Yesterday's post churned up some thoughts in my mind that I like to keep buried. It is always better to bury the stinging parts of this special journey, because if I didn't, they could overtake the beauty of it.
In my post about our train excursion, I mentioned the dialogue that each of us had during the ride which was, "There is NO WAY we could have done this with a wheelchair!", or "Bridger would have hated this!"
Absolutely true. It was with some sting that I thought about that as I looked out the window of our train car. There is so much of the world that is inaccessible or not possible for us to enjoy as a complete family. I am learning how to give the rest of my children those opportunities and experiences without the accompanying guilt that Bridger is not a part of our "family time".
I have had mothers who are decades further along in this journey coach me on such things. They counsel me to take some time and enjoy experiences as a family without the extra weight that comes with caring for and managing the challenges of a child with special needs. They try to reassure me that it is the only way to survive and maintain health for all in the land of Special.
While this wisdom can vary greatly depending on the specific demands and needs of the disability of the child, it is absolutely valid and wise counsel for us. But while it may be healthy for us, it never feels right.
Many don't see that we live most of our life as a House Divided.
Yesterday afternoon was our neighborhood block party. For a variety of reasons, including the accompanying heat and seizures Bridger could experience, or the fact that he wants to be a part of the pack of children running around and can't be and gets frustrated and screams, we have to "divide and conquer". Alan took the rest of the children to enjoy the neighborhood party while I entertained Bridger at home. As I played with him I could see the party happenings outside the window. I was glad my children and Alan were enjoying the festivities, the food and company of neighbors, but it was accompanied by the sting of division.
Yesterday morning was Sadie's field hockey tournament. I was out there cheering her on. She played great, her team won the championship! I took her out for ice cream to celebrate. She was beaming. It was accompanied by the sting that her dad couldn't share in her proud moment as well. He was home taking care of Bridger who can't attend the games because, again, of the seizure inducing heat and he also hates clapping and will go into screaming and inconsolable tantrums with the clapping and loud cheering and yelling at games. Alan and I have never attended a game together.
The week prior was a church potluck. Again, for many reasons, a no-can-do for Bridger. I stayed at home with him while the rest of the family enjoyed the church activity.
I take the kids to see the fireworks, while Alan stays home with Bridger. Alan attends the school event, while I stay home with Bridger. I attend the piano recital, while Alan stays home with Bridger, Alan takes the kids trick-or-treating while I stay home with Bridger, I take the kids to a movie, while Alan stays home with Bridger. . .
And so the pattern goes day after day. Drawing straws to see who attends the activities with the other children and who stays home and cares for Bridger.
We have had to focus less on "family time" and simply put our emphasis and energy on "quality time". We make it work but that doesn't take away the sting that comes with this subsequent side effect in Life with a Side of Special.
We are a House Divided.