Going the extra mile even if it is on skates

We are certainly not perfect parents and do make lots of mistakes but the one thing I can say for certain we do right is push the boundaries on all fronts when it comes to including Reilly in normal every day stuff despite her severe limitations.  Up until recently we have had great winter weather in that it hasn’t been very cold (- 4 degrees celsius max) nor have we had snow but the last couple of days it has gotten really chilly and we received our first official snowfall that has left snow actually on the ground. Although I am not a fan of the cold I would prefer there to be snow for it does open up a lot of options to make the winter go by more quickly, such as tobogganing, skiing, snow shoeing, etc,.   So yesterday I promised London that we would either go sledding or skating outdoors and we ended up choosing skating.   So after bundling up to withstand the -11 degree celsius weather we headed to the outdoor skating rink in our small little community.

With Reilly all bundled up in her stroller we hit the rink where she was thrilled to be part of our outing.  Mike and I took turns pushing Reilly around although I honestly think she preferred for Mike to push for he could go far faster than me which is the thrill that I think Reilly truly enjoys.  I am embarrassed to say that my 5-year-old daughter can now skate better than me but I must confess as a proud parent that she is not a normal 5-year-old, especially for a girl.  London has been skating since she was 3 and has been playing in a hockey league for the last 2 seasons and is proving to be quite a natural on the ice.  She gets that from her daddy, that is for sure.

Needless to say Reilly was the only child on the ice in a stroller but I was ecstatic to see a teenaged girl there learning to skate who had Down Syndrome. Kudos to her parents too!  Of course we get a lot of stares from children and I honestly don’t know what is going on in their minds. I am sure it is a mix of curiosity, bewilderment, and confusion.  Especially when they quickly learn that hear Reilly squawk and screech instead of hearing words.  From the parents we either get smiles of encouragement or blank looks as if they can’t see us or don’t want to acknowledge us. Very strange but that is human nature.   Every now and then I get bothered by this but yesterday I had a grin from ear to ear. One reason is that we were all out doing something that we enjoyed (well I am not a big skater but as a parent if your kids are having a great time, you fall in line). Another reason is that the stares for Reilly were equally balanced if not more with the number of comments other parents were making about London.  Fathers and mothers alike were making comments to their children or each other on how good of a skater London was and you can even see some envy from a few of the fathers who were struggling with their sons.  For in many parts of Canada, learning to skate and play hockey is as common as learning to tie your shoes and if your child, particularly your son, doesn’t catch on quickly or doesn’t enjoy it, it becomes a major disappointment.  I personally had no interest in London playing hockey but her interest in the sport was so organic and natural that I would have been silly to deny such an exploration by her.  In the end, London’s love for skating has created an opportunity for us all to get outside and enjoy it.

Dogs can help a child with special needs!

Yesterday afternoon we were invited to a friend’s open house to celebrate the holiday season.  She has  a cat and a dog (semi-hypo allergenic) and due to my allergies I always dread such get social gatherings for I never know how my allergies are going to act up on any given day.   Of course wouldn’t you know that I forgot to take an anti-histamine in advance.  Putting that behind me, we arrived and were greeted warmly of course by the host but also by her dog “Zoe”.  Zoe instantly took to both girls but particularly Reilly right from the moment she got in the door. She sidled up to her and stood on her hind legs to give her a kiss.

For the first bit we walked Reilly around but then she started to get restless so we resorted to the usual comfort technique and sat her on the couch with the Ipad and a Winnie the Pooh video. Normally we could leave Reilly somewhat unattended on the couch with her in eyesight  but with Zoe around we couldn’t do that.  For the minute we sat Reilly down, Zoe was up on Reilly’s lap giving her countless kisses. We would get Zoe down and she would be right up there again wanting to snuggle into Reilly and flood her with endless affection.  The host offered to put Zoe in her bedroom but Reilly wasn’t bothered by it and my allergies seemed to be in check so why not allow her to bask in this affection as we tried to control it a bit for hygienic reasons, lol.

