Project “2014”

2014 is a big year for the family in so many ways.  It is the year that both my husband and I turn 40, his birthday is in March and mine is in August. Last year it was my intention that I would be in the best shape of my life for my 40th birthday.  Well a tsunami hit this intention with no mercy as I slid backwards and backwards towards this goal and although many of the reasons were legit, understandable and even forgivable, I can not afford for them to take precedent this year. Not just because it is a monumental year ahead from a birthday milestone perspective but rather the success of this upcoming year is truly hinged on strengthening my physical and mental health.

It is also our 10th Anniversary.  Given what we have been through on the special needs front I believe it is worthy of an incredible celebration but it seems almost laughable at this point given that we have resorted to alternating our sleeps with our dear daughter but the plan is by then (August) we will have a shot at doing something a little more memorable than being ships passing in the night.

This is also going to be a pivotal year for all of us in redefining what is truly important to each of us when it comes to material items and how they fit into the bigger picture of what we want our life to look and feel like – short and long term.   The catalyst for this opportunity lies in the fact that we enter the new year jobless.  I left my full-time work back in March to contend with the increasing issues relating to Reilly and to prepare for the move.  Mike gave notice to his company in Toronto, after 15 years, and just finished up his employment before Christmas.  We prepared ourselves for a potential gap in income and will have to make some adjustments, some will be easy and some will totally take us out of our comfort zone.

In the end I want this journey to put us on a path where we truly feel a sense of family happiness and meaning instead of constantly feeling inadequate when we look at society’s traditional standards of success, especially when we  live in a city of great wealth and abundance.  So there is huge room for growth on this subject front and I know the sooner I can reconcile some of these thoughts, the sooner I can feel more comfortable and at ease with certain decisions and actions but also the sooner I can breathe comfortably without a tightness in my chest.

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Missing present

Dear Santa Claus,

I am sure you are enjoying some well deserved rest and relaxation right now after the whirlwind tour you just had delivering presents all over the world.  As a result I hate to even ask this of you at this time but I am wondering if you could check your bag just in case there is one  little forgotten present left behind. I am not suggesting that you are careless or forgetful but I can understand how this particular present might have been so small that it could have gotten hidden in the creases of your bag.

This present I am speaking of is something that my husband and I were greatly anticipating and looking forward to for some time.  We are very grateful for all the other generous gifts we received but this particular present was the one that we would have given up everything else to get it.  I guess you must be wondering how I could be fussing about one tiny package that never made it to me and if it wasn’t so important I wouldn’t be making such an inquiry.

This package you see contains some special sleep dust that your elves brewed together for us that when sprinkled on the head of our dear daughter, Reilly, would make her fall and stay fast asleep for a promised duration of at least 8 hours.   And that means both my husband and I can then sleep for 8 hours as well. Can you imagine the possibilities in getting such quality sleep? We are giddy with excitement on knowing what we could do after such a solid sleep.  At a minimum we would be far less grumpy and our coffee consumption would got down considerably.

sleep dust

Looking forward to your response.

Sincerely,

Juliana

PS. If the package is no where to be found, could you spare some of your elves for some night time relief? The going rate in my area is $15 unless you are registered as a private agency and then I can pay a bit more.

 

Write it down

Before the New Year arrives I have a few areas in the house that I want better organized, although it is silly to think that one day can create such a cleansing divide it truly does for me.  In one of the paper stacks that needs to be dealt with I came across a book where I wrote out our Must Haves and Nice to Haves when looking for a new house in Calgary.  In writing out the list we were up against a few challenges, including not knowing the city, needing a house that was wheelchair accessible or could accommodate one, and be within our price range.  Here was what was on our list.

