Several years ago, I wrote about my New Year’s resolution for now and always as being courageous for my daughter Peyton.
Since then, our family has continued along in the journey of advocating for inclusivity, belonging, and have shared the commitment to be brave in moments of adversity. What we’ve come to understand is that this journey is one that I believe will be forever long. For myself, for my children and for most of our world as it stands today.
What I feel has changed since the last time I wrote is how I have learned that I too need to refine my listening skills to the stories that my own children are sharing with me.
Let me give you an example. I was in the car driving my son to a music lesson and after picking him up from school, he said, “Mom, I love you.”
I told him that I loved him too, but in an emotional moment that all parents have where they share what they’re feeling with an audience that might not fully grasp what they’re talking about, I said to him, “It makes me so sad to think that I will never hear Peyton tell me those same words.”
Our daughter Peyton is 10 years old and has a rare medical condition. She’s had more than 20 surgical procedures at Gillette Children's throughout her life and what she can verbalize will always be limited.
But our son, Whitten, who is wise beyond his years said to me, “Mom, she tells you all the time. It’s just like this, as he makes a kissy sound and the sign language sign for thank you at the same time.”
It’s exactly what Peyton does to me, every single day. I couldn’t believe that my 6-year-old son was explaining to me how his sister tells me every day, that she loves me.
I was so focused on her inability to speak the actual words that I missed what she was communicating every day, in her own Peyton way.
It’s these moments where I pause and reflect and realize how my journey of being a better human and a better mom, is far from over.
I have always said that the only thing that I want for Peyton is for her to be able to “create her own story.” I want her to tell us what she is capable of doing and not let anyone believe less of her.
To do this, I am also realizing that I need to reframe what my expectations are for her, and believe in her story looking different than I would have initially expected it to be.
Someone recently shared with me that caring for a disabled child is harder because they will never be able to defeat their illness. I can see how one would think this, but I would argue that Peyton has defeated her “illness” in every way imaginable.
We recently made of list of all the things that Peyton has done in the last two years while isolating at home with our family that we thought she would never be capable of doing. The list is long.
Peyton continually surprises us and re-writes her story with every milestone she makes.
I am so grateful to have been home with my children for the last two years to see these moments as they happen, and feel gratitude that my daughter and son continue to teach each other things, and that we as parents benefit from that experience.
We have created a nickname recently for Peyton, which is our iron butterfly.
She is delicate, beautiful and constantly going through a metamorphosis. At the same time, she’s strong and powerful as iron. Both things are true and as scary as it can be, we too have to allow her to fly when she is capable of writing the next chapter of her own story.
Whether that’s allowing her to go back to school in the new year, steering her own bike (with me having an anxiety attack in the background) or possibly going down a sledding hill with her dad!
If she wants to do it, we should find a way to get the courage within ourselves to make it happen for her!
My challenge this New Year is to think about the stories that my children are creating (or trying to create) and how I may be playing a part in narrating them by my own self restraints.
I am going to be courageous for Peyton and Whitten, not only in how I advocate for inclusivity in our communities for them, but also in how I may be preventing them from delicately flying away in their community to share their own beautiful selves.
As a community that supports medically complex children, let’s all be courageous and allow our children to show us how amazing they are and how they can defeat the barriers that have been set in front of them, one small success at a time!
The Berkland family in 2021
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