Zoe did mingle with the other guests, especially those with food, but kept coming back to Reilly. She enjoyed playing with London too but there was something honestly special with her interactions with Reilly.   I asked our host whether what she was doing with Reilly was normal as it is obvious that Zoe is naturally a loving and lovable little dog and she said affirmed that Zoe definitely was giving Reilly more attention than normal.

If I didn’t have my allergies I know we would already have had a dog by now despite my other half not being a dog lover.  I did grow up with a poodle which is supposed to be hypo allergenic but I still had lots of problems.  Reilly has always been interested in dogs but has been selective on which ones she reacts positively too but after experiencing this recent interaction I am determined to find a dog that minimizes my allergy issues and responds most warmly to Reilly.  There is no question that Zoe sensed that there was something special with Reilly and decided to ensure that she was given all the attention she deserves.  Last night I was able to get my husband to also agree that we would seriously look into this once we got settled into our new life, assuming it will be Calgary.  Here is to hoping there is another Zoe out there for Reilly.

“Dripping water hollows out stone, not through force but through persistence.” ― Ovid

Today at work I am starting to work on a Change Management presentation for an upcoming software Users Conference in early March.  I have just spent some times researching various change quotes and have pulled out the following that resonate for me, given where I am at in my current journey of life.

1.  “For what it’s worth: it’s never too late or, in my case, too early to be whoever you want to be. There’s no time limit, stop whenever you want. You can change or stay the same, there are no rules to this thing. We can make the best or the worst of it. I hope you make the best of it. And I hope you see things that startle you. I hope you feel things you never felt before. I hope you meet people with a different point of view. I hope you live a life you’re proud of. If you find that you’re not, I hope you have the courage to start all over again.”  ― Eric Roth, The Curious Case of Benjamin Button screenplay

2. “Therefore, dear Sir, love your solitude and try to sing out with the pain it causes you. For those who are near you are far away… and this shows that the space around you is beginning to grow vast…. be happy about your growth, in which of course you can’t take anyone with you, and be gentle with those who stay behind; be confident and calm in front of them and don’t torment them with your doubts and don’t frighten them with your faith or joy, which they wouldn’t be able to comprehend. Seek out some simple and true feeling of what you have in common with them, which doesn’t necessarily have to alter when you yourself change again and again; when you see them, love life in a form that is not your own and be indulgent toward those who are growing old, who are afraid of the aloneness that you trust…. and don’t expect any understanding; but believe in a love that is being stored up for you like an inheritance, and have faith that in this love there is a strength and a blessing so large that you can travel as far as you wish without having to step outside it.”  ― Rainer Maria Rilke, Letters to a Young Poet

3. “Dripping water hollows out stone, not through force but through persistence.” ― Ovid

4. “Sometimes the slightest things change the directions of our lives, the merest breath of a circumstance, a random moment that connects like a meteorite striking the earth. Lives have swiveled and changed direction on the strength of a chance remark.” ― Bryce Courtenay

5. “So many people live within unhappy circumstances and yet will not take the initiative to change their situation because they are conditioned to a life of security, conformity, and conservatism, all of which may appear to give one peace of mind, but in reality nothing is more dangerous to the adventurous spirit within a man than a secure future. The very basic core of a man’s living spirit is his passion for adventure. The joy of life comes from our encounters with new experiences, and hence there is no greater joy than to have an endlessly changing horizon, for each day to have a new and different sun.” ― Jon Krakauer, Into the Wild

6. “To change one’s life:

1. Start immediately.

2. Do it flamboyantly.

3. No exceptions.”

― William James

7. “This was when I learned that you have to give up your life as you know it to get a new one: that sometimes you need to let go of everything you’re clinging to and start over, whether because you’ve outgrown it or because it’s not working anymore, or because it was wrong for you in the first place.” ― Kelly Cutrone, If You Have to Cry, Go Outside: And Other Things Your Mother Never Told You

8.  “If what you’re doing is not your passion, you have nothing to lose.”

