Feb 13, 2012

Happiness Week 6

We perfectionists tend to think that if only X, Y or Z....then we will be happy. That somebody else has cracked the code. That it is possible to be happy all the time. Well it is....and it isn't. All human beings have negative emotions. Thinking that it is possible to experience happiness as a never ending stream of positive emotions will only set us up for disappointment. If you don't believe that then perhaps you might consider whether you too may suffer from some degree of perfectionism. I keep telling my son, Adrian who often has "bad days", that there is no such thing as a perfect day. There is a mantra that I taught him when he was 3 years old "When things don't go our way we don't let it spoil our whole day." When I really think about it I realize that he takes after me and maybe some other people in the family. The only way that it is possible for perfectionists, and I suppose all people, to be happy is give up the fantasy that we imagine exists much like a fairytale romance and accurately define what real happiness is.

What I am learning through my Happiness Project is that I am both happier and unhappier than I thought.  I have a good life and much to happy and thankful for. And yet....changing the way you think and your behaviours is hard work. And hard work isn't always fun even if it is rewarding....especially during the times when life doesn't just deal you happy circumstances and emotions, or when you are busy and under pressure. That's not to say I don't believe you can be happy when times are tough, just that it doesn't come naturally to everyone. Myself in particular. It's been a tiresome week and I'm glad it's over because I'm ready for a new one.

What Made Me Happy - Week 6

02/06 A Two Phone Conversation with a Friend
The truth is that having a medically complex kid means you are going to have some bad days. We saw craniofacial today. In a nutshell their conclusion is that the bone that was removed during Ainsley's second cranial reconstruction caused the muscles that control the eyelids to essentially become too long, that there is no real way to shorten them, that the occuloplastic surgeon who felt a brow lift might help was wrong and a Frontalis Sling is our only option. That surgery comes with risks and trade-offs. In reality we may have to consider that her current eye appearance is "as good as it gets" and that's heartbreaking. I've been trying to be realistic and yet have held out a small amount of hope that the original appearance of her eyes might be in some way restored to her.  We are nearing the point that we may need to accept things and move on like one must do after any loss. Some days it feels like no one understands. It was a crappy day and I was so happy when I got a nice e-mail from my friend Christy. I called her and we had a nice chat.....A two phone chat meaning after I exhausted the battery on one phone we talked until the battery in the second phone was low and her phone died. 

02/07 New Climbing Skills
She's so cute! I just love this picture. The hammock swing appears to have very positive effects. I think it has given Ainsley confidence in her ability to maintain her balance in situations that were scary to her, like climbing. Ainsley's been able to climb into a regular chair and on and off the couch for awhile. But getting in and out of her wheelchair by herself. No way! The good thing about boring doctor appointments when they keep you waiting for hours is that there is little to do. Since we had 2 appointments in the past week Ainsley's now mastered this skill, climbing in and out about 100 times. Now she's even taken to doing it "just for fun". I moved the chair onto the carpet but it still scares me to think of her falling. But she has to be allowed to take risks like any kid, if we want her to progress. Made me a nervous wreck during our appointments though, and it's hard enough to have a conversation about these things without worrying about her safety.

02/08 A Precise Point
I've been dying to see the new Saltillo Nova Chat 7 which was recently released. We had to reschedule the meeting with the rep due to snow, so I was extra happy when today finally came. I wanted to see if the small size (Ainsley currently uses an IPad with TouchChat HD) would be okay. It wasn't that long ago that we were working on teaching her to point. Back then we didn't think she would be able to swipe, and boy has she mastered that, getting into all kinds of trouble on her IPad. I was THRILLED that she was able to use the Nova 7. I want this device for her!  We have an appointment on 3/6 to start the process to get one.

02/09 A Cup of Tea and Bed
Some days are just hard and what makes me happiest is a cup of herbal tea and bed.

