Walking on eggshells, constantly assessing the environment and mood of a child. Feeling both exhausted and frustrated, but also blessed and present. Realizing how intrusive the world can be, but also how beautiful and intricate. Longing for a future that will never be, but so thankful for the life we have been given. A life filled with contradictions is what it is like to live each day caring and loving a child with special needs.
No one can truly understand the ins and outs except for those who are walking with the same feet crammed into poorly shaped shoes. Shaped for the average person. Shaped for so few, yet desired by so many. You try to explain her. You pretend life is something it isn’t because it is easier than sharing the truth. Being vulnerable. If we truly expose our lives and feelings, becoming vulnerable, then we risk disappointment and hurt. Not just for us, but also for our child. And hurting her, well that isn’t acceptable. I spend countless hours maneuvering our household and lives trying to protect her from what I can. So many things are out of my control and they bombard her senses quickly and furiously. Therefore, I will try to control what I can, which means being vulnerable, truly vulnerable, just doesn’t happen often.
After her diagnosis, I remember searching the shelves of bookstores and aimlessly scrolling through the internet looking for wisdom and stories of other families like ours. I would hungrily read the words only to realize that they aren’t like us. Stories of strict diet changes, radical therapy, and cures. Stories of what I need to do. Where were the stories of how it feels? How to process those feelings? Stories of successes followed by failures. Stories of the contradictions. I never found those books or websites.
We were left to just do the best we could and accept reality while holding fast to hope. We were left with our story. A story that fills my head with words because I know it must be shared. Shared for my sake. Shared so others can step into our lives for just a moment. Shared because God has given us the most amazing gift and her name is Cate Scotlyn. This gift must be shared vulnerably, but that forces me into a place that I am not comfortable residing. Vulnerable. Raw. Honest.
How many of us are sitting on our stories because the sharing is too hard? How many of us are searching for these same stories, and because we cannot find them, we feel as though we are all alone? Share your truths. Share your stories. We need to hear them and experience your life through your words. I think being vulnerable, although hard and scary, may just be worth it.