9. “The greatest mistake you can make in life is to be continually fearing you will make one.” –Elbert Hubbar

10. “To create more positive results in your life, replace ‘if only’ with ‘next time.’”

11. “The reasonable man adapts himself to the world; the unreasonable one persists in trying to adapt the world to himself. Therefore, all progress depends on the unreasonable man.” –George Bernard Shaw

12. “Courage doesn’t always roar. Sometimes courage is the little voice at the end of the day that says I’ll try again tomorrow.” –Mary Anne Radmache

13. “20 years from now you will be disappointed by the things you didn’t do than by the one’s you did. So throw off the bowlines. Sail away from the safe harbor. Catch the trade winds in your sails. Explore. Dream. Discover.” –Mark Twain

14. “People underestimate their capacity for change. There is never a right time to do a difficult thing.” – John Porter

15. “Each of us guards a gate of change that can only be unlocked from the inside.” – Marilyn Ferguson

Rett Syndrome – Memory Lane

It took me 3 hours yesterday to organize all the paperwork that I have kept regarding Reilly’s care over the last 7 years. It was a very interesting exercise to go through all the different notes made by me and the various therapists and doctors Reilly has seen over the years. I came across one page that is worth documenting as part of the chronicles leading up to Reilly’s diagnosis. I wrote some notes on the back of a print out dated 6/20/2007.  This print out was on Angelman Syndrome.  Reilly would have been 2 years old and just over 1 month old. By this point I knew something was completely amiss with this little girl and on this day I was leaning to an Angelman’s diagnosis (the doctor’s were steadfast on saying she simply had a Global Developmental Delay).

Here are some of the notes I jotted down reflecting on the previous two months:

• EEG was on the 18th – abnormal results for sure – she reacted adversely to the sedative (Chlorahydrate)
• Last 3 weeks no eye rolling movements
• Still drooling, mouthing objects
• walking is improving – Balance is good. Dr. B considers her gait to be wide (which is a symptom of various disorders)
• Speech therapy with Debbie is not proving to be helpful
• Issues with heights and changing on anything other than the ground – develops panic attacks
• Night terrors have gone in the last 3-4 weeks. She is going down at night a lot easier these days but still requires less sleep than most kids her age.
• Increased appetite – early morning and at dinner.  She is having 3-4 bowel movements a day
• Groping herself frequently
• Still loves to flip books and picture albums
• protruding tongue (last week), mouth is open a lot
• Attention span is okay – normal for a 2 year old child

Open Items:

1. Any formal feedback on test results (EEG)?
2. Referral to ophthalmologist (Reilly had droopy eye lids)
3. Likelihood of Angelmans? Note made on the side of the page “I want/need HOPE that she does not have Angelmans”
4. Next Appt
5. Reilly’s Weight

Million smaller successes

For Christmas my sister gave me the book Wild: From Lost to Found on the Pacific Crest Trail by Cheryl Strayed. I have no idea why I hadn’t heard about it before receiving it,  for it is totally a book that I would have chosen for myself. Thankfully my sister knows that and created the connection that was definitely meant to be.  I am only 1/4 of the way through and can’t stop thinking about since I picked it up for so many different reasons. One reason that stands out is that I am actually envious of the backpacking journey that Cheryl went on back in 1995. It sounds grueling, mentally and physically, but yet at the same time it sounds so attractive for those same thoughts. Crazy I know.  Maybe I too am longing for such an opportunity to escape (temporarily) as if going through such hardship will allow me to bring back greater clarity and wisdom to my life.  As much as I don’t want to admit it, I know I don’t have to go through such hardship to start addressing things here and now. Somehow I need to find the faith that is within and let it guide me forward.

I was also riveted with Cheryl’s relationship with her mom, especially in the last months/weeks of her mom’s life.  Although I currently have a good relationship with my mom, it is not close or free like the relationship Cheryl had with hers.  There is too much history and differences in place to really change the course of our relationship but as a mother myself I am committed to forging a closer bond with London than I have with mine.  The challenge I see is trying to develop a healthy intimacy between London and I over what will hopefully be the many years to come while giving her the skills to overcome life challenges.  In Cheryl’s case, her love and dependency on her mom was so great that when her mom passed away it made her lose her way and took her off course.  Not many people can go off course like Cheryl did and come out the other end relatively intact.  In the end, I want the best of both worlds for London, to develop a mother-daughter love that is so strong and fierce that I can play a pivotal role in her life but one that doesn’t drive her off course in a destructive way should she bump into a roadblock or obstacle.

