Quiet morning hours

Kai’s breathing has been labored overnight. Every time I wake up it sounds like more of a struggle. His nurse just came in and told me his heart rate is still good but the last time he checked his respiratory rate was 16 breaths in a minute. He is breathing more from his belly. You can see, feel and hear the change. He is struggling.
He was awake with me a little while ago and we just snuggled as we always do in these quiet morning hours together. I held him and kissed his face.
I’m started to get scared that one day I won’t be able to do that. Iv known this fact for a while but its only now starting to scare me. One day I won’t feel his weight in my arms, his skin on my lips, his warm hand in mine. I won’t be able to wiggle his little toes and play with his hair.
He is so presciouse and beautiful and soft. You look at him and he just looks perfect. He’s always looked just absolutely perfect.
How can all of this terror be going on inside this perfect little body?? He is such a good boy. All he has ever wanted in this world is to be held and loved. That’s always been enough for him, just to be held and loved…

In all the time we’v spent in the hospital we’v never been here for a holiday. It’s quiet around here. Yesterday was quiet. I didn’t expect it to feel any different from any other day, but it does. Anyone who had any chance of going home has gone. Even kids who will be back by Friday have left to be with their families today.

Our family will be here in a few hours. The hospital has a full thanksgiving dinner in the cafeteria at noon. We will eat there, with the other families of the hospital whose children can’t leave. I will try to see all I have to be thankful for, which I do believe is a lot.
Most importantly I am thankful to have this time with Kai. To wake up with him in my arms every morning. To feel the love from so many people surrounding us, holding us, lifting us up. I am so thankful for all of the tender love and care we receive from all of the amazing doctors, nurses and staff here. I am thankful for all of the things that are happening at home to help us that I don’t even know about still. I am thankful for all I have learned in these two year Kai has been in my life, and as much as my heart will never be the same I am thankful for the person I have become because of all of this. I am thankful our family is willing to leave the comforts of their homes and spend the holiday in a hospital so we will not be alone.
But right now laying here next to Kai listening to him struggle to breath, I’m not sure I can even get out of bed.
I’m not sure I can face this day, share this day or even acknowledge there is anything else in the world besides him and I today.


55 thoughts on “Quiet morning hours

  1. You and your sweet, amazing Kai have been in my heart and thoughts nonstop and today is no different. I hope you and Kai have a Thanksgiving day filled with snuggles, kisses and comfort. Kai is an amazing boy and words can not express how much I admire your many strengths as a mother.

  2. He IS such a good boy, and you are such a good momma. Feel free to cut your meal short today, but don’t feel bad if you do spend some time down in the cafeteria.. you do what you need to do!

  3. My sweet Kai. Life is not fair. I am praying for you and your sweet mommy that loves you so much. May you feel the love that surrounds you today and every day. Eat your turkey in bed with Kai and gain strength from the people that love you. We are praying for you and will keep you in our thoughts. You are doing an amazing job mama and Kai is so lucky to have you at his side. Kai has touched so many peoples heart his legacy spreads far. Praying for your peace.

  4. Nothing is expected of you. If your day means skipping out on the meal, go for it. Like Tracy said, have it in bed. Whatever makes you comfortable is what you should do. You are one heck of Momma! Prayers continue!

  5. Try to eat your dinner today to gain strength for yourself so you can be there for Kai. Every decision you make will be the right one, don’t ever forget your an amazing Mom, and Kai is and amazing little guy. You all will be in my thoughts and prayers today. xoxoxxo

  6. There is no need for you to do anything today other than hold your sweet, precious, beautiful little Kai. Continue savoring every moment. Sending so many prayers.

  7. Sweetheart you do not need to acknowledge there is anything else happening, you do not need to get out of bed even if you don’t want. You have every right to just cherish every second of that snuggle time. But Happy Thanksgiving to you, and your family. I can’t even express how much perspective you have poor on my life these past few Weeks. HUGS!

  8. We are constantly thinking of you and your family Kerri. Our hearts break for all of you. I only wish that all mom’s could be like you. You and Kai are just amazing, as we’ve said before. I’m/we’re thankful to have met you both. Your family is constantly in our thoughts and prayers.

  9. Kai and you are in my thoughts, heart and prayers. I am thankful that I met both of you. Thank you for sharing yourself and Kai with me. Hug Kai close. Sending love and hugs. MP

  10. Kerri, all you need to do is snuggle your boy close and feel the love. We are all holding you and your sweet Kai in our hearts today.

