The girl I’m “searching” for

This face. Her beautiful, light-hearted, smiling face. This is the girl I’m searching for. This is the girl that I have slowly lost over years and years of pain and medical interventions. Each blood draw and IV and NG-tube and injection and surgery and procedure and test and hospital stay she has gone through has taken a part of Avery’s innocence. They have stolen a care-free, fun-filled childhood from her. We watched as the normal wonder and excitement that fills a child’s eyes were replaced with sadness and pain and, worst of all, defeat. I want her back.

Through all of the struggle, there are moments, sometimes even days, where we see her. There are times when she can break away from the pain and she looks so free and happy that her entire personality seems weightless. It stops me in my tracks. Every time. These moments keep me fighting when I feel down, because it reminds me that she isn’t completely lost. She is still in there. Though I mostly talk of her challenges, I want you to know who Avery is and why I won’t give up until she is always with us.

Avery is funny. It is always surprising because she is so quiet and rarely has much to say. When she is having a good day, she can talk for hours. Just when you think she isn’t listening or paying attention she will come up with some comment that lets you know that she is still very much a part of the conversation. She has a very dry, sarcastic personality (I wonder where she gets that from) and it’s amusing coming from such a tiny, sweet-looking 5 year old.

Avery’s laugh is amazing. She has developed a pretty good “fake laugh” to put on when she isn’t feeling well and someone’s trying to be funny, but when she really laughs, she does so with her whole body. I can vividly remember when she was a baby her laughing in the bath with her shoulders shaking up and down. I realized recently while watching her, that still, to this day, when she is truly happy, those shoulders go up and down with her infectious laugh. I love this about her.

Avery is a dancer. One of my favorite songs is “I hope you dance” and I love the message that it sends. It goes right along with one of my favorite sayings “dance like no one is watching” and that defines Avery’s style of dance in a nutshell. When she dances, I can see her breaking through. She lifts her head to the ceiling and closes her eyes and moves. There is a huge, almost mischievous smile that grows across her face as she just lets go. Watching her dance like that makes me feel free. It’s the feeling I remember having as a child when you are swinging on a perfect, clear blue skies kind of day and you close your eyes and lift your face to the sky and feel the sun on your face and the wind in your hair. It makes you feel alive.

Avery is silly. She thinks it’s hysterical to “go limp” where she collapses in my arms and when I try to stand her up she just crumples to the floor over and over again. She laughs and laughs. The way she thinks I work with Donald Trump and believes any old man in a suit is Donald Trump is hilarious. She loves to play “copycat” and will drive us all nuts repeating everything we say. She will randomly come walking out of her room with (clean) underwear on her head acting as if nothings going on. She purposely puts on her sunglasses upside down just to see me smile. That silliness reminds me that she is still a child. I love her silliness.

Avery is sweet. When she is not in pain, she has such a kind and gentle heart. As much as they can argue on a regular basis, the second Mady gets hurt, Avery runs up to Mady’s room to grab her blankey or get her a band-aid or ice pack. When I am stressed about work or anything else, she will take her tiny baby hands and softly rub my face and give me an Eskimo kiss as she says “ugga mugga” ( a Daniel Tiger reference). She is sensitive to others that are in pain and will hold my hand if I’m getting a blood draw. Even the sound of her voice is sweet and the cute things she says sound cuter because of that tiny voice. I am grateful when she is sweet.

This is the girl I know Avery really is. I don’t get to see her nearly enough, but when I do, it’s like a weight has been lifted off my chest and I can breathe. My fight and my journey has always been about finding a way to remove all the pain and fear and trauma so that she can be who she really wants to be. Who she is. And who I will break free.