Over dinner one night there was discussion about the vicissitudes of life with my Down syndrome son and his level of cooperation in our household comings and goings when my sister-in-law asked: “There hasn’t been that many times you’ve missed doing something you wanted to do though, has there?” Our answers overlapped in the air as I heard my husband reply “Not really,” while I was saying “Thousands”.
We laughed! Raising the same child in the same house has apparently yielded different experiences. When there is something that our Down syndrome son refuses to do, is too ill to do, or wouldn’t enjoy to the point of negatively impacting all participants, somebody has had to stay home. And although we make the decision one event at a time, I am usually that one who stays behind. So when she asked – I guess the number added up pretty quickly in my mind.
Divide and conquer . . .
To be clear, divide and conquer is a strategy that has worked for us, that’s why we could laugh about our separate answers. In our circumstance walking away isn’t abandoning, it’s supporting. It is so often the only way to get done what needs to be done. If not for the divide strategy, we would never have conquered the building of a diverse and interesting life for our other children, so it fulfills my prime directive!
The big things like camping trips I could list specifically but there are myriad other times that when looked at logically, made sense for him to go while I stayed. I suppose the one going out doesn’t notice the difference so much once the decision is made. The verdict doesn’t always take long for example at a party or a meeting where my husband and I can communicate quickly and then split off in opposite directions, each one knowing who is on the job for Joe till the next crossing of paths . . . for us this divergence represents a togetherness of purpose, if not actual togetherness.
As he walks away I might be thinking “Thanks for letting the big kids have this good time”, or “Thanks for taking Joey out of my earshot for a while”. “Thanks for giving me this minute to myself” is a sentiment often to be appreciated. It doesn’t mean I don’t want to be with him/them, but every mother of any child who can’t be left alone knows what a sustenance a little time can be. So whether my husband is spending time with our other children, attending an event alone, or entertaining Joey alone, the time we are apart can be a gift to me.
How might a dad feel . . .
When Joey was first diagnosed with Down syndrome 6 months before he was born, I remember the genetic counselor saying that having a handicapped child can be especially hard on dads. The reasons are complex: dread of not knowing what to do, distress over being different, anxiety for the child’s self-worth, fear that the child will not become independent, do things that might embarrass, or be seen as less than other’s children. She said these were all things to watch for and could have a destructive effect on the father’s ability to bond with the child. My husband was away on business during this meeting but I took it to heart and paid attention when the time came.
From the first moment one could have shouted from the rooftops “Not to worry!” – my husband’s attachment to our handicapped son has been a blessing to me. I can’t recall any specific events but I know that along with the countless times we have had to work separately in our days, there have also been thousands of times that I have been there to observe those two together. Behind my eyes is the whisper of the counselor’s caution and even if my husband noticed he wouldn’t know that my tearful smile is in gratitude for how far away we are from what she said might be possible. The love that my husband has for this son is not one bit different than he has for our other children. In caring for Joey, he does now and has always demonstrated the personification of the expression “all the feeling of a tender parent” (Book of Mormon, 1 Ne. 8:37). They have routines and a verbal shorthand that my son loves and which gives him a great part of his identity. Building a treehouse in the yard, sharing the Little League baseball team Joey’s been on for 15 years, or working the same puzzles for the umpteenth time, they do have a lot of fun and are great pals.
What’s in dad’s mind . . .
Playing a “get-to-know-you” game with a church youth group, my husband once drew the question “If you could hear what someone else is thinking for a day, who would you choose and why?” With all the people in human history as possibilities, he chose “Joey” as his answer. I don’t think I am clever enough to have thought of it but of course it is the perfect answer.
Even though we live in the same house and have the same children, our experiences are unique. Even though we are working toward the same goals, much of the time we take different paths. Though we’re not always in the same place at the same time, it is easy for me to say of him: “I know that you ‘know how to give good gifts unto your children’ (Luke 11:13).” I celebrate that in him – it is one of the greatest gifts he could ever give to me too.
Divide . . . doesn’t seem like a way to bring a family together, but it has worked that way for us!