Comfort and Tea

Last night, CMT reared its cruel and hideous head again.

It came out of nowhere, body aches, fever, then aspiration. The night was fitful, and we struggled to keep her comfortable. We are still trying, but the antibiotics and pain medicines haven’t made the difference, not yet.

It wasn’t supposed to be this way. She had a good week, and it was a perfect, glorious 70 degree Sunday. We colored some hair (on her Barbie head) and did some projects (flower crafts). We took a stroll in our neighborhood, and she picked me this flower.

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She always does this – every single time she goes outside (and it’s not a lot), she insists on picking a flower for mommy. She tells me to put it in water and in my bedroom and “think of me.” As if I could think of anything else.

And today was supposed to be different. For weeks, she has been planning a tea party with her kindergarten class. It’s the last week of school, and Julianna hasn’t seen them in person since the fall. She had her hairstyle, dress and teacup picked out. It was supposed to be today.

Julianna reminded us of this last night. Even as she told me that it was hard to breathe, she talked about her hair and her dress, and how she had to go to the tea party and use her cup.

And we were determined to do it. To hell with safety and — whatever we’re trying to preserve. If she wants a tea party, she gets a tea party. We’d make it happen. Only we couldn’t. She took another turn in the morning – more fever, perhaps another aspiration – and even she agreed that she shouldn’t go to the tea party today.

And here we are, at home. She’s asleep, but not comfortable. We wait, we pray, we watch and we plead. Comfort, please, for our Julianna.

 

PS — Julianna was in rare form last night. Even though she was struggling, she was funny, decisive and spirited. She schooled me on the correct way to hold her cough assist mask and declared that I was still “in training” – but she forgave me. When she wanted ice, she said “Ice, Ice Bebe.” (Bebe is the name of her former favorite – and most scary – doll).

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J and Bebe – summer 2015

28 thoughts on “Comfort and Tea

  1. My heart is breaking as I read this. J, you and your precious family are in our thoughts and prayers now and always.
    Much love,
    Char, Tracey, Dylan and Rayna

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  2. Oh Michelle,

    So sorry to hear this; praying for you and your beautiful family. Like you, I am a Christian. But I don’t understand why this beautiful girl and you have to go through so much. Some day we’ll know.

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  3. Hi Michelle,
    I sincerely appreciate your updates. You described the roller coaster ride. Myself and all your other
    followers will increase our thoughts and prayers for Princess J and hope that she and your entire
    family will be happy, healthy and as comfortable as possible under the circumstances. Hopefully
    that tea party can be rescheduled in the near future and you can all spend an enjoyable summer
    together at home.
    God Bless You All,
    Valentino
    Monday, June 13, 2016
    3:10pm

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  4. Praying for comfort and a better day for our princess👸hoping Julianna will be able to go to that Tea Party soon. Hugs to all the family who are trying to make her comfortable. Love the flower she picked for Mommy🌸

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  5. You are so amazing Michelle. If I could steal that CMT from your baby girl, I would do it in a heartbeat. You all inspire me beyond words. And you are very loved.
    Connie

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  6. Please know you are thought about by so many people you’ve never met, but continue to inspire. With much love and positive wishes, from Queensland, Australia xx ps: love the flower you picked for Mum.

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  7. I’m in total agreement with you and your families prayer, Michelle. I’ll wait to hear for your victorious report that the problems have ALL subsided. I pray your spiritual strength and endurance through this occurrence; and that you’ll be given supernatural wisdom in Julianna’s care on what to do and when to do it. Most of all, I pray for Julianna’s immediate physical comfort and for her mental “Peace of mind and spirit”.

    In Jesus Name,
    Lorna Redd/California, USA

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  8. We are praying for you Julianna. I am very sad to hear your not feeling well and hope to God that you will be okay soon. God bless you Julianna and your family, from Pedro, Sujin, and Jessica.

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  9. God bless you always, Julianna. I truly hope you are soon well enough to attend all the tea parties you want. I wish you all not only comfort, but many many beautiful moments together. Keep shining, princess.

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  10. Prayers and love for Julianna and her family all the way from New Zealand!
    Everything I read of Julianna continues to amaze and delight me. How is it possible that Julianna can continue to be so happy and joyful despite everything going on in her tiny body? I am sure everyone that is blessed to know Julianna, or like me can only read about her, is amazed at her ability to find happiness in everything in her life. I certainly worry when Julianna is unwell, but just a glimpse of her sweetness never fails to put a smile on my face. I know the love of The Lord and Julianna’s family is what makes the difference. I also know that Julianna is an absolute treasure and I am grateful to you for sharing such a special gift with the world.
    I have a precious heart child, Rebekah, who has numerous health issues with periods of fragile health. She too is a Gift from God and I am very thankful I was chosen to be her Mama. Please give Julianna a gentle kiss and hug from Rebekah. XOXOXOXOXOXOXOXOXOXO.

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  11. I am so so sorry for your big loss! My prayers are with you all! Sweet little girl who fought every second of her life is now free! I have been following you and her story! I will never forget her and I will be sure to keep her memory alive and all of my efforts to raise awareness for Charcot Marie Tooth disorder. God bless her sweet soul. #Love4Julianna
    We will never forget her!

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  12. Simply devastated to hear that little Julianna is now a real angel. So terribly sorry for the loss of your beautiful, caring, strong, determined, happy, kind and funny little girl. All I can do is send your family love, hugs and prayers from Hong Kong. Julianna touched my heart…I am crying. Love to you all, stay strong and remember the happy and funny times. Julianna did more in her little life than a lot of other people ever do, she is a true angel now and is at peace and out of pain. Bless you Julianna, the world is a much sadder place today 😦 XxX

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  13. Julianna was truly blessed as you all were to be with you as a family. What wisdom and true love from all involved. I know she is smiling at the gift you gave her unselfishly and in know you will all be with her in the future.

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  14. I just wanted to stop by to applaud you for making such a difficult decision and honoring her wishes. My family faced the same when my older sister’s cancer progressed and was deemed terminal at age 15. As difficult as it was to let her go, my parents knew it would be selfish to put her through more painful treatment simply because they were not ready (when she was) to face her mortality. We enjoyed 4 beautiful months with her, and it freed us to really enjoy and make the most of every minute we had left with her rather than waiting for the next “miracle” treatment to work. She showed so much grace in her last months, and I cherish those memories. End of life care is difficult- I am by no means saying this is the right choice for all families- and I know that you made the right choice, however difficult, for your family. Love and prayers to you all.

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