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.

Nov 12, 2012

Happiness Week 45

Yikes I nearly forgot today is Monday since we are all at home because of Veteran's Day. This will have to be a quick one. I promised the kids to spend some time with them. We are potty training Ainsley and let's just say it isn't going too well. The clean up has cut into my day of relaxation (Ha, ha, ha ha ha. I've finally realized there really is no such thing).

Daily Happiness Photos - Week 45

11/05 A New Marking Spot
I used to love marking the kids' height on the wall in our basement. I've been a bit lax in doing so for the past couple years. Today we found a new marking place.
11/06 A Second Term for Obama
I like to think I'm an independent. I like to consider the candidates rather than simply vote down party lines. I considered voting for Romney. The deciding factor for me was that Romney planned to repeal "Obamacare". I've never been happier than when I learned we would no longer have to worry about Ainsley being uninsured because of our insurance's "lifetime maximum" (which was $2 million).  Sure we are on a "Katie Beckett Medicaid Waiver" that picks up secondary expenses beyond our insurance, it's what allows children like Ainsley to live at home with their families instead of in hospitals or institutions as they would have 30 years ago, but there is little peace of mind in that. First Medicaid doesn't pay well so it's difficult to find providers that are willing to accept Medicaid patients on Medicaid. Second, is the uncertainty of the waiver programs since there is word of them being cancelled in some states, like Illinois. Which is incredible when you consider that this program saves the states a lot of money by keeping kids from being institutionalized. I know I can sleep better now.

11/07 Leather Bound Books
Some may dream of a Kindle Fire but I dream of having a library of dust covered heirloom leather bound books like those from the Easton Press. They are so well made that they are... ehem...unaffordable.  They used to make a beautiful set of Little House on the Prairie books and they are so rare that the set now sells for over $1500. I would check the E-bay listings hoping for a miracle, never to find one. So imagine my delight when I discovered that Barnes and Noble has a leather edition of the first 5 books for $20. These special leather editions are really nice, so if you love classics, go to B&N and check them out. 
11/08 Antiquing
I could get lost in antique stores for the rest of my life and be happy as can be. I love looking at all the objects of days gone past and wondering about the times and people who owned these objects.  The only trouble is that I love so many things I see. I guess it's good I don't have unlimited finances because I'd have a lot of "junk". Steve was kind enough to indulge me with a trip to Pacific Galleries since we were in Seattle to take Ainsley to new specialty, endocrinology, more about that another time. I did not find an umbrella stand but found plenty of inspiration like these gold frames with burlap. I'm going to have to make my own.

11/09 Congratulations!
Congratulations are in order because Steve got a job today!!! The game studio he worked for was closed down by Sony in April. He had a contract to work on Halo 4 but it was temporary and ended the day before Halloween. I didn't realize how much this was weighing on us until now. What a RELIEF! Evie had been pestering us to bake her first cake all week, and it worked out perfectly that she was able to do it for her dad. She did a nice job, I'd say.

11/10 Hot Soup on a Cold Day
Nothing is better, nothing!
 It was colllllld. The kids played outside while Steve and I did a bit of yard work. I forgot to get a single photo of Ainsley all decked out in her hat, scarf and mittens playing soccer in the driveway using her walker with Evie and Adrian Can you believe I missed such a photo op?! Later I made 16 bean soup and we cozied down for the night in our warm house. I LOVE SOUP.

11/11 Decluttering
Maybe some day I'll get into the personal organizer business. I love to have a place for everything and everything in it's place. My poor kids. Evie has a lot of junk. I hadn't seen the tops of her dresser or nightstand in months. I found this shelf unit at Goodwill for $3. After a can of spray paint it looks pretty cute and was a great way to compromise so that she can still keep all her knick knacks but without her room being a total sty. Of course this will last a few hours at best.

