Different Shades of Purple

Today is November 17.  It is one of the coldest days in my area of Canada so far and the snow began to fall lightly this morning.

In I went to work, armed with some purple icing covered cupcakes and all decked out in my favourite purple sweater.  In came my colleagues.  Hiding under their winter coats, which have recently been pulled out of the darkness of their closets, were different shades of purple.

We had colours of plum and eggplant, magenta purpley-pink, mauve and even some Barney The Purple Dinosaur purple...and some pink, because that's close to purple, right?? :)

By 9:00 there were several of my colleagues, also my friends, proud to wear purple to support the First World Prematurity Awareness Day.


By about 9:01, there we all were hovering around the kitchen table chowing down on purple coloured cupcakes with baby blue and pink diaper pins adorning them.

By 11:00 as many of my co-worker buddies were rounded up as possible--hard to do when we are scattered throughout the building and doing various things during our busy days--and we posed for a pic.

Through the tough times my family, friends and co-workers stood by me.  My new co-workers who arrived on scene after I made my quick exit from my work duties when my twins arrived 13 weeks early, have come to know my story and support me equally.  It is amazing to have such a support network and I can't say thank you enough.

These are people who went on the rollercoaster with me while my kids were in the NICUs.  My husband and I were sitting in the front seat of the rollercoaster, while my family, friends and colleagues may have been toward the back of the rollercoaster and perhaps not feeling the same impact of the ride, but they were right there for the entire ride with me. Laughing, crying, screaming, praying, hugging and supporting me and my husband until the rollercoaster ride came to a halt.

Then we jumped off that rollercoaster and got right onto a new ride, taking us in the direction of home, which still has many ups and downs, bumps and jolts, but it is where we want to be and it couldn't be more exhilerating!

Not a day goes by that I don't feel thankful for the wonderful work of the neonatologists, the nurses and NICU staff that got us through that ride safe and sound. 

We, as preemie parents, also have to thank organizations like the Linden Fund, here in Ontario, Canada, and the wonderful March of Dimes, that have gone to great lengths to get funding, supports and assistance for premature children and their families.  This can be one of the toughest times a family can face and these types of organizations found all across the world make the "ride" feel a little saner.

Thank you for recognizing and raising prematurity awareness today and every day!

Diaper Backward Spells Repaid...

Diaper backward spells "repaid." Seriously.  I'm being repaid twofold! I must have really put my parents through a lot of crap during my diaper days!

I have been told many a time that as a toddler I used to take off my diapers aftering waking from my naps and would proceed to wipe the poopy ones on bedroom walls at home and the babysitter's.  Oh my! Gross.  I proceeded to teach my younger brother how to carry on the tradition when he was capable.

Talk about karma!  Once the babies were home we were going through about 16-20 diapers a day. It got to the point I was dreaming of diaper change times because that's all it seemed I was doing in the early days.

When it comes down to it, diapers have been a big part of our lives.  I'm not sure that everyone gets excited about the first time a diaper is put on their baby.  I do know that as new parents many are afraid or not sure how to change their baby's first few diapers, but most dive in and figure it out.

When it comes to the NICU experience, a diaper is not always the first thing put on a baby.  Instead it's leads and monitors and sticky tapes, breathing apparatuses and who knows what else? Then the diaper might come.  There may not be a diaper that actually fits this "newborn" baby.



The Stages of Diapers of the Twins: Preemie Small, NB, 1, 2 & currently in 3.
You can see the # "7" written on the Preemie diaper on the left, which I explain in this post.



In all 3 of my cases, my babies were born suddenly and in an ill-prepared hospital without a NICU on site, therefore there were no teeny tiny diapers to put on their tiny new bodies.  In each case, however, the size of the diaper was the least of anyone's worries.

Preemie #1 was transported to an appropriate unit and one of my first memories of him was him spread out on a warming bed in a very big diaper, pretty much swallowing up his lower body and torso.  It was on very loose to avoid irritating his premature skin.

