Dec 31, 2012

Happiness Week 52

Wow! Wow! Wow! 2012 is over and so is my Happiness and Photo Project.

Someone recently asked me if the photo project was my original idea. Actually, I thought it was when I came up with the idea last year. Click here or here to read my first posts. Since then I found people have been doing 365 projects for several years so in fact I'm a little late, as always. I discovered that there are even websites dedicated to the concept that allow people to share their photos, like this one, so if the idea of a 365 project is intriguing to you then you might want to check that out.

I'm sure people have a lot of different reasons for starting a 365 project but probably the one thing they have in common is a love of photography and a desire to expand their photography skills. I had high hopes of getting out on location and shooting for hours. In reality my life is too busy to do that on all but the rarest of occasions and I'm not very good about taking time for myself unless it is "productive". Though, I knew when I started this project that I would probably have a lot of days represented with pretty average snapshots, since my intention was not just about photography but to look for happy moments among the ordinary days and to practice gratitude. I think my photography skills improved some but not as much as I'd have liked. I certainly spent a lot more time shooting using manual settings and experimenting than I ever would have. 

It turned out that after blogging about my days I didn't have the energy to go into greater detail with additional blog posts unless something really big was happening. From that standpoint, I'll be relieved to put this project behind me and get back to regular blogging minus the happy perspective, because this life as a special needs parent is a challenge and being honest about that is more true to my authentic self even if I am attempting to live a happier life. For those of you who have struggled with your own happiness in 2012, thank you for tolerating my weekly posts I'm sure it was annoying at times.

When I started this happiness project I starting paying attention and talking to people and what I hear is that we all have areas that we struggle. I do believe there are a great many people who feel they should/could be happier than they are. I believe it is the human condition but that there is hope. For every person, no matter their circumstances, life could surely be better and it surely could be worse. There are many facets to living a "happy life".  It is not a simple thing so I won't go into it deeper here but do recommend reading the book that inspired my project even if you don't intent to embark on any kind of crazy project. At least consider checking it out from your local library. It's an easy read.

The second portion of my project was to record my days in a Happiness Journal. Boy was it hard for me to stick to the happy moments and not record the bad.  I think my whole life I've been hoping  the normal irritations of life would go away and voila a happy day would be revealed.  You know the kind of imaginary day when you are in a good mood the entire day, no one cuts you off in traffic, you are able to do what you set out to do, your husband is helpful the whole day and you aren't annoyed that you have to stop what you are doing to make dinner or sooth children's tempers, or perform some other list of random chores. I'm finally realizing there is no such day and life truly is about enjoying the little things.

There is an appropriate saying on the cover page for month of December in my journal which can be applied to the search for happiness and the expectation of finding it.
"If I lose my direction, I have to look for the North Star, and I go to the north. That does not mean I expect to arrive at the North Star. I just want to go in that direction." -Thich Nhat Hanh 
It may not be possible to "arrive at happiness", but that doesn't mean we shouldn't strive to go that direction. We will get closer than if we had continued traveling aimlessly.

Stay tuned for my final compilation of all 365 photos to be revealed soon. If you can't wait, click here to see the album.

Daily Happiness Photos - Week 52
12/24 Candlelight
There is nothing as beautiful as candlelight.

12/25 Not Hosting Christmas Dinner
This year I didn't host a single Christmas event and that made me beyond happy. Steve's Dad and wife do such an amazing job serving a salad, then soup, and then a full prime rib dinner. More appetizers and desserts than you've ever seen. English crackers for all. It's always a wonderful time.
12/26 Incense
I've always loved to burn incense. (Though now I have to do it when Ainsley isn't around since smoke is bad for people with trachs.) It smells wonderful. A couple months ago I bought myself a foo dog incense burner at an antique store. I was so excited to finally open it and see what it looked like with incense smoke coming out its mouth. It didn't disappoint. Now I've got another excuse to burn incense.

12/27 1st Casserole
This is the second piece of Italian terracotta I bought myself for Christmas. I'm intending to bake casseroles this year. My first dish: Joanne's cheesy potato casserole. It was delicious so it looks like we'll be adding it to our recipe repertoire. With ham on the side it was like Christmas dinner all over again.  

12/28 Father Son Time
It's been great to have Steve around during the holidays. Evie had a friend over to stay the night so Steve played the Pokemon card game with Adrian. Later they played Risk. I love that Steve takes the time to play with Adrian. It sure makes Adrian happy and I love that boy so much, it makes me really happy to see him so happy. 

12/29 Sleep Overs
Maybe because I never had them as a child, I love it when my kids have sleep overs. I love seeing my kids so happy and getting to spy on them a bit. Both Evie and Adrian had a friend sleep over during Christmas break. I love that they all went outside to swing on the swing set. Lucky kids.
12/30 Photo Frame Project
I started this photo frame project earlier this year.  Finding my favorite 50 pictures among 30,000 was like looking for the proverbial needles in a haystack. It was quite a process but I got it done before the end of the year. I am SO happy to finally have photos up where they will be seen.
12/31 Family Time


Having family time together in the days after Christmas is the best part of the season I think. It's been especially nice this year since Steve's been working so much. We are enjoying the tribute to Dick Clark and looking forward to Taylor Swift performing and toasting to the new year at midnight. Hopefully there will be a lot of family time for us in 2013.
Happy NEW YEAR everyone!!! May 2013 bring you all much happiness!

