Today she would have been nine. But what does that even mean?

I can imagine six โ€“ she almost got there, after all. And seven isnโ€™t so different from six. But eight, now nine, next year ten. A decade! My mind can go there, easily, but my heart doesn’t allow it. It won’t be crushed for a fantasy, not when life already contains such abundant substrate for brokenness.

An older Julianna is not an option, so I think of the past. Babies are magic, and she, with her perfectly round head and gummy smile, was no exception.


almost one here

She was not an easy baby, though. My strongest memory of her first few months is crying — mostly her, but me too as I rocked and paced, rocked and paced. Why wouldn’t she stop crying? It was colic, and I couldn’t wait until it was over.

She outgrew it, but then the real problems started: worry over missed milestones, a diagnosis, determination to beat stupid CMT. Then, abject fear when we realized  we would not.

Life was a serious of obstacles. Things would be OK if we could just get past them. When she starts walking; when we get the feeding tube in; when we get out of the hospital…it will be OK. 

Security based on supposition is not actually very secure at all. What if it doesn’t work out and life is most certainly not OK? You go to Plan B (then C, D, E and F) and get more desperate. If the cause is noble and you fight hard, it will work out, right? It has to work out.

This, as it turns out, is another supposition. The most earnest and pure longing of my heart, the desire to simply see her grow up, was not guaranteed. At some point, I stopped looking into the future; I couldn’t face it anymore.

Enter Julianna. If you spent any time with her at all, you knew she was special. If you managed to put away your phone and internal checklist and worry, you entered a world created by an agile mind and tremendous heart. And it changed you.

Her eyes said it all. They contained ancient wisdom and saw things that a child shouldn’t face, but reflected only peace and deepest love — and mischief.


I wish I knew what she was thinking here. Photo by Aubrey LeGault

They told me that things would be OK in the end, the real end. If I had ever doubted it before, I couldn’t now because she made it too real.

But enough of all that, they said. Life is short for all of us, so you have to play and sing and laugh.

And move, as much as you can, because you can. For the joy of it.

It really will be OK in the end, but right now, live.

So on the day she would have been nine, I’ll look for something beautiful and do something fun. The past is not accessible, not in the way I really want, and the future seems too long without her. All I have is now.

She was happiest when I stayed there with her.


19 thoughts on “Nine

  1. Big hugs to you Michelle ๐Ÿค— Your beautiful little Princess Julianna lives on in you. We will not forget your sweet little angel either ๐Ÿ’–๐Ÿ‘ง๐Ÿป๐Ÿ’–xxx


  2. Sending love and support to you and your family, Michelle! While drinking a cup of tea now, what comes to mind most is that J’s birthday will always be- and so will many instances of a beautiful pink sky. Stay strong! Thinking of you and your family today.


  3. Oh how I wish you got to know… we all got to know, the 9 year old Julianna. I have a feeling it would be much like the beautiful wise beyond her years imaginative and mischievous Julianna you will always have in your heart. My thoughts and prayers are with you today and always.


  4. My thoughts are with you and your family today, Michelle. Juliannaโ€™s dancing brought a big smile to my face. โค๏ธ


  5. I remember that beautiful baby and those eyes. I cannot imagine how hard her birthdays must be, mama. My heart and mind hold you, S, & A today.


  6. Happy birth day, mom, for creating such an amazing little girl named Julianna who has touched thousands of lives. And continues to do so. I think of Julianna every time I wear my tank top and feel her super powers on my heart.

    Sending you a huge virtual hug. ๐Ÿ’—๐Ÿค—๐Ÿ’—


  7. We will certainly not miss your angel. I started my morning in a bad way, we are moving and overwhelmed. When I read this I smiled, live for the joy of it. I will as I am wearing Julianna’s shirt right now – Love is a Superpower and when I wear it I often have someone smile and nod or wave. The time she spent here was powerful. Though I never had the privilege to meet her, your stories and pictures show such love, such love! She is accessible through the heart and mind. Peace to you and your family


  8. I hope you found that something beautiful today, that you found Julianna todayโ™ฅ๏ธ๐Ÿ’”โ™ฅ๏ธ
    Happy birthday in heaven, Julianna. Love you, friend.


  9. It’s so hard to know what to say. Time seems so unfair on days like these. My heart and prayers goes out to you mama. I am so grateful you have shared your families story here. Julianna has had such a profound impact on so many including me. My heart has been blessed to know her even in just a small way through your blog. I can see her dancing and twirling with Jesus with so much joy and freedom. A smile so beautiful. She is forever in my heart… โค as are you !


  10. Happy 9th Birthday, Julianna. Though I never had the joy of meeting you in person I feel as if I know you through your dear mother’s words and in knowing always that “love is a super power”… just because of YOU. Never forgotten are you. Blessed are we who live on in your super power angelic presence!


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