What keeps you going

As the gag kept going, Deane could not contain himself.

Deane has watched the same Rush concert video after breakfast almost every day this summer. The whole family knows which are his favourite songs and the few he won’t watch. Our nine-year-old daughter can sing almost all the lyrics to the heavy metal tunes.

Like many developmentally delayed kids, Deane has certain things he likes and he likes those a lot. He will watch or do the same thing over and over and over again.

I feel guilty that Deane watched as much television as he did this summer. I know I should have been getting him out enjoying the great weather. But his physical limitations means getting him out and about is physically and emotionally demanding on us. When I did take away from the TV to go out on his adapted bike or practice in his power wheelchair, he was not happy about it.

Today, on the other hand, was one of those days when Deane’s pure enjoyment of simple things melts away the other frustrations. His favourite aunt (with apologies to his other five aunts!) came to visit us at the cottage. She brought Deane a portable white board and pen. Deane has never been a fan of art in any form, but she had him belly laughing at her drawings and actually attempting to draw his own pictures.

After a great afternoon out on the water, it was time to say goodbye. Deane, with my husband’s assistance, got into the driver’s seat of his aunt’s van with seat adjusted and seatbelt on. When his aunt came out to the van, she burst out laughing which started Deane laughing. As they continued this gag by asking if he was driving her home – leaving her husband behind – and actually starting the car (after ensuring it was in park), Deane could not contain himself. He was shaking with laughter. It was the happiest I had seen him in a long time.

These are the kind of moments that keep you going.



7 thoughts on “What keeps you going

  1. This melts my heart. I can hear and see Deane laughing as I read this. Aunt Patty is a very special lady!

    Posted by Ali | September 3, 2012, 12:45 am
  2. I can just hear Patty’s laughter in that story. What a wonderful summer memory to have 🙂

    Posted by liz | September 3, 2012, 11:01 am
  3. Excellent story! Love it.

    Posted by Ken Stowr | September 3, 2012, 9:26 pm
  4. This is so great Ijeoma … your blog is very beneficial to those not living with this, really great insight that helps the collective ‘we’ to understand, as we could never truly know what it must be like. I love Deane’s spirit and have so much respect for you and Mark for your positive outlook and ability to overcome the day-to-day frustrations. On a side note, can also appreciate Deane’s taste in music …. clearly influenced by his dad :o)

    Posted by Ron Guthrie | September 4, 2012, 11:46 am
  5. I knew it was Patty!!!!! Thanks for sharing the laughter in this post. Stories like this keep me going too.
    I have enjoyed your blog so much so far.

    Posted by beth | September 4, 2012, 4:38 pm
  6. Yes. Yes. Yes!

    Posted by Louise at BLOOM | September 5, 2012, 2:29 pm


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