In an interview that Cheryl gave while recently promoting her book, she provided a great comment in response to one posed to her that alluded to her overnight success….”My success this year is built on a million smaller successes — things like the fact that I found my way to college and stayed. That I kept writing when it would have made sense for me to be more practical about how to earn a living.”   It is interesting that all of us are leading lives with millions of smaller successes and how some people are so resolute in the path they should be leading.   I am not sure if it is simply faith but rather a combination of things – faith, trust, hope and love. I know in my life I have almost always taken the safest most practical route based on what I should be doing.  If I want a big life, I need to take some risks and get over the fear of failing.

Christmas Eve story – a connection to the past

Today is Christmas Eve day and I was forwarded an article that was published in Saturday’s Toronto Star called a  “A Christmas story: When Murphy met Baby”  with reference to Pembroke: 1963.  I was mildly intrigued given that I have family roots in Pembroke, Ontario (born there but raised elsewhere,  parents were raised there and my grandparents lived in Pembroke to their final days).  Admittedly the article didn’t draw me in immediately for it was about a religious cab driver in Pembroke who drove Norman Benjamin Yakubowitz, a prize fighter on the lam, to Rochester, New York Christmas eve.  I thought it was simply forwarded to me simply because it had the Pembroke reference, especially since I have recently returned from Pembroke after attending my paternal grandmother’s funeral.   I continued reading it though despite having no interest in boxing legends or crazy zealous cab drivers for I must admit I have a penchant for reading about stories from the past, specifically about a time and place where my family was from even if it meant a quiet little town called Pembroke.

Now where this gets a little interesting for me is when the author references the encounter with the Chief of Police in the lobby of the Pembroke Copeland Hotel. Apparently he was out for a normal stroll on Christmas Day eve and stopped in to say hello to all the patrons, I assume as part of his regular patrol duties. The Chief of Police is referenced as being an athletic man who enjoyed playing recreational sports. Well I am 99.9% sure that the man being referenced was my dad’s dad, my grandfather. My grandfather, Bert Dickie, was Chief of Police for 21 years and is notoriously known for his friendly charm within the community and athletic feats.   In 1963 he would have been around 40/41 years of age.  My dad would have been 14 years of age at this time.   The article does not name the Chief of Police outright ‘for reasons that will soon become apparent’.   As the story goes,  Yakubowitz a.ka. Baby Yak struggled to get out of his chair to go to the bathroom due to the cast he was wearing that covered his entire leg up to his waist. A cast that was needed as a result of getting shot by most likely a Toronto area mafia hit crew.  Anyways the awkwardness of the cast made him lose his balance and in the process out fell a .38 caliber Police Positive Special revolver from his jacket onto the floor.

According to the story, everyone fell into silence and probably taking advantage of the awkwardness,  Baby Yak asked my grandfather to pick it up for him; which he did.  Baby Yak then proceeded to his room where he packed up his stuff to leave town.  That is where he met Murphy, the cab driver, who agreed to drive him to Rochester, New York.  The interesting thing about this story besides my family connection is that Murphy was feeling quite lonely leading up to the Christmas holidays but his only close family,  his sister, lived in Rochester, New York of all places.  What were the odds? In the end Baby Yak found a new safe haven to hide out and Murphy got to spend Christmas with his sister, a fate that would never have been predicted or even contemplated if Baby Yak’s revolver didn’t fall in front of Pembroke’s Chief of Police. Talk about the Law of Attraction unfolding for Murphy and me in some ways as it is another reminder how this world works.

How far would you go to the ends of the earth to help your child?

