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Holland

Welcome To Holland
by
Emily Perl Kingsley

I am often asked to describe the experience of raising a child with a disability – to try to help people who have not shared that unique experience to understand it, to imagine how it would feel.  It’s like this……

When you’re going to have a baby, it’s like planning a fabulous vacation trip – to Italy.  You buy a bunch of guide books and make your wonderful plans. The Coliseum.  The Michelangelo David.  The gondolas in Venice.  You may learn some handy phrases in Italian.  It’s all very exciting.

After months of eager anticipation, the day finally arrives.  You pack your bags and off you go.  Several hours later, the plane lands. The stewardess comes in and says, “Welcome to Holland.”

“Holland?!?” you say. “What do you mean Holland?? I signed up for Italy!  I’m supposed to be in Italy.  All my life I’ve dreamed of going to Italy.”

But there’s been a change in the flight plan.  They’ve landed in Holland and there you must stay.

The important thing is that they haven’t taken you to a horrible, disgusting, filthy place, full of pestilence, famine and disease.  It’s just a different place.

So you must go out and buy new guide books. And you must learn a whole new language.  And you will meet a whole new group of people you would never have met.

It’s just a different place.  It’s slower-paced than Italy, less flashy than Italy.  But after you’ve been there for a while and you catch your breath, you look around…. and you begin to notice that Holland has windmills….and Holland has tulips.  Holland even has Rembrandts.

But everyone you know is busy coming and going from Italy… and they’re all bragging about what a wonderful time they had there.  And for the rest of your life, you will say “Yes, that’s where I was supposed to go. That’s what I had planned.” 

And the pain of that will never, ever, ever, ever  go away… because the loss of that dream is a very very significant loss.

But… if you spend your life mourning the fact that you didn’t get to Italy, you may never be free to enjoy the very special, the very lovely things … about Holland.

New duo to watch for…

On Monday, I got to go to a concert!  This duo is brand new to the scene and they are amazing!!  I felt so blessed to be able to attend this concert for free!  If you ever get a chance to see these girls…do not miss out!!  They are going to go amazing places and do amazing things.  I videotaped some of it for you guys to see!



What they never tell the Mom of a preemie…

In the last eight and a half years I have compiled a short list of things that they never tell the parents of preemies.  And depending on how premature your baby was…you may know even less than the moms and dads before you. 

Cody was born at 23 weeks and 5 days…I know this because he was an IVF baby and I know the exact day that they implanted the embryos into my uterus.  Now if you look into his medical records you will see them say he was 24 weeks and 1 day.  If you want a straight up answer of why that was..it is short and simple.  Viability of a fetus in legal standards is 24 weeks…there are places that will preform abortions up to 24 weeks…my son was born at 23 weeks and 5 days. 

The first thing they never ever warn you about – you will never be prepared for a premtaure baby…ever!  It doesn’t matter how you read it in the baby books that it could happen…you will never imagine that it will happen to you. 

So now you have this premature baby and you wonder what in the heck could possibly be next.  First off, always keep a journal.  Keep track of weight gains and losses, oxygen sats, medications, what the doctors say, what the nurses say (more important sometimes) and all of the illnesses that you encounter.  One day you will want all of this information and it will be very important for you to have it.  And if nothing else, it gives you something to do while you are there for hours and they won’t let you hold your infant yet.  Because Cody was so so premature, I was not able to hold him until he was 39 days old.  His skin was so fragile and he was so sensitive that any movement and touching upset him and caused his oxygen sats to go down. 

Next, research everything.  If there is one thing that Richard and I have learned through this whole process, it is that YOU are your child’s advocate.  Do  not expect that the doctor is going to be the one to always advocate.  There are days a new doctor would come in, make decisions and I know, without a doubt, there is absolutely no way that he read through every single file on my son!  If we wouldn’t have researched and pushed for medical procedures, I can tell you that Cody’s vision would be way worse than it is today.  I am sure that over the first 6 years of Cody’s life, I had numerous doctors hate me and my researching.  Being a parent to a baby with special needs, you have to have a tough skin…expect to be looked down upon, expect doctors to be rude, and when you find one that listens to your concerns and helps you as well as your child, hang onto them. 

