Tag Archives: Perspective

October is Dwarfism Awareness Month

6 Oct

October is known internationally as Dwarfism Awareness month.

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If I’m going to be completely honest, this was never even on my radar until this past September. I really didn’t know that much about little people aside from a couple of relatives, as well the Roloff and Arnold/Klein families who are featured on TLC’s Little People, Big World, and The Little Couple.

For the past few years I’ve been fighting non-stop to get answers as to why Ladybug wasn’t growing. She is nearly 10 years old and the size of a 2-3 year old. I was always told that a shorter stature can be a part of CDG – but this was beyond a shorter stature. In the summer we were told that she “qualified” to start HGH  (human growth hormones) to help her grow.  The doctor was all ready to get started but this didn’t sit right with me. Setting aside the football size field of horrible side effects, they still hadn’t given a reason as to WHY she wasn’t growing. Think about that for a moment – it’s like a person who keeps breaking a bone and the doctors don’t find out why they just keep putting a cast on it. (On a side note we’ve also discovered in this quest, that Ladybug has Osteoporosis) I wanted to know why she wasn’t growing before I’d even consider putting her on HGH.

After having a couple of scans, we waited patiently for an appointment with the lovely metabolic geneticist that diagnosed Ladybugs subtype initially, to try and get some answers. It was at this appointment that she confirmed, Ladybug is a little person. She has a rare form of Skeletal Dysplasia otherwise known as Dwarfism – her body is fully proportionate it just isn’t able to grow like an average person. Similar to her type of CDG, CDG SLC35A2, this form of dwarfism is not genetic. Meaning Daddy-o and I don’t carry the gene.

I’m typically pretty strong in appointments – when we received Ladybugs initial CDG diagnosis I was prepared for it, when the onset of tonic clonic seizures started, as heartbreaking as they are, I was prepared for them because I knew how horrible LGS was. However, this diagnosis hit me hard. For years I was fighting for answers. Answers as to why she isn’t growing – 1 cm in 2 years is not typical by any means. When I heard her say the words “little person” I broke down and cried. It wasn’t tears of sadness or grief, it was tears of relief. Relief that I now know why she isn’t growing, relief that I know HGH will not help her type of dwarfism, and relief that I no longer have to fight for answers.

So, this month – October, will be our first time celebrating International Dwarfism Awareness. We have already been welcomed into the LPO – Little People of Ontario community and I’m looking forward to meeting them at the Holiday Party next month.

Between going back to school and wedding planning things have been pretty hectic, however, I will be writing a post soon about Dwarfism. If you have any questions please feel free to reach out to me and I’ll do my best to answer them.

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3 Words You’ll Never Hear Me Say

12 Jul

I can’t count the number of times I’ve noticed these 3 words on someones Facebook status or have heard them mentioned in a conversation. I can however tell you that it drives me absolutely, positively bonkers when I hear or read them.

What three words in our English language could possibly irk me enough to write about?

“My Life Sucks!”

I’ll admit I’ve had my low times. You know the ones I’m talking about – where you feel like you just can’t catch a break, it’s one thing after another, and nothing ever seems to go your way.

I don’t think there is a single person out there who hasn’t experienced one if not all of these feelings. It’s how you cope and handle these situations that will determine if you get through them.

A long time ago I discovered that it is all about perspective. No matter how bad I think I have it, there is always another person out there who has it a million times worse – and you can bet your ass they aren’t going around saying “my life sucks!”

Household appliances can be replaced, cars can be fixed, relationships can be mended & broken hearts do heal with time.

Next time you feel like saying “my life sucks” volunteer at the local children’s hospital or just turn on the news. Imagine for one second that your child was diagnosed with a fatal/incurable disease, your home had just been washed away by flood waters or your entire life was being ripped to shreds by war. That broken dishwasher, flat tire, family feud and break-up will all of a sudden pale in comparison.

 

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Family

23 Jan

In a few short weeks Family Day will be observed in the Canadian provinces of Alberta, Ontario and Saskatchewan. This holiday celebrates the importance of families and family life to people and their communities.

Even though I’m really looking forward to having this day off work next month to spend with my family, it will be a little bitter-sweet.

Yesterday morning one of my dearest friends lost the father of her three beautiful children in a tragic accident.  My heart goes out to that entire family; especially the two little girls and the little boy.

Any loss of a friend or loved one tends to put everything in my life into perspective.  Even more so since I’ve had my daughter.

So many of us go through life in such a zombie like routine that it flies by before we have a chance to realize it. How many can honestly say that we spend as much quality time with our family or close friends as we probably should?

I recently asked a family member if they would like to bring their children over and go tobogganing on the giant hill  behind our house, I was told that between sports and other commitments we would have to call weeks in advance to even see them as they are so busy.

When did we become a society where drive thru on the way to a class or practice becomes a family dinner, or that I need to book weeks ahead so my ladybug can see some of her extended family?

If you ever get the chance and have some free time (I know easier said than done especially when you have kids) there is an older movie from Walt Disney called “The Straight Story”. The Readers Digest version: it’s based on a true story of an elderly man who makes the emotional journey across country to make amends with his estranged brother who has just had a stroke.  It’s not action packed, animated or 3D just a good old fashion heartwarming film.

I do suggest having a box of tissue and a phone close by. Chances are you will cry and I hope it will encourage you to get in touch with a family member or close friend you haven’t spoken to in a while.  Maybe it’s because you’re too busy or perhaps you’ve had a falling out. Harsh words were spoken or nowadays emailed or texts sent. Words are just words and as hurtful as they can be it’s the actions that will always speak louder.  Life is too short and precious to hold grudges, anger, and to always be busy.

No matter what you’ve done for yourself or for humanity, if you can’t look back on having given love and attention to your own family, what have you really accomplished?
— Elbert Hubbard

I’ll be the first to admit that even I’m guilty of becoming to busy or growing apart, if you will, from extended family members/friends. This day and age it’s nearly impossible not to.

The thing I need to remember and I hope encourages you to think about are all those sports/activities, appointments, and meetings in the grand scheme of things, are just trivial. It’s family and close friends that are what’s really important in life.

 

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