“Freedom is Being in My Sister’s Room”

Julianna’s CMT likes to throw curveballs – to the gut. I call them “BTW’s”. As in, By the way, she has scoliosis too. And paralyzed vocal cords. A dislocated hip. And that right diaphragm?…..not working. These are all the lovely gifts that CMT gave J during our hell years of 2013-2014.

When a disease takes so much away, you start to go numb. It’s a way of bracing against the pain of another loss — maybe if you expect the worst, it won’t hurt so much when it happens.

It doesn’t really work that way, of course. Expecting the worst doesn’t cushion the blow. It takes you to a dark place, and if you stay there long enough, the losses are much greater.

You see, numbness and love can’t coexist. If you love someone with a terminal illness, you will have pain. Reigning in your love to protect yourself just leads to more pain (and guilt). So the only answer is to love them and take the pain as it comes.

When you choose love over fear, you are able to see the beauty that was there all along. The CMT curveballs are still there, but they are surpassed by the wonderful surprises that come only through grace.

Wonderful Surprise #1: A&J

This week, Alex’s second grade class learned about Martin Luther King, Jr. and his fight for equality. They were asked to write a sentence about what freedom meant to them. This was Alex’s answer:


I wasn’t sure what he meant by this, but I knew I liked it.

I asked Alex about it the next day. Did he feel free in Julianna’s room because she doesn’t have the responsibilities (homework, hanging up her towel, etc) that he has? Because he can watch TV in her room? It wasn’t any of those things.

“I feel free in Julianna’s room because I wasn’t able to go there before,” said Alex. “And — I just like being with her.”

Up until the last month or so, Alex spent very little time in Julianna’s room. Their style of play (J is a director, Alex is a small tornado) doesn’t match up, and he’s not allowed to be near Julianna when he has even a hint of a cold. For the last few winters, he seemed to have a perpetual cough. When this happens, one parents is devoted to Alex, and the other is devoted to Julianna. We are careful not to cross contaminate. Strict infection control measures like these don’t exactly foster family bonding, but we don’t have a choice: the stakes are too high.

So far this winter, Alex has been gloriously healthy, and he has wanted to be with Julianna. After too much time taking a back seat to CMT and medical fragility, these two have finally been able to spend some time together as brother and sister. I wasn’t expecting it, but, oh, I am savoring it.


Here, J is camping, and Alex is building a fort.

Of course there are rainbows in J’s princess room. Would you expect anything less?

Alex wrote a few notes to his sister.

I believe that Julianna loves this more than anything.


Wonderful Surprise #2: Naughty J

It’s a novice parent move, leaving a baby unattended with markers.

This week, we left J unattended for just a minute — and came back to this.


With the help of lots of pillows and creative use of a hair elastic, Julianna was able to be a little naughty. She was so proud, and I was so happy.


Wonderful Surprise #3: Holding My Baby

I haven’t been able to hold Julianna in my lap for years. A combination of bad scoliosis, low tone and fear of making her aspirate kept me from trying.

The other day, I decided to give it a shot. It’s a bit tricky, and involves (again) a lot of pillows. Sometimes I get it all wrong, but sometimes I don’t. And when it’s like this, I’m in heaven.


J: Will I always be your baby, even when I am a queen? Or a giant?



15 thoughts on ““Freedom is Being in My Sister’s Room”

  1. I am so glad that you shared these beautiful unexpected moments that all of your family has been able to enjoy. I sincerely believe that when we find ourselves trumped by worry and fear, that God will offer respit to the sad, the bad and the ugly and give us a gift more precious than Earthly measure. I do not know why children are subject to such pain. It saddens me that you all have to weather this storm, but I am very glad you have decided to let outsiders come in and weather a tiny bit of it with you. You are truly in the presence of a miraculous angel and I hope that you will continue to see the ways she gives that back to you and your family. Thank you, as always, for sharing the stories and thoughts of these times. I know God is at work somehow and he holds Julianna very near his heart. God bless you, your family and all families trying to keep up the fight. You are an inspiration!


  2. Love the photo of you holding Julianna. Warmed my heart. Thank you for all your posts. Look forward to them more than anything else I read. 💜💜


  3. Very happy and appreciative to receive your most recent communication.
    Loved hearing about and seeing the photo of Alex & Julianna together as well as you holding her.
    Two more wonderful and priceless photos! : )
    All the very best wishes for you, Steve, Alex and Princess Julia,
    Sunday, Jan 24, 2016


  4. Seeing the photo of you holding Julianna warmed and broke my heart simultaneously. My daughter was in the NICU and had surgery on day 1 of life. I remember the joy I felt when I was first allowed to hold her, and I see the same love with you. Our daughter gives us the highest highs and lowest lows. I wish your family the best. You should know that all over the world, people are thinking of your family.


  5. Love what Alex wrote (I saw it the same way he did – Freedom is being in my sister’s room cos that means that the strict regulations are lifted and I am FREE! to do what I like ie spend time with her – never quite thought of the chores perspective but hey, I’m not a mom. Hahaha) 🙂

    also love the pics of A&J snuggling, & of you holding J. The joy on your face in pic of you & J is priceless! (also, yay, you did it – you had the courage to try again & it turned out well :-))

    Keep going Michelle, tell A&J often that people all around the world (even half the world away, in really far places .. like Singapore hehe) are thinking of them & following their journey – it’s refreshing to read of their sibling adventures (although ‘small tornado’ made me giggle haha). Reading abt them tgt is even more precious than reading abt the respective gems they already are.

    Have a good week ahead with hopefully more good surprises! xx


  6. Thank you for sharing. I love hearing about Alex and Julianna. I smile every time I see her and hear her. She is such a wonderful special little girl. Continued prayers for Julianna and your family!


  7. Hi guys so happy to see Julianna is feeling good and having lots of fun. I pray daily for a full a miracle that would give Julianna a full recovery. Lots of love and prayers from Pedro, Sujin, and Jessica.


  8. I still wish I could hold you all in my arms and make everything right in the world. What a sweet brother/son. Think of you all often…… ❤


  9. I love the photo of A & J and also the one of you holding Julianna. A mother’s pure joy is on your face. I’m so glad you decided to try holding her. From everything I have read about J I don’t think you will get away with NOT holding her now. 🙂


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