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 7, 2012

Little Bit Hippotherapy

On Ainsley's birthday we got the unexpected phone call from Little Bit Therapeutic Riding Center saying they had an opening for Ainsley. It can't be a coincidence and must be a gift from above. The wait list is 2 years and we put in our application ages ago. They'd called me the prior week with a Saturday 8am slot and I had to pass, and say it just wouldn't work. Ainsley would be too sleepy being pulled out of bed at that time. Plus Adrian frequently has games (soccer, basketball, baseball) Saturday mornings. When I refused that spot I fully expected that I wouldn't hear from them for months. So I was rather surprised to get a call the following week for this highly coveted weeknight evening therapy slot.

The timing couldn't be worse. As I've mentioned Steve was layed off in April. Yes he got a temporary contract but that was coming to an end on Oct. 31st. We have been fortunate that other therapies, speech occupational and physical therapies have been covered by insurance. I've made sure of that. Hippotherapy* on the other hand is not currently covered by most insurance companies.
*Hippotherapy (from Wikipedia) is a form of physical, occupational and speech therapy in which a therapist uses the characteristic movements of a horse to provide carefully graded motor and sensory input. A foundation is established to improve neurological function and sensory processing, which can be generalized to a wide range of daily activities. Unlike therapeutic horseback riding (where specific riding skills are taught), the movement of the horse is a means to a treatment goal when utilizing hippotherapy as a treatment strategy.
And it's expensive at $115 per 45 minute session. That amount is apparently less than half of the actual cost of delivering that therapy. When you consider that rate is about what a physical therapist normally charges, plus they have horse handlers during the riding, administrative costs and the cost of maintaining the horses and the facility. adds up. So I suppose we should feel lucky, but right now all I can think of is the cost. If we passed on this spot we might not get another opportunity.

We have a (very, considering the cost of an education) small amount of money saved for the kids for college so we decided to take the spot and temporarily pay for it that way, and pray that Steve gets a job quickly. It will be tough to pay this much for therapy even if he is employed. If he doesn't get a job quickly then we may have to withdraw her. At least for now we can try it.

Ainsley's had a handful of 5 minute pony rides in her lifetime but this is different. For her first session she did really well. She was nervous at first but was calm and rode for about 20 minutes while I waited in the observation room and then later on the platform. Her horse was a Norwegian Fjord Horse named Wiki. After the riding portion the therapist worked with her doing some typical physical therapy activities in the therapy room.

Aside from the cost we're super excited to be accepted into this program. At our evaluation I had several very kind parents introduce themselves and say that their special needs child is still riding at Little Bit 20 or 25 years later. I figure that is a true testimonial. I can only hope that I'll feel the same way and that this therapy will help Ainsley learn to balance in standing and walk independently. That is our goal.  Here are some pictures and video.

It's basically dark at the stables.

 We were a bit early so we took a few minutes to look at the horses whose heads were poking out of the stables.
They walked her onto the platform and had her pet Wiki before she got on. *Photos taken through the observation glass.

Getting on Wiki for the first time.

And she's off.

Making her first loop.

A closeup of Wiki.

And the characteristic stripe down his mane.

Ainsley doing PT, picking up blocks (hands free) and putting them into the shape sorter. 
And here is video of her riding!  
(I wish the video quality was better but I took it with my point and shoot.)

Nov 5, 2012

Happiness Week 44

Last week naturally was consumed by Halloween. I don't know about you but often I'm happiest when a big event like that is over. There is so much going on that the stress of trying to pull it all together overshadows the fun. I guess if I'm honest I enjoy reflecting on the festivities more than I enjoy the festivities themselves which might seem ironic for someone who makes such a big thing of the holidays. Sure I could do less and maybe that would be smarter but I think there must be some reason why I do what I do. Some need that is otherwise unfulfilled.

A friend said yesterday on her blog Life is a Journey, Not a Destination and that is so true. Our lives are made up of the days along the journey, the destination is not the point at all and the more you focus on it the less you can enjoy the process of getting there, which is, after all, unavoidable.

