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November 2, 2020 / JustinKays Porter

One Year

On our trip to LA a few weeks ago, the study coordinator reminded me that we had just reached a big milestone. This week was Millie’s one year anniversary of being in the study and receiving treatments. After getting this reminder, I immediately started ugly crying in the hospital, much to the dismay and confusion of the staff there. They didn’t understand why something like that could be so upsetting. Shouldn’t I be happy? We were doing all we could for Millie; I should be proud.

Their reaction made me equally confused. How could this be exciting? When we’ve lost so much in the last few months? Proud? Excited? I’m terrified. I’m exhausted. I don’t know what to do, how to feel, where to place my hopes.

And then it hit me: these kind people don’t know my Millie. They don’t know the little girl who cruised around our Chicago apartment with her walker looking for chocolate covered raisins. The girl who giggled uncontrollably when her dog chased bubbles. The girl who had chubby cheeks and a little belly from eating m&m pancakes and peanut butter and avocado sandwiches and too many donuts. The girl who would help me read books and tell stories, who would ask to hear Van sing songs, who would spend hours in her tower watching me navigate our increasingly complicated life. The girl who loved to play with her babies, and make food in her play kitchen, and cook on the barbeque in her house. These people don’t know her. But I do. And I miss her every minute of every day.

The last few months have been hard. As much as we keep hoping and trying new things, Millie is not getting any better. And it feels like a little more of my girl slips away from me everyday. I still catch glimpses of her, but the smiles are harder to come by. And the smiles are really all we have. To be honest, I don’t know where to go from here, or what to do. I’m just trying to love her as best I can and be whatever she needs me to be. But I can’t help but remember and miss that little girl; I would give just about anything to hear her say my name, or give me a hug, or hold my hand.

I believe in miracles. But through this journey, I’m beginning to see that miracles come in all shapes and sizes. And as much as I want a big miracle for us, maybe it’s not in the cards. Maybe our miracle was having some extra good time with Millie, to watch her grow and shine and be her beautiful self for a few extra months. And…

This post has sat like this as a draft for a few weeks. I didn’t know what to say next. There’s more. So much more. More to be said, more to be felt. But right now, this is all I have. I can’t do “more” right now.

So I’ll end with this. My sweet cousin made us “miracle Millie” bracelets, and I would like to share then with anyone who will wear them (I have lots, don’t worry!). Wear the bracelet on your wrist, and hold my family in your heart. Send me a text or email or leave a note on the comments and I’ll get them to you. We have regular and youth sizes, but some adults (myself included) may like the youth size better.

And then this set in my drafts for another week or two. It felt unfinished. And today I realized what else I needed to say to you all.

First, thank you, for your love, support, prayers, check ins, positivity. For all of it. If love and happy thoughts were enough, Millie wouldn’t have a care in the world. I know you all care about us and the journey we are on, and I’m sorry it’s taken me so long to post an update. I struggle to share news that isn’t good, but it’s time.

Second, this post sounds very dramatic. Reading and rereading it makes me wonder whether or not I should post it. But here it goes. I guess I just want to say that there are still good things happening. We get smiles, we have easier days. We recently figured out how to get Millie back in a bike seat and she still loves it. There are happy moments and that’s what I need to remember.

And one more thing… I’ve suspended all my social media accounts in the hopes of improving my mental health a bit. So if you reach out on those platforms, I’m not ignoring you. Keep the love and positive vibes coming our way. Our fight is far from over ❤️

21 Comments

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  1. Kimberly Clet / Nov 12 2020 6:23 pm

    Kay & Justin
    Thanks for sharing your story. That must’ve been incredibly difficult. Beautiful Millie has been in our thoughts daily. Jeff and I would be honored to wear a miracle Mille bracelet. Much love and hugs.
    Jeff and Kim

  2. Bob and Roni Hartley / Nov 11 2020 9:24 am

    Dear Kaysea and Justin, I read this on a plaque and thought of you,

    “In case you forgot to
    REMIND YOURSELF
    this morning
    your Smile
    lights up the room,
    your Mind is
    INSANELY COOL,
    you are
    WAY MORE
    than enough,
    and you ae doing an
    Amazing
    Job
    AT LIFE.”

    Love and prayers, Roni

  3. Peggy Campbell / Nov 9 2020 9:10 am

    Dear Kaysea and Justin,

    Our hearts go out to you. You are both so strong and such loving parents. Love is the most important at this time for all three of you. We send you our LOVE. Let us know if Nancy has bracelets and we will pick up a couple.
    Love you,
    Peggy and Bill

  4. Roni and Bob Hartley / Nov 8 2020 9:22 am

    Thank you for sharing your heartfelt story. You are all so brave. We will continue to pray for miracles. Love to you.

