Saturday, March 31, 2012

It's time

It's official.  We have now passed the ominous one year mark since Ailish left us.  Her belongings are all where they have always been.  The crib has remained with her last bedding, toys etc still in place.  Her closet holds all her clothes as does her bureau.  I have never really had a timeline as to when all these things should be dealt with but always knew eventually the time would come.  I think one year is long enough for the crib.  Ailish shared the room with little H and though it is plenty big the room was not designed for two cribs or beds.  Everytime I need to get into the closet I need to move H's crib.  Not a big deal but unnecessary now.  He has a right to have this space made for him now.  Ailish has made it abundantly clear she is not coming back.  Last Easter I awaited her resurrection and sure as shootin she didn't show up so I am going to assume this year will be no different.

Dealing with the belongings of someone who has died is an enormously emotionally charged issue.  There is no right or wrong way to do it providing you are the bereaved and making the decisions.  Loved ones around us generally have an opinion all with good intentions but usually from the perspective of someone who has not lost a child or someone very dear to them.  I think all of us who grieve a loss know that there is so much insanity with grief, emotions so powerful that decision making can be skewed, unpredictable importance placed on what might appear to be the most mundane things, that we know there are no rules as we work these things out (providing of course there is some progression in healing).  I think it could be very easy to get stuck though.  We want to hold on so tightly to our loved one that we fear letting go of anything as it means they are slipping further and further away from us.  This is how I have felt about Ailish's crib.  If I took it down then one of the main physical spaces she occupied would be empty of her.

It is down now.  I neither vomitted, passed out or sobbed hysterically but I wanted to do all three.  I am sickened by the emptiness of the room.  I want it back to the way it should be.  Be grateful I tell myself.  You had Ailish for eleven years.  Eleven times what they said you would have and they were eleven years of almost perfect health.  You have nothing to complain about.  She's dead I argue back (see when you are not married and you want to pick a fight you have to do it with yourself). Yes she is I reply and nothing changes that so you better start hanging your hat on gratitude instead of sadness if things are going to get better.  Learn the lessons that Ailish has lead you to because you will walk this road again.  If Ailish was the great teacher you promote her to be then don't let her lessons fall on deaf ears. ( I can be very convincing when I argue, at least with myself.)

The crib might be down but don't even think the closet or the dresser is being touched!  Baby steps people.  Baby steps.  I might have to be stone cold drunk to do those....
The next step will be to paint the room.  It is currently a light light pink.  Though H is very much in touch with his feminine side I think we will change it to some shade of green.  He likes green.  The good news to this is getting rid of this ugly little cherub angels that a muralist put on the walls years ago.  They were not the angels I had envisioned when I asked her to paint but in her defence what I wanted she would not have been able to do and have them be visible.  I haven't yet decided what I want done on the boy's wall or even if I do it myself or hire out.  I have another room that needs doing too and I am not a fan of painting so I am leaning to hiring out.

Whew!  It's really too bad I don't drink as I think I could really use something right about now...

clean house

Oh how I love living in a clean house!  If anyone knows of one that we can move into I would appreciate the info

Friday, March 30, 2012

Disney cont..our view every night

We stayed on the Disney resort to try and make things easier re accessibility to the parks.  It really did make things easier.  The kids had to walk less, we weren't having to get onto shuttles to get us to and from.  It was great.  We also had an awesome view of California Adventure Land.  Every night there was a light show that involved music, water and the giant ferris wheel.  Jordan was out there without fail and if the evening was a little cool for sitting on the balcony I had the easy chair facing the show with the doors open to hear the music open to hear the music

Oh Fat Green Fairies....

Looking for the fat green fairies that never showed up for work to dig us out of the post vacation mess while keeping up with the day to day mess that we create.  They do this to me all the time...never showing up when I am most in need.  It is high time I fire their chubby green behinds or at least up the medication that has me seeing creatures that clean the my house....

Tuesday, March 27, 2012


For the love of GAWD why do you make me ride in this stinkin bus?!  I hate the bus! I hate the bus!  Have I mentioned to you that I. HATE. THE. BUS?!