Must Haves

  1. 3 bedrooms or 2 bedrooms, 1 large one for the girls
  2. No more than 15 minute drive to Reilly’s school
  3. Good school for London
  4. >1200 square feet
  5. No immediate highway (noise)
  6. No L or curved staircase
  7. At least a single car garage
  8. Not on a busy street, such as Leslie, Bayview, Bathurst equivalent

Nice to Haves

  1. Neighborhood with young families
  2. 4th bedroom in the basement
  3. Large Bungalow
  4. Excellent school nearby for London
  5. 30-40 minute commute to downtown
  6. Near a park
  7. Near pathways/Outdoor stuff – ice rink
  8. Double car garage
  9. Only 1 lift in the house

Actual house characteristics:

  1. 3 bedrooms main floor
  2. 5km to Reilly and London’s school – both are great
  3. 1200 square feet
  4. Bungalow and straight staircase to the basement
  5. Double car garage
  6. Not on a busy street
  7. Lots of young families (under 4) on the street
  8. 4th bedroom in the basement
  9. Large Bungalow – we have successfully had 15 people over for a sit-down dinner
  10. 17 minute bus ride commute to downtown
  11. Park is 2 minutes away along with an outdoor ice rink

I would have to say in looking back on this list we pretty much got what we wanted given what we penned to paper.  Of course we had to make compromises in making this move, overall square footage, closet space, master bedroom en-suite, etc but I have to say this is the first house that really feels comfortable.

So comfortable that London and the previous house owner’s eldest daughter have become school BFF’s (they ended up in the same Spanish bilingual class) and I have become good friends with the mom.  On one level it is weird that we have forged these bonds but at the same time it doesn’t surprise me given that they were in this house for 11 years and we fell in love with it just the same. It certainly has been put to the test over the holidays as we host and entertain family and it just shows you that you don’t need a massive house when you have a very functional layout.

This past year has been full of challenges, especially since we have arrived in Calgary but looking at this list is a good reminder that when we envision something you want, it can be made possible.

 

Another blast from the past

I am cleaning up files and came across some journal entries summarizing Reilly’s behaviours, I can’t remember if I was preparing for a doctor’s visit or just wanting to record a snap shot of how things were at a given time.  I am often asked when certain behaviours started, especially since I am now working with a new medical team on a few things and can’t recall specific milestones or dates.   Anyways it is certainly interesting to look back and see what issues existed at the time and are still with us and what has changed.

July 16/2008 (Reilly would have been 3 years, 3 months)

  • Gastro – undiagnosed issues
  • Acid reflux – put on Prevacid
  • Sleep – doesn’t settle easily, disturbed sleep, night-time awakenings
  • Shrieks/Screams/Cries
  • overly dependent on me
  • doesn’t like teeth being brushed
  • doesn’t do stairs
  • No words/signs or gestures
  • low tone
  • flat feet, severely over pronates
  • totally dependent on us for feeding/bathing/getting dressed/undressed/changing diapers
  • Sensory issues – stairs, heights, hair dryer, vacuum, inflating or deflating things but ok with generators
  • heavily reliant on Winnie the Pooh videos
  • loves bath time, being in the water
  • usually loves the outdoors
  • temper tantrums are exhibited when there is too much stimuli or not motivating enough (i.e. going to the zoo)
  • minimal play skills (tv, books, staring over at certain toys, swatting people (I forgot that she did that), objects
  • hand wringing started at 27 months, hand to mouth wringing about 31 months (November), this latter behaviour increases at certain times of the day – before lunch and bed and in the water
  • When she doesn’t like doing something she starts to scream, protest and thrashes her arms
  • knows how to turn both tv’s on and off and sometimes the stereo which has a small button (totally forgot about that, and yes she knew where the on/off button was for each of these and would repetitively turn them on and off, on and off, until we had to put furniture in front). 
  • Constantly grinds the floor – no pattern but a greater tendency after a BM
  • does not show visual recognition but does seem to favour me – will try to sit down on my lap or walk into my arms when upset
  • At 20-24 months, Reilly was doing some interesting eye rolling movements. Thought this might be a mild form of a seizure. Stopped though in May/June (25/26 months).

