Happiness Week 8

Happy Monday! I can't believe it's Monday again! I've been very busy with party planning but we're on the home stretch. Hopefully I survive. The fact that I'm doing this again proves that I'm crazy....just in case you ever doubted it.

What Made Me Happy - Week 8

02/20 Ainsley Put on Her Own Coat

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When you have a differently abled child it really is the small things that make you happy. Today I was in the kitchen and looked over to see Ainsley in her coat. Well actually it was Evie's coat that I pulled out of the garage and was going to wash. Ainsley decided she wanted to wear it and put it on all by herself. HUGE this is! I think this is the first time she has ever put on an article of clothing by herself, other than a hat (which is nearly too easy to count) or a pair of my underwear on her head. You know what I mean....appropriate and correctly placed clothing.

02/21 Soup

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I LOVE soup. I'm pretty good at cobbling together soups out of ingredients on hand (though this time I planned ahead). But for some reason I haven't been making a lot of soups lately. It was a blustery day and having a bean and vegetable soup and a crusty loaf of bread was perfect.

02/22 Curiosity

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Curiosity keeps us young and I love it for that reason. But I also love it that Ainsley is curious. That she notices when things are different, like in this case with paper shaped like a person oddly placed in our laundry room, and "asks" me "What's up with that?!" Of course she had to use her eyes and body language but I got the message loud and clear. 

02/23 Being Able to Chaperone

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I am very lucky to be a stay at home mom. I worked for the first year and a half that I was a mom but felt I was missing out so I left. Of course it's not all roses, being a SAHM is hard work, but it does give me the opportunity to do things like chaperone a field trip. In this case to the State Capitol Building with Evie. Of course there is one little issue......Thanks Sheryl for coming to watch Ainsley!

02/24 Learning Something New

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I'd heard of Sculpey, yes I had. I just had never worked with it. Nor have I ever tried to make beads. It is much harder that you would think to retain the shape and make the hole. But I am always up for a challenge and like to learn new things. After a lot of practice I figured out a technique. More about these beads later. 

02/25 Artistic Ability

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I am proud that my father is a painter. I have some ability to paint. And Evie loves to paint. I am very proud of her and it makes me very happy that something so cool "runs in the family".  

02/26 The Sound of a Recorder

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Hold on, hold on. Let me explain this one. I don't know if every grade school makes playing the recorder part of their curriculum but here in Washington they seem to. Evie learned to play the recorder at the old school and now it's Adrian's turn to learn. He has been so cute practicing "Hot Cross Buns" all the time. Ainsley is a little monkey. Monkey see, monkey do...you know? She found another recorder in the musical instruments and pulled it out. She actually was able to make a sound. We've tried all types of whistles as "therapy" with no success, with the trach she just hasn't been able to blow but today she DID! So this is one time when I LOVED the sound of a recorder and it made me very happy.

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Have a great week everybody! To view a slideshow of the entire Happiness Photo Project click here. For more about what this is all about click here.

Happiness Week 7

What Made Me Happy - Week 7

02/13 Adrian Home From School

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It's funny. Some days I get so excited when it's time for Adrian to come home on the school bus, the doorbell rings and I open the door to this adorable kid.  He always says "Hi Mommy." and gives me a hug. How lucky am I?!

02/14 Chinese Food on Valentine's Day

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Steve brought home Chinese food (my favorite) for Valentine's Day and we had a nice meal together as a family. It was so cute to see the kids trying to eat with chopsticks. Even Ainsley. She loves soy sauce and had a great time tasting Chinese. Then she put some of her chocolates in her mouth. It was great. Adrian's box of chocolates said "Love Stinks" and had a picture of a skunk which he got a real kick out of. Earlier in the day I had an appointment with an ENT. This time for me, not Ainsley. My ears check out fine, my hearing is good, there is no pressure in the eustachian tubes. All this is good....except then we don't have a reason for the constant dizziness that I've had for nearly 2 months. The doctor did determine that apparently I have a deviated septum and since I have a lot of sinus headaches he is sending me in for a CT of my sinuses on Tuesday.

02/15 Hallway Bowling

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My Happiness Project "area of focus" for the month of February is organization.  Just like "you can never be too thin" I think "you can never be too organized". My house looks pretty organized at first glance but there is always room for improvement, especially in the hidden areas like the cupboards. Since we moved in I found places for the kids' toys but I've been feeling it wasn't "working". The days have a way of going by rather quickly without me making as much progress as I'd like on my monthly goals, so I was glad to get some organizing to the garage and laundry room toy shelves done. As a result I found the foam bowling set and the missing 10th pin. It made me happy to see the kids having fun bowling in the hallway both because it was fun but also it is something for them to like about the new house(they still wish we lived in the other house). 

02/16 Good Hips and AFOs

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When I called to schedule Ainsley's orthopedic follow-up appointment I found out that the surgeon just up and left to take a high level position at another hospital in California.  Since he'd done a very complex hip and leg surgery on Ainsley I was very concerned, especially since Dr. S's notes and reports were always VERY brief. I think he kept a lot of information in his head. Today we had our appointment with the new doc and he was very nice and attentive. The great news is that Ainsley's hip x-rays look good. The reconstruction seems to have been a success and it is very unlikely that she will need any further hip surgery.  There is a pretty firm shelf and the hip is at a much better angle and the coverage over the femur is pretty good (though it could be a tiny bit wider). After 5 years Ainsley still isn't walking and though I'm rather anti-AFO for several reasons too complex to go into here without boring you I've decided it's worth a shot trying them again (these will be taller and firmer than the last ones). Although the new ortho doc agreed with the previous doc about them being unlikely to help he did agree to write a prescription. We agreed that it is worth trying (it's possible that having a more stable foot base will free her attention up to focus on balance which is the real problem) and of course if they don't help we don't have to use them. They were able to squeeze us in the same day for casting which I was happy about even though it made for a long exhausting day. Sadly after this picture of Ainsley picking out the style (butterflies) it went downhill in a hurry. She was etremely traumatized by the experience and I think the poor guy doing the casts was too. He probably needed a good stiff drink afterward. It was one of the harder things I've had to do with her, and that says a LOT. When we get the AFO's I'll have to write a post and elaborate.

