Losing Joy

Today I was feeling nostalgic so I decided to go back to the blog and read old posts, starting from Februrary 07. I read all the way through until February 08.

And what struck me as I went on this journey to through time was – something went wrong. In the first posts starting in Feb 07, I mostly wrote about trips to the park, the zoo, playing in the pool, getting together with other parents. Life was good. Easy. Simple. Enjoyable.

I started comparing it to life now, and wondered, what happened? Life got so complicated. We lost a lot of our joy.

So I went back to read and try to trace the journey. And I did discover what happened. It was in Jan/Feb 08. Until that point, we were taking things easy, relaxing, giving Nathan time. We thought he had plenty of time to develop. Then, after a visit to NIH in Maryland and a visit to Rutgers in NJ which all revolved around Nathan’s disability and assesing his weaknesses, a firm resolve to “fix him” entered my mind.

I decided that I would prove all those people wrong and that we would find whatever it took to make Nathan develop. So I set out on a quest.

Unfortunately, it was a quest which zapped a lot of the joy from our lives. We went from having lots of fun, carefree moments, to being very stressed out and busy. Most of 08 for us was very stressed out and busy. We travelled a lot, went from therapy to therapy, looking for answers, newer better treatments.

And we did. We found a lot of answers, a lot of treatments, a lot of options. Too many. So it became difficult to find which way to go. SO we decided to go in all directions, and to do everything. It was stressful. Stressful for me, stressful for Nathan, stressful for Owen.

Now, in 09, I decided to integrate everything we learned and to make sure we did everything in a day that we wanted to do. So I made a new schedule that I posted a couple of days ago. A very very intense schedule.

But when I discussed that with our new doctor, Dr. Dituro, he said, no. Find time to relax. Give fun priority. Let him be a kid. I’ll get his body strong and healthy. You focus on strengthening his strengths. I’ll focus on his weakness.

Which brought me to a question I’ve been asking myself lately. So much of our effort goes towards strengthening Nathan’s weaknesses. But what about his strengths – cognition and social development? What if I focused on those instead?

In lieu of my post “2 much, not enough”, I’d already decided to focus more on ABR and drop a few therapies.

But now, having learned from my own experiences, I feel encouraged to look again. I want to make more time for fun. I want to make time for more social activities, like developmental classes at Gymboree. Maybe instead of focusing 100% of our energy on his physical development, we should spend 50% of our energy on physical development, and 50% on receptive language/cogntivive/social development.

It just feels like time to bring more joy into our lives. For the last couple of weeks we haven’t kept to any schedules and have done a lot of chilling and relaxing. Which is why Nathan has been so happy and laughing a lot. Maybe I should take my cue from him 🙂

So hopefully I will be posting about more fun things like visits to the park, gatherings with friends, and other such fun things.


  1. I love this post! I hope your family has a magical and super fun 2009. I think your heart and mind are in the right place!

  2. Wow. I am so impressed with the realization you have come to. You know that post I did on stuff I wish I knew when Max was younger? One of the things I left out, which you just reminded me of, is that I wish I had spent more time just having fun with him. The therapy and other options overwhelmed me, too. We also overscheduled ourselves. What I learned over the years is that Max has plenty of time to develop, and he will do it in his own timeframe. He needs to be like other kids and just enjoy himself. That will make life more enjoyable for not just Nathan but you, too. You are one smart mama!

  3. Administrator says

    Thanks Jessica. My 2009 is all about BALANCE. I hope we will find it!

    Ellen – I know what you mean! I wish there was a manual that came with our kids. I feel that I had to go through last year to arrive where we are today, I just wish I wasn’t so stubborn so I could listen to other people and learn lessons faster 🙂 You are so right about Max developing in his own timeframe, which he seems to be doing so well and amazing everyone. Thanks for reading and staying in touch!

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