It happened again. The reality of life with Spina bifida knocked me down and kicked me in the face yesterday. I hope you don’t think everything is easy when you read posts here but I also don’t want you to think it is all hard. It’s like any life, a mix of both. Yesterday was one of the harder days.
I took all eight kiddos to a Cub Scouts pack meeting with Joseph’s pack all by myself. It’s the one night each month that families are invited to come and participate. The plan was a bonfire. Fun, right?
While there were many places on the church grounds where the bonfire could have been held they chose an unmowed weedy field mixed with downed trees and holes. I couldn’t get the double stroller over to the fire, much less Mason’s wheelchair. Ouch.
Mason couldn’t crawl around in prickly weeds that would have been over his head. So the bonfire area where all the adults congregated was out. Ouch.
Then all the children were playing in a culvert overflow area by the bonfire field – steep sides and about 15 feet or so to the bottom – running and climbing up and down. All the children except Mason. There was nowhere for him to play and as my husband wasn’t even off work yet I had tired baby Samuel in my arms crying and couldn’t carry Mason down to the bottom to play with him. Ouch.
Meanwhile not a single adult said hello. Or waved. Or acknowledged my presence at all. I was 20 feet from the fire area and alone. Overwhelmed. Unable to help Mason play with the other children and unable to do anything else. Ouch.
When my husband got there and bees started bothering everyone we packed up and left. Twenty-five minutes after I had arrived. Exhausted. Discouraged. In tears.
Real life with Spina bifida. It’s not all fun. Came home to the lovely job of giving an enema and cathing. Great way to top off an evening, right? I think an extra pair of arms would be nice. Or at least an accessible world. Sigh.