02/17 De-cluttering the Garage

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After the yard sale last summer we had a lot of stuff left over cluttering up the garage. Steve and I planned to spend part of the long weekend gathering it all up and donating it to charity. There were a lot of the kids old clothes and I found the process of parting with them rather emotional. I did have to pull out a couple pairs of pajamas. I've got to make a trip to the consignment store and then I think I'll actually be able to get to my gardening cabinet so I can fertilize the garden. 

02/18 Spam Head

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It was Evie's 11th birthday today. Her birthday day wasn't too exciting because we have a lot of party planning to do for this upcoming "Percy Jackson Camp Half-Blood" sleep over party. In the evening we picked up a neighbor friend and all went to the Rainforest Cafe for dinner. Since there is always a very long wait we killed some time at the mall. It was weird to see Evie at the mall with a friend and I'm pretty sure it won't be long before she'll want to do that for fun. She was able to spend some birthday money. She decided on a purple dalmatian fedora which is cuter than it sounds. I love this photo! But I'm sure glad she didn't come home with the Spam hat.

02/19 Medusa Skeleton

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Somehow I've managed to get myself into a position of throwing elaborate parties for the kids. Some more than others, because Evie is relentlessly persistent.  After the Harry Potter Party I said NEVER again. But Evie insisted that this time she would do all the decorations and planning for the Percy Jackson Camp Half-Blood party and so I agreed when we found some cheap foam swords that we just couldn't pass up (and then later decided weren't good enough) but then we started adding ideas and now here I am again. I've been stressing over one particular aspect of the party, the full size Medusa pinata that I have to construct myself (nobody sells Medusa pinatas). Why-oh-why do I do this to myself?! So I was very happy today when Steve was able to execute my idea for the skeleton. After I finish this post I need to get busy making the body.

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Have a great week everybody! To view a slideshow of the entire Happiness Photo Project click here. For more about what this is all about click here.

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

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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

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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

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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

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Some days are just hard and what makes me happiest is a cup of herbal tea and bed.

02/10 Ainsley's Birth Certificate

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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

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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

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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.

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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.

Happiness Week 5

We had a long craniofacial appointment today to discuss surgical plans and a thousand other things. Since these Happiness Photo Project posts are supposed to be happy I'm not going to write about all that now. So stay tuned for a downer post. Ehh...who am I kidding. I doubt I'll have time for that anytime soon. Tomorrow I have a dental appointment for me and Wednesday an AAC meeting to preview the Nova 7 + Adrian has basketball practice, I should be getting a letter from the ENT for a referral to Cincinnati Children's and I'm hoping to get that and the last of the documentation for our Medicaid Preauthorization. I have a feeling I'm in for a busy week. 

What Made Me Happy - Week 5

 01/30 Feeding Progress
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Ainsley signed that she was hungry. I said, "Okay, go sit down," which she did, by herself. (Though I did have to push the chair in for her.) Then I brought her pureed pasta and tomato sauce and some vanilla milk. She ate some. Not the pasta, even though it was overcooked, but we're focusing on the happy things. She even pounded impatiently on the table while she waited, such a normal thing to do.

 01/31 Cardboard

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Finding cardboard for Evie's special birthday party decorations, and it only took 2 stops, that makes me happy. Crazy party planning is in my future. It's that time of year again.

02/01 Cardboard Box Play

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I love that kids love to play in cardboard boxes. This was Evie's doing and scheming but still it made me so happy to see how much fun they had together.

02/02 Shadow Puppets

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I was so glad I forced myself to stop what I was doing and step into the kids' tea party. Evie made an early Valentines celebration by candlelight(with my electric candle). We then sat on the bed and made shadow puppets. It's was just a few minutes but it made me feel less guilty for all the times I've been "too busy to play".

02/03 Winning the Silent Auction Basket

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Sometimes having a special child is difficult.  E&A's school had Family Movie Night. I would have loved to go, but the reality is that as thick as my skin has gotten over the years, it's hard to be in a room with hundreds of inquisitive children and parents. They don't know I can sense them staring even when I've not looking, and I can hear their whispers. Besides how it makes me feel, Ainsley can't sit still for that many hours so it's not very fun for whoever is on "Ainsley duty".  I think E&A had fun going with their Dad, and didn't miss me too much. They were certainly in good spirits when they came home after winning one of the Silent Auction Baskets. I was most excited about the director board on the front which you can probably buy somewhere for $10. But hey, the money supports the school. There is also a waterproof mini camcorder. I can't wait to see the movies the kids make.

02/04 Breakfast and Coffee

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Steve took Adrian to his 8:30 basketball game.  It was too early for bringing the whole family. Adrian's playing is improving and the coaches even said he was the best "defender" on the team. That really boosted Adrian's spirits and he kind of needed it. It's hard being a new player.  I was very happy that Steve brought me home coffee and breakfast muffin from Starbucks. Then we spent the day raking up the rest of the leaves and cleaning with a little break to celebrate cousin Emily's birthday.

02/05 Ainsley in the Play Kitchen

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My friend Barby and her family came over for Super Bowl Sunday, it's a good excuse to get together, have good food and drinks. It's always great seeing them. Her daughter is near the same age as Ainsley, and though they are at different developmental levels it made me so happy to see them playing at Ainsley's play kitchen in her bedroom.

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