Kaelin and I were having a 'lil coffee chat and at one point in the conversation, it turned to encouragement. It’s so easy to point out the shortcomings of a person, an event, or an organization. The life of a person with Sturge-Weber syndrome and the caregiver are so entwined yet divergent in opportunities to point out the lack of or letdowns especially when you’re tired or frustrated and can only see what’s right in front of you and your life experiences. It takes work and commitment to focus on the positive and try to view a situation through the other person’s eyes amidst a storm.
I was thinking of the Arkansas River that runs in town and how on any given day you have a peaceful flowing river that easily ripples over the rocks or there is a raging river runner's delight of foam and white water to navigate. The SWS journey is kind of like that too!
The person living with SWS might be headed toward the boulder in the middle of our stream of life with SWS and needs encouragement to go with the flow. The caretaker may need to hear don’t feel guilty if you’re easily flowing through life and slipping over the boulders. The caretaker will have other days where SWS consumes their every waking moment, and they are paddling like mad!
The world is rough enough now and we need to come together and encourage one another for every 'lil success we have made. Cheer on that mama who figures out a way to take their wheelchair-bound daughter to the beach and try a new experience. Cheer on the dancer who overcomes her anxiety and nails a first-place medal in a dance competition. High five the dad that goes out each long day to earn a living to support the mounting medical bills and still makes time to play after dinner. Let that tear of the joy slip down your cheek when the seizures stop, and your child comes back around. The sweet precious flow of life! Thank you for being on this journey with me and giving me access to the discouragement and encouragement-filled moments you all have. It inspires me and fills me with hope.