Sometimes Sunday afternoons can be relaxing with just our family. This afternoon, all four girls watched a bit of Wizard of Oz on TV. Emily and Janneke were together on one couch, and Sophia and Rachel were on the other couch - feed pumps creatively tucked behind so the tubing wouldn't interfere with snuggling.
Watching them made me think about the dynamic between our older girls and younger girls - the "siblings of special needs" dynamic.
I remember when Rachel was born, we were told by some people that her needs would bless Em and Soph, making them extra compassionate and kind. (Kind of like the other comment, "Special children meant for special parents.")
Really? I know the words were offered with good intentions, but truthfully, those are strange prophesies. I don't believe we can predict accurately that Em and Soph will be extraordinary in some capacity because they are sibs to sisters with special needs.
If that were the case, wouldn't all soon-to-be parents be hoping for children with special needs - instead of healthy babies?
Time will tell how our family's journey will shape Em and Soph. God's plan for them will unfold as we see it, one day at a time. No fortune telling here.
We do know from others' experiences that there are potentially some tough days ahead - as there have already been for us when it comes to understanding the relationships between parents and children and children with significant needs. We pay attention to the stories and research that talk about the importance of one-on-one time and appropriate communication.
Thanks to a friend Tammy who is also familiar with the journey of being a sib of special needs, we read Views From Our Shoes together with the girls, and we did some journaling together the first year of Janneke's life - when we were all dealing with the shock of having two kids in the family with significant needs.
As a family, we laugh now at some of the thoughts Em and Soph journaled at that time - being so much younger. And yet, I am glad we were encouraged to give both girls a chance to articulate in their own way. I know we don't have to help Rachel and Janneke wrestle with the fact that they are different and delayed, but Em and Soph continue to process that.
It is not easy. It's more than just explaining to them that Rachel and Janneke might not get married and have families. It's also helping them unravel the complicated feelings that come with seeing their friends relate so freely and easily with their own families.
It's helping them verbalize the frustration that comes with acknowledging Pot family time has limitations - or means that we do things with three or four of us instead of all six.
It's explaining to Em and Soph when they overhear the question, "And when are you going to put Rachel and Janneke in a (group)home?"
And then we have to unpack words like retard. I can naively hope that by the time my kids are on the social network, people will stop using retarded jokes and special needs insults. It saddens and amazes me how good people can carelessly speak or type their words.
I don't want to worry about when or if Em and Soph will stop snuggling with their little sisters. I don't want to worry about tomorrow, about how resilient or compassionate my kids will be -or if they will resent the family they belong to.
I also want to let Em and Soph learn and process as they are right now. Both girls wish for peers who can understand their special needs family, but I don't want to throw on them the adult perspective - or my own grief. Nor do Em and Soph need us to place unnatural expectations on them.
I know that anxiety about tomorrow will only rob us of today's joy. We will persevere in savouring the moment. We will be thankful for the moments we can have with our family - with all six watching a movie, or with Em and Soph enjoying a ski day with Dad.
Choosing joy in this journey isn't about following a lovely yellow brick road. It's a difficult choice at all ages that doesn't necessarily promise an easier future. But we're committed to that Joy because we know God is faithful.
Peace to your homes.