Eleven Months

For the past eleven months, I’ve marked time by remembering the past. What were we doing last Christmas and Easter and June and spring…when we were still a family of four?

It’s taken on a more intense timbre of late, because we’re coming to the end, the final weeks of Julianna’s life.

One year ago, I wrote:

Parenting a child with a terminal illness means that your heart is fractured a thousand different ways. One day it will be broken, but until then, you fight to give your child the happiest, most comfortable, most beautiful life you can.

 

And fight, we did. Last spring, Julianna lost her voice, but she gained a microphone….which allowed her to talk even more. She got another wheelchair and it widened her world. She told me that love is a superpower.

And yet, it was the beginning of the end. Julianna’s feeding tube finally failed (it lasted eighteen months – some sort of record, I’m sure) and we were thrown on the horrible roller coaster that only parents of medically fragile children know. We squeaked through, but it took a toll on a little body that had barely any reserve.

Julianna had more strength than anyone I’ve known – but none of it was physical. I see it now: her body was done, and the end was near.

I wonder if it will be like this every spring, this journey back to the last days of my daughter’s life. Will I relive her death for decades to come? Will it gut me always? What is the long term prognosis for a broken heart?

Impossible questions, and there are no satisfactory answers on this side. And when I get to the other one, maybe they won’t be needed because the pain will be obliterated – in the blink of an eye.

Eleven months ago today, Julianna rested in my arms one final time. The pain was indescribable, but I am grateful that she ended her life as she began it: in my arms.

I was able to give her safe passage. Sometimes it’s the only thing a mother can give.

 

IMG_4652

In My Father’s Eyes is a ministry that comforts those who mourn. This painting is beyond beautiful.

20 thoughts on “Eleven Months

  1. I think you you, a Mother suffering the loss of your Angel Julianna. You are not alone. I am privileged to share this through your posts.
    Thank you,

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  2. I think you will relive the unspeakable loss, but also continue to relive her richly imaginative life.

    Through your sharing, many of us have learned of her life, and that Love IS a superpower.I am sorry for your pain, always, but especially today.

    💜💜💜

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  3. It is so very nice to read words from you Michelle, it feels like reading words from a dear friend! My god…what an intense Mothers day for you. I truly hope that you feel love in your beautiful heart today. I will post later, but for today here is a Korean poem for you-

    Let’s live, let’s live,
    Let’s live on the green mountain!
    With wild grapes and thyme,
    Let’s live on the green mountain!
    Yalli yalli yallasyông yallari yalla

    Cry, cry, birds,
    Cry after you wake.
    I’ve more sorrow than you
    And cry afer I wake.
    Yalli yalli yallasyông yallari yalla

    From- http://koreanpoetry.homestead.com/

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  4. I loved the room!!! But more so, its resident princess & the people she would let inside, and the adventures she would create with & for her toys & the people around her 🙂
    This morning at church, even as we cut Mother’s Day cake, the pastor said a prayer for those for whom this day is hard – and reading this post now inclines me to remember you in it.

    You’ll always be a mother of two (as someone from church put it before – “two babies, one on earth and another in heaven …”), & Julianna promises to run all the way to come get you when you get to Heaven yourself – blessed Mother’s Day, & keep on keeping on for Alex! xx

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  5. Thinking of Julianna today and rereading your posts. Julianna was funny and wise beyond years. Thank you for sharing her rich life with us. Peace be with you.

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  6. As always sadness and heartbreak enters my heart as I’m reading your post. Tears start streaming down as I picture Julianna’s face. I never met her, but for some reason I feel very close to her. I cannot thank you enough for sharing Julianna to the world and opening our eyes to CMT. I look forward to your writings and pictures of her beautiful face.
    My deepest prayers go out to you and your family. 🙏💕💜💞

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  7. Just simply a hug.. no words can take away your pain. No words can understand it either. Know this we all know how special Julianna is and she lives in you and will always be in our thoughts and hearts.

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  8. You ask what the long term prognosis is for a broken heart? I am five years out from the death of my child (24 y.o. and very different circumstances, but still my “child”). My experience is that the Lord can and will heal your heart, but the scars remain. There is a Japanese art technique called Kintsugi by which a piece of pottery is repaired with powdered gold. They say that the broken and repaired piece is more beautiful than before it was damaged and it is, in some ways, stronger. I think the Lord does Kinsugi on our hearts. http://www.amusingplanet.com/2014/05/kintsugi-japanese-art-of-fixing-broken.html
    I continue to pray for you as you walk your grief journey! ❤

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  9. What a stunning portrait of Julianna! I’m keeping her and your family in my thoughts and prayers. Love is indeed a superpower ❤

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  10. Thank you for continuing to share about your Julianna and your journey through her loss. I’m a bereaved mom myself and what you said about giving her safe passage really resonated with me. I felt so helpless when my daughter was dying. There was little comfort we could offer her during her last days (even with hospice). But your conceptualization is spot on, that as unbearable as it is to let them go, it is a gift. I miss my daughter every day, but I gladly suffer her loss knowing she is free from the disease that tormented her and has yet no cure or treatment. Thank you for bravely sharing your journey with us.

