The Number Game

You have an older one too, right?

I met your Italian au pair.

Are they twins?

These are a few things that I’ve heard recently. People are confused. They think we’re the same family. They think we’re related. Actually…I don’t know exactly what they’re thinking. But it’s mostly amusing trying to decipher their comments. I’ve blogged about this family before, and it’s quite amazing that we live so close to one another (as in… a 1 minute car ride from our house to theirs). Amazing for us, amazing for our kids…and apparently quite confusing for the rest of the community!

The fact that we have these 2 little people, both with achondroplasia, so close in age (they’re about 18 months apart), living in the same neighbourhood, is really an amazing statistical feat. Their older siblings are even in the same kindergarten class.

Did somebody mention statistics? Here is a brief summary of some numbers related to achondroplasia…

Achondroplasia occurs in approximately 1 in every 25,000 to 40,000 births. In British Columbia, that sees about 40,000-45,000 births each year… that means 1 or maybe 2 babies are born with achondroplasia each year in this province.

Achondroplasia is the most common type of dwarfism. 70% of individuals who have dwarfism, have achondroplasia. That said…there are over 200 other types of dwarfism. Some are so rare that even diagnosing the type of skeletal dysplasia (another word for dwarfism) can be a huge challenge.

The gene responsible for achondroplasia was discovered in 1994, so diagnosis can be confirmed by genetic testing. The FGFR3 gene, located on the 4th chromosome, is where the specific mutation occurs that causes achondroplasia. FGFR3 makes a protein called fibroblast growth factor receptor 3 that is involved in converting cartilage to bone. The word achondroplasia literally means “without cartilage formation.” Cartilage is a tough but flexible tissue that makes up much of the skeleton during early development. However, in achondroplasia the problem is not in forming cartilage but in converting it to bone (a process called ossification), particularly in the long bones of the arms and legs.

So how does all this genetic stuff work for when (if) Declan has children of his own one day? Most people born with achondroplasia, 80%, are born to parents of average size. It’s a brand new, spontaneous genetic mutation. It is not something that is typically inherited (I can’t tell you how many times I’ve been asked… “Does it run in the family?”, even by plenty of medical professionals!). However, the other 20% do have the gene passed on by a parent. It is an autosomal dominant gene. When a person with achondroplasia has a child with someone who does not have achondroplasia, there is a 50% chance, with each pregnancy, of the child having achondroplasia. If both parents have achondroplasia, there is a 25% chance their child will be of average stature, a 50% chance their child will have achondroplasia, and a 25% chance their child will inherit both achondroplasia genes resulting in “double dominant” homozygous achondroplasia, a condition that leads to death in the first few months of life.

I really found the numbers fascinating in the first few months after Declan was born. I kept thinking…how did this happen?! And then…how did this happen to me?! I sometimes have a hard time with the semantics of it all (and keep meaning to blog specifically about that! One day…). I know it’s not something that happened to me. Like stubbing my toe or something. It didn’t just happen. I really feel like I was chosen to be this little guy’s mom. He is my jackpot. I totally won the numbers game.

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One Year Ago

Last year on this day I think my heart was beating a little faster, I was probably a bit anxious… I remember composing a Facebook post announcing that October is Dwarfism Awareness Month. I was also announcing (to the world, it felt) that my 9, almost 10 month old son was born with achondroplasia, a form of dwarfism. I’m sure it was my most “liked” Facebook post ever.

Now…many of my Facebook ‘friends’ already knew. My family, extended family and close friends of course knew. But many of those old friends, coworkers, acquaintances that we don’t see very often, but use Facebook as a way of keeping in touch…well there were people who didn’t know. I am so lucky that I have had nothing but love and support from everyone in my life.

I’ve said it before, but it’s really crazy how quickly it all became ‘normal’ for me. I really don’t think twice about it at all. Declan is a little person. It just seems like it’s been like this forever, and this is how things are supposed be.