If I thought Preemie #1 was swimming in his first diaper, I was rudely corrected when Preemie #2 and Preemie #3 arrived.  These two were more than 2 pounds less than their big bro.  Finding ourselves in the "wrong" hospital again, they were not equipped with anything less than the standard newborn diapers.

Once the twins arrived at their NICU, on went the tiniest diapers I have ever seen!  Pampers Premature Small.  Wow.  It amazed me that diapers were made this small!  These diapers weigh 7 grams.

How do I know how much a diaper weighs and why do I know this??  Well, in the NICU a baby's bodily functions are monitored every 3 hours or less.  The nurses in the unit will hand write "7" or whatever the weight of each diaper on the front to indicate how much the diaper weighed before the baby did his business in it. 

My Cabbage Patch Kid "Preemie," Circa 1985.
His leg is the same size as my 2 lbs Preemies' diaper!
The "Preemie" is in a NB size diaper rolled up.

Why would we want to weigh the diaper after the baby has worn it?  To be pretty certain that the baby's fluid intake and urine output are balanced.  Bloodwork and other assessments are carried out too in order to monitor the baby's nutrition, but one of the first obvious indicators of  problems appears or does not appear in the diaper.

When it comes to changing a premature or NICU baby's diaper it can be outright terrifying for the parent.  As premature babies' parents we are facing wire leads, tubing, monitors, machines, sticky things, tape, and a fragile baby connected to it all.  We must stand outside the incubator, putting what are most likely gloved hands and arms through two small access holes to be able to work with the baby.  It sucks learning to change a diaper for the first few times for any person or parent, but throw in an incubator and the awkwardness of manoeuvering through all of the wires and the fear of harming the baby and it can be a pretty terrifying, albeit very memorable experience.

Tonight I'm reminiscing about diaper changing for a particularly good reason.  This month is Prematurity Awareness Month in the United States and November 17, 2011 is the First World Prematurity Awareness Day.  A fellow preemie parent is currently working on "40 Diapers. 40 Days," to help create premature birth awareness and raise funds for a NICU in Haiti.  She is painting 40 diapers and taking donations and a silent auction will be held at the end of 40 days.

I know what a scary and trying time the NICU process is, but can only imagine how much more difficult it would be living in a situation where a NICU is not the norm and most likely unattainable for most babies born too soon.

If you can, please visit her site at http://www.thepainteddiaper.com/ and support her along the way.

This Thursday, November 17, please wear purple to show support and help raise Prematurity Awareness!  It's not talked about enough.

Thank you.

Liebster Blog Award

So after a few moments of thinking about it, I confirmed in my head that, yes, it definitely is Wednesday.  I seriously had to think about this for a few minutes and confirmed it by seeing what was on the T.V. tonight.  If Modern Family is on, I know it's Wednesday.  Unfortunately, I didn't actually get to catch the show, as my oldest son was just settling down for the night at the beginning of the show.

So given the fact that it is Wednesday, I considered making this my very first "Wordless Wednesday" post...BUT I figure my opportunities to get on here to blog have been few and far between since getting back into my full time job (aside from my full time job as Mommy,) so I want to make full use of my time...nevermind that it happens to be Wednesday.  My first Wordless Wednesday can wait!

Then I realized I could have a "Wine Down Wednesday," but there is no wine, so I settled for a hot chocolate and a wordy blog.

Way back on October 7, I received a comment from a fellow blogger, Sharon, at http://mammadoitall.blogspot.com/, who let me know she had awarded me with the Liebster Award for bloggers.  She listed me with four other bloggers, as blogs she was enjoying reading and following.  How nice is that?  It really did put a smile on my face to know that a woman in Manhattan, a journalist, was enjoying my writing and passing it on.  So I am going to pass it on now...but it is going to be a two parter (mainly due to lack of time tonight.)

The following blogs are ones I enjoy reading when I get a chance and I hope you'll check them out too.

