Online dodgeball

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Laura got up with Timothy a few times last night.  He’s got a red, runny nose and is enduring a summer cold, allergies or possibly teething (we’re casting a wide net on this diagnosis).  When he started making noise at 7am this morning, our hope was to bring him into our bed and get him back to sleep.  But after a minute of feigned slumber, Timothy made it clear that he was more interested in beeping than sleeping, as he scanned the horizon in search of noses he could ‘beep’…

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Elisabeth finally received her student visa for India – the confusing process for which may foreshadow some of the government bureaucracy she’ll find over there.  She’ll leave toward the end of July.  In the meantime, she’s working hard to finish her high school credits by completing two online courses.  She’s taking online English and online gym.  Yes, ‘online gym’ is a real thing — I just can’t wait to see what online dodgeball looks like.

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Timothy uses sign language but it’s really his own version.  Just as there is Pig Latin or French Canadian, this is TRBL sign language.  Patting his stomach could mean anything from ‘please’ to ‘dog’ to ‘I love the way that scarf matches with your eyes’.  Needless to say, he’s attracting quite a following…

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I finally got around to watching the acclaimed silent movie, ‘The Artist’ (as a sidenote, I went with the family to see the movie when it was in the theaters awhile back, but Timothy’s first movie was shortened when we realized that the only thing more distracting than a baby in a normal movie is a baby adding the soundtrack to a silent movie).  Anyway, ‘The Artist’ was good, but I had heard so much praise for the movie that I had very high expectations, and after the movie I was disappointed.  On the other hand, years ago I saw a movie, ‘Barcelona’.  I had never heard of it before and I thought it was a hilarious movie.  Now, most people would agree that ‘The Artist’ is a much better movie than ‘Barcelona’, but I much preferred ‘Barcelona’ because I wasn’t clogged up with expectations – I could just enjoy the movie.

I think that expectations are a great tool for us, but I also think that we can really cloud up our enjoyment of a good thing by walking in with inflexible or unrealistic expectations (“my birthday or my high school reunion or my trip to Europe was fine, but just not quite what I expected”).  There’s nothing wrong with expectations, as long as we know when it’s time to let go of them and just enjoy the experience.  But that’s not easy.

Expectations have been one of the toughest things for me with Timothy, since there’s a much looser roadmap for kids with Down syndrome and some other disabilities, and so tangible progress in his development is hard to predict.  Given our two teenage daughters, we knew well when kids are supposed to walk and talk.  I know that there’s a wide range for when kids hit different milestones — but I still want our boy to walk and talk on time.  Unfortunately, that’s not the way things work with this deal.

Early on, a doctor told us that Timothy had strong legs and would be walking by fourteen months.  I grabbed onto the seeming certainty of his forecast, and I was disappointed when T didn’t walk by 14 months.  Now, realistically, that doctor was just giving us a wild guess, and if he had known that I would pin my hopes on it, he probably would have made a more conservative guess or maybe just asked me to sit down and relax.  Chalk it up as a good lesson.

I realize that years from now it won’t make any difference (other than to the aching backs of his aging mom and dad) whether Timothy walked when he was fourteen months or twenty four months or whenever.

And I know that, while I’ll always set goals and expectations, I can be a little more patient and flexible and sit in the moment.

So remembering that life doesn’t always happen according to your plan is one of the best lessons of the TRBL experiment.  And it applies to all of us, since we all have many curve balls thrown at us during our lives – ours just happens to have red hair.  We can certainly make our plans in stone, but it’s wiser to plan in pencil and be ready to erase and adjust.  And most of all, we all need to figure out how to enjoy and celebrate the whole ball of wax and not just the parts that we want or expect.

If we can do that, it’s quite a ride.

Still grateful and still learning,

The Lees

This entry was posted in Communication, Doctor, Down syndrome, Sleep, Too much advice and tagged , , , , . Bookmark the permalink.

4 Responses to Online dodgeball

  1. cursos del inem gratuitos says:

    I appreciate, lead to I discovered exactly what I used to be taking a
    look for. You have ended my 4 day long hunt! God Bless you man. Have a nice day.

    Bye

  2. Mary Gerry and Tom Lee says:

    This was spectacular, Jack! I even posted it on my FaceBook page. Thank God for your blogs or my page would be boring. We love you all. Mom and Dad

  3. coachmaggie says:

    India?! Where in India? For how long? To do what? How exciting! I hope Elizabeth has a great time. I spent some time in India with General Mills. The people are so gracious in India.

    • jackblee says:

      Hi Maggie,
      Elisabeth will be spending 10 months studying in Pune, India, which is about 100 miles southeast of Mumbai (which is like driving from Minneapolis to Eau Claire but without the construction on I-94). She’ll live with a family and is Facebook friends with her Indian mom. It’ll be quite an experience for her.
      Hope you’re having a good summer.
      Jack

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