In part that is the reason that I started this Happiness Project, to examine my days and look for the moments of happiness that might otherwise go unnoticed on this journey of life. It's not easy to maintain gratefulness and look at the positive and ignore the negative. And I find it a constant challenge to stay in the moment and not always move on to the next thing. Now that it is November and I have just 2 months left I admit I am looking forward to the end of this Happiness Project. Not that I regret doing it.  It has been an interesting exercise to examine the days of my life in this way and what I have found is that I am both happier and unhappier than I realized. I suppose we must all feel that way. I've certainly never met a person yet who is happy all the time. I wonder, why do we always imagine it must be better or easier to be someone else? Show me that person who believes he or she has an easy life. I want to meet him or her and sit down with a bottle of wine and have a good long chat. I think to wish you could be that person is like wishing you could be a unicorn and yet there there are many people who spend their whole life doing just that.

The older I grow the more I believe we are all perfectly imperfect.  I think the true beauty of life lies in our differences. It is by comparison that we each shine in our own special way, creating the full spectrum of light which illuminates our earth from darkness. 
Daily Happiness Photos - Week 44

10/29 Dramatic Skies
I love the sky. Doing this project I have realized how often the changing skies above bring me happiness. I love nothing better than when I go outside and the sky captures my attention in some way because of it's magnificence. Even if it's from the car window as I am running errands.

10/30 Mummy Baby
I really thought it might not get done, my mummy baby, but I did it and it turned out just as great as I imagined.

10/31 Trick-or-Treaters
Do you remember that nervous anticipation when you were a kid and approached a door to Trick-or-Treat? I love decking out the house in a way that makes that experience special for the kids even if there aren't that many of them. I love seeing the Trick-or-Treaters in their costumes and get so excited every time the doorbell rings. My kids have a tradition of Trick-or-Treating our house when they come home. It's the best time of the day when we can all relax in front of the fire while the kids pour over their candy before bed.

11/01 Jewelry
I like jewelry. I don't have a bunch of expensive jewelry, just some old silver stuff. I haven't bought much of any type of jewelry in years. Lately when I'd open my jewelry box I was not happy with what I saw, like on Halloween. What a mess. Not only did I not like the jewelry, the inside was covered in dust and hair. So while putting away the disaster in my bathroom created by Halloween I set out to clean my jewelry box and realized that the silver jewelry wasn't all ugly, it was tarnished from years of being ignored. It took hours but I got it all polished and I feel like I got a bunch of new jewelry without paying a dime.

11/02 The "Haunted Dining Room"
Even though Halloween has passed I am still very happy with my haunted dining room scene even though I realized afterward that I forgot (or never had time) to put up the spider webs on the table. I always seem to forget something. Oh well, next year we'll make it "bigger and better". I've already picked up a few accent lights on clearance for next year to make it even spookier.

11/03 Little House
I loved these books when I was a girl. Ever since a part of me has always wanted to live simply in a log cabin. I am determined to read the books to my kids. We started ages ago and haven't gotten far but today we had some time to do a little reading and the kids seemed "into it". I was happy, until 2 of the 3 fell asleep. I don't know how we'll ever make it through all 9 books at this pace. I might be reading them to the kids on my deathbed.

11/04 Weekend Time with the Kids
I love a weekend when there is not much going on and there is a little time to play with the kids in between meals and chores.  Ainsley and I had a great time. Of course our play quickly took on a therapy aspect to it. It's so hard not to do that when you have a child like Ainsley. Still we had some fun. Evie and Adrian performed dances for us. Adrian and I watched Leave it to Beaver, the haircut episode and laughed until we cried.  Weekends are the best!

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 2, 2012

Halloween 2012

In light of what's been happening on the East Coast I feel a bit ridiculous about posting pictures of my elaborate Halloween festivities. And yet I will because October is my favorite month of the year and our family LOVES Halloween. Still, I don't know about you but I feel very blessed and grateful at the moment. And that is saying something considering Halloween marked Steve's first official day of unemployment.