Changing Diapers and Taking Names at http://findingbrittnemo.blogspot.com/

This blogger hosts Blog Hops, which I love, as do many other bloggers out there.  Blog Hops for those that don't know are intended to help bloggers find other bloggers within their own niche or other interests/hobbies.  She also has a Mom of the Month tab, on which readers can nominate extraordinary moms. Very cool.

Mom is the Only Girl at http://momistheonlygirl@blogspot.com

This is a fun mother, who makes life interesting for her two boys.  It seems like she and her husband set out to teach their boys something new every day in fun and interesting ways.

A Mommy Blog Design Studio at http://www.amommysblogdesignstudio.com/

This is a business, however, I do like her blog posts on the topics of how to make blogs work, especially for all us mommy bloggers out here.  Not only does she provide good information, but she also has fun designs and blog packages that can be purchased.

I'm going to name two more, but not now...it's 11:30 and I am exhausted!

Social Media/Work/Life Balance

It used to be those that work had the goal of having "work/life balance."  Meaning we all strive to have a job and also be able to have a life outside that job.  Just when I think I get a handle on this concept and have a pretty good balance going on, in comes social media and all its distractions and interesting things to read, comment and blog on.

I have been pretty in tune with computers, Internet and the ins and outs, fads and changes of social media since the early days of Internet useage.  I have had the pleasure of working for two very well known computer software and telecommunications companies, giving me even more opportunity to learn about the emerging technologies, all the while being paid to do it.

I remember getting excited when Windows 95 came out and getting a new computer with it installed.  I remember getting dial up and my very first email address.  I remember my first hotmail account, which still exists and is used often.  I remember ICQ and all the chats that stemmed from it and the ability to start conversations, drop them and return to them days later like it was nothing.  I had Yahoo Messenger, MSN Messenger, AIM (AOL,) and ICQ running pretty much simultaneously and it was becoming the norm to chat online rather than chat on the phone.  These were all a sign of many things to come.

I started using Facebook in 2007 and I think I was a pretty late bloomer on that.  I tried to put it off and "rebel" against the latest thing, but eventually I began using it to communicate with close friends and family about upcoming wedding plans, and then plans for baby, and so on.  It quickly became the quickest and easiest way to connect with a number of  people, rather than have to make numerous phone calls or emails and hope that the message would be recieved.

This year I have created a blog, setup google +, started perusing Pinterest, created a Facebook Page (but haven't done anything with it yet,) and signed up on Twitter.  Can you say, "information overload?"  Yet this is the new norm.  It's a little bit crazy when you think of it and it can become overwhelming to some.

For me, information is power.  I enjoy taking on these challenges and learning as much as possible and then moving on to the next interesting thing.  The downfall is that there are so many new, cool things going on, it's hard to keep up!  That's when it can become overwhelming.

This is where social media/work/life balance come in.  I began my blog while off on mat leave and able to take a few minutes to write during quiet time during the day when babies were sleeping or after they'd gone to bed in the evening.  I could post 2-3 blogs per week if I felt like it.

I have been back to work almost 2 months, and let me tell you, opportunities to blog have become very difficult to find during my hectic day.

Monday to Friday look like this:

Wake around 5:45 or 6.

Get all 3 kids out the door by 7:45 (Hubby and I might have eaten, but probably not!)

Drop off at two different daycares by 8--One car goes one way, the other car another way.

Get to work by 8:30.

Work till 5:00.

Pick up kids by 5:30.

Get home, make dinner, eat dinner by 6:30 or 7:00.

Play with kids 7:00-8:00.

Get kids in bed 8:00-8:30.

Maybe login to FB and check out what's up in my social world 8:30ish

Around 8:32 realize I can't sit down because there are at least 6 bottles/sippy cups to wash, dishes to be cleared from table and thrown in dishwasher, etc., etc.

Around 9:15 the above might be done.  My back may be killing me.  This is when I may get myself back onto Facebook or set myself up here infront of my blog.  Or maybe I will actually try to watch one tv show in full, without interruption...but probably not!

