Our Life is…

K is thirteen today. Can you believe that?! It seems almost impossible, but she grew up so much while she was 12, it also seems exactly right.

Her 13th trip around the sun was full of immense challenges and hardship, and yet, when I asked her to rate her year during her Last Night of Twelve interview, she rated it as medium. MEDIUM. I personally wanted to burn an effigy of the year last night, because it sucked a lot of the time. But K has always been my persistently positive girl, and everything skews upwards for her somehow. It’s a gift. I love it. But I hope she never feels the pressure to maintain that facade to benefit us or anyone else in her life. I pray that her magnificent resilience holds, that the silver lining is always and forever where her eye is drawn, but only for herself and her own strength and joy. I tend to be more of a cloud-dweller myself and so I will always be content to sit through a storm with her, without a single mention of silver linings, for as long as she can resist their pull.

I talk a lot about what our life is like because I want other people to understand it and be comfortable around it. I don’t want feeding tubes and life-limiting diseases and oxygen tanks to be scary and foreign. I want people to get a glimpse of what normal is to us. I want K to live in a world where her uniqueness is welcomed and somewhat understood. But I still don’t share everything, even if it seems like I do. A lot of the hard places this year haven’t been discussed because much of the details no longer belong to me, and it isn’t all for public consumption. But even in the public arena, there were multiple hospital stays and many days when she could only go from her bed to her wheelchair; she had to move out of her room upstairs and into Jo’s room downstairs because the stairs became unsafe; she had to give up her beloved theatre for a time; she came to me day in and day out with awful symptoms and for the most part, I could only say, “Okay, I’ll make a note of it and tell the doctors.” It was hard. I know it was hard for me and I can only imagine how hard it was for her. It wasn’t without lots of bright spots, though; friends and family and having a solo in “You’ll Be Back” in a Hamilton music revue and meeting the guys who write Nightvale and seeing a couple of TUTS shows and getting a room makeover and the Big Haircut…so many precious gifts and memories to hold on to! I just hope and pray that the ratio will shift in this new year and that thirteen may not be quite as bumpy for her as twelve was.

K has changed my life in ways I cannot even fathom, though I always try to take stock at this time of year. She has made me compassionate and given me wisdom and shown me what joy is in the midst of suffering. She has taught me take each day as it comes and not get too far ahead, worrying about what tomorrow and next week and next year may hold. She has brought Matthew 6:34 to life for us. She has built a community around us and brought people into our lives that we cannot imagine being without. She has made me laugh every day, I think.

I don’t even know who I was thirteen years ago when this beautiful, fresh, little human was placed into my arms for the first time. There have been times when I have thought about that version of myself and wished I could travel back with a warning about the challenges to come, to somehow give myself all the things I will need in the days and years to follow, but the truth is God did that. He created me a K and she brought so many of those things into our world with her, and they’ve each been unpacked as our journey unfolds.  I hope that we’ve had the things she has needed, as well. She has been such an incredible gift to us all and I’m so thankful that she has been in this world, spilling her joy and laughter and boisterousness and quirkiness all over it, for thirteen whole years now. And I feel so lucky that I got to have a hand in bringing her beautiful soul into this place. Happy birthday, K! Here’s to many, many more! ❤️