy who has clearly brought so much love and joy to this world. I will continue to keep Oliver in my prayers, and pray for strength for you and your husband. God Bless you,
    Laurie Caserta/Stratford, CT

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  4. Oliver is an angel, with his soul unfolding like the beautiful wings of a butterfly. You are the most loving and caring people and everyone's heart is heavy that you are watching this painful transformation of the son you love with all your being. Just know you are in the thoughts of so many and may that be you strength to continue your journey of love.

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  5. I am searching for words to comfort you but I know there are none. I wish you both strength and love. I have Oliver in my thoughts and heart. <3


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  6. Aww Kate and Chris,I wish I had the right words to say or the ability to make this all better for you all. I'm so sorry this is all happening.
    Please give Oliver a kiss for me.
    Suzanne.

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  7. Cherish each moment. I pray for you and your family each day that you find the strength to continue this hard journey. We all grew to love you all and Ollie. We thank you for opening your lives and welcoming us to be part of this journey. I will continue to pray for all of you..

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  8. So sad..you are all in my prayers.Such a brave little man. He is a SUPER HERO to all!!

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  9. Roberta CarroccioMay 14, 2014 at 8:56 AM

    I am so sorry for all of you...we must remember just like our Andrew was and your Oliver is...they have been sent here to us and others for a reason. They have touched so many and have taught us all about love-and how everyone when given half a chance has a heart that is open, loving and caring for our brothers and sisters. My heartfelt thoughts are with all of you.

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  10. Danielle Grzan-Long Island, New YorkMay 14, 2014 at 9:10 AM

    As I parent, I can't even imagine doing what you are doing. You are just so brave. It's unnatural for a parent to lose a child and its horrendously unfair. Please don't lose your faith. I know its hard to believe but the Almighty has a plan that we simply cannot know or understand. When it is time, Oliver will be welcomed by overwhelming warmth and love, much like you have given him since he was born. You have to believe that. He will be running, playing and laughing until the day when you all are reunited again. You have been Oliver's rock, his strength and his joy. There is nothing that you have not done for that boy and he knows that. That is why he doesn't want to leave you. That is why he is trying so hard. Peace and love to you all during this unimaginable time.

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  11. As I pondered your question this morning, it came over me that Oliver wants you to know how much he loves you. You have given to him such love and beauty with grace. Oliver wants you to know he loves you. Praying for your beautiful family.

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  12. It just plain sucks. Life is not fair. Love can be painful. I don't know what your religious beliefs are, but I can hope that you will see him again and that he will always be with you. There are so many questions that we cannot answer in this life. I hope your family can find peace. Oliver has given you the gift of love and the gift of strength that you can teach and help others. This can be Oliver's legacy.

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  13. As a parent and a Grandparent, I can't even begin to know how you feel. I am glad you share his story with everyone, and that all the prayers have carried you through. I hope it helps you in some way. I keep saying it over and over, your son has been an inspiration to so many people. In fact, your whole family have been an inspiration to so many people. Oliver is one special boy who is so very loved. I hope God gives you the strength to keep on keeping on.

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  14. Tell Oliver it is ok to let go. And you will see him again soon. Sometimes they hang on because they know we are not ready to let them go. Tell him it's ok to go.

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  15. It would seem that Oliver still has something to do. I cannot imagine what that is as he has taught all of us how to fight a war that is impossible to win. He showed the world what love can do. Perhaps he needs to know that it is okay and that his job here on earth is done or perhaps the angels are still planning his glorious arrival, with a welcome worthy of a superhero.

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  16. I am so sorry for all of your pain. I am at a loss for words. Your sweet Oliver has taught us so much.

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  17. Katie and Chris- you are the most devoted parents ever, and Ollie feels your love and comfort. I wish I could take away some of your pain to ease your burden and Oliver's.

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  18. OMG! Shared tears, thoughts, hugs and prayers to you all. I, as many have said, cannot begin to imagine even a little part of what you are all going through ! Don't know how you have the strength to be sharing this journey through Facebook and blog ! I have no other words than what everyone else has already said ! Just know the whole community is supporting you as best we can.

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  19. My thoughts and prayers are with your family at this time.

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  20. Many prayers for peace and comfort for you all, and especially Ollie. You all have strength I could never imagine and I know that strength will continue to hold you up through the difficult times ahead.

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  21. Many many prayers to u and ur family!!! I'm sure he's hanging on for you guys he's so strong, I hope he can find peace and you as well!!!

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  22. I have no answers or platitudes to offer only admiration for your whole family. I hope that at some point in the future the joys and courage of Oliver's far too short life will be a source of comfort and sympathy for all you are going through. I think of you every day and send you love and strength as you continue this journey that no parent should ever walk.

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  23. Even children as young as Oliver can sense when they have "unfinished business" left here on Earth...are there people who have been part of his journey that he is waiting to see, or hear, or feel? Children are so intuitive, precious boy must love you all so much to be hanging on so hard. Bless him, and your entire family.

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  24. 'Just recently heard of all you have been through, all you are still going through. I graduated high school with Chris- so hard to imagine the road you're traveling. May you feel the love of many who are touched by your journey. A heart full of prayers for all of you. -Betsy (Ryan) Hany

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  25. Chris and Katie,
    We are so sorry to hear of dear Ollie earning his angel wings. It is a parents' worse nightmare! You are not alone. Your MLD family is here, crying alongside you. We will be here to carry you through the days ahead. We share in your pain and heartbreak. Hold each other close. We love you!
    We will continue to fight for a treatment and cure. We want the suffering of children like Ollie and the heartbreak of families like yours to stop. Butterfly hugs, Teryn and Dean MLDfoundation.org

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