Right now I can see that there is a serious imbalance between social media, life and work. 

I'm working on it!  I've been able to attend two workshops in the past week on the topic of blogging and Facebook for business.  The facilitators suggest at least 2 blogs per week to maintain a blog.  I would have to agree.  It seems like it might be hard to do this every week, but the bottom line is I am answering to myself and a blog for me is something to be enjoyed and not felt as though it's another "job."  I met a lady this week who said she had a "mommy blog" for four years and finally decided to give it up because it was taking her away from other things, especially family, and she became overwhelmed.

I don't want to get to feeling like she did.  I am now thinking forward about how I would like to see these three great parts of my life balance out and each part be something I can enjoy and bend and flex with, as times and needs change.

To be continued...

Occupational Therapy and TOYS!

I have found myself infront of the computer again tonight because the eldest boy has taken over and has his cartoons on the TV before going to bed.  This is my way of tuning out the same cartoon he's seen at least 10 times!

I've said before that I'd rather browse around online, read the news, the daily gossip, browse other blogs and whatever else I stumble across.  This is my way to unwind.  Tonight while checking out what's going on in the world, I learned it is National Occupational Therapist Month in Canada (and other countries.) 

Prior to my introduction to the World of Preemies, I knew the basics of what an Occupational Therapist was, but I did not know they also worked with newborn babies.  My concept of an OT was that they worked in some form of rehabilitation for individuals who have suffered illness or injury and required one-to-one help with re-learning physical life skills. 

Our first introduction to an Occupational Therapist was during our first NICU hospital stay with Preemie #1.  We met with her a few times to discuss how to avoid "Flat Head Syndrome."  Yes, that's a real thing!  The technical term is "Plagiocephaly."  Say that 5 times fast!  The OT discussed how to use blankets rolled up and positioned in a manner that would help prop him while he slept to avoid him favouring one side or the other.  She showed us how Preemie #1's head shape was showing signs he'd been favouring one side and how we could work to pretty easily correct it.  He now has an awesomely shaped head, if I do say so myself.

Our second/third experience was Round #2 in a different NICU with Preemie #2 and #3 (AKA: Twin A, Twin B.)  This time around we had very different needs, with two very different little babies.  I would say Occupational Therapy began in the very early days of our 27 weekers' lives.  The simple things like positioning the baby, draping them on their tummy in their isolettes was one of the first things done.  Positioning them from side to side, as we did with their older brother.

Then came our introduction to Hydrocephalus.  This is where the greater scope of Occupational Therapy kicked in.  Now our one boy had been diagnosed with Hydrocephalus and the OT stepped in to assist with propping with special pillows to attempt to assist with flow of the cerebral spinal fluid...I guess I should say, to help alleviate some of the swelling of the head.  

Getting ready to come home.

After our little man's first surgery, we were introduced to the "butterfly pillow," which looks like a butterfly.  The baby's head/upper back are placed into the butterfly's centre and the wings basically envelope around the baby's head, giving him a soft, comfortable place to rest his head.  Pillows aren't usually used in the NICU in the isolettes or cribs. Once the baby had his second surgery, his VP shunt inserted, he really needed the butterfly pillow.  In the first few days the baby showed obvious signs that his head hurt if we touched it or when moving him around, therefore being able to prop him on his pillow and build up behind the pillow we could angle him on the opposite side, taking pressure off his sore little head where the new shunt was.  It's amazing what a simple little idea can help with.  These are the ideas of Occupational Therapists and the families they work with.



Propped on a Butterfly Pillow
NICU Discharge Day, August 20, 2010





We were fortunate to work with two different OTs while in our second NICU stay.  The two of them sometimes would meet with me and we would collaborate and think of the best way to handle whatever situation had come up.

After surgery number two, the little man decided he didn't want to be bottle fed or breastfed and started to cough, choke, sputter, every time we attempted a regular feed, and he basically freaked me out!  This is when you could say some "hard core" occupational therapy began.  The OT scheduled during this period worked hard to help me work with the baby and think of how to overcome this latest obstacle to getting discharged from the hospital.  No baby can be discharged if they are unable to eat and continue to gain weight.

