i get really happy when i'm blessed with sharing in the sacred moments of watching sookie fall asleep. there is something so other worldly about it. watching the calm envelop a little being who is high spirited and strong willed every single moment when she is awake. i can't help but feel the magic of it all, witnessing the peace take over her curious soul is simply divine.
kenley's 15th birthday party
reunited with daddy after his trip
there have been two deaths in our cystinosis family in the past week. two that i know of, of course there are more, but it never stings any less. a 42 year old man who was indeed, a true pioneer in the scope of living with this, and a 10 year old little girl. her story so similar to my own, that i could not finish the article on her sweet life because i was shaking uncontrollably. it is never easy to hear this kind of news and the span in between their ages is not lost on me...cystinosis is so unpredictable and you truly never know what will happen.
so we bend and sway and shift and adapt. there is so incredibly much i want to teach sookie. so much i want to give her. so much i want to show her. it can be horribly hard when i literally do not have the energy to get out of bed. it is easy for me to get down on myself on those days...i just crave to make every day of her life magical and when i can't take her on adventures, it hurts.
she's obsessed with momma's shoes
but i know deep down, in my bones and in my heart of hearts; i'm an amazing mother. i ache to show her how fantastic the world is, that every day holds such power of grace and new beginnings, how fabulous life is, that telling someone "i'm loving you" can be so much more powerful than the norm of "i love you". that organic veggies are superfood for your mind, body, and spirit, but also that sometimes it is too much fun to have ice cream and rainbow nerds for breakfast. that choosing joy is not always easy, but the power is always within reach.