Dec 24, 2012

Happiness Week 51

Good grief, can it really be that I'm posting the 51st week of my Happiness Photos?!! I just can't believe there is only 1 week to go. Nor can I believe I didn't abandon this project somewhere along the way. I'm much better at starting projects than finishing them.

When I conceived of this project I imagined going out in the world with my camera and taking amazing shots of all kinds of things, especially landscapes. It seldom happened like that. The reality is that my life is busy and very much revolves around my home and children. At no greater time is this true than during the holidays. As the final days of 2012 tick by, busily filled with Christmas preparations, clearly my opportunity for creative photography has passed. My remaining shots are likely to simply be snapshots of these busy days, but perhaps in the end they have just as much value for the ordinary days they represent. Life is made up of a lot of ordinary moments with a few extraordinary ones scattered about.

I think I will break with tradition and post my final post on Tuesday instead of Monday next week so that I can include the last photo of 2012. I will also compile my photos into a final project that will be revealed in 2013.

I wish you all a Very Merry Christmas and a Joyous New Year's Eve. May 2013 bring us all peace, joy and happiness. XOXO - Susan

Daily Happiness Photos - Week 51
12/17 Not Having X-Ray Vision
Because there are a lot of times when that having x-ray vision would be bad. And it would spoil surprises like this one when I went to get a pair of socks and discovered the treats Ainsley had hidden for me: cookies, candies and coins from her play kitchen. I love that girl and all her mischievous ways. She makes me smile when I least expect it. I wish I knew what she was thinking.
12/18 Gifts for Our Village
They say it takes a village to raise a child and boy is that especially true for special needs kids. We have a lot of people that I wanted to thank with a small gift: Ainsley's teacher, aide, her school therapists, her bus driver, van driver, nurses and outside therapists. With Evie & Adrian's too it was 18 people. (That doesn't include family and friends.)  My special secret is Smith's RoseBud Salve. It's awesome to keep in your car and rub into your cuticles and nails while you're at a long red light. You can also use it on your lips. For something that's been made since 1892 and has a cult following the tins turned out to be surprisingly difficult to find (mine's lasted years). But I was able to find them at the last minute and made cute manicure kits(no I didn't make the bags). I was so relieved when it was done and all the gifts went off to school with the kids. 

12/19 Sweet Friends & Treats
The kids are officially on break. Ainsley stayed home with her nurse while I ran errands with Evie and Adrian during the day. I had plans with my friend Mel, but Steve had to work late so she brought pizzas, wine and the most adorable sweet treats from PCC so I didn't have to cook and we could chat while the kids watched a Christmas show.  It was very sweet of her.

12/20 Gingerbread Cottages
I think we have a few too many family traditions. I was going to skip Gingerbread Houses this year but the kids love it so much. I saw Martha Stewart's video on Graham Cracker "Gingerbread Cottages" (no baking) and thought maybe. Then when I saw a squirt can of icing so I decided try it.  We already had tons of candy and I'd bought Gingerbread Peeps so it would be easy-peasy, right? Wrong. Of course we ran out of icing (making the royal icing and putting it in piping bags is the part I hate the most).  What should have been super easy took over 6 hours from setup to cleanup (sprinkles everywhere). But live and learn. Each year I learn what not to do. They sure turned out cute though. The tent is Ainsley's. Adrian's is the colorful one in back. The one with the girl in a skirt and the Vanilla Toosie Roll mailbox is, of course, Evie's.

12/21 Polar Express Hot Chocolate Scene
We watch the Polar Express every year. The hot chocolate scene is our favorite. It's so fun.

12/22 The First Gift of Christmas
Due to my family situation we celebrate Christmas 4 times each season. Today the kids opened their first gift of the season which means Christmas is here. 
12/23 Making Fun
Today I loved seeing that my kids can make their own fun when called upon to do so. Without TV, electronic devices or fancy toys. They played hand games, gave horsey rides at Grandma S's and fed Grandma J's birds peanuts and played with a ring on a string and hook in her garage for hours.


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.

Dec 22, 2012

Merry Christmas!

 The month of December has been a whirlwind. I wish I'd had time to post photos earlier. I've run out of photo storage again, so I'm getting used to doing it in a new way which makes it a little harder to post. So I'm trying collages made with my scrapbooking software. I hope it works more easily and that I'll have more photos for you soon. 
Today we are off to Christmas Celebration #1 of 4. Ready. Set. Here we GO!
I hope you have a lovely holiday.
We squeezed in a trip to the Red-Wood Tree Farm which luckily for us is just down the road.  It's a destination, people come from all over. They are so friendly and helpful. Not to mention they have beautiful trees. As a bonus they give out free hot chocolate and candy canes. It doesn't get better than that.  The paths are lined with broken glass that the kids think are treasures. They found a few giant chunks. Adrian found a tree branch that looked like an umbrella. We (Adrian will take credit.) found the smallest Christmas tree in the world. And the perfect tree for our house (of course not in the U-cuts, they are too small.)  that wasn't too big or too small. 