We tried smaller amounts of expressed breast milk from a bottle, we tried formula, we tried a combination, we tried just nursing, we tried just bottling...We tried thickener put in with the EBM or formula.  This boy had attitude and he didn't want to have anything to do with any of it!  The OT was so helpful and rational.  She would schedule to come in during one of his feeding times and feed him herself.  She would try re-positioning him during the feeding time.  Holding him in different ways to see how he responded.  In the long run, it was a combination of her hard work, my work and everyone's overall determination and just a matter of time for him to figure it out again.  For a period of time we chose to let him rest and he had a NG tube re-inserted to assist with feeds and help him continue to gain weight.

Eventually we all figured it out and he began to come around.  He was discharged home with a NG tube and only a few days later it was out.  Once home in the comfort of our own space, he caught on to eating well and never looked back.



Twin B Home and propped up with his new Butterfly Pillow,
courtesy of The Linden Fund.



Once discharged from the hospital we didn't lose our connection to the fascinating world of Occupational Therapy.  We had the privilege of being connected with another OT through our local community and health care program.  This OT paid us visits on a weekly basis to assess Twin B's progress and any other concerns that popped up.  She assisted him with physical activities, eating habits and other ideas to help me help him.  For example, we eventually graduated him to his high chair for meal times, along with his twin brother.  He slumped over in his high chair and looked completely lost in the chair.  Our OT came in and assisted with the best positioning and propping to get him comfortable for mealtime.  It's amazing what a coffee towel and some bath towels can do!

The concepts that OTs use at times may seem simple, but to an over-tired mother and father, these simple things to try most likely won't click in our minds.  When you think of it, the techniques OTs sometimes use, as simple as they are, aren't really things the average parent ever has to worry about and therefore it probably doesn't come naturally to most.

Eventually I noticed Twin A was definitely falling behind for hitting the many milestones, so he was able to work with the same OT in the home.  She would exercise both babies, assist with their basic motor functions and see how well they were grasping cause and effect and basic reasoning abilities.

Thankfully we have access to many options and services for our boys.  We have been able to work with a particular children's centre for development and so we have had the privilege of having two different OTs, who focus on different areas of our twins' development.

Recently we were able to part ways with our first OT who had been with us since NICU discharge.  The boys had mastered the skills she was hoping they would and they were discharged yet again.  "Discharged" is a nice word.  Music to my ears.

We continue to work with our second (technically fourth) OT, who works on both boys' motor skills, assessing their abilities and working with them to figure out new ways to teach them and ensure they don't fall too far behind.  This OT gets to play with toys and the boys.  Who wouldn't want a job where you get paid to play with toys and babies??  Although it may seem like innocent and simple playtime to the average bystander, to a mother and an OT, it is a time for assessment, planning and implementation of concepts and ideas to assist the boys in becoming stronger, smarter and capable little boys.

One of our favourite toys at OT sesssions
and at home! Simple, but fun!

I've learned to look at toys and figure out what the true value of the toy is.  Does it help my kids' fine or gross motor skills?  Does it teach them cause and effect?  Is it pretty much a useless toy, that I don't want to waste my money on?  I've found that some of the simplest toys are the best toys for playtime.  Toys don't need all the bells and whistles to be a good toy.  I never would have thought about these things without the help of our Occupational Therapists.

So this month I am very thankful for our Occupational Therapists and I'm glad to recognize October as Occupational Therapists Month! They deserve it!

Thank you Carolyn, Auna, Veronica and Herdip.  Awesome Occupational Therapists!

We Are Lucky and Thankful!

This weekend is our Thanksgiving holiday.  We celebrate with the usual turkey, ham, mashed potatoes and way too many sweets for dessert.  We are very lucky to have a big family and have at least 2 dinners during the weekend, sometimes 3 or 4.  These are the people that have provided my family of five with so much love and support that we couldn't ask for more!  We are lucky to be surrounded by such wonderful people.