Everytime you make me go I throw up.  Haven't you learned your lesson yet?  There is no way you can complain about having to clean up my mess when I have made it abundantly clear that if you take me for a ride I will in fact puke.  Maybe more than once.

I realize I am just a dog and that supposedly you are the higher species but I must ask the question, if past behaviour is a predictor of future behaviour (yes I watch Dr. Phil when you're not looking) shouldn't you have figured out that a bus ride for me is not going to end well?  For either of us?


Monday, March 26, 2012

Where were you this day one year ago?

What were you doing one year ago today?  I know what I was doing...

March 26, 2011 was the date of Ailish's funeral, celebration of life, going home ceremony or whatever you want to call it but in the end it would be the last time we would see Ailish in the flesh or at least some semblance of Ailish.  I say that because who we saw was not even recognizable as our girl.  Her face was very swollen and distorted.  As they had a picture of Ailish they really should have told me so that I could have made a decision regarding the viewing.  In the end I had the casket closed.  Hugely disappointing.  The explanation I was given was that due to the resuscitation attempts loads of fluid were put into her etc and that perhaps that was the reason.  All I know was I saw her two days after she passed and she looked exactly the same as when she left me and after the funeral home got hold of her and did what they do she became unrecognizable.  I had been on the fence about what to do with Ailish's body.  I originally decided on cremation but as the time got closer I wavered.  I was so torn.  After seeing Ailish at the viewing I was firm in my decision.  I no longer was tied to her physical self and could release her.  In the end I guess it was a blessing though disguised in trauma.

I won't go into all the details but the day though difficult was brightened by the friends and family that came to honour Ailish and support us as a family.  Friends had gone to a spectacular amount of effort organizing the reception with tons of great food and a room that was accessorized with memories of Ailish.  Wonderful words were spoken during the service that both touched and warmed my heart.  Beautiful music arranged and performed by equally beautiful sister friends added so much to the service as difficult as it was to do for them.

I am forever grateful for all of those in physical attendance along with the warm wishes from nations abroad.  It is a small world.  The second saddest day of my life was made bearable by the overwhelming feelings of love that permeated the room.

Sunday, March 25, 2012

Rain Forest Cafe

Tuesday night we went for dinner at the Rainforest Cafe.  This is a cool restaurant that I'm surprised hasn't made it to Canada at least in our neck of the woods.  It has a thunder storm every twenty minutes, jungle sounds, giant aquariums etc etc.  It also has has your entrance and exit a store with all memorabilia of your time there.  Very colourful place.

Short of one drop seizure from Amanda which I think we efficiently blocked from spectators the evening went without a hitch.  Everyone enjoyed their food, wait staff couldn't have been more accommodating and we enjoyed the environment.

We had a reservation which I made after we arrived in the hotel and as I sought out food soon realized that I should have researched better and made reservations for every night before our arrival.  What we ended up doing most  nights was room service which again has its pluses and minuses.  By doing room service it freed up time for evenings in the park where by if we were always on the move to restaurants it would have taken more time up.  The downside is that there was not a huge variety of meals to choose from.  Either way it all worked out in the end.

Immediately outside the cafe is a stage that has musicians play every night.  Malia decided the music had a good beat and she could dance to it and dance she did.  After she was done performing she thought she should zoom off on someone's four wheeled scooter.  She was thwarted in her attempts but she gave it the college try.

Tuesday in Disneyland

Tuesday was our first day in Disneyland.  I never made it to California Adventure Land after the events of the previous day but I'm ok with that.  Our search for breakfast ended with room service.  It was quick and easy with no traipsing around the resort as a large group looking for food.  Don't get me started on the cost though.  Who knew one Mickey Mouse waffle could cost so much?  Did you know there is a three dollar delivery charge to get food up from the kitchen to the room?  And then there is to be the customary tip as well?  See...I told ya...don't get me started!