We also had a fabulous time at my friend Darcy's Santa Brunch. She does such a lovely job. If you need a realtor look her up. Maybe you'll get an invitation next year. We got there after the first wave and the kids were hungry so we sat down before visiting Santa. Ainsley was so cute, as we sat down she clearly saw Santa and was entranced. As we ate our sausage and blintzes and other treats she kept waving. He would jingle his bells for her. Over and over.  It was the sweetest thing.

Dec 17, 2012

Happiness Week 50

Like me, I imagine your week started off ordinarily enough. Perhaps you were preoccupied with Christmas preparations. Perhaps you were busy at work. It seemed like an ordinary enough week.... until Friday morning. Steve planned to go in to work late because Taylor Swift tickets went on sale at 10:00. As we logged on to buy tickets we were horrified to see the headlines about the Sandy Hook shooting(I don't like that M word). We had a few minutes to attempt to digest the news before we had to scramble for the countdown. Ticketmaster, who sells the tickets, was a disaster. At 10 o'clock on the dot their on-line system found ZERO tickets for sale. How they could possibly be sold out the moment they went on sale?!!! It made no sense. We tried 4, 3, 2 tickets. Nothing worked. I got through on the phone and as I was confirming the purchase of 4 crappy tickets in section 16 B their system had technical difficulties, disconnected me and I lost them. So then Steve called on his cell phone while I called back on the home phone and at the same time kept trying the on-line sales system over and over again. All they had left was two tickets four seats apart. For something that should have been so easy, it wasn't. An hour later the ticket ordeal was over, Steve left for work but I kept seeing the minute by minute updates about Sandy Hook. I felt sick. I was pretty much a basket case for the rest of the day.  My heart is absolutely broken for the parents of those children. I am afraid for them and all of the children who survived about how they will find the strength and courage to go on.  I think even the rest of us will be forever changed. Somehow I wish we could just press pause. It feels wrong to do ordinary things at such a time and yet there is no way to stop life from moving forward.

It is with a sad heart that I post my pictures this week.

Daily Happiness Photos - Week 50
12/10 Using Stuff Up
Have you heard that Americans throw away 40% of their food? That percentage seems a bit high, but none-the-less it makes you think. We do eat our leftovers but sometimes I do find myself getting busy and not using things up before they go bad. I hate that. It seems so....well, wasteful. I've been trying to be better and when I see I've got an ingredient I try to plan a meal that uses it. I also have been trying to use up my dry foods before I buy more. Tonight's dinner used half and half that would have gone bad, a big bag of macaroni I've had for awhile, garlic crouton crumbs for topping (seriously so good) and Dubliner cheese (which rarely goes bad since it's so delicious). With a pear and Spring mix salad it was perfect comfort food for a cold winter night.
12/11 My Favorite Christmas Ornament
If you came to my house and saw all the Christmas decorations and festivities you might not believe it, but in all honesty this ornament is my favorite. There, I admitted it. Okay, if the house was burning down and I could only pick one ornament to save this probably wouldn't be it. But it is my favorite to hang on the tree. Especially when I really just want to go to bed. I must be a little happier this year because I didn't place it prominently smack in the front and center.

12/12 The Finished Christmas Tree
I've been collecting ornaments since I was a teenager. My mom gave me a number of hers. Some are made from the painted wood nursery rhyme mobile that was above my crib. Some are 1950's glass balls. A few are from the turn of the century. I have a jointed celluloid Kewpie doll that was on the tree when my grandfather was a boy. Steve and I have collected an ornament or two each year for the 20+ years we've been a couple. Others are special to the kids. We have a LOT of ornaments and it takes a few days to trim the tree. I was very happy when we finished and the kids could get to bed.  

12/13 The Swaperoo
The kids ask first before they open the advent calendar each day. The thing I love about our advent calendar is that that the boxes are drawers that I fill myself, so if I change my mind I can swap out the contents at the last minute. At the end of a long tiring day we were supposed to make paper snowflakes. Instead I pulled the swaperoo and put in a new scroll: watch Christmas video (kids choice Santa Claus Is Comin' to Town) and eat gummy Rudolph noses.  Look for them at the store, they're delicious. I think we all enjoyed ourselves far more than we would have making snowflakes.

12/14 The Kids Home After School
Like (almost) every other parent in America I was so grateful to hug and love on my children when they got home from school today.

12/15 Oster Speed Lines
None of the kids have had a salon cut, ever. It saves a lot of money but not a lot of time. After 9 years of cutting Adrian's hair my clippers needed replacement. They weren't great clippers in the first place but now were pulling his hair making the process even less desirable.  After a little research I ordered these but they weren't due to arrive until next week. All 3 kids needed a cut for Santa photos, and just as I was about to get started with the first cut the doorbell rang and there were my lovely new Oster Speed Lines. I love their vintage style.

12/16 The Nutcracker Live
Unbelievably I'd never taken Evie to the Nutcracker. She's loved ballet since she was 2. We'd watched it on DVD many times but never seen a live performance. I think the fact that Ainsley came along around about the time Evie was old enough to go was a big part of it. That, and sadly the holidays are often a busy time at work for Steve. One of Evie's BFF's dances at Cornish Prep and we were able to get last minute tickets to the sold out show. Evie got to watch her friend perform and sit next to another of her BFF's. We held hands. It was a really special night.

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.