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    • I’m very sorry for your loss and wish that you could not relate to what I wrote. But you are right – this is our way of fighting for our children until the very end. Thanks for writing 🙂

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  11. Dear Michelle, you look so incredibly young (seriously really youthful), and beautiful in your picture with the Black and Gold skirt, and holding Julianna’s picture. Wow, what a picture to behold, it captures the “true heart” of Julianna. The Portrait is an exquisite work of Art.

    **You pour out your heart to us, on things so deeply personal! But I know, your words lately, can’t adequately express the horror of the grief you are experiencing! So, I’m praying to say SOMETHING, that might get through to you.**

    Somehow, I got so busy this week before I knew it; I was at 5/16/17. I remembered that you post a new blog on the 14th of every month, so I rushed to read it today. Because I really need to know how you’re doing each month. You guys are so important in my life. My heart is crushed when I read your blogs and what you are going through. BUT IT IS SO UNDERSTANDABLE your grief and sorrow! In my heart when I want to get some relief from thinking about you in pain, (I know this sounds silly), I picture your future, and Alex is a little older, and on Mother’s Day. I can see him (my little hero) bringing you two Mother’s Day gifts, “One from him and one gift he personally bought for Julianna!”. Then fast forward it, and Alex is 25, and Married, and he names his daughter, Julianna! Please don’t mention that to him, just ponder it in your heart, then one day if any of that “comes to past” just remember this post. It truly does my heart good to dream about this……and know/BELIEVE you have many more, “incredibly happy moments” in your future!
    Julianna will never be forgotten, and she will always be honored today, and for the rest of our lives!

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  12. Michelle, you ask if you will always relive the horric painful last weeks, days and minutes. My mother told me that after my sister passed away so unexpectedly, for the entire first year all she could think of was finding her on the floor. But with time she has been able to move past that day and see Sharon as she was, laugh at fun moments she had with her, and cherish the good times she was able to have with her.
    It is a shame that our brains retain our most painful experiences so clearly that they overshadow our happy times. Maybe God made us that way to remind us that we are merely human and desperately need His help, His love, and His word every single moment of every day. My prayer is that God will help you overcome your pain and and sadness with time, and fill you with wonderful memories of Julianna’s life, and the joy and Wisdom she gave to you and so many others that she touched. Love xoxo

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  13. Thanks so much for continuing to update your posts. It never gets easier. I have been told it does, but I strongly disagree, as time goes by, life changes, you want to share those changes with your loved one, but can not. On days that I want to share stuff happening in my life with my gpa, (the man I considered my dad) I cry, it hurts, but then, I go to his grave, and share with him and cry more. J made me smile, she made me appreciate life more, not take it for granted, to keep her memory/spirit alive, my pink dragon tattoo makes me smile when I look at my leg 🙂 Please dont ever stop sharing your feelings and memories with us. I really enjoy them

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  14. Hi Michelle!

    I thought of you & Julianna today. You see, My grandma’s in hospital & has cancer, which might have spread – but we’re not finding out because she’s not keen for surgery. My heart is admittedly heavy & it’s emotionally hard to handle the news, mostly I’m emotionally exhausted. It’s mom’s mom – and with my mom’s dad passing last year it’s hard to bear with this now.

    BUT!!! In the midst of all of this, I was reminded of dearest Julianna. Julianna, who had a terribly compromised immune system, who gradually couldn’t even scratch her nose. But Julianna loved life, people, conversations, toys!!!, and who chose to LIVE. (Er, so it’s a bit different with grandma cos I don’t think the love for toys applies, but in general/gist kkk …)

    It’s still heavy and I’m still reeling, but then I’m also realising that even in situations like this, there are choices to be made, and the choice to hold a good outlook on life despite goes a long, long way.

    I miss you Julianna, but I’m thankful for the chance to have known you 🙂 I’m thankful that in times like this, I remember you and am reminded that even when things don’t look the way I would like them to, there is still light and it can still be a time of making good memories :’) Miss you my dear J, say hi to my grandpa for me! (Um, he’s tubby. And Asian. Does that help identify him, J? Haha.)

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  15. Michelle, I believe the answers to your questions, unfortunately, is yes. BUT, I believe, with time, it won’t be as gut wrenching and raw, or drag on as long. The love ❤️ and good memories will prevail and win. That is J’s legacy. The memories of her beauty, abounding personality, her joy, positivity, love, and faith, even at the worst of times, will carry you through, just as your love and strong arms carried her. Love is a superpower, the saving grace, her legacy and yours. May God Bless You and your family and thank you for bringing the joy of Julianna to us, I am better for it.

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