When people ask me what I am thankful for, of course my first response is my three boys.  My happy family.  I am thankful for a whole list of people and organizations that never crossed my mind only a few years ago.  I am thankful for having the opportunity to learn about my children's needs and having a better understanding of what it means to be a mother.  If you had asked me this a few years ago I wouldn't have had such an in depth response or given it all that much thought.

I am also thankful for all of the connections of preemie parents, specialists, nurses and those that are interested in the goings on of a preemie family.  I wouldn't have found most of these connections if it weren't for the Internet!


Yesterday, while checking out Facebook, I read a wonderful perspective of another preemie mother on her idea of why "we" are chosen to be the mothers or parents of premature children.  She highlights the fact that as parents we take nothing for granted with our premature babies. We feel lucky and blessed to have these children to call our own.


Here is Elli Drukman's story:

Did you ever wonder how the mothers of premature babies are chosen?

Somehow, I visualize God hovering Earth, selecting his instruments for propagation with great care and deliberation. As he observes, he instructs his angels to take notes... in a giant ledger.

"Armstrong, Beth, son. Patron Saint...give her Gerard. He's used to profanity."

Finally, he passes a name to an angel and smiles. "Give her a preemie."

The angel is curious. "Why this one God? She's so happy." "Exactly," smiles God. "Could I give a premature baby a mother who knows no laughter? That would be cruel."

"But does she have the patience?" asks the angel.

"I don't want her to have too much patience, or she'll drown in a sea of self-pity and despair.  Once the shock and resentment wear off, she'll handle it.  I watched her today. She has that sense of self and independence so rare and so necessary in a mother.
You see, the child I am going to give her has a world of its own. She has to make it live in her world, and that's not going to be easy."

God smiles. "This one is perfect. She has just the right amount of selfishness. "
The angel gasps, "Selfishness! Is that a virtue?"

God nods. "If she can't separate herself from the child occasionally, she will never survive. Yes, here is a woman whom I will bless with a child less than perfect. She doesn't know it yet, but she is to be envied."

"She will never take for granted a spoken word. She will never consider a step ordinary. When her child says "momma" for the first time, she will be witness to a miracle and know it."

"I will permit her to see clear the things that I see - ignorance, cruelty, prejudice - and allow her to rise above them."

She will never be alone. I will be at her side every minute of every day of her life because she is doing my work as surely as she is here by my side."

"But what about her Patron Saint?" asks the angel, his pen poised in the air. God smiles. "A mirror will suffice.

I think this is a beautiful story and a great answer to the "Why did I have a premature baby? Why me?" which I am sure most premature babies' mothers ask themselves. 

This is our second Thanksgiving home with our twin boys and I am no less thankful than I was one year ago.  In fact, I may be even more thankful, having been able to see my babies grow another year and seeing them begin to interact with each other and their big brother.  Every day I am thankful and I tell them so.

Hydrocephalus and The Future

When we found out about our son having hydrocephalus we tried to focus on the information provided by our doctor.  We didn't alert the masses to tell them what had transpired a couple of days after his birth.  Firstly, we didn't want the stress of trying to explain what was going on, over and over to friends and family.  Secondly, we didn't want people researching the condition and scaring us with their findings.  Thirdly, we didn't want pity.  And finally, we (I) didn't want negative energy being aimed at our little boy, negative thoughts, negative concerns, the scary what ifs, and so on.  I wanted to try to remain as positive as possible, because I do believe that even 27 weeker little premature infants can feel and understand negativity.

Our direct family and a few friends were told about what had happened and our request to keep it private was upheld.  It was good to have the support of our direct family, as that was what mattered most at that time.

