Moving Forward

 

“We must be willing to get rid of the life we’ve planned so as to have the life that is waiting for us.’ –  Joseph Campbell.

I just came across this quote and it is a very timely reminder, especially since I just crafted the following as part of a presentation I delivered on Saturday:

When our daughter was diagnosed with Rett Syndrome at 3 years of age, I can’t count how many well-meaning friends and family members sent us the Welcome to Holland poem by Emily Perl Kingsley as a way to help us deal with the new world that faced us.

How many of you might have read it?

In this poem, Emily likens the eager anticipation of having a child to the exciting anticipation of an upcoming trip to Italy and she likens the discovery that your child has a disability to unexpectedly landing in Holland, instead of Italy. She implies that Holland is simply a different destination –an equally pleasant destination, with its own interesting sites and activities for you to appreciate and enjoy.

I don’t know about you, but when I first read this poem “I laughed and then cried, finally screaming — “Holland, I only wish. My plane landed in Detroit.”

When your situation more accurately resembles the dark side of Detroit – the crime, corruption and decline –  it can be very difficult to appreciate that Detroit might actually have some bright spots.  It is very easy and even understandable to get stuck or trapped in the unfairness and hardship of what this life might mean for you and your family– the sacrifices, the compromises, and the injustices that are involved.

Although in my mind Emily’s analogy trivializes the true experience many of us face when our child has special needs, it is in our best interests to look past this and recognize that  the real value in her message is in helping us see that we need to move forward and try to make the best of our situation no matter where we might have landed.

We are 9 years into this journey and I think I am finally at the point where I can really move forward, and leave what our lives should have been and could have been behind us. It is almost like shaking off the final bits of resistance that our clinging to our clothes but these little pieces carry so much weight.  I don’t think I will be able to explain completely why I feel that today marks a real divide between the past and the future, but it does and it actually feels great.

In letting go, it doesn’t mean I am not allowed to grieve or become frustrated with our situation but the difference will come from current issues and challenges rather than having deep roots to what should have been.

 

 

 

Why Part-Time Work is not necessarily the answer for Work-Life Balance

Source: http://www.philstar.com/health-and-family/2012-08-02/834128/work-life-balance-too-important-be-left-hands-your-employer

I often thought that finding a Part-time job was the answer to our challenges.  It would allow me to bring in additional family income, keep my head in the work game, and allow us to address the lack of before and after school care options for our severely special needs child.  My search attempts were futile though as the only part-time job opportunities I could find were marginal jobs that wouldn’t get us that much further ahead.

In some ways it is just as well, for even if I did find a satisfactory part-time job in my field, I am pretty confident that my stress levels; which are already high, would go through the roof and take on a new meaning that wouldn’t be pretty for anyone around me.

The reason being is that unless you live in the Netherlands, working part-time does not actually alleviate time pressure for most women but rather increases it. Here is why, just imagine this scenario…. The husband is the primary breadwinner in the family who often is expected to work long hours and sometimes even travels, the wife works part-time and they have a couple of young children.

In this scenario, who do you think takes on the primary responsibility for coordinating any childcare requirements – dealing with a sick child, appointments, extra-curricular activities, play dates, lunches, field trips, etc., and the household logistics – meal preparation, grocery shopping, cleaning, etc.,?

In most households it is the woman who shoulders most of these responsibilities because she has ‘extra’ time given her part-time status.  This does not mean the husband does not ‘help-out’ or take on some of the care giving and household responsibilities but study after study reveals that it is the woman who typically carries the weight of the family when working part-time.   As a result, leisure time is often scarce for these women and when they get it, it is often scattered, interrupted by work, household duties or children. Men, on the other hand, often have more leisure time and enjoy longer stretches of unbroken time.

So what is the answer – not working at all or working full-time? I am not an advocate for woman to opt out of the workforce, especially educated woman, as the answer or solution to deal with the many challenges associated with raising a family in our western society. Instead, I advocate that both parents should have the option to work full-time in meaningful professions. To accomplish this though a huge shift needs to happen that involves changes to many workplace cultures, government policies, and cultural attitudes; which ultimately translates into men taking on more household and child-caring responsibilities, decreased working hours for both women and men, affordable child care options, and a huge cultural shift in values and priorities.

It can be done and Denmark is one example where over 80% of women with children are employed, most with full-time jobs and they have just as much leisure time as Danish fathers, and more leisure time than others in any other country.