Dec 10, 2012

Happiness Week 49

It's hard for me to believe that there are only 21 days left of 2012. Wow. That's all I can think of to say.  I have little on my mind but getting ready for Christmas. I hope you have a fabulous week!

Daily Happiness Photos - Week 49
12/03 A Wild Goose Chase
As I drove across the valley on this gray day to meet Evie's bus at the house, I spied a gaggle of geese in a field. "Evie, do you want to go somewhere real quick I asked?" I asked her, unwilling to answer her questions of where and why until she committed. I grabbed my camera and off we went on an adventure, a wild goose chase, shooting pictures from the car. Okay, so I'm taking liberties with the expression, we didn't actually get close enough to try to catch them but it was fun hunting for a safe place to try to snap some pictures (it's a busy 45mph road) before I had to meet the nurse and Ainsley back at the house. We felt like the paparazzi. There were hundreds of them(the specks on the green), and I so badly wanted to see them take flight as a group.

12/04 Pomegranate
They are so beautiful and fun to eat. They may provide many health benefits. We should all eat and enjoy them more often.

12/05 Organized Christmas Printables
I was being rather self-congratulatory that I was getting prepared Christmas much earlier this year. Then I found this website and was rather aghast to find there are people who have been on a 3 month plan. I'm going at my own pace, one holiday at a time, but I did find all kinds of cool FREE printable forms to help get myself organized. I wish I'd found this website years ago.  

12/06 Friendly Cardinal
I love this friendly little cardinal and decided to place him in my entry way this year(after replacing his dead batteries). He tweets and shakes his tail every time you walk by. He makes me smile.
12/07 Letters to Santa
I loved Adrian's letter to Santa this year! How refreshing.

12/08 A Real Party Like the Old Days
As we've grown older there are few raging parties these days but my friends Steve and Wendy still throw one every year. We arranged for "a sitter" (my sister Sheryl provides respite for us) so we could go. I'm glad we did. It was so fun and I had the perfect opportunity to regift these lovely earrings (metallic plastic flowers in a Tiffany's box) for their "Tacky White Elephant Gift Exchange". They actually looked quite nice on the lovely lady shown above and the irony was that she knew Kay, the quirky friend who gave the earrings to me at my wedding shower. They'd been passed around the group so it was high time to get them back in circulation. The much coveted mariachi lamp was stolen from me, instead we went home with a couple of used movies (Bill and Ted's Excellent Adventure and A Guide to Better Sex). You can imagine how thrilled I was about that.

12/09 Hair of the Dog
Today was tree trimming day (I've got the whole month planned out for the advent calendar with lots of days of just candy. Those are the best days. We went to the tree farm yesterday, perhaps I'll post photos later.), but Evie had to build a 3D model of a plant cell (she did a post sized watercolor of an animal cell yesterday). Of course that took nearly all day. It was late when we got to trimming and by that time I really just wanted to sit on the couch. But after a little "peppermint snow cone"(my own concoction) I was feeling pretty good. We have too many ornaments for too small a tree so after several hours we are only half done so the kids whined and pleaded to stay up but I made them go to bed.

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.

Dec 3, 2012

Happiness Week 48

As a stay-at-home-mom my life obviously revolves around my children. I chose to leave my job as the accounting manager for a high-end general contractor when my oldest child was 1 1/2 because it was what I wanted.....that is true. I know without a doubt that raising my children is the best, most important thing I will ever do. I want to be at home. But I'm not living the life of an average SAHM because of the added responsibilities that come with a medically complex special needs child. I have more thoughts to share on the subject that I will save for another time.

Steve is headed into another busy work period (with a new company) which I know from previous experience will make the holiday season stressful. So this week we did what we could to try to get a head start and (hopefully) make the season more enjoyable (for me, it seems everyone else has been enjoying it just fine).  We discussed getting an artificial tree but in the end the family decision was not to. Otherwise we are decorated. Lights are on the house. I even bought some presents and Steve started doing some wrapping. Wrapped presents on Dec. 2nd?! THAT is something new! We are determined that THIS is the year we won't be up until 4am wrapping presents (like we say every year, for real).

I hope you have a good week whatever you are up to and that you are able to find your own happy moments amid the daily stuff of life.  Here are this weeks pictures. Enjoy it while it lasts. Only 4 more weeks to go.

Daily Happiness Photos - Week 48
11/26 Two Buck Chuck
I've been an avid Trader Joe's shopper for years and yet somehow I'd never tried the infamous "Two Buck Chuck" (Trader Joe's own label of wines). Finally I did and I agree it's pretty good "everyday wine" especially for the unbelievably low price of $2.49.  Let the wine floweth.
11/27 The Idea of Prayer
What the heck, prayer can't hurt. I also still like to wish upon a star. Honestly I think they are both about as effective, but I will pray if someone asks me too. Truly, I even hope it will work even when I'm doubtful.  There is a special mom of 2 named Tricia with Cystic Fibrosis whose husband is asking for prayers, people all over the world are praying for her. She needs a second lung transplant and was removed from the transplant list due to fragile health. Please pray for Tricia that she is able to get on the transplant list right away. It can't hurt and I really hope it works.

11/28 Getting an Early Start
I have a confession....I'm a procrastinator. Or a horrible time manager. I often think I have more time than I do. I'm trying so hard to be better. Especially over the holidays which really should be joyful, not stressful. I'm sure many of you have had your Christmas cards for months but not me. Having Christmas stamps in November, well that is kind of a miracle. 

