Before I dreamed of becoming a mother, wife or a doctor, I wanted to write.
I didn’t have anything to write until my heart was broken, and I didn’t have the courage to share until I latched onto hope. I am grateful to finally be writing. It is one of the most satisfying but difficult things I’ve attempted.
One of the things that I struggle with sometimes is deciding on the tone of my posts. Our story is painful; Julianna is a riot. I’m sad; I’m hopeful. We are not a normal family; we’re just like every other family.
For example, the other day, Julianna asked me if she will one day lose her ability to speak. She was lying in bed on one her “body breaks.” Her spoken thoughts are like little arrows sometimes, unexpected and piercing.
J: Will I not be able to talk?
M: I don’t think so, Julianna.
J: Does the CMT make it hard to talk?
M: It has in you, sweetie.
M: Because you need muscles to talk, and to breathe. And that affects your talking. Your voice is softer now, but that’s OK. I understand you perfectly, and I think I always will.
J: My voice sounds the same to me, but softer to everyone else.
M: Yes, that probably right. It sounds the same to you. Julianna – do you worry that you won’t be able to talk one day?
M: I don’t think that will happen. God knows how important it is for you to talk. I think He’ll make it so that you can always talk. I just believe it.
J: It’s up to God.
M: Yes – it is.
An hour later, we had this conversation as I was getting Julianna ready for bed.
J: Here – I made lunch for you.
M: Thank you.
J: It’s a sandwich, an apple and a banana. And for a drink, I gave you milk. It’s in a brown paper bag.
M: Thanks – that’s so kind of you.
J: Eat your sandwich.
M: The sandwich says “Don’t eat me! Don’t eat me!”
J: Just eat it.
M: But it’s talking to me.
J: Mom, if you just eat it, it will stop talking.
M: But then I’ll feel guilty…
J: Don’t worry. Christmas is a long time away.
M: What? So I’m only supposed to be good for Christmas?
J: OK, ok. I’ll make you something else….mac and cheese.
J: And it doesn’t talk. It doesn’t have eyes or a nose or a mouth. It just sits there.
That’s the way it is here. We have a five-year-old child who has experienced too much, and she thinks about things that most of us cannot (and do not want to) fathom. She’s also a little girl with a delightful imagination and rapier wit. She breaks and fills my heart.
And this is the only way I can write it. It seems disjointed and contradictory, but it’s our life. Joy exists with sadness. Bittersweet is its own flavor. Right now, that is enough.
22 thoughts on ““Does the CMT make it hard to talk?””
I think your writing reflects your reality, and that is not vanilla or linear.
I hope Miss Julianna can speak and be heard far into the future.
I definitely think she will find ways to communicate..
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Thanks. Glad it makes sense to others.
I’m happy for you that you find satisfaction in writing and documenting your family’s life. I would so love to sit and have a conversation with that child of yours!
I’m sure she would like the same 🙂
Your writing is brilliant!
As per comments! Life wouldn’t be life without its fair share of ups & downs – too much happy (only) will deny the sad, too much sad (only) fails to appreciate the happy.
& in between there’s a dash of Julianna-isms – “You’re heavy. You’d break the chair cart!'”, “God says Julianna is Not Tired”, “if they don’t have much, they can always give a penny!”, a splash of sibling love (“Freedom is being in my sister’s room”), & of course a sprinkle of Mummy mix-ups (“I said PICK the roses – I would Never kick roses ..”/”oh. Right.”) :p
& yes of course regardless of how mature a child is (“CMT means I can talk but I cannot walk!”), children will be children – case in point now, when J decides that it’s okay to feel guilty on a non-Christmassy occasion hahaha (but yes – I would ask her the same, are we only being good for Christmas alone, J?)
Then mermaids & Disney princesses & Merida – does she like Mulan? Can you tell her that Mulan is Asian pride & therefore the best sort-of-not-really-but-still-a-princess anyway? 😌
Keep them coming as they are, I think an even balance of the sobering & sparkling are a good portrayal of the Snow family story.
Love y’all! x
You have a good memory, and she knows Mulan of course. She calls her the warrior princess…and yes – kids will be kids. Thank God!
You are a gifted writer, Michelle. Keep on keepin’ on!
As far as the ability to speak (you have probably already done this research :), here is an article about someone with ALS did: http://www.npr.org/sections/health-shots/2014/02/25/280708234/for-those-unable-to-talk-a-machine-that-speaks-their-voice
You have a gift of writing and sharing your family with us. Thank you for sharing Julianna with all of us. She makes me look at life with joy and sadness all in the same day. J makes me smile❤
Thank you – it’s one of the unexpected things that has come out of all of this. She makes me smile too – hard not to be stoic with her around…
Your writing is delightful and insightful……thank you so much for doing it…….I love the conversations you relate to us……it our way of being there when we’re so far away. You are in our prayers always…..She is a delight to hear about….BIG HUGS
Thanks – I’m glad that you can get a sense of Julianna through these posts.
Hope you guys have a great Easter coming up. We are so happy to see Julianna is doing well. Sending our prayers from Pedro, Sujin, and Jessica.
Don’t change a thing. It truly is possible for joy and sadness to co-exist. I have experienced it myself in dealing with my husband’s death from cancer 4 years ago. It was all bittersweet, for sure, but I have some very good memories from times when we were in the midst of his worst days. Keep looking for those sweet moments. It looks like Julianna is very good at creating them! And I love your ability to communicate her spirit so well.
Thank you very much – this means a lot to me. I’m sorry about your husband.
Thank you so much for sharing your story. Through you we have grown to know and love Julianna. She is an extra special little girl so positive, so funny and so loved by your family. I have her always in my heart, thoughts and prayers. I pray for a miracle. Continue to share her light with us.
Thank you – that means a lot. And thank you for donating to CMTA in her honor!
Well a couple things are definitely sure. Julianna is a very intelligent, thoughtful and utterly amazing
child and through your writings and photos thousands of us have been blessed to get to know her, her
brother, and her mom and dad. You each provide a very hopeful and comforting world for her to
truly live her life to the fullest. That makes us all very happy!! : )
Tue March 15, 2016
Thanks – it means a lot that people get to know J through my words.