In every page you read about preemie babies, you will read about the “rollercoaster ride” and it is true.  I remember going in to a glorious day of lowered oxygen levels and kangaroo care and then finding out the next day was back to square one.  Expect it, give it its fair share of “why me” time and move forward.  Easier to say than to do, but you have to keep moving forward. 

Demand kangaroo care when your baby is stable enough to be taken out of the incubator for short periods of time.  The benefits for you and the baby are endless.  Every single time they laid his tiny body on my bare chest, his heart rate would steady, his oxygen would go up and he would melt my heart.  I felt better and stronger and I actually FELT like a mother.  You feel so helpless in there that anytime that you can take to feel like the parent, the better.  Savor every single second.

Take tons of pictures…take more than you ever think you could possibly need. 

And lastly and probably most important….don’t be mad at people and hold something they say against them.  They have no idea what you are going through (for the most part) and they do not mean to be insensitive.  I think that people just don’t know what to say.  I have pity moments for myself that I never had a “normal” birth and I never knew what it was like to bring home a full term healthy infant.  I have pity moments for Cody that he had to go through so much trauma to stay here with us.  But all I can do is hope that everything we have been through has made us stronger and that somehow…our story makes other people stop and hug their own kids a little more.

4 Hour Body Update…

Well I read through Timothy Ferriss’ book, The Four Hour Body, and I started the weight loss portion on Monday, April 11. As of this morning…I am down 5.2 lbs and not hungry at all. And today is cheat day…a mandatory cheat day once a week. So…I of course started out with a double double coffee and bacon and egg bagel from McDonalds…then had me some boneless chicken wings and I am planning to have a blizzard too! I made a list all week…that way I am acknowledging that I know I want it but will wait until Saturday!!

All in all, I am finding this healthy eating going very easily and can’t wait to report a bigger weight loss and pic of 6 pack abs!! 🙂

Proud Moments…

I have discovered that not all “proud moments” belong to your own offspring.  There are times when you look at someone else’s child and feel a rush of pride for something they have accomplished.  I remember when my sister gave birth to her first daughter…I swear that I cried more than she did.  I held that little pink girl in a blanket and felt an overwhelming sense of pride.  This was my neice.  She was perfect and beautiful and I knew then that I would love her like my own until the end of time. 

 Then my sister went off and had a baby boy…a perfect round baby boy.  Cody and I went to Saskatchewan a couple of weekends ago to attend B’s hockey game.  Not just any hockey game…the Provincial playoffs!!  Of course he is now a young man of almost 14!!  What a moment when he threw his stick to the ice and braced for the onslaught of his teammates as they took the win!  A pure moment of pride.

I’m trying!!

Ok, I normally am a positive person…ok…I normally try really hard to be a positive person.  I do however struggle with being positive as the long months of winter start to take their toll on me.  With 4 days to go until Spring is officially here, I would have hoped to not have to see this anymore….

I’m trying…I really am.  I have many things just crying out for warmer weather…..like this….

That’s right!!  It is March 16 and that is my Christmas tree sitting on my front step.   I’ve been waiting for Richard to throw it out…but he’ must be waiting for it to get warmer too!!

Vegas Highlight Reel…

Check out the Loving Travel tab up top to see our daily hightlight reel of the good times we had in Las Vegas!!

All my time….

The last couple of days between parenting, housework and everything else, I have spent all my time researching what we should do in Vegas.  Besides our tour at Zappos, I want us to do something different that we normally wouldn’t do if the kids were with us.  I have discovered that there are endless amounts of things to do.  There is skydiving, ziplining, shows, comedy clubs, you name it…it is in Las Vegas. 

Right now there is this completely touristy thing…ziplining down Fremont Street.  If you want to zipline and not leave the city, this is the place.  You go down an 800 foot line right under the canopy of lights on Freemont Street.  The cost is very good too…$15 during the day and $20 at night.  Not bad for something different and entertaining!!   The website is www.fremontstreetflightline.com

We also want to go and see some shows.  We have been to Vegas at least 5 times and have only ever gone to one show.  I have heard all good things about every one of the Cirque Du Soleil shows especially “O”.  The only problem is that if you are trying to travel on a budget, shows can get very pricey!  For “O” adult tickets can run anywhere between $100 and $165 per person. 