  11. always follow your heart…..stay in bed with him, it’s okay. Hold him close, feel his warmth and breath on your face, it’s okay. Thank you for sharing Kai and your heart with all of us. We are thankful to know you.
    With love & hugs,

  12. I can understand how you feeling everything and been in your situation it’s so hard . Even that we are in diffrent hospitals right now it’s feels we are next to each other.Hang in there.

  13. As Thanksgiving is here… I have a lot to be thankful for… I am thankful for getting up this morning and reading this post knowing Kerri and Kai and the rest of the family have more time to hold eachother tightly fill there day with hugs, kisses and many snuggles. I am thankful to have been shared Kais story. It has changed me as a person and changed my life in many ways. I am thankful and honored to be a part of Kais village, you all are AMAZING people! As I go about my day I want you to know I will be thinking of you, Kai and your family, wishing for much love and peace to get through this day… Hang on tightly Hugs…

  14. Thinking of you and Kai today. I respect and admire your ability to stay present for Kai and yourself. I think many moms in your shoes might get busy as a distraction, or on the go trying to fix things, (that sadly cannot be fixed). I read your posts and just feel your warmth and spirit wash over Kai. You are there, holding him, loving him, eating yourself just be there with him. I think that takes unbelievabl strength and energy, to live in each moment, not quite sure what happens next, but holding on to this moment. Thank you for your wisdom and heart. I continue to think of you and Kai daily. I hope that Today is a day filled with peace and snuggles. Hugs

  15. My thoughts and prayers are with you today- as they have been every second since I met you and Kai through your blog. I will hold you both close to my heart.

  16. Kerri, you and Kai are in my prayers and thoughts. I do not know you personally but you both have a piece of my heart. I wake every morning with you both on my mind.
    Do whatever you feel is right for you and Kai, if you want to just lay with him all day then do it, there are no rules!
    God Bless you both

  17. My thoughts are with you and your family today and always. Kai is so lucky to have a wonderful mommy to look out for him. Enjoy every little snuggle and kiss with your sweet boy.

  18. May god continue to look over Kai and his family. At times life just doesn’t seem fair. He has the best mom and family. Constantly by his side cherishing every moment they can with this precious little boy. Everyone lives you Kai.

  19. I am thankful every day that I got to know you and Kai. I think of you today and you have given me so much strength to be successful every day. So additionally to being thankful for what I have I want to say: Thank you, Kerri. For sharing your adventure and giving me and my family so much!

  20. Sending all our love to you. Follow your instincts & do what feels right for you today. I’m thankful to have met Kai & wish Maddox could have spent more time with him.

  21. Cherish today & enjoy spending one more Thanksgiving with Kai & your family. Its another day to be thankful to have him in your life . Prayers are with you ❤

  22. I subscribed to get your updates in my email and I am constantly checking, day and night. Please know that you are always, always in my thoughts. I am snuggling one of my girls right now while she sleeps instead of laying her down in her crib because your story has made me so keenly aware of how short this time can be. ❤

  23. You don’t have to get up. Just stay right where you are with Kai. He needs you the most right now and you need him the most. I want to wrap my arms around you both and hold you to gave you all my strength and love. You will be in my thoughts and prayers all day. Love to you both!

  24. Wishing you and Kai peace and love. You are truly an amazing mother, an example to all, and I wish you peace and comfort.

  25. you are right where you are now as you have been from day one loving him in such a beautifull way that we cannot help but marvel at the wonder of “you” We know you have loved Kai beyond words and we have learned so much from watching you our hearts ache for all that you know you may face and we hope we can surround you with our love and give you strength you will need xoxo Joanne

  26. Just be. Do whatever you need to. It’s ok and there is nothing to feel guilty about. I am most thankful this year for the gift you have given me. I am a better mother because of you/ I am learning to enjoy the little moments with my children more often and to let a lot of things go. That gift will be with me forever. And Kai will always be with you. Always. So for now hold him and love him. You were the perfect person to be chosen to be his mother, nobody else would have been right for him.

  27. Kerri, I have been following Kai’s journey, since you started this blog. I know Mark from work. I read you posting today through tears, my heart aches for you and Mark. With all you are faced with, to find so much to be thankful for, is an inspiration. I will continue to pray for you, Mark, and your precious, perfect baby boy, Kai.

  28. I think about you guys all the time. You and Kai are both amazing. I am thankful that you have taught me to truly cherish every second with my boys. Every single time I feel impatient, I take a deep breath and think of you … think of being thankful for every moment that I have with them … love them as much as I can. I thank you for that lesson. Every prayer I have is with you guys.

