Down syndrome and thankfulness -- my fear of writing a blog on this is that I will sound like PollyAnna, and while I do believe that grateful people are happier, live longer, get along better with others, etc, I am not a huge fan of PollyAnna. Her modes were a bit naive, trite, and predictable, and not entirely logical (at least not to me).
My experience with Down's was limited prior to giving birth to Ben, but I did have a neighbor who had a baby with Down's just before I left my parent's home. I remember him as a fairly placid baby, happy, content.
Most importantly, persons with Down syndrome are persons, so they have their ups and downs, just like the rest of us. The naive blissful happiness of eternal childhood, as I mentioned before, is a myth that the rest of us like to have, perhaps because it makes us feel better about the plight of persons with Down's if we think they are happy all the time. (And the trouble statistic is that teens and adults with Down's have a 10% incidence of developing autism and some 7% chance of developing depression --- both due to social isolation and a lack of control over or meaningful activities in their own lives).
But back to thankfulness, my son is a very positive person. He is cheerful and energetic every morning when he gets up. He is helpful with dishes, laundry, cooking, clean up. He is emphatically in tune with his surroundings--- in fact, I don't know a more consoling and empathizing person than him. He is outgoing and fun when we are out in the community, and he likes to greet everyone he meets, and is always ready to smile at anyone who gives him the time of day. And he is grateful for very little. A quick game of UNO, a donut, a pat on the back... anything that affords him contact with others.
I think what I am most thankful for is that he is not only thoughtful and considerate (I come home from a five minute drive dropping Kirsten off at the bus stop and he has made me tea and toast for breakfast) but that he is honest and lets me know when there is something he does not like. He is not so eager to please that he lets others bowl him over, or have others do things he thinks are wrong.
When he was born, a popular little story for new parents of children with Down's was 'Welcome to Holland', which has a little bit of PollyAnna in it.
http://www.our-kids.org/Archives/Holland.html
The gist of the story is that you were having a baby and you find out it's a baby with Down's... and that this experience is likened to you were going to Italy on vacation, but by mistake you end up in Holland. Holland is different-- different language, different food etc, You need to adjust. You have no choice. Italy is now out of the question.
The important 'lesson' from the story is that you can spend your days mourning your losses and never enjoy Holland, or you can adjust and make the most of it. And that is good and true, and for a new parent, who has never thought through these thoughts, *Welcome to Holland* can be an important first step in adjusting --- along with connecting with others who are also in 'Holland'.
But long term I find the issues more complex. There is a daily dying to self and dying to the reality that most other people enjoy with their 'normal kids', that the Holland analogy was never meant to answer or account for. It crops up in the little things, and some times in the big things, and quite often I find myself having a mini-mourn over another little hurdle that Down syndrome brought... and then I move on, accepting what is, celebrating what is fun, good, funny, or down right profound that parents of 'normal kids' would never enjoy or experience.
But Down's is more than Holland. Holland is a different culture and a different climate and language and so forth, compared to Italy. But Holland is not functioning with 50% less intellectual capacity, a slew of additional medical issues, along with the inability to take care of oneself or get a full-fledged participatory job in the job market.
Down's is Down's.
Analogies get one only so far, and then one has to look Down's straight in the face and realize that this is the life my child has been given, and while I would never be 'thankful' for the many Down'sian medical components, many of them life threatening, of that life (that tiny 3rd pesky chromosome on pair 21), I am thankful for my child, AND for precisely who he is.
If it were not for Down's, he would not be who he is. And so in that sense, because I know this person, and this is who that person is, I am thankful that he has Downs or he would be someone else. And since I do not wish him in any way to go away or not be there. I am thankful for precisely who he is and how he adds to my life and to the lives of all that I love.
And now it is time for him and me to play a round of iPad bowling before going to bed.
Tomorrow is Thanksgiving, and there is nobody more excited about holidays and birthdays than Ben. He will be by my side cooking the turkey, the gravy, the stuffing, and all. :)
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