I would like to think I would go to almost any length to help either one of my children live a better life, especially if their health is at stake, but I know there are some limits to this. Especially if it means I need to throw off the family balance to such an extent that it compromises the well-being of everyone else to a long-term detriment. Sometimes as a parent you don’t always know when you are going too far in one direction until you are already there and then need to figure out how to repair family relationships.

So far I think my husband and I have been able to find a decent balance in the last few years but there is no question we need to make some tweaks. What comes to mind as I write this is a Bosu ball, where the Bosu ball represents trying to maintain the family balance.  On a Bosu ball you can shift your weight in one direction which would be the same as someone in the family taking or requiring more energy then the other sides but then there comes a point where you try to take a little more at the expense of keeping your balance and you have no choice but to step off or fall of the ball. Life is no different.  I think it is unrealistic to believe that you can sit perfectly on top in the centre, equally balancing everyone’s needs within a unit of time.  Within a day, week or month there are going to be different shifts in focus but the key to maintaining overall balance is whether the shift stays one-sided or whether it shifts constantly.

Some of the changes we need to make concern Reilly. Up until now I can honestly say that despite her challenges she is a happy child and I could almost bet my life on it that should she be able to communicate to us right now, she would confirm that we have been as inclusive as you could be given the circumstances and that she feels our love in spades from the moment she wakes up to the minute she closes her eyes to sleep. Plus the care and compassion we extend to her during her repeated night-time awakenings despite the impact it has on our lives. Having said this I think we could do better and that is why we are considering moving to Calgary. Calgary appears to have far better school programs, after school care options, and summer programs that Reilly might be able to take advantage of.   It doesn’t hurt that Alberta also offers financial support to families with special needs children, unlike Ontario. Although Ontario has something called Special Services at Home which we are qualified to receive, in our region they have no money and we have been on a waiting list for almost 5 years now. So at the end of January we will be making a visit to Calgary to review some of the schools that might be an option and to see the city again from the view of potentially moving there. It is both exciting and daunting at the same time, especially when I hear it is -32 degrees celsius right now when it is only -1 here.

The good thing with this potential move is that London would not lose out on opportunities and might even be better off as well. Of course the downside is that she will have to go through the process of making new friends which I never wanted her to have to do but given her age (soon to be 6) I think she will prove to be more than resilient.

Redefining what is important

On Tuesday morning I got into work early but mentally I was not ready to get into the day as I was still reflecting on Reilly’s neurology appointment from the previous day.  I started surfing the net catching up on the latest news from around the world and then found myself googling ‘Rett Syndrome Blogs’. I have no idea what I was trying to accomplish with this search and truthfully it was almost no different then me typing in yahoo.ca for I have done this numerous times in the past just to see the new stories out there about other families going through the same heartbreak and small triumphs in the world of Rett Syndrome and special needs.  It is interesting to note the change in available information over the years because of technology.  Reilly is going to be 8 in April which is hard to believe on one level but at the same time it is not really that long ago that we were in the phase of figuring out what Rett Syndrome was all about and what it might mean for her and us over the years.   There were very few blogs and websites available back then but now there are so many opportunities to connect with others, which is great.

On Tuesday I innocently clicked on one particular blog site.  I honestly thought that it would give me a chance to kill a few more minutes before I had to start my work day. I never expected in a million years that it would change my life and thus Reilly’s.   The impact was immediate, huge and overwhelming.   It is similar to driving along on a familiar rode with no cares in the world and you look down at your radio to turn the dial and then look back up but too late, you have just driven into the back of the car ahead of you.  I personally have never done that but have come close and the wave of emotion is no different than what I felt after finding this website.  The difference is that it took me a little deeper and I started balling. For those that know me I rarely cry but reading what was on this site broke me down.

