I want to share a story with you. A special one.
Special needs family.
What does this mean? Why is it important to share the stories of special families? Well because they are among us. They are our family, friends, neighbors, and classmates…. By sharing their stories it helps bring awareness to their version of “normal”. Understanding how their lives differ from our own allows us to be more empathetic to their situation while showing us how similar we all are.
My nephew is 6 and has Cerebral Palsy. The kind of cerebral palsy he has is called “spastic, dyskinetic quadriplegia cerebral palsy”. What that means is he has global damage to his brain which causes many uncontrolled movements. He has minimal control of all 4 limbs of his body, as well as his neck and trunk. He is non-mobile and non-verbal *technically* but you better believe this incredibly smart kid will make what he wants to be known. Thanks to some pretty wonderful technology, he’s actually incredibly mobile with the help of specialized equipment.
The dynamics of their family may look a little different than most of ours on the surface because of tube feedings, meds, therapies, doctor’s appointments and everything that comes with being a special family. But the love + nurturing, support + caring, sibling fights + love (my nephew will regularly try to run over his sister with his walker), are all the same.
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I once asked my sister what she wanted neuro-typical families to know about her life, and her responses floored me. She replied, “The majority of us (special families) encourage questions. We are more than happy to educate you about our kids, especially if it is your children that are asking the questions. They are not trying to be mean or rude, they are trying to understand and that is the beauty of childhood. If your child comes up to mine, please don’t apologize to me and take your child away. Say ‘Hi’ to me and maybe ask your child who their new friend is. Don’t stop inviting us to your children’s birthday parties or outings. We may often say no, but please understand that there is a lot of grief that comes with this life – seeing other kids doing what ours should be doing is not always easy but we still enjoy being included. This is the road less traveled, but it is easier when we have people who will not be afraid to walk beside us.”
Documenting a day in their life has become a yearly project. I want my sister to look at their story and see how strong she is. I want her to be able to look past the “special” label and see just how amazing their family is. To see how much joy is within them. I want their family and any other family who reads it to see that special families, though their routines may seem a little different than our own, are in fact incredibly similar.
I invite you into a morning with the M’s to share in their joy, their frustration and the undeniable beauty of their every day. Their real life every day. The seemingly mundane moments and all of the magical ones mixed in between. Our real lives are a messy and chaotic blend of imperfect perfection and they’re worth preserving.
Next year, when Cerebral Palsy Awareness Day rolls around again, I hope that you will remember sharing in Caleb’s story and wear a green shirt to show support along with us.
Guest post writing and images are from photographer, Alicia Thwaites
About Alicia Thwaites: Alicia Thwaites is a family photojournalist and birth storyteller from Winnipeg, Canada. She is passionate about the honest, everyday stories that make our lives uniquely our own. She’s the mom of 2 wild boys and wife to a handsome rock radio DJ turned pool guy. They’ve become her ever her muses. Documenting her own life has always been part of who she is, and she’s decided to embrace the chaos – showing her beautiful clients the magic of their own imperfectly perfect stories. Website // Instagram // Facebook