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.