11/29 Poop
We've been working on toileting for yyyyyearrrrs. Ainsley's been doing pretty well. If we take her (she needs total assistance), she'll go. Except for poo. I remind her to tell me and then she goes and hides until it's too late. But today she signed "potty" so I took her and she went. It gives me hope that some day we will be able to get her out of diapers (though she will still need a lot of help in the bathroom.) If she goes I do the "potty dance" which she thinks is the funniest thing in the world. I really hope seeing me make a fool of myself will motivate her.

11/30 Blogging
It may seem like a weird thing to share intimate details of your life with the world. Once upon a time I didn't understand why people did it. I started this blog as a way of sharing medical news with family and friends back in 2008. In addition to that it's also been a great outlet because I like to write.  Having a child with special needs is isolating. Blogs are a great way for people to learn about each other.  I often hear from people who say they've found my blog to be helpful, inspirational or informative (Seriously, how many blogs have so many medical topics covered in one place?!). If I've helped even a handful of people by sharing bits of our journey then I am happy. 
12/1 Good Role Models for Girls
I'm so thankful that Evie (and her friends) have such a great role model as Taylor Swift (instead of a few others which shall remain unnamed). Though I don't necessarily want Evie to play the guitar until her fingers bleed like Taylor did at her age. She has inspired Evie to start writing songs and learn to play guitar (she got one when she was 7) because she thinks if Taylor was writing songs at age 12, so can she. She had a friend stay the night and there was a Taylor Swift special on TV. How lucky is that?! Oh to be 11 again with unlimited possibilities before you.

12/02 Early Decorating for Christmas
We got an earlier start decorating this year, hoping to reduce some of the holiday stress since Steve will be working a lot of hours again this holiday season. We need a tree but the rest is done. I especially love decorating my entryway for each season. I am pretty proud that as crazy as our life can be that we've managed to have the kids' photo taken with Santa every year (even the year Ainsley was born and came home from the hospital 2 days earlier). Last year I took the picture myself (at my friend Darcy's Santa's Brunch) and it's my favorite one. It's so fun to see how the kids have changed from year to year.


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.

Nov 30, 2012

50 Reasons Why

There have been a number of instances over the past 6 years when I've tried to explain to a friend, neighbor, family member or medical professional what is different about my life and felt like the person I was talking to really didn't understand what is so different, stressful or demanding about it. I'm tired of saying it so I'm putting it in writing. This list is for all those people including my husband since he recently asked me the unbelievable question "How is our life any different from anybody elses?" I guess he's so used to it he can't even see it anymore even though he is in the thick of it with me and does some of this stuff regularly.

