Posted May 16, 2015 by Jacquie Robison
How are we going to approach activities and outings as a family?
That was one of the very early conversations Jeremiah and I had after Sofia’s diagnosis. It ended up being a brief discussion, as we quickly agreed that we would bring her everywhere and she would enjoy the same adventures we went on.
To a large extent, we’ve been able to make this commitment a reality. Many folks have congratulated us on this and point to our determination in telling her she can do anything she wants as the reason.
But, actions speak louder than words. And the truth is that we owe a debt that can not be repaid to our friends and most especially, their children. When we shared the news of Sofia’s condition and told them what we knew about cerebral palsy, they listened openly and without pity. They asked how strong she would get and we told them we honestly didn’t know. They asked what they could do and how they could help. We told them we were still figuring that out.
But, there WAS one thing we knew for sure. And we told them. “CP is non-progressive, so we only know where her floor is. This is it. No one knows where her ceiling is.” We wanted her to have fun and have adventures and be a part of the crazy, messy mix of their kids playing and exploring and yelling and, well, being kids! They took us at our word and continued to invite us places and celebrate together. So, we brought her to bouncy house parties, playground pirate treasure hunts, Hallowe’en festivities and impromptu dance-offs!
We spent time talking to them about the language we used with Sofia to talk about what was going on with her legs, and how they could talk to their kids about it. We shared our concerns about her progress, but just as importantly, we gave voice to our dreams. It was an incredible gift to speak out loud about the hopes for your child with delays like Sofia’s, and not have someone manage down your expectations.
Those get togethers provided safe and welcoming spaces within a group of her peers for Sofia to work on new skills. Our friends’ children were the best examples we could ever hope for to show our daughter how much fun there is in moving your body.