It's become a tradition that every year on Cerebral Palsy Awareness Day (March 25th), I document a half day in the life of the M family. Their oldest son has severe Cerebral Palsy, and they see it as a way to spread awareness and acceptance to typical families, and a message of hope to those facing a similar situation. This family is extra close to my heart, as Mama M is my little sister. She is a warrior mama like no one I've ever met before, and I am so incredibly humbled every time I get to witness her strength and devotion to her amazing family.
The kind of cerebral palsy my nephew has is called "spastic, dyskinetic quad cerebral palsy". What that means is he has global damage to his brain which causes many uncontrolled movements, and all 4 limbs of his body, as well as his neck and trunk are affected. He is non mobile and non verbal, technically, but you better believe this incredibly smart kid will make what he wants known, and thanks to incredible technology he's actually pretty mobile with the help of specialized equipment. Their family dynamics may look a little different than most of ours, (with tube feeds, meds, therapies, Dr appointments and everything that comes with being a special family), but the love and nurturing, support and caring, the sibling fights and love (my nephew will regularly try to run over his sister with his walker), are all the same. I invite you into a morning with the M's. Share in their joy, their frustration, and the undeniable beauty of their every day.
He asked if he could sit with me for a bit. This Auntie was happy to oblige and very grateful my sister wasn't scared to grab my camera. After all, I am a part of this story too!! Another incredible piece of technology out there is something called an "eye-gaze". It's an attachment and software for a tablet that my nephew can control with his eyes. He uses it a lot in school so that he can actively participate in his classes and communicate with his peers. He's a stubborn little stinker though, and thus far refuses to use it at home, because at home are the people that are capable of understanding him without it. The mandatory "Wear GREEN for CP awareness" selfie!! I took one with my kiddos when I got home too! Flipping pages of cookbooks is one of his favorite things to do! Also the morning check in with Nana and Opa via skype to remind them to wear their green shirts today! When our friend Heather arrives for the day to play, that's pretty exciting stuff! Respite workers have been such a blessing to my sisters family, and to have found some wonderful ones is nothing short of amazing. While Caleb has a few respite workers, a couple of them have essentially become a part of our family! And just like that, it was lunch time and time for me to go. Time for me to head back to my own chaos.
Thank you friends, for sharing in this beautiful every day story. And I hope that next year on Cerebral Palsy Awareness Day, you will join us and wear a green shirt, and show your support!
**If you have questions about having YOUR every day story captured, please don't hesitate to get in touch! All half and full "day in the life" sessions come with a 10x8 hardcover photo book of your story. You can contact me by clicking HERE any time! I look forward to showing you that wall worthy moments happen every single day, if you take the time to look for them....