Let's see....on top of the normal things everyone has: cooking, cleaning, laundry, normal child cares and parenting issues, homework,  shuttling kids to activities and sports, making sure the kids have clothes (if only they would stop growing), preparing for holidays and birthdays, bill paying, maintaining the yard and house and extreme work schedules (he does work far more hours than the average person not to mention his sound job hobby over the years ) and normal life stresses that everybody has (yes we have those things too) there are these 50 things:
  1. Suctioning and wiping up trach snot (in addition to nose snot) I'm tired of being a human Kleenex.
  2. Carrying an "emergency bag" everywhere we go outside the home AND from room to room when we are at home. (ie. suction machine with spare trachs and supplies) It's like a ball and chain that's noisy and stinks.
  3. Having to help her on and off the toilet many times a day and wipe. Plus diapering. This takes time and is unpleasant. Duh! That's why parents hate diapers and potty training and look forward to the day their child can do it themselves. Just in case it isn't obvious it gets harder the bigger the child is. (Normally by age 4).
  4. Lifting - Her and the wheelchair in and out of a car. In and out of bed. On and off the toilet. My back hurts
  5. Lack of freedom. Not being able to go anywhere (with her) easily or quickly because a) she cannot walk or even stand without support b) trach/g-tube/diapering stuff that has to be brought along.
  6. Having to explain to people that a disabled child DOES qualify for handicap parking.
  7. Hours and hours of spoon feeding and other oral motor work (past age 1 year).
  8. Tube feeding 5 times a day (2 are water boluses).
  9. Preparing special foods.
  10. Washing feeding equipment (syringe, extension set, blender, spoons, oral motor tools etc).
  11. Dressing and undressing in the morning and for bed (past age 2).
  12. Put on orthotics and shoes (past age 3).
  13. Years of doing leg stretches to alleviate tightness from cast and irritation from scar tissue.
  14. Working with her on balance, standing and walking.
  15. Bathing (past age 4) being mindful not to get water into lungs.
  16. Brushing/fixing hair (past age 4).
  17. Brushing your child's teeth (past age 3.)
  18. Time spent programming electronic communication device (or other communication tools).
  19. Learn, teach and use sign language.
  20. Constantly monitoring valve/cap use to ensure child has a "voice" plus encouraging use of "voice" (because she can remove it).Working daily on use of communication tools (oral, sign & device). Not being able to communicate with your child is difficult, sad, and causes a lot of lost learning opportunities.
  21. Wiping post-surgical crust out of eyes daily (still) & cleaning her face.
  22. Always being stared at when you are out in public and having to answer strangers' questions.
  23. The pain of knowing your child can't blend in and that some people will never see her value as a person.
  24. Worrying about your child's future (who will provide care if you can't, what will her life be like etc.) and all kinds of other things. There are a LOT of reasons for emotional stress.
  25. Monthly order of medical supplies and diapers + putting it all away and figuring out where to put all the "extra stuff" without it taking over her room and the house. Dealing with mix ups with supply orders.
  26. Managing a nursing staff. It is a bit like having part time employees.
  27. Sterilizing medical suction equipment, speaking valves and caps.
  28. Replace equipment parts (tubing, chambers, water bags etc.)
  29. Financial stress - even with Ainsley being on a waiver there have been many times we're worried about reaching an insurance limit, nursing not being paid, claims not being paid and there is often therapy and/or equipment I would like to buy that we can't afford.
  30. Researching better equipment (supplies, walkers, wheelchairs, special beds, suction machines, oximeters, humidifiers, CPAP etc). Plus getting pre-authorization and payment.
  31. Waking up in the middle of the night to alarms or suctioning (on top of normal child wakings for 3 kids).
  32. Constantly monitoring breathing sounds day and night (yes I can hear her in my sleep).
  33. Filing/organizing medical reports and records.
  34. Scheduling and following up with doctors/surgeons/therapist/nurses.
  35. Obtaining preauthorization for expensive treatments & following up on insurance payment (seriously, right now we have an outstanding $20K claim from May.)
  36. Negotiating with schools to form a solid IEP. Attend meetings. Review and sign, it's a legal contract.
  37. Constant educational challenges. TONS of time spent trying to teach things kids normally pick up on quickly. (the names of things, animals, alphabet, numbers, colors, shapes etc.) The frustration of it not helping, the knowledge that if you don't try you'll never know if it would have helped.
  38. Putting your child to bed using hospital like medical equipment (it does take longer.) and monitoring her when she's asleep (even after the kids are in bed we are tied to the "baby monitor".)
  39. Spending a total of months of your life in the hospital, post-surgery.
  40. Countless tears shed over the horrible surgeries my child must endure or their result.
  41. Research alternative therapies (when conventional ones don't work.)
  42. Clean crust off trach and stoma (hole in neck.) Clean G-tube & stoma.
  43. Schedule and attend many doctors appointments & tests (on top of all the normal pediatrician appointments.)
  44. Attend weekly therapies (Ainsley started therapy when she was 4 months old.)
  45. Perform at home daily therapy "homework" (a never ending source of guilt when you don't do it).
  46. Educating myself about her various medical conditions and looking for information that may help change the outcome.
  47. Knowing that I will likely be in a caregiver role for the rest of my life and that none of this stuff is going to end.
  48. Juggling providing all this special care. It is difficult to do all these "little things" while at the same time attempting to raise 2 other children. My attention is constantly divided. Something always suffers.
  49. Time spent supporting other parents in similar situations, we are each other's life lines.
  50. Explaining why yes, actually my life is a bit different from the average moms, just to have people "not get it" or reply that "everybody is busy".
P.S. And don't you dare tell me "some of those things are things that everybody does with their kids" because diapering, dressing, bathing, grooming, feeding and teaching a child during a normal temporary phase of development is NOT THE SAME emotionally or physically.  It's more like caring for an aging parent...And think about it...People look forward to their children growing older because the early years (1-4) are hard. They don't get easier just because you've been doing it longer. It's been nearly 12 years for me, of having "young children", and I'm tired. I love Ainsley and my older kids more than life itself. But it's still tough. Imagine your busy life. Now imagine on top of that caring for Ainsley and this list. Still think it would be "easy enough"?  If so I challenge you to come do it for a week or two so I can go on a real vacation and then we'll talk when I get back.  Any takers? Step on up.

Nov 26, 2012

Happiness Week 47

Our week was completely consumed by Thanksgiving preparation, the event itself and recovery. I don't feel like trying to come up with something original and wise to say on the subject of thanks so instead I have two quotes to share. You decide which, if either, to take to heart.

“Anyone who imagines that bliss is normal is going to waste a lot of time running around shouting that he has been robbed. The fact is that most putts don’t drop, most beef is tough, most children grow up to be just like people, most successful marriages require a high degree of mutual toleration, and most jobs are more often dull than otherwise. Life is just like an old time rail journey ... delays, sidetracks, smoke, dust, cinders, and jolts, interspersed only occasionally by beautiful vistas and thrilling bursts of speed. The trick is to thank the Lord for letting you have the ride.”   - Jenkin Lloyd Jones


“Be thankful for what you have; you'll end up having more. If you concentrate on what you don't have, you will never, ever have enough” - Oprah Winfrey

Daily Happiness Photos - Week 47

11/19 Rainy Fall Days
I love the sound of the rain. If it's quiet at home and I have nowhere to go then that is a wonderful day to me.
11/20 Color Matching & Identification
Ainsley finally seems to be getting it. Or so it seemed today. With any luck she'll be able to do it again the next time. I'm a bit tired of the one step forward, two steps back, one side step and one step diagonally dance.

