I feel like the idea of don't waste your cancer is a heavy and significant one. I adore libby ryder's blog of the same title. It inspired me so much; I've even toyed and started to write an entire blog post don't waste your cystinosis, but haven't found the courage to tie up the loose ends and hit that publish button.
Tricky subjects require gentle words to avoid hurting feelings and hearts. Truth is, there is SO MUCH to gather up and learn when you are going through or living with a life threatening health diagnosis. There are some lessons that can only be grasped firmly when you stare death directly in the face. By no means am I saying motherhood is the equivalent to cancer and cystinosis in terms of hardship; please don't get the wrong idea and think that! I thought it might be a fun and interesting topic to challenge myself to dive into, flipping it onto the mamahood aspect.
I've wanted to record some of the little scenarios I've been indulging myself in lately with Miss S and how much more at peace I feel in the world when I do make that extra effort, go that extra mile, make that bottle of elusive fairy potion, to move that girl into smiles that light up the whole world.
There are endless beautiful things I want to show Sookie about life. That intricate ribbon of love weaving through every one of us. How it connects us all. The way it becomes that much more apparent when we approach everything with open love and we jump headfirst to forgiveness, instead of assumptions and hurt. When we reach out and give little pieces of our hearts, when we run toward pain instead of away from it, because we are all in this together.
If you've been reading my blog for awhile, you know (or at least I hope I've conveyed) that I view motherhood as a privilege. It is such a sacred place and journey to me. I respect it with the weight of the fact I'm technically, medically speaking not even supposed to be living and breathing right now, let alone been given the immense gift of motherhood. I know motherhood means a thousand different things to a few different people, and I freaking love that. I love that we can all feed off of each other's ideas and encourage and cheer and uplift and support.
I have a few questions for God when we meet. One of them is, "Why are so many outstanding and brave women aching to be mothers when others pop out kid after kid after kid, completely oblivious to how lucky they are?" Another question I would ask would be, "Why are sour patch kids so amazingly delicious?" But, I digress.
There are times when the tears come fast, spilling down my cheeks. Because I am overwhelmed with everything... staying on top of my grueling medication schedule and being the kind of mom I want to be, juggling my fears, all of it. Yes, I do fall apart sometimes. I want to be everywhere at once because I do not want to have regrets.
Earlier this week at my Aunt Doe's, I told Sookie if she stood under these flowers and laughed, a tiny little fairy would jump from them, right onto her head.
Tonight as we took a bath together, she asked me to be her prince. I talked in a (very bad) low prince voice. She thought it was hysterical. It lifted my mood tremendously too.
I have started a new daily ritual. I wake up. I think: Look at this gorgeous day. I've been given another one. Honestly, five days out of seven, I'm shocked I'm still alive. The enormity of it all is not lost on me one bit. I look over at Sookie and I simply study her. I soak her in. Every line of her face, every wisp of red curls, every bruise and souvenir of childhood.
Me: "Did you know you're my miracle?"
Don't waste it, mommas. Don't waste any of it, please. This is all so precious and thrilling and it is all right now.
I am living with cystinosis (an ultra rare disease.) Choosing joy & proving doctors wrong! I am blessed to be a momma to our girl who is 1 of 10 in the world.
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