Since it is not in the cards to move to Denmark or the Netherlands, nor can I wave a wand and make the necessary changes within our society, I do believe that there is room for improvement within our household on how we can tackle this desired work-life balance.

 

 

 

 

 

 

 

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.

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.

 

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.

The Storyteller

Despite not feeling well yesterday I dragged my sorry butt out of bed to run a few errands, one being to Costco.   Even though I didn’t need to go down the book aisle I always do for I love to see what books are available and although it takes great strength not to purchase, sometimes the act of just looking can be quite satisfying.  My will power was shot thought when I saw a Jodi Picoult book, The Storyteller, and put it in my cart without hesitation.  I justified the purchase by claiming that it would become a Christmas gift for my mom or one of my sisters, that is after I read it. I know they wouldn’t mind after I decontaminate it with my germs from being sick, lol.

Every one of Jodi Picoult’s books are incredible and this one is no exception.  Although all of her books are classified as fiction, the moral issues/dilemmas are so real. So real that many of us can connect first hand to at least to one of her stories if not to all by wondering what we would do/how would we react if found ourselves in the shoes of any of her characters.

In the Storyteller, Picoult weaves in the past of the Holocaust with such incredible detail that at times I wish that this part of the story was simply a figment of her wild imagination.  Despite having read so many stories in the past about what happened during this time, it is always difficult to comprehend the extent of what transpired. The evil as well as the incredible resiliency demonstrated by so many victims.

While I was reading this particular story it never triggered for me what position I would have taken if I were on the German side but rather the fate I would have had being a parent to a special needs child who ultimately would have been targeted during a round-up. A fate that ultimately wouldn’t have led to any subsequent stories.

 

 

 

Look Mama, I have grown another inch today!

We have the ability to measure tangible things, such as one’s height or weight,  the mileage one has run in a week, or how much more weight can be lifted at the gym, but we have no tool that we can hold in our hands that can measure our growth.  Well, tool or no tool, I can say with certainty that I have definitely grown at least an inch or maybe even two, conceptually speaking of course, in the life department. It is a great feeling indeed!

Now what brought on this weigh-in so to speak?  A Ted Talk, two actually. One by Stacey Kramer and the other by Jane McGonigal.  Stacey talks about how a rare tumour became the greatest gift she ever received.   Given that she couldn’t change what happened to her, she recognized she could change how she reacted to it and saw it as an opportunity to create a new and meaningful life. One that involved recalibrating what is important, developing a new understanding and trust in her body, expanding her vocabulary in directions that were never even imagined, developing closer relationships with family and friends, as well as, meeting new people. Her medical crisis ultimately challenged, inspired and humbled her all at the same time which allowed her to further develop her life with new meaning.  Her message to anyone experiencing adversity in any form, that when you face something unexpected, unwanted or uncertain view it as a gift.  One can argue that having a child with severe disabilities falls within this domain and although it has been tough at times, I can share Stacey’s experiences and sentiments that the best way to view this adversity is in the positive. Again admittedly I sometimes need to be reminded of this, hence the Ted Talk.

Stacey’s attitude and approach in dealing with her ‘gift’ is a perfect example of how we are evolving in the emotional intelligence department to not just survive adversity but thrive on it.  In the psychology world, they have even come up with a new term called Post Traumatic Growth to illustrate “how adversity can often be a springboard to a new and meaningful life in which people re-evaluate their priorities, deepen their relationships and find new understandings of who they are.” (2013, Huffington Post, Joseph, Stephen).

Like Stacey, Jane also turned her medical situation into an opportunity for personal growth.  Her experience in overcoming the adversity that faced her led her to identify 4 areas of strength that everyone should foster to allow them to more effectively deal with a challenge should it present itself.  The 4 strengths include (1) physical –  exercise,  mental – learning, problem solving, game playing, reading, etc., emotional – positive interactions, goal setting, etc.,  and social – practice of gratitude, healthy touch, trust of oneself, etc.

Many people wrongly assume that resiliency is a trait of an individual, something you are born with or not, or can learn by doing a series of exercises.  Instead of it being a specific skill or a trait, resiliency is rather a process, albeit, a dynamic set of on-going processes that must be actively nurtured and pursued to give an individual the means to not only manage adversity but overcome it. I will define overcoming it to mean that someone can live a positive and meaningful life despite an adverse situation/event.