This Halloween season my world was turned upside down by a piece of scrapbook paper with flags of various Halloween items. There it was, on one of the gorgeous displays at Ben Franklin, best craft store in the world. All I had to do is walk away but no....I HAD to have those little flags for my entry way! It was, unfortunately, only available in a pack of other papers so buy the whole pack I did, and that was my undoing.

Inside the pack were countless amazing papers and stickers but the one that caused the BIG problem was an invitation to the voodoo queen Marie Laveau's Halloween ball. And there were the coolest postal stamps. Evie and I decided it would be so cool make it into an invitation and use it on our magnetic scrapbook frames in the entry way. We also found a mortuary toe tag. So we fabricated this story that Kerry Mehoff (get it, get it?!) was invited to the ball and died there on Halloween night. I even put red food coloring on the toe tag for blood. The kids thought it was creepy and I loved it.

That was good for a few days until I had the idea that we could recreate a scene from the ball the in the dining room. (We'll just have to imagine that at this ball they also had a sit down dinner.) I figured it would be easy enough but of course nothing is ever as easy as it seems before you start. The optimist in me gets the better of me every time. I looked everywhere for a round tablecloth for my spooky scene but couldn't find one even on the internet so then I spent 2 days making one from a sheet.  As I experimented with coffee grounds and tea staining I had that too familiar deja vu feeling of "WHAT the HELL am I doing?!"  But it was too late, I was already started and my creative demons were loose. In the end I usually think it's worth it but the process is QUITE painful

I was super excited that I was able to find a second use for my Medusa pinataconsidering the time it took me to make it (I can't believe I never posted pictures from the crazy Percy Jackson Camp Halfblood party). I'd also always wanted to do a potions table for a Halloween decoration so again my past efforts paid off and I was able to reuse a lot of elements from the Harry Potter Party potions for my "Marie Laveau" scene.

Before I came up with this crazy idea I also planned on doing a few other things: Made a mummy head (like my friend Janet's that I borrowed and coveted but had to return), made a talking mummy doll (from a doll found at a thrift store for $1.29 because Evie said it would be too creepy to use one of their old dolls). And make a witch silhouette like the one bought many years ago but never got from on post-Halloween clearance. (The order was accepted but they ran out before they shipped it and I've been mad about it ever since.)

So take that Martha! I made my own from a little black poster board.

This mummy baby really is creepy, especially when it says "MaMa, MaMa."


We were so busy with all this craziness that we carved pumpkins the night before Halloween and that was cutting it a little close. Especially when we realized that Evie had ballet class from 7-8 but what are you going to do?!

We got our pumpkins from Remlinger Farms this year and wow they were thick!

Ainsley had a great time scooping guts in and out. She kept signing help so between saving seeds for roasting, helping her and taking pictures I never carved my pumpkin.

I wasn't about to have an uncarved pumpkin at the door on Halloween so I bet Evie $5 that she couldn't carve that giant pumpkin in 5 minutes or less. I set the timer and she DID IT! I didn't think she could, I just wanted the pumpkin carved and FAST. She was so happy, she's now that much closer to paying me back for her Red CD. It was a cat and she even carved a tail on it's bumm. The girl's amazing.

The finished pumpkins.

Just one more.

Evie's Harry Potter pumpkin complete with wand.


Now let's get to the actual day. I will start by reminding you that I'm not a morning person. So getting up at 6am to help Evie with her costume was painful because you know I was up late.

Ginny Weasley with pygmy puff.

See, there she goes off to school. It's DARK. You ask, why couldn't she get herself ready?

Because of hair. Note to self that future Halloween costumes CANNOT require colored hair unless I've budgeted for a WIG! And just a little tip for you: Don't EVER use colored hairspray in the house.

