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Wednesday, March 10, 2010

Wherever you go

...there you are. Even when it is not where you planned. My cousin Bev and I were pregnant at the same time and due in March, 1992. I had a miscarriage but she continued a healthy pregnancy and gave birth to a sweet little boy, Mark. I remember every year when Mark's birthday comes around, with a pinch of pain, remembering the baby I did not have then. I saw Bev shortly before Mark was born and shared joyfully in her expectations, honestly, and did not make mention of my pregnancy that had ended too early. As it turned out, I was pregnant already again when I saw Bev that day and was thrilled beyond imagining when Annika was born in August and even more thrilled that she turned out to be Annika. What a kid! That is always the thing about a miscarriage; the grief for what wasn't is almost completely swallowed up in gladness and delight about the child who was born, the daughter who, along with her sister, has grown up to completely own my heart. Back to Bev. And Mark. In the days after his birth, Bev and her husband, Tim, sent out a birth announcement that said something like this...... Imagine for a moment that you have planned a trip to France. You have made careful preparations, learned everything there is to know about France, even some of the language. You have drooled over photographs of the French countryside and the Eiffel Tower and the Louvre. You have picked out a spot on the Riviera for a few days of rich living and chosen a lovely chic hotel for your days in Paris. You dream about the fields of lavender and the rich food and fine wines. Oh, yes, you have it all set up, you are going to France. You have your tickets and a little bit of French currency and the perfect itinerary. You find it hard to concentrate on anything else, as the days count down... You pack your clothes, the special dress you got for an elegant evening, the chic touring outfit, and, of course, the shoes. The day arrives. You get to the airport early, in your excitement, find the proper queue, have your passport stamped as you leave the country, board the big Air France jet, settle in for a first glass of cabernet, some crusty bread, even, believe it or not, a little escargot. You squeeze your spouse's hand, lean your head on his shoulder, smile at each other like you've got a secret, and you've won the lottery. "Here we go!" You settle back, your dream is coming true. In a few short hours, you will land in France. Only you don't. You land in Bruges. Belgium. And there seems to be no question but this is where you get off, this is where you are going, where you will stay. This, not France, is your destination. Bruges is a lovely city too. Not Paris, mind you, but interesting, You don't know Flemish and you have no idea what to look for and you don't have any hotel reservations and no map and, really, you're completely flustered. "What do we do in Belgium?" This was the gist of Bev's letter, Bev's and Tim's, as they wrote to announce the birth of their son, Mark. Who was born with Down's Syndrome. Not what they were expecting. And, as they explained from the start, "this is not a bad place we've landed, just not the one we planned for." Not, quite frankly, what we envisioned, not what we imagined parenting would be like. Mark had a number of urgent health issues, as Downs' babies often do. He had several surgeries in his first years of life. His heart. A colostomy, a reversal of the colostomy. Some of his health issues were critical. It was an all-consuming process, to care for Mark. And so it has been now these 18 years. Mark is also graduating from high school in May. It is a season of "lasts" for Bev and Tim too. His last high school football season: Mark was a manager for the Grandview High School Varsity football team all four years at Grandview. That includes the year they won the state championship and Mark was down on the field at Invesco Field at Mile High, where the Broncos play, sharing in the excitement of that big day. He has a letter jacket and wears it with obvious pride. Individuals with Downs Syndrome generally live somewhere along a continuum of capabilities, capacities. Mark is a fine swimmer, and bowler, and does well in the Special Olympics where his parents so faithfully support and cheer him on. He doesn't do as well on cognitive skills. Bev told me last fall that their goal for him before graduation was that he be able to use a cell phone, even to text, so he might have a feeling of a bit of independence. He works at a Chik-Filet as the person who cleans up after you, if you left junk on your table, spilled sauce, forgot to throw out your napkins. Wouldn't it be cool if he could call when he was ready to come home? Bev wrote to me after my post last week about "lasts," about how different it is for her, for Tim, for Mark. Because in some ways, life will go on very much as it has. Mark cannot be left alone. He will be living at home. Despite catastrophic cuts in funding for 'special education,' they are hopeful Mark will be able to go on to a post-high school program that teaches more life skills and perhaps even simple job skills. Bev wrote, "We're having a last school year with Mark but we're on a different journey from your family. The positive is that we don't plan to send him off anytime soon and we have more time to enjoy him at home." It seems to me there were words to read between the lines. Poignant ones. I cried. It's been 18 years in "Belgium" for Bev and I'll be honest. It's not been easy. It is a very different way to be a parent. It is exhausting. The rewards look very different for them than for us. She and Tim have always been on a different journey from our family. It is with enormous feelings of admiration and respect that I write, as I often think, of my cousin Bev, her husband Tim, and their son, Mark. I can tell you that they are the most incredible parents I've ever encountered, much less known. Their patience, lovingkindness, their clever and effective way of giving Mark the boundaries he needs, the affirmation and opportunity he thrives on, the playfulness he delights in ---- well, I can't imagine anyone coming close. Mark's job for the football team was to run out on the field and collect the kicking 'tee' after kickoff's and he has done his job with careful dedication. But there was not a Friday night or Saturday afternoon that Tim wasn't with him on the sideline, helping him zone in on his moment, and sometimes reminding him to come back off the field. You wouldn't believe the gracious manner in which Tim interacts with his son. Well, I hope you do. And Bev, too. Sundays and Saturdays at the pool, at other special activities, at home. Their last's are quite the same only different from ours. Their future looks very different from ours. They will be staying on in 'Belgium,' a place they've found their way around, skillfully. They've found all the hot spots, the groovy, funky places, and the boring but necessary ones too. We sat together, Bev and I, in the bleachers when Grandview played Annika's school, Arapahoe, last fall. Tim was on the field with Mark, of course. I thought it was pretty cool that Mark was out there being a manager for his school's team while our daughter, Annika, was on the opposite side, being a manager for her's. The same only different. After the game ended (Grandview beat Arapahoe, badly), Mark and Annika came up to see us and to horse around like kids do. Annika had her letter jacket on. Mark had his letter jacket on, too.