As a parent, one of many, whose world has been rocked and continues to be rocked by the challenges that come with raising a child with severe special needs, I can honestly say with open arms and heart that I have been given an incredible gift to cherish and grow.  Truthfully if I don’t embrace this way of thinking into every fibre of my own existence then the alternate way of living is dark, depressing, and rather shallow in opportunities.

My advice to anyone who sometimes finds themselves retreating back onto the darker path of a given trauma, illness, accident, grief, etc. to muster up the strength to remind themselves of the good that has come out of whatever has been experienced – what new and valuable relationships have been strengthened or developed as a result, what new skills have been developed, what new opportunities have you experienced that you wouldn’t have been exposed to or even considered before, and what else can you do to make the best of your situation.    Unfortunately life isn’t fair and once something bad has happened you can’t turn back the clock and I don’t think many people have had much luck with retribution, so really there is only one way to succeed going forward, and that is to cherish what lies ahead, knowing that you have the personal power to not only survive a negative experience but thrive.  To do so it is key to build on those 4 areas of strength – essentially these are the 4 pillars of life that will allow you to leap to a new level of growth.

Blessings can come in small bottles

Just when you think you are falling faster and faster towards rock bottom, a current comes up from underneath, sometimes from out of nowhere, to slow you down.  This current doesn’t necessarily stop the pending fall but sometimes it puts on the breaks enough that you can start to climb back up towards the opening and resupply yourself with what you need, before a downward current pushes you back towards the bottom.  So far we have never reached the top since having kids but we have skimmed the bottom a few times.

Thankfully though we have become some-what experienced on how to protect ourselves as best as we can within this hole of life but sometimes we are at a loss.   We know to wear extra layers, and to keep a surplus of food and water on us in times of need, and you would be amazed at how having a sense of humour can ward off the risk of falling further.  We have even been great at building walls around us to overcome the idiots that we sometimes face along the way.   We even see the value in sending London to rock climbing lessons with the plan that she can hopefully teach us a thing or two about effectively navigating the course of life.  She is learning to belay, unfasten the hooks, problem solve and through all her lessons and experience to date she has repeatedly made it to the top.

Now the recent upward current that has given us a break comes in the form of Acetyl-L-Carnitine. For the last few weeks Reilly fell into an awful sleep pattern of easily falling to sleep but then would wake up literally several times throughout the night, sometimes it would be for an hour or two at a time.  It became so bad that Mike and I would agree to take turns sleeping with Reilly and the other could go off to the spare bedroom, close the door, and try to get one good nights sleep every 2-3 nights.  On top of this, Reilly was refusing to eat a lot of foods that she previously enjoyed.  The list of tolerated foods by Reilly was becoming smaller and smaller, where you could start to count the acceptable items on one hand.  Her hair was staring to fall out and we had one foot out the door in taking her to emerg and demanding a G-tube.  The last thing we ever want to do. We strongly suspected that her eating and sleeping were tightly related and weren’t making much progress on either front until a call was made to our former Ontario doctor about another issue.

Sleeping and eating were not uncommon issues associated with Reilly over the years but when I mentioned the latest symptom of hair loss, it triggered the suggestion to consider adding Carnitine into her diet. Apparently when you take Valproic Acid, which she has been on for 4 years now, it could trigger hair loss due to insufficient levels of Carnitine.

We have introduced Carnitine a week now and the bottle says “a minimum of 3 months may be required before observing an effect.” Not sure what specific effect the company is referring to for it is supposed to help with a range of different issues including reducing fatigue, supporting cognitive function in the elderly, maintain cognitive function during aging and relieving pain with diabetic neuropathy, etc.   All I can say is that for the past 4 nights, Reilly has slept through the night and we have as well.  Yahoo!  The first night this happened we were so startled and ran to make sure she was still breathing.  Moreover, her appetite has increased dramatically.  Again the timing of these improvements may just be coincidental but this supplement is the only thing we have changed and you just don’t go from weeks of being in one extreme to a major breakthrough without it being related to something.

Admittedly I didn’t do much research before giving it to Reilly for we were fairly desperate to turn things around.  I did read somewhere that it can aid sports performance, hmmm maybe I need to start taking some.  In the mean-time I am grateful for this little particular current that has stopped the free fall path we were on.