Richard thought the Richard Petty Driving Experience looked pretty cool and when I looked at the reviews, everyone said that it was well worth the cost.  It can range anywhere from $99 (ride along for 3 laps) to $3500 ( 40 laps of intense driving).  If you are a true NASCAR lover, they say that this experience is well worth your time and money.

One thing that we have done that I would do again is the Bodies exhibit at the Luxor.  It costs $32 per adult, but well worth it if the human body fascinates you.  There are many full bodies and over 200 organ specimens that are meticulously preserved so that you can see what the inside of your body truly looks like.  It also showcases healthy lungs versus “smoking” lungs and other diseases and illnesses.  If you have a child who is at all looking into pursuing the medical field, this would be the perfect place to take them.  And since we are staying at the Luxor this trip, I may just check it out again!

And I think….just for fun….Richard and I will go to Minus5 for a drink.  It is a cool (very cool) bar that keeps its temperature at minus 5 degrees C.  Everything in the bar is made of ice…the bar, the chairs, the tables, even the glasses.  When you go in, you get a parka, boots and gloves and in you go for a special little cocktail!!  You know, it’s for us Canadians that are feeling homesick!!

Las Vegas

Richard and I are headed to Las Vegas at the beginning of March.  The day we get there we are booked in for a tour of the Zappos head office.  Richard heard about it from an online interview he saw and found the www.zapposinsight.com website.

The concept is building culture within your business and creating “wow” for your customers.  It teaches you how to create a fun, family oriented working environment!  They strive to make work a happy place to go and want to teach others how to do the same.  Richard ordered the culture book and we booked our tour.  I am excited…not only for the tour, but I get to go to Vegas….where it is warm and sunny!!!

An A-Ha moment…

I learned something new today…about myself.  I had a brief and memorable A-Ha moment.  I will let you in on it in one moment but let me start at the beginning.

I have two teenage daughters.  Two…at the same time.  They happen to only be 16 months apart.  So it seems that between them and me, there are a lot of hormones and emotions running through this house at all times.  I will openly admit that I play a factor in there as well!  🙂  Anyway, if you have a teenage daughter you will know that many days are filled with laughing and crying.  Days filled with anger and sadness quickly get replaced with joy and elation.  That is just the way it is.  These little girls that we have encouraged and praised for 16 years get into high school and get jolted into a whole new reality.  At home, we still try to do what we have always done, but they are not as receptive anymore.  They are big girls now, they want independence and trust.  They want freedom to carve their own way.  And that is what we want too….right???  I know that deep down that is what every mother wants but I didn’t realize until a few months ago that in order for that to happen…I had to change.  Taylor was 17 and in her own way was trying to break out on her own a bit.  I was fighting her on every turn, trying to keep things the same.  In turn, she was fighting me and our household was upside down. 

It was then that I realized that as she evolved, I was going to have to evolve too.  I was not about to let her take the reins completely, but I had to loosen them enough to let her live and to let her make her own mistakes.  I always felt at her age that my parents were very strict and I always felt like I didn’t make my mistakes until I left home.  Then the problem was that I was making mistakes and had no one to support me and help me when I needed it.  I want my girls to feel like it is ok to make some mistakes and that I will still be here to help them if they need it.  Then maybe when they pack their bags up and head out the door, they will have a better understanding of real life.  I hope.  It was amazing for me to see what happened when I realized this.  I let her take some more control over her own life and things just fell back into place.  If I would have only realized that when the fighting started! 

Now my revelation…I wondered if a greater power was at work for those months of fighting.  Was something trying to prepare me for when she had to move out?  Was I going to be a wreck?  Did her behaviour want me to make her move out and not miss her??  And then I realized…she is moving out…I am going to miss her terribly.  It doesn’t matter how much she fights me or how bad of a day we are having…there are so many good days, it doesn’t matter.  She is my heart. 

This will always be my oldest girl, the one who read at 3.  The girl who wrote her name on the wall when she was 3 and tried to blame her one year old sister.  The one who would sit with me while Daniele napped for 3 hours and color.  The girl who got stuffed animals and named them things like puppy and big monkey.  Who has always loved every animal in her life unconditionally.  Who would give her sister horsey rides even though Daniele was almost always bigger than her.  The girl who loved to do my hair in barrettes and pigtails and now wants to be a hair stylist!  I will miss this girl with all my heart.