Appetites satiated we headed through the hotel, down the elevator and out the doors.  It doesn't sound like much but really, that alone with us could be an Olympic sport.  Our hotel opened up onto Downtown Disney.  This is essentially an outdoor strip mall that runs the distance from the Disneyland Hotel through to the entrances of both theme parks.  There are all kinds of tourist friendly stores, kiosks, restaurants and buskers.  It really is a fun place full of music and people.  We didn't hang out there but were frequent travelers through it.

First thing to accomplish after we made it through the turnstile gates (these gal darn things are an attraction  in and of themselves but I believe some us might have the hang of them now!) was to head to City Hall for the best idea ever.  These are called Guest Assistance Cards.  What they are is a bypass to the long waits for the rides.  By showing the pass or indicating you had one you were allowed to enter through the exits and usually get put onto the rides within a few short minutes.  As a friend put it the pass is where Disney levels out the playing field a little.  To know that they have thought about special populations getting the most out of the park when their special needs might otherwise preclude them from doing so with wait times etc is heart warming and I am very appreciative.  To get the pass Super Helper Sue took two of the kids as proof we qualified for the pass and it was H and Amanda who were the ambassadors for the family.  Wheelchair, charming face, flailing limbs for one, blue helmet and loudly stating "bafroom!" and "eat!" who could deny us?  No problem getting the pass....

Onwards and upwards into the attractions.  Our first stop however was a photo op at the feet of Walt Disney and Mickey Mouse with the castle in the background.

There are many sections to the park.  We were headed through the castle and into I don't know what section but it had the carousel, Alice in Wonderland ride, Dumbo etc.  The crowds were thick and most of the kids did not have their distance walking legs and it was hot.  Hot for us that is. You can see how we were dressed.  People had wool hats on their babies and covered them in blankets.  Fleece coats were common.  I was amused.  We were able to get the kids on the aforementioned rides along with a boat ride.    I am terrible with names so I will totally flunk out as your tour guide!  We might have been in Storybook Land.  All the kids went on these rides with varied levels of enjoyment.  Getting on some of them was a spectator sport to be sure.  Samantha nearly hit the drink getting into the boat.  Sort of funny.  It didn't bother her so I laughed.  When I turned my back while the boat was moving Samantha was dragging her hand in the water...again me....not the ride operator.  Jordan too thought putting his hand in the water and then giving Super Helper Sue a good pat was a good idea.  Disembarking, deboating, ummm getting off the boat was just as much a spectacle.  This time we delayed the ride as one of us who shall remain nameless (Jordan) refused to get off the ride.  I was holding H had at least four more on the loose and was many feet away.  As soon as I got H back in his chair I headed up to assist but he had decided it was time for him to disembark, deboat...whatever...get off.  I think it was at this time that we decided to split ranks.  Kids were done even though we had not done a lot but it was a lot for them.  I had Sue, Journey,Alyssia help us get through the crowds back to the entrance and then they would carry on with Phoenix and I would go back to the hotel with the others.  This was one of the main reasons I needed help on the trip other than safety was to make sure that those that wanted to really take a bite out of Disney were not hindered by the level of disability or crabbiness of their siblings.  Donovan is not a huge ride lover so he opted to come back with me too.

That was Tuesday at Disneyland for us.  We ate dinner at the Rainforest Cafe.  Small post to follow.

Thursday, March 22, 2012


Monday after California Adventure Land the happy and tired park goers took advantage of the lovely pools at the hotel.  When they first got back and were talking about swimming Phoenix immediately found a bathing suit and started pushing it at anyone who she thought might get her in it.  If there was going to be swimming she was all over that!  

It truly is amazing to me how Phoenix at age eighteen has shown such intellectual growth in the last couple of years.  It is not that common that someone with such a significant disability develops a whole lot of new abilities after thirteen and that's being generous. It is also a huge generalization but from what I have seen and what my experience is that is true.  Not that kids and adults with disabilities don't learn new skills but that to develop ones that are outside of their developmental level really is not that common.  Phoenix's overall functioning level is about twelve to eighteen months.  What she has been demonstrating for the last couple of years is an increased awareness and ability to communicate and also a stronger determination to make decisions.  It is a beautiful thing to watch.  I am so very proud of her.


hot tub spectators