Reason being? This blog site was about a young woman with Rett Syndrome but she WROTE all the posts except for the last couple for unfortunately she passed away this past August. Not only did this young woman write on this blog but she also composed music and wrote at a level that rivals anything I could ever think or write and I am considered able – mind and body.  For any parent who has a child with Rett Syndrome this is beyond huge and is quite overwhelming for almost all of our girls are written off as having a cognitive level of an infant due to their inability to express any form of communication.  Admittedly I too have dismissed Reilly as having an advanced intellect.   When people inquire about Reilly and I inform them she is non verbal they still expect her to be able to communicate. I don’t think they truly can grasp that she has no way to indicate her wants, desires and needs through any form of common communication methods except by following her eyes and really paying attention to where they land or trying to distinguish the different squawks or cries.  But this site changes everything! There is no question the road ahead will not be easy and in fact I am sure it will be painful for all of us but it is one that I need to go down for Reilly.

Thank-you Karly for giving me the greatest gift a mother could ever ask for – hope!  Here is Karly’s blog site that is a must read for everyone.

Deep down I know that finding this blog site was not a fluke or a coincidence but rather the Universe did its thing and attracted it to me with great force.  It is my choice whether I pay attention to the message but paying attention I am and then some.   Honestly finding this site has changed my life and ultimately will change Reilly’s. It already has.

Kids say the darnest things

Last week London told me she has a new classmate who doesn’t speak English. I inquired where he is from and what language he speaks and at first she wasn’t sure. She has since told me that he speaks Russian and is in Junior Kindergarten (JK). I asked her whether she and her other classmates have made him feel welcome and encouraged her to make sure she includes him at lunch and during the various play activities. This little boy seems to be settling in nicely at least from London’s innocent perspective. I can’t imagine being in a new environment and not being able to understand what everyone is saying and of course this exact scenario may be playing out with Reilly. I hold hope that she understands everything we are saying and over time we can figure out a way to allow her to communicate with us.  It certainly tears at my heart that she has no way to communicate with us. A big sigh.

Last night London brought up again this little boy who speaks Russian and we started to talk about other people who know more than one language. She said quite proudly that we also speak another language too. I asked her what language for we only speak English. She quickly commented Spanish and proceeded to count to 10  in it. I laughed and said there is a lot more to speaking another language then being able to count to 10. Man she is cute.

Settling – What would you attempt to do if you knew you could not fail?

Why do so many of us stay in jobs that are not fulfilling? or work environments that are so dysfunctional? Ultimately these two points are very different but in many ways are interrelated at least for me. I have been working with my current organization for over a year and a half now and it has not turned out to be the opportunity that I originally thought it would be or presented to me in the courting stage. I can count the number of conversations I have had trying to make sense of where I am at and trying to understand by leaving whether this means I have failed and should have been able to succeed. In my heart, mind and soul I know the answer is no, it does not mean I have failed and that it is okay to move on but I guess the high achiever in me keeps thinking if I approach the problem from another angle maybe the  chances of success will be better.

So it was fitting to receive a wake-up call last night in the form of a seasons greeting note that made me sit up straighter this morning. In this note, the person reflects on when they look back on their career, in this person’s case 42 years, how fortunate they are to have been able to do something they so dearly love and share this love and passion with others. Of course I am so happy for this person but her words stung like cold rain on the face. I want those words to be my words, not the exact vocation this person chose but to be able to say at various points in my career that I am doing something that I really enjoy. Of course there are always bumps and turns but overall to have that level of satisfaction of following a path that is true to the desires and values of yourself as an individual. I am sure I couldn’t find one individual who wouldn’t want this but then why do so many of us settle?

I started to look around my office as if the answer was somewhere beyond my desk when I saw looked at the two framed cards on my windowsill that have been gathering dust.  One  that I reference in the title of this blog post is “What would you attempt o do if you knew you could not fail” and the other one is “Grant me the serenity to accept the things I can not change, the courage to change the things I can, and the wisdom to know the difference”.  To read these again followed by this seasons greeting note is quite fitting.  By staying with what I am doing would not be in line with these messages and I need to act.   And in doing so…. leaving this situation might mean on some level giving up but this needs to be viewed as a positive move, one that will allow me to work towards a future career where I have a great chance on being able to reflect at some point how grateful I am to do something I love (at least for most of the time).   Thank-you Universe!