I realize that it’s still a rare condition that the average person probably doesn’t encounter very often, if at all. And that’s where I come in. I want to do my part to spread awareness and education about dwarfism. I think we are lucky today. Facebook and other social media platforms have their negative side…but as someone thrown into an unknown world of rare genetic conditions, possible health problems, doctors, specialists, tests, MRIs…the feeling of being alone was completely taken away by this crazy, powerful thing called the Internet. It only took a little bit of digging to find groups of parents who have been in my shoes, who are in my shoes. Who had open arms and ears and resources to send my way. And to be able to use it, the internet, as a tool to spread awareness and education…to help make the world that our children are growing up in, a little more tolerable. Well yes…I think we are lucky.

So here I am. October. Dwarfism Awareness Month. I aim to make it less unknown. To make it more ordinary. Just like it has become completely ordinary to me. I want the world to see my son and know he is like any other almost 2 year old toddler. He might need a simple accommodation or a stool to reach something…but really, he’s like you and me and my other kid and your kids. He’s just small, that’s all.

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Liebster Award

I have been tagged for a Liebster award! In fact…I was tagged twice. First by Tatiana over at The Dubious Hausfrau (that’s German for housewife), and then by Ashley at This Ashley Bee. Thank you ladies! Definitely a fun reason to get something up here in this poor, neglected space.

Liebster means “dearest” in German and the award is given by bloggers to bloggers. Spreading some blog love to the blogs you love to read.  Nominees answer the 11 questions in the post that nominated them and then will leave 11 more questions for their own nominees to answer. Get it? Easy peasy.

Here we go…

  1. Do you untie your shoes when you take them off?

Answering yes to this question would imply that I wear shoes with laces. I usually don’t. Love my flip flops, birks, Toms, boots… basically anything and everything without laces! However, when I run…I am good to my running shoes and yes; I untie them when they come off.

2. What is the farthest you have been from home?

I had to find an online calculator to tell me this one. It’s close but Mexico wins out. Tulum, Mexico is just over 4,500kms away, while Honolulu is a bit closer at 4,300kms.

3. What was the last thing you ate?

My lunch; a big plate of raw veggies, turkey pepperoni , cheese, crackers, and a hardboiled egg.

4. If you were a crayon, what colour would you be?

Red! Always red.

5. Mountain hideaway or beach house?

Beach house. Hands down. I have an aversion to cold weather. Living in Alberta for 3 years was an intense climate shock to my system. I can still feel that dry, bone chilling cold. Never again!

6. Favourite sound?

My kids laughing. (Awwww).

7. Were you named after anyone? Is anyone named after you?

No and no. My mom always wanted a daughter named Tammy Lynn. I am the first born daughter, so that was that!

8. If you found $10 in your pocket, what would you spend it on?

I had to think about the answer to this for a while. I still don’t know. I’d like to say I’d spend it on something frivolous like a fancy coffee, but I’ve cut down on those lately. It would likely goes towards groceries or gas for the car. (boring!).

9. Do you collect anything?

Do grey hairs count? Seriously…was not something I wanted to collect at this age! Willingly though, no collections over here. I hate clutter.

10. Do you have any bad habits?

I sometimes (okay, too often) stay up way later than I should at night, cutting into my precious beauty rest. It does me no good, and I LOVE my sleep. I really don’t know why I do it.

11. Do you have any hidden talents?

I have very dexterous toes (you said weird talent, right?). I don’t have any talents that will make me rich, but my toes are almost like a second set of hands! Comes in handy (haha) sometimes :p

I am passing this award onto the following bloggers:

A is for Adelaide

Twist of Cake

Two Princes and a Princess

My View From Here

Your questions:

1. What is your favourite blog post you have written?
2. What advice would you give new bloggers about sticking it out?
3. What meal or dish do you make that is awesome?
4. What is the first thing you do in the morning?
5. If you could live anywhere in the world, where would you choose and why?
6. What is your favourite season of the year?
7. Tea or coffee?
8. What is your favourite candy?
9. What was the last book you read?
10. What is something people would be surprised to know about you?
11. Guilty pleasure?