Small chuckle

Reilly doesn’t pick out what she is going to wear for the day.  Every time we have tried in the past to give her choices, she has showed great indifference. So right or wrong we just choose her clothes and she never seems to mind.

This morning was no different, I picked out her clothes and started to change her when London bounced into the room to say good morning.  I don’t know what made me say it but I looked at Reilly and said “I am sure you would like to pick out your clothes just like London, wouldn’t you?”

London said “I don’t pick out my clothes either” and smiled.

I laughed because it is true, London doesn’t pick out her own clothes.   She is so precocious at a lot of things but when it comes to clothes and understanding what goes together she freezes with indecision and when forced to choose she comes up with the most interesting combinations.   She doesn’t have anxiety over it but at times it is like we just asked her to read a foreign language book and she doesn’t understand what it says.  We have tried to work with her in picking out clothes but have resigned to just putting them out for her and realize that before we know it she will be gladly taking back the task and if she comes out dressed liked Punky Brewster so be it.

So I am not sure if London was consciously trying to create a bond with Reilly almost saying she isn’t missing anything, or was just making sure I was being accurate in my statements. Either way the message was clear, Reilly and London are no different when it comes to clothes.

Orthopedic Clinic May 2013 Visit

I am going through some papers that need to be filed and came across Reilly’s last orthopedic visit report.   I keep telling myself just think of all the new words I am learning that I otherwise wouldn’t have been exposed to.  I don’t think they are helping my scrabble game though.

Reilly is an 8 year old young woman with a diagnosis of Rett Syndrome. Her seizures are well controlled by medical treatment (not exactly). We are following her up because of her scoliosis. Since her last follow-up here two years ago she’s been doing quite well (not really). She is walking only with help (hmm, that isn’t true either). She can walk a few steps (with someone supporting her) and the rest of the time of the day she is ambulating with a wheelchair.

On physical examination today, she had a long right curve with ATR measured at 14 degrees. X-rays were done today and demonstrate a right long C-shaped curve with a Cobb angle of 33 degrees and some kyphosis on the thoracic area (my readings tell me >40 typically require surgery). We have discussed with Reilly’s father the natural history of her curve and that it will deteriorate in time, especially when she goes through her growth spurt. At that point there is nothing that we can do to stop the progression of the curve. She needs to be monitored yearly and when she gets into her growth spurt, every six months.

Treatment with a brace is not effective in patients like Reilly and will cause more harm than benefit. We have explained that to her father and probably at the age of 11 to 13 she will need to get her back fused in surgery. The level of the fusion will depend on her pelvic obliquity and ambulatory ability. If she does not ambulate or there is a component of pelvic obliquity, we will probably fuse her to the pelvis; otherwise, we might end at L5.

Christmas Funk

From a business perspective, WestJet’s recent holiday surprise for more than 250 passengers flying to Calgary from Toronto and Hamilton was a genius move to boost its already stellar reputation within the Canadian flying community and even beyond.  For those that aren’t familiar with what went down, WestJet set-up a live video kiosk that connected them with a Santa Claus who would ask each and every one of them what they wanted for Christmas. The requests ranged from socks and underwear, to a tablet, to a big screen tv.

Upon receiving all the Christmas requests, WestJet staff in Calgary proceeded to buy all the items on the passengers list and wrap them in time for arrival of their flights. The passengers were then surprised at the luggage carousel when these beautifully wrapped gifts came down addressed to each of them.

I heard about it but couldn’t bring myself to watch it, crazy huh?  The reason being is that given everything that is going on with Miss Reilly right now I would have asked for the impossible…for my daughter to be normal or at least free from all these current hardships.  No material object can numb the situation right now, so my request would have put the staff in such an awkward position and certainly not have made the editors cut for the final video but my heart would still have been broken.

I finally saw it yesterday after my sister insisted I watch it but I never did tell her the reason for my aversion. Here it is for those that haven’t seen it, I can’t deny it is marketing genius at work.