11/21 Brussel Sprout Stalks
This crazy vegetable is delicious. And traditional holiday fare for my husband's family. Good Old' Trader Joe's is the only store I know of that sells them on the stalk. But I know from experience, they sell out. So I bought early "just in case".  Sure enough they did and I was so happy to have my back-up brussels. They got more in at the last second and I rushed down to buy them so we got double the brussels this Thanksgiving.

11/22 Being A Well Prepared Host
Hosting is stressful and a lot of work. This year Steve and I managed to work together and get everything done ahead of time. I think it was a first. And we've hosted many times. We had all the food prepped and on the stove, turkey in the oven. Even the table was set before my family arrived.
11/23 Mother Daughter Scrapbooking
We had some down time in the days following Thanksgiving so I set aside some one-on-one time to spend with each of the kids. Evie's been making digital scrapbook pages using Storybook Creator(3.0 not 4.0). We worked on getting them print worthy and added 4 new pages to her album today.

11/24 A Tidy Desktop
You already know I like things to be neat and tidy. I do a lot on the computer and so do my kids. We have a lot of icons all normally organized in rows by type (frequently used programs, Internet sites, photo editing softwares and files, scrapbooking programs and files, Ainsley's AAC programing, documents of different types, and kids games and websites) and they would get randomly rearranged when Adrian changed screen resolutions to play one of his games. Then I couldn't find my programs and files and I'd spend a bunch of time putting all the icons back in place, just to have them scattered about again. I'd asked my IT guy (Steve) to try to fix it but it still kept happening. It's a fault of Windows. For a moment I considered upgrading to Windows 8 but after some research I found a utility called WinTidy that you can buy for $8 that will remember your icon locations and put them all back with the click of the mouse. It was money well spent considering the aggravation it was causing. I added a slideshow gadget so I can enjoy my photos every day(don't know why I didn't do that sooner) on the desktop as well as a calendar. Now my computer desktop is looking quite nice and I'm ready to get back to work on my photo frame project if I can squeeze it in before Christmas.

11/25 Oral Motor Progress
After hours and hours of working on trying to produce the "oh" sound over many years, I think we've finally made a little progress. Thanks to all the jaw strengthening and oral motor exercises I've been doing with Ainsley she is able to close her lips around the tubes and a few times when I removed the "O" tube from her lips she was able to make the "oh" sound for a split second. I'm putting all this effort in so she can have an understandable "no" (instead of "nu").  Being able to have a clear yes and no would open her world up immensely (Yes is harder and will be my next goal after no.). I'm sure the second she "gets it" I will wonder why I worked so hard to check this one off my very long Ainsley to-do list because I'll be hearing it all day long.


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.

Nov 22, 2012

Happy Thanksgiving!!!

This is just a quick Hello to say Happy Thanksgiving! Evie made this fabulous video all by herself using Windows Movie Maker and Storybook Creator. I thought it was the perfect way to wish you all a Happy Turkey Day!

Nov 19, 2012

Happiness Week 46

Steve started his new job this Tuesday. Just our luck, they are in crunch time to finish the game they've been working on. So he had several 2am work nights this week. Of course this means I'm on my own for dinner, homework and putting the kids to bed. It's giving me a real bad feeling of deja vu. After a month of regular hours (and 2 weeks off) I'd just gotten used to him being home. But they are promising that it won't be bad during the holidays but that too gives me Deja Vu. Still, I am grateful he has a job so I'll just hope this company is "the one" that actually learns from it's mistakes and by some miracle avoids this type of miscalculation on it's schedule in the future. (Insert serious eyeroll.)

Unfortunately Ainsley had a little accident on Monday. We were attempting potty training (no not that kind of accident, but yes that kind too) and I was walking her back from the toilet holding my hands and she unexpectedly let go of a hand rotated her torso to turn off the light as we passed the switch, lost her balance and fell and hit her face on the kitchen cabinets. She badly banged and cut her lip. I didn't take her to the ER because I knew they wouldn't do anything for her. How do I know?.....Well 6 years of Ainsley gives a mom a different perspective. AND, Evie tripped on the stairs at her grandpa's house when she was about 3 years old and cut her lip nearly all the way through with one tooth and punctured it with 2 other teeth. It was horrible. They stitched it only because I insisted asked them nicely to (because I also have a lip scar from a childhood fall) but the dummies used dissolvable stitches (not smart in the wet environment of the mouth - this was pre-Ainsley now I'd know better). By the time we drove home to Seattle from Issaquah they came unstitched and we had to drive back. They didn't restitch it and so Evie has a scar. Plus having her lip stitched was torture! Not something I would want them to do to Ainsley considering this cut was not as bad. Bad, but I felt totally comfortable making the call not to have it looked at. So anyway....Ainsley's lip is healing but she's been miserable all week. It was quite swollen until today. Now it looks like there is a giant canker sore on her lip, which it basically is. I think in another few days she'll be happier and more "herself".  I'll be glad of that.

I'd hoped to update you on the results of Ainsley's endocrinology appointment last week, but of course the doctor didn't call like he said he would. I left a voice mail but didn't hear back.

Today she had a follow up appointment with her occuloplastic surgeon. It's been 5 months since surgery (in some ways it feels like years ago) I don't have the energy to go into it so I'll save that one. They did pull an eyelash that was growing into her eye. My poor girl. Still not going into it other than to say that. Thinking happy. Happy for this post.