  5. Kristen / Nov 7 2020 5:52 pm

    Hi Kaysea,
    It’s Kristen Morrison, Kevin Morrison’s wife, (who worked with Justin at BNB.) We’ve been flowing along but never responded and I realize how lame that was. So, Couple of things 1)We’re in awe of you and Justin, but also especially you bc you live it in person every single day. You are an amazing mom and I’m just so proud of you. 2) Sign us up for 4 bracelets. 2 for the adults and 2 for the girls. My phone number is (559) 741-6888. Reach out if and when you can, zero pressure. 3) We are always praying and following along with you all.

    Xoxo,
    Kristen

  6. Betsy Downs / Nov 7 2020 9:26 am

    Sending our love. We pray for you all often. I can’t imagine what you are going through and sometimes even find myself angered with an “It’s not fair” attitude. I do know that Millie is so blessed to have you as her sweet momma. You are loving her well.

    The girls and I would love to wear bracelets. We would need 2 adult and 1 youth.

    Know that you all are loved and if we can do anything to help just ask. ❤

  7. seabreezecindy / Nov 5 2020 9:40 am

    Sending our love ❤️

  8. Susan Wilson / Nov 4 2020 6:54 pm

    What an adorable picture of Millie! Thank you for continuing to share your so personal and heartfelt updates. Please know we are all here for you and send our love and prayers. I’d be honored to wear a miracle Millie bracelet!

  9. Ineke Madderom / Nov 4 2020 4:38 am

    Thinking of you and praying for your family. I would love a Millie bracelet.

  10. Jennifer Phillips / Nov 3 2020 3:07 pm

    Such a beautiful and heartfelt blog, and I felt every emotion along the way! Millie is a beautiful little girl; an earth angel, and just like her beautiful grandma, she is a teacher. She is teaching us all how to appreciate the beauty in life and how to cherish special moments, and persevere through the tough ones! She is teaching us how to bring family together, how to love while we can, how to indulge every once in a while in things that bring us joy, (like chocolate covered raisins, lol), and most importantly, how to live! I would be so very honored to have and wear one of those bracelets!! Hope is a beautiful thing, and no matter what life brings our way, may we always believe in, and hope for miracles!!❤

  11. nancywporter / Nov 3 2020 7:16 am

    Millie’s sweet smile is priceless and I’ll hold it forever. Our hearts are filled w love and ache for all of you.
    Grancy

  12. Maria Feldman / Nov 2 2020 3:37 pm

    I’m smiling at Millie’s beautiful face in your post and crying at the same time. It’s ok to ugly cry, Kaysea. It’s hard to hold all of your love for Millie in your heart…it spills out of the eyes. I would love a bracelet if that’s ok..youth? Know that we are thinking about you all and praying for those miracles to rain down and touch all of you.
    Maria

  13. Cindi Rhodes / Nov 2 2020 3:35 pm

    You all are always in thoughts and I will continue to send positive energy to you. I would love to wear a bracelet if you are going to mail them out. Keep those hummingbirds coming!

    Love,
    Cindi

  14. Lauren Lee / Nov 2 2020 3:31 pm

    Thinking of you guys and sending our love.

  15. Ma / Nov 2 2020 3:13 pm

    So much love to you all. You are always in my thoughts. I love the time I have with Millie, our sweet girl, our inspiration to keep in mind what is truly important in life.
    Love our Millie’s hummingbird garden that we made this weekend. Come on hummers ❤️
    Nate and I saw a hummingbird this morning in Millie’s Hummingbird Garden 👏

  16. Kris Pleimann / Nov 2 2020 3:03 pm

    So much love coming to you from the Colorado Pleimanns and all the extended TONG family.

  17. Susan / Nov 2 2020 2:58 pm

    Such grace under fire you have…reflections of your loving mom and dad…the connection I have with you and Millie and Nate…I have a HUGE amount of gratitude for you sharing this intimate, private battle, I look at Millie’s picture daily and urge her in my heart to heal. You are in one of the most difficult states that life has to offer…the state of limbo…yes, of course your mental health is more important then any of us out here urging you on..you know we are out here and we know you are fighting the battle of a lifetime…no need to apologize for needing space and energy for your family. we all understand. We are out here loving you all more then you will ever know…I wear my Miracle Millie bracelet always.

  18. Anne Williams / Nov 2 2020 2:51 pm

    Thank you for sharing this beautiful picture.. her eyes, her smile. I can’t begin to imagine how difficult it has been for you to let go of the other progresses that she had made. It is hard to find words that are meaningful, but my prayers are with all of you for strength, for guidance, and for comfort.

  19. Evan J / Nov 2 2020 2:33 pm

    Sign me up for a bracelet! Thinking of you guys often. Much love from the Midwest.

  20. Chelsey R. Perry / Nov 2 2020 2:33 pm

    Love you so much, Porter fam!

  21. Evan Johnston / Nov 2 2020 2:29 pm

    Sign me right up for a bracelet!

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