  29. You and Kai were the first thoughts of my thanksgiving morning; although we have never met. Your words on being thankful made tears stream down my face. If only the world could be as thankful. Your strength and words are inspiring. Please know how much strangers are praying for you, kai, and your family.

  30. I’ve stumbled across your site all the way from Denmark and am checking for your updates daily. What a beautiful little boy you have, he sure is adorable. But what a beautiful mother and person you are. Kai is so fortunate to have you as his angel mother, any child would be lucky to have a mother who loves one so dearly, bit far from all children are. I think you’re an amazing person, sharing Kai and everything that is happening with is all. If you dont realise this now, you will one day

  31. For today, I think it’s okay if there is nothing besides you and Kai. The world will be there when you are ready for it. Sending you love from California.

  32. Thankful your family will be coming to you so you don’t have to be alone today. Even if you stay in bed with Kai all day. Sending you love and hugs Kerri.


  34. We’ve never met but your story brings tears to my eyes. My third baby was stillborn because of a heart problem. I never got to see her take a breath or smell her hair or play with her toes. I ached to have my baby to hold and it was the most wretched horrible feeling to leave the hospital empty armed. EMPTY. I felt like an alien moving through this life without my baby, like I couldn’t relate to anyone. Their lives were “normal”, they hadn’t lost a baby. Someone complaining about their bad day to me was so laughable. It’s so huge and unfair and it just sucks to lose a child. Did I learn from it? Yes. Would I wish it on my worst enemies? Never. Although our stories are different I do know what it’s like to lose a baby, to wonder what they’d be doing now, what’d they’d look like now, what our family would be like now. Time really does help but it doesn’t go by fast enough. I feel for you and the road you have ahead of you. I will pray for a miracle for your family and for strength to handle whatever comes your way. Take care and hang in there.

  35. I am so very sorry that Kai, you and your family has to go through this…..I’m not much of a prayer but I pray to god that a miracle happens and Kai makes it. He is absolutely beautiful….it saddens me to think about what you’re going through….I’m so so sorry.

  36. Thinking of you today, Kerri, and hoping you spend every moment doing exactly what you want to be doing. Thankful today that you are in my life, and that your strength and love has given us all the gift of Kai. Hugs and lots of love to you, my dear friend.

  37. Dear Kerri,
    I hope you and Kai had a peaceful Thanksgiving. I thought of you and your family so many times today…as I do everyday since I heard of your story. I start my days and end my days wondering and praying that you are doing okay, that Kai is still with you, that things are peaceful for you, and wishing for the biggest miracle ever. Today as I hustled around preparing food, I made sure to sit and snuggle my girls to watch the parade and not worry too much about getting stuff done. It may seem corny, but as the Sesame Street float went by and the characters sang “What I Am” by Will i am…..I thought of you and Kai…two of the most special and strongest people I have never even had the chance to meet. My daughter, Maya, asks daily go meet Kai and always includes him in her prayers. Thanks as always for sharing your story.

  38. Praying you and you beautiful sweet good boy enjoy a peaceful night in each others arms. He doesn’t deserve this. I am praying tonight with my 5 year old for your gorgeous son and a painfree night cuddled in his mama’s arms. God Bless You

  39. I thought of you and kai today – the risks that we take when starting a family are scary but the love we feel as moms is worth all the risks we take..I will always have your little boy in my heart…xxoo

  40. Dear Kerri
    My heart aches for you, reading about your lovely boy once more, seeing the desperation in your words. Your strength, your wisdom and your love have taught me so much, despite never having met you. How well I understand that you don’t know how to face the day, and don’t know how to get out of bed. And I so understand the terror you feel at knowing that one day you will not be able anymore to feel your baby boy, listen to him, touch him, smell him. It is heart-wrenching to read about your and your little boy’s experience, and it is for me impossible not to ask “why?”. He looks so perfect on the photo, one wants to hug him gently, caress this little perfect angle face and make sure, nothing bad ever comes to him. And then there is this sickness that makes him suffer so much and you with him. My little daughter, just one year older than Kai, has been very sick these last days, but only with a stomach flu. Even then, I suffer to see her in pain and unhappy. And I have to think of you and Kai every moment and I admire how you cope. I thank you with all my heart to having opened a window to so many people and share a part of your life. You and Kai are in my heart and will remain there. As a stranger, living on the other side of the Atlantic, I send you my love and wish for a miracle. Hold your boy close, cherish every moment, he has the best mum he could get.

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