Someone posted a link to cool wheelchair costumes on the Trach forum and I happened to have a seldom used chef costume that was a perfect fit for Ainsley so then I HAD to make an OVEN. Yes come now and taking me to the loony bin. But wait. The day before Halloween I e-mail Ainsley's teacher because there was NO mention of Halloween costumes for her class. It turned out that a parent organized a party but I didn't get added to the e-mail list. It was mid-day, PARENTS WERE INVITED, and it was a POTLUCK. Like I didn't have enough going on without that. Luckily happened to have a box of pumpkin bread mix in the cupboard because I didn't have time to go anywhere while I was using spray adhesive to finish Ainsley's oven. Then the pumpkin bread came out crumbly.  So quickly I cut it into pieces and put it on a plate with the pumpkin seeds I thankfully had roasted and ran out the door.

It might have looked like I had it all together but if you were a fly on my wall you'd know otherwise.

Unfortunately every minute was booked and this last minute invitation meant that I would have to dress in my costume before I left for Ainsley's party otherwise I wouldn't have time to put it on before trick-or-treaters came and I'd gone to some trouble putting my costume together. I'm sure the other parents thought I was crazy but that's okay.

 She was having fun.

All seemed good until she got tired at the end and laid on the floor hugging my legs. The nurse and I looked at each other wondering what was up with that. 

Here she is after I got her up from her nap.  Poor kid spiked a 103 fever. I thought we were in big trouble. Oddly after a dose of Tylenol she was fine like it never happened and she was able to trick-or-treat.

She perked up enough to sit at the table for dinner our usual A-Z Chicken Alphabet Soup in a Pumpkin. It looked good but the pumpkin was bad (dry when we opened it) and left a bitter taste.

We aren't done yet. I had to respray Evie's hair because the hair spray can ran out of propellant (so the remaining spray wouldn't come out of the can) before I finished that morning. That meant I had run out of time and didn't do her freckles (so I had to do those at the last minute) and did a crappy job sewing on her pygmy puff. 

Add to the drama that Adrian was afraid to wear his Pokemon trainer costume to school because he thought certain mean kids would tease him (I won't name names but after all the worrying this kid wasn't at the bus stop). He was really torn up about it. I reminded him about Auggie from Wonder and I think that gave him courage. After many discussions he decided to wear it anyway. But then he forgot to wear the backpack (that I'd made using a green backpack from Amazon and a Pokeball patch ordered off Etsy. When he came home he seemed disappointed that kids didn't know what his costume was. Arrrgh. Well he didn't have half the costume on. I just can't win with this kid. His costume turned out great. In case you hadn't guessed he is a HUGE Pokemon fan. I was afraid if he didn't wear the costume he would regret it the rest of his life and that wouldn't be the last he let his fear hold him back.

Somehow it all came together and they were out the door with Steve for trick-or-treating, a little late but considering.....

I stayed back in my Cruella DeVil costume and passed out candy. Luckily I was sipping Jack-N-Cokes all night or I'd have passed out from exhaustion at this point. Caffeine is my friend.

When they got back Steve reported that people LOVED Ainsley's chef costume. In actuality a wheelchair just increases the opportunity to embellish the costumes. But I am hoping that this will be Ainsley's last year in one.

The kids had so much fun dumping out their candy.

With the recent feeding progress I'd hoped Ainsley might eat some candy this year. She didn't. She still had fun with her candy.

She bit the wrapped had us open it and then signed all done.

I was prepared with a lollipop which she gave one lick. And...

....sock monkey dolls that I picked up for under $10 which she immediately threw across the room (so I guess they're mine now).

When Evie said she'd take Ainsley's sucker she crawled across the room with it and handed it to her.

She had more fun just playing with the candy even though she couldn't eat it. It's always a little sad, but I guess I shouldn't let it bother me since she doesn't seem to mind. I won't buy any special Halloween treats for her next year. 

My best close-up of Ginny.

I love this picture of Adrian with his spoils.

Some more decorations.

The kids put out the bugs this year. They are getting older and quite creative.

We finished off the night by putting the kids to bed and watching Saw. Scary stuff.

I hope you got your fill of candy and had a fabulous Halloween. I know we did.