02/10 Ainsley's Birth Certificate
I spent the last week looking through my desk for the family birth certificates. They weren't in the desk or anywhere elseand I couldn't find them anywhere and I looked everywhere at least 3 times. I'm pretty organized so I was getting worried about where they might have gone in the move. Thankfully Steve finally remembered that we'd cleaned out his business file cabinet for personal use since the desk at the new house didn't have as much space. It was in the garage. What a relief! So I was able to register Ainsley for Kindergarten. Yep! You heard me right. We will have a transition meeting in the next month or so to discuss the classroom options.

02/11 Movie Night with Kisses
I was home late yesterday because I was out things for Evie's upcoming party. So we had "movie night" a day late and it felt so good to sit down and hang out together. I even found chocolate kisses from Christmas in the back of the pantry.

02/12 Creativity with Paper
It makes me very happy (and proud) to see the amazing creativity that Evie possesses. I've always given her access to art supplies. At times I felt I was drowning in half scribbled on sheets of paper and I really questioned this policy. As frustrating as it was at times I think it was worth it because Evie is able to create some amazing things, especially with paper. She is determined to win her class contest for the most creative Valentine Box. Her idea: a soda and french fries holding hands and gazing adoringly at each other. The cool thing is you can put Valentines in both pieces. Her friend called tonight to ask if we got our letter from the "Art School" so we ran to the mailbox in the dark. Sadly it looks like her friend will get in and Evie won't. Evie's lottery number is 77, meaning she's number 45 on the wait list. I wish I could say this made me happy. Having to leave earlier in the morning and carpool 30 minutes away wouldn't be fun, but I know it would be so good for Evie. All in all we could have got a much lower number so perhaps she will get in late, after the start of the school year. If they based entrance on ability and love of the arts she'd be a shoe-in.

Have a great week and Happy Valentine's Day! To view a slideshow of the entire Happiness Photo Project click here. For more about what this is all about click here.


  1. Wow, it's been a long time.
    Love this idea Susan, good for you.
    I actually went on my little neglected blog today and read a few older entries, I can't believe how far Gig has come, I also couldn't believe how far emotionally I have come.
    I will blog again soon....
    Ainsley looks so much bigger, and stronger. GO Ainsley! I can't believe the kiddos are going to be going to Kindergarten. Are you feeling anxious? I am a basket of nerves but refuse to let my mind go there...yet.
    I missed your calls today, Gig is sick. I should be home Wednesday in the day if that works for you.
    Off to
    All the love in the universe from me to you.

  2. Finding happiness as the parent of a child with complex medical and special needs is very difficult and it's taken me years to get where I can say that I have days where I am really happy. It is truly a journey. The most difficult thing for me is that in most things you read about happiness, they talk about difficult "periods" in our life and how to get through them. But, being the parent of a child with special needs is not a "period" in life. It will be the rest of our life. It's the chronic-ness of this life that makes finding happiness so difficult. You really learn to shorten the timeframe of your outlook - sometimes all you can focus on is one week, other times it's one day and sometimes, it's just one hour. You really learn to appreciate "moments" of happiness. This is a very unique journey we are on and I am so thankful for people like you Susan, and Christy, and all our cyber-friends who make us laugh, keep us sane and who truly help us find the moments of happiness in this life.

    That's really neat that you and Christy have connected over the phone. Someday, the three of us will get together in person - I just know it.

    Love your happiness project and love keeping up with you and your beautiful family. I'm sorry that Evie didn't get into the art school.


  3. I love this project. It really does make for some very informative, and interesting blog posts. Funny how they are about the "things" in life, but the meaning behind them, and the comfort they provide. I can only imagine how incredibly different this project would be for someone without our unique perspective on life.

    I am so glad that our awesome long chat made you happy! THAT makes me happy! And I agree with Ann - we must meet in person one day. MUST.

    That device looks really cool. That's very exciting! When will you find out if you can get it and when?

    I'm sorry about Evie not getting into the school. And as you already know, I'm especially sorry about Ainsley's craniofacial appointment. I still laugh to myself when I think about parts of our conversation. I'm going to have to write about it...

    Christy xo

  4. Just found your blog from Peyton and Julie's. Love meeting new trach Mamas AND blenderized diet Mamas. Changing over to a blenderized diet was one of the best decisions we've ever made.

    Tammy and Parker