Jul 2, 2012

Happiness Week 26

One of the purposes of my happiness project is to reprogram my mind to view things from a perspective of gratitude and to actively look for the good in life. I am grateful this week that our climate in this area is mild and that we live in an area of the world that is generally free from devastating events. Sure we'd enjoy some sun this "summer" but really things could be worse. There is always negative to be found, the challenge is to see the positive among the negative.

In addition to the photography portion of my Happiness Project I have personal goals. Each month I have a different area of focus for my Happiness Project. These are areas of my life that I feel could be better in one way or another. There is a saying by Albert Einstein: Insanity is doing the same thing over and over again and expecting different results.  Instead of doing the same thing I am looking for ways to make changes even if they are small. Sometimes it's the small things that drive us crazy and get in the way of our happiness.

June's area of focus for me was Ainsley. That might sound like a cop out, but really having a child with medical needs and special needs is incredibly demanding and yet there is always MORE I could be doing for her.  Before you poo-poo me and tell me I'm doing a great job, please understand it really is true. And this weighs heavily on my mind because her future depends on her ability to do certain things (like walk, talk and eat to name a few), and they will not happen magically by themselves like they do for most kids. It's not like cleaning out the garage, creating a meal plan or taking up yoga.  In this case I am quite fearful of the effects of procrastination. It is easy to have intentions to do certain things, but simply not get to them because life is busy. 

Normally I don't go into great detail about my personal goals but since this blog is about Ainsley I will share a little more with you this month. In part June was coincidentally the month of culmination of prior months planning so it seemed fitting that the month was dedicated to this purpose. With her surgery smack in the middle the month we were pretty much focused on her anyway. Here are some of the things we did:
  • Upgrade and reprogram her Nova 7 communication device
  • Start seeing a Physical Therapist
  • Resume Blenderized Diet & attempts at oral feeding
  • Review Airway Status with her local doctor
  • Schedule T&A surgery
  • Follow up with Cincinnati team (this is dragging on and on and OMG I'm ready to be DONE!)
  • Find a new SLP and start therapy for speech and eating.
  • Implement new stretches to get legs to straighten more for easier standing.
  • IEP meeting and evaluation in preparation for KINDERGARTEN.
  • DSHS annual review for waiver program and nursing support.
  • Get MyAirvo humidification system.
  • Formulate a home therapy activity plan
It's a huge relief to have her eyelid surgery behind us. Right now is an exciting time for Ainsley and I have great hope that we are going to see some exciting progress over the next few months. Of course we love Ainsley just the way she is, we just want to "maximize her potential" so she has the best life possible.

I hope you have a great week. It's the 27th week of the year which means it's officially half over. A crazy thought. Happy 4th of July to all my American readers! I hope you have a safe celebration!

Daily Happiness Photos - Week 26

06/25 A Quiet Night's Sleep
For over 5 years we have slept to the sound of a very LOUD air compressor that powers the humidification system for Ainsley's trach while she sleeps. Last year I heard about a new piece of equipment called the MyAirvo by Fisher & Paykel that delivers humidity without a compressor and is SILENT. When I first tried to get one I was told no. And no again. Persistance pays. Finally after much hoop jumping and many phone calls we got ours today and for the first time in 5 years I slept to the sound of SILENCE. (Except for
occasional equipment alarms but that is another issue.)

06/26 Staycation Surprise Bucket
This is the trick up my sleeve that (hopefully) makes up for the fact that we are having a "staycation" instead of a vacation this year. The fact that Steve is required to work 60 hours every week throughout the entire summer will make even a weekend camping difficult to pull off.  So a couple weeks ago I had the idea to put together a staycation bucket. I used some gift cards I had stashed to buy some cheap surprises. In addition we won this mini-amp/guitar/mic set at the Harley Davidson benefit for Seattle Children's Hospital last week. It was perfect since Adrian wants to learn to play guitar (like his dad) and Evie wants to sing (like Taylor Swift) and it was nice to be able to bid on something for the cause. Examples of items in the basket: PlayDoh, bubble wands, sidewalk chalk, a new DVD, Apples to Apples (I've been wanting that game for years), bubblegum (for a bubble-gum blowing contest), a puzzle etc.(you get the idea). I also put together a bucket list of other things I've been wanting to do with the kids. If you are curious to see the list click here and zoom in. It's not Hawaii or Florida but they are just as excited as if it was. (Not to ruin the "happy" part of this post I must warn you so you don't get mad at me if you try this. With this idea comes a lot of whining and arguing about what to do each day. Still it's marginally better than constantly hearing "I'm booorrrrreeed.")

06/27 A Fort Made of Blankets
Building a fort is magic. How else can a couple tables and blankets make such happiness?! Evie and Adrian have done this in the past but this time we made an improved fort (by pulling two tables together) that was big enough that they begged to sleep in it. For TWO nights. Ainsley has to be monitored while she sleeps so she couldn't be a part of that, but she loved it during the days. It makes me so happy to see the kids having such simple fun.

06/28 Time with Grandma
My mom invited the kids over to run the train set on her track (She has a model train track running throughout her backyard.). They picked strawberries out of her garden. After lunch we went to her garden plot at her church down the road. We got beet greens, rhubarb and 6 RASPBERRY PLANTS to take home to the new house.  I missed my raspberries.

06/29 Groceries
Ask any mom and I bet grocery shopping is not her favorite thing to do with her kids. It's near impossible when you have a disabled child. I've been using my nursing time for other things (like shopping for the staycation bucket and appointments for myself) and we ran out of milk 2 days ago. So after therapy I took all 3 kids to the grocery store. E&A pushed a second cart for the groceries that wouldn't fit in the cart with Ainsley. She loves to go shopping and help put the food up on the counter. I wish it was easier to take her. I am very happy to have groceries.

06/30 Getting Mom A Beer
I couldn't think what to call this one. We have a little mini-fridge in our TV room. Ainsley has learned a new trick and has decided it's fun to get me a beer. Maybe she's trying to tell me I need a beer. LOL. How can that not make me happy?! Well.....at least for now, until she figures out how to open them by herself with that opener.

07/01 Tea Parties
Another item from the bucket list. Having a tea party. It's just lunch + china + tea but it's "high tea" to the kids. It was even better because Steve was home and he's the one who is English. Since it was yard work day we were in our grubbies. What a funny sight we must have been. It's a fun way to celebrate their family heritage. P.S. It was Evie who insisted on the toothpicks in our tea sandwiches.

To view a slideshow of the entire Happiness Photo Project click here. Confused about what this is or why I'm doing it? Click here for an explanation of what it's all about.

1 comment:

  1. From a mom's perspective, love the idea of a staycation! At least you don't come home from vacation completely exhausted. :)

    You are an awesome mom and advocate for Ainsley. I appreciate all you have to do - and want to do to make sure she reaches her full potential. But, you also have a good sense of finding balance so that you, Ainsley and the rest of your family also take the time to stop and "smell the roses", so to speak.

    I'm loving your happiness project - can't believe we are half way through the year already. I might have to try this next year -- it's good for the soul to focus on the positive and find happiness in this life despite the challenges.

    Love ya,