We'd borrowed an ILS pillow from the SLP this week but after trying it I'm not sure the pillow would be effective for our goals in the same way the full system is, even if it costs $300 instead of $1800. I don't need "one more thing to do". So we returned it Friday at our therapy session. My purse slid off the wheelchair and my phone slid out under the car. I didn't even notice it until I was leaving for girl's night out the next day.  After searching everywhere I called my number to find it and much to my surprise someone answered. Unfortunately she said it was run over (probably by me) and the glass was shattered. I've been getting by just fine with a basic cell phone. I went phone shopping yesterday and was horrified to learn what service costs for "smart phones". Steve's been trying to talk me into getting one. In fact a couple years ago he bought me an IPhone and I made him take it back. I'm that resistant. I got by without it and saved several hundred dollars. As luck would have it the Apple Store and AT&T were out of the IPhone 5's yesterday, so today I duct taped my Razor back together. It's so ghetto. Unbelievably it works and will get me by until I can figure out what to do.

In addition this week Ainsley had her second hippotherapy session and the therapist said she and the horse both seemed much more relaxed. I think it's actually made a difference already. She started to straddle the toilet (a bit like a horse) using strong trunk muscles and seems much less at risk for falling in or off the toilet which I obviously like. I'm hopeful for other positive changes.

I finally have been able to catch up on all the straggler stuff that didn't get done over the summer and since the move. This week I started working on the toughest area for me. Paper. I've now got it pretty well organized with one caveat, Ainsley has her own drawer of "to-do" paperwork on top off all my other stuff. I'm thinking it's going to work better to have that separated. There's just too much of it. It's just in time since the holidays are basically here and the year is nearly over.  I'm ready for a fresh start.

Here are the week's pictures.

Daily Happiness Photos - Week 46

11/12 Downton Abbey
I just learned about this show from a lady in an antique store. I guess she sensed I'd love it when I told her how much I like antique English country decor. Steve and I started watching it on Netflix and it's been so nice to have a show to watch that we both enjoy.  It's so convenient that we can watch at our own pace. Unfortunately tonight we watched the last episode of Season 2 and now we can't wait for Season 3 to come out on PBS in January. 

11/13 Doing Something Right
When I see this I know I must be doing something right in the parenting department because I do plenty wrong. Since Steve was working late I had to drag Adrian and Ainsley along to Evie's ballet class. Rather than wait there we went to Target. Adrian found some Christmas themed gel window clings that he wanted to buy as a Christmas present for Evie. I told him he should give them to her now so she can enjoy them longer. I offered to pay for them if he'd like but he said he really wanted to. He gave them to her in the car and it warmed my heart to see the love they share. Adrian is such a sweet boy. 
11/14 Family Friendly TV
Ainsley has a handful of shows that she likes to watch and they are all rather intolerable if you are an adult: Curious George(that's the best), Kipper, Babar, Dragon Tales (that's the worst). Even Evie and Adrian are tired of them. So I was rather happy to discover that Ainsley really likes Leave it to Beaver (on Netflix which I love). I hadn't watched it in years and I'd totally forgotten how funny it is. Tonight we watched an episode of when Beaver went around selling water from a wagon to earn money for a baseball uniform. It was so funny to hear them all say how dumb people would have to be to pay for water. Little did they know 50 years later 85 million bottles of water would be sold every day in the US.

11/15 Done with Homework Hell
No surprise here, homework time is not my favorite time of the day. If you have kids that can do it themselves and stay on task without reminders I hate you think you are real lucky.  Evie had math homework to do on the computer, story problems multiplying fractions. So with each answer the score would change on the screen. She had to get a 90, and we figured out that meant 90 percent.  She would be in the upper 80's and then get an answer wrong and her average would jump down and that happened over and over. When the score hit 90 and she could finally go to bed (I'd already tucked the other kids in) I might have actually jumped for joy.

11/16 File Pocket
I always have a "pile" on my desk. My "to-do" stack. Actually I had 2, one on each desk until I forced myself to spend a few days going through papers last month. I even got the kids' school paperwork sorted (mostly recycled). I've been looking for a metal wall pocket to keep my stack up and off the desk and finally found just what I wanted at World Market. Now the trick will be keeping the stack small enough to fit in it.  My next step is manage my to-do items and create some schedules to help keep me on task. If you look closely you can also see my new monitor stand to elevate my monitor. I'm hoping it will ease some of my back pain and make it more comfortable to spend long periods of time at the computer editing photos (top on my to-do list).
11/17 Girl's Night
I met 2 of my oldest friends for a girl's night out. We went shopping and had drinks (Kappatini's, sake & Sapporo) and sushi. We usually get together as couples so it was nice for a change to have some girl's time to really chat without the distraction of men and/or children.

11/18 Stuffie Sleepover
Evie had the brilliant idea to have a stuffie sleepover. She wanted to blow up the air mattress and sleep with every single one of their (hers and Adrian's) stuffies. In true Evie fashion she'd been obessessing about it all week.  I thought it was perfect to do it the night I went out. The next morning it was so fun for the kids to play with them in front of the fire. There were so many that I was able to bury all three kids* and have them "pop out". Ainsley thought it was the coolest thing ever....and it was
*Please don't buy my kids any more stuffed animals. Just sayin'.


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.