Eventually, we did get on the Internet and started a bit of research at recommended websites and so did our family.  The information really did freak out some family members.  Given the fact the NICU only allowed us, the parents, in to be with the babies, it was very hard for the grandparents and uncles and friends to understand what we and Baby B were going through.  How Baby B was looking, acting, family couldn't see this.  Pictures reflected a very small baby, with a very enlarged head.  These pictures were probably frightening to those who had not been able to see the baby with their own eyes and see he seemed to be fairing well.

In the long run, what we learned through information from the neurosurgeons, neonatologists and staff, was that each baby is different and hydrocephalus impacts each person differently as well.  Some babies may never be able to speak or walk.  Some babies will have long term, regular complications, whereas some babies have a corrective surgery and never have to go through it again. 

After a surgery is done to complete a shunt insertion, for example, there is the risk of infection or malfunction. 

For all of these things, only time will tell.

The neonatologist and neurosurgeons gave us stories of people with hydrocephalus growing up and living perfectly normal and happy lives.  Telling us many will attend university and so forth. 

They also told us that on a rare occasion hydrocephalics' bodies can actually heal themselves over time, blockages are cleared and the CSF begins to flow normally from the brain and up and down the spinal column.  This seemed to be one of those stories being told to us just to try to make us feel better about the situation, yet it did give us hope.

Then one day this month, I met a lady who told me her son had hydrocephalus.  "He does??" I exclaimed, "So does mine."  She looked at me like I was speaking another language, taking in what I just said.  I told her the basics of our experience and she was amazed, as I was basically describing her experience which had taken place 33 years ago.  Her son was born at 28 weeks or so and he was found to have hydrocephalus very quickly while in hospital as well.  He had a shunt inserted and had a few corrective surgeries by the time he was 3.  She then told me he was monitored by a pediatric neurosurgeon while he grew up.  At the age of 18 he was transferred to an adult neurosurgeon in Toronto.  When she and her son met this new doctor he completed his assessment and ran some scans and revealed to them that his shunt was not working.  Of course this worried them to hear this news, when all along they thought everything was fine.  He then said something like, "Did Doctor So-and-so not tell you your shunt is not working and it doesn't need to work anymore because your body is working for you again?"  I can only imagine the relief this mother would have felt!  That is an amazing and inspiring story.  I guess miracles do happen, dreams do come true and stranger things have happened.

I was able to meet this woman's son, who is the same age as me.  I met him yesterday and was able to talk with him about how he felt when growing up.  He told me he was not allowed to participate in contact sports, such as hockey.  Growing up in Canada and not playing hockey might be challenging for a kid.  He was not allowed to participate in any physical education activties and had to sit on the sidelines.  He was told as a child he couldn't do these things for fear of shunt malfunction and/or getting hit in the head with a ball, bat, hockey stick, puck, whatever...He went on to tell me that he was often delayed in many areas his peers were not.  They were hitting milestones at the right time and he wasn't.  He said eventually it got to the point he felt very excluded from his classmates, he wound up sitting in the back of class because it was harder for him to learn some things and he began to dwell on his condition and found that to be very hard.

He gave me advice and that was to avoid treating our son as someone "different."  To try not to over-protect and shelter him.  To get him out and active in his community and let him try things (within reason.)  He said he didn't blame his mother for over-protecting him, as she was young at the time, single and did her best to protect him and keep him well.  He also pointed out times have really changed in 30 years. 

When this man was born, his young, single, alone mother was told that it may be best to institutionalize him, as he would never walk, never talk and never be able to function like a "normal" child.  She did not take the doctors' advice and said she was determined to prove them wrong.  She did a very good job in proving them wrong, I think.  He walks, he talks and is healthy overall.  Then he goes and does the amazing and grows out of the need of his shunt.

He did tell me he finds it difficult sometimes dealing with math and that he does suffer from bi-polar disorder, which may or may not be attributable to some long term damage to his brain.  No one really knows.  He also had a mild shake in his hands. 

He says he is happy to share his story, as he did live a hard life in many ways, and if he can help others along the way, then it's worth it.

I am very grateful to have met this man and I now have a very well-rounded knowledge of what can happen and how to overcome any obstacles that may come our way.