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And She’s Off

My first baby started kindergarten last week.

I was (am) so excited for her. I was a big school nerd, all the way from kindergarten to high school. I loved school. I remember the feeling of those nervous butterflies in my stomach on the first day of every year. Sitting in the big gym, waiting to be called up to the front with the rest of your class, and finding out who your teacher was. I loved it all.

She was looking forward to it all summer long, and it hasn’t disappointed. They do things a bit differently these days, so we already knew who her teacher would be, and we had met her a few times last year. We also knew that she had some friends in her class.

She is happy going into the classroom in the morning, and she excitedly runs to me every afternoon when I pick her up.

She told me a few days ago… “I love eating at school Mom, everything just tastes so much better.”

She was over the moon to be matched up with the ‘big buddy’ that she had her eye on from day one. “The girl with the pony tail and glasses. I want her, Mom.”

This morning I volunteered in her classroom as the parent helper (and how lucky am I, to have this opportunity. Thank you Grandma for babysitting the little one!). It just so happened that today she was her teacher’s special helper. Well, by default. A little boy was supposed to do it, and they start standing up at the calendar, while leading the way. However, he broke down in tears from the nerves of it all, so Makenna took over as she was next on the list. She stood up there with her pointer and was a little rock star. She also got to choose a classmate to sit in one of the two special chairs with her. She chose a little girl that she doesn’t know.

I watched them (mostly her) outside during recess. Watched as she swung high and pumped her legs easily. Watched as she ran around, chasing and being chased by other kids. Watched as she piled on the ‘merry go round’ with dozens of other kids. Watched as she sat in the gravel and looked for treasures with friends.

I left while they were still playing outside. It took me a few minutes to track her down. She whizzed by me running after somebody and barely threw a goodbye back at me before she had run to the other side of the playground.

My mom heart swells knowing these are her first steps in a lifelong journey of education and growth.

She’s totally got this.

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My Secret

I’m sitting on the floor in my bedroom. Declan’s napping. Makenna’s taking in her daily allotment of Arthur. Sitting on the floor, so as not to get my bed all sweaty, as I just finished a hellish run on the treadmill. I did something crazy and signed myself up for a 5K run in October. So now I have to actually learn how to run, as opposed to just the interval sprints that I’ve been doing.

I’ve been breezing through the C25K program, but today was a tough one. It’s the middle of the afternoon and terribly hot. I haven’t been feeling 100%. My feet felt heavy. My legs felt slow. My head wasn’t in it. I don’t usually listen to music when I run, because it’s always when Declan is sleeping. But I found the headphones for my cell phone and decided to use some music to help fuel this run. Though, it didn’t help too much. I struggled through… and then a song came on. A country song (note to self: download some good running music). A song that has resonated with me since Declan came along. I don’t know why I connect the two, the song being a somewhat patriotic American song describing those “undesirable” fly over states between NYC and LA. But it gets me. It came on right at the end of my run and it lit something inside of me. I finished faster, stronger.

Of course, it has nothing to do with the U.S. and those (I’m sure) lovely states. But everything to do with my little man.

Just a bunch of square cornfields and wheat farms,
Man, it all looks the same,
Miles and miles of back roads and highways,
Connecting little towns with funny names,
Who’d want to live down there in the middle of nowhere?

As much as I’ve decided to let go of what people think of me, I can’t help but wonder what, if anything, crosses people’s minds when they learn of Declan’s condition. Are they just curious? Pitiful? Sad for me? Happy? Are they glad it’s not them? Maybe nothing at all.

I read ‘Bloom’ as soon as the hardcover was released. I was looking forward to it, having followed Kelle’s blog for 2+ years prior to her writing the book. The timing was remarkable. It was released when Declan was just a couple of months old. This quote is from chapter 4, describing when the author’s sister visited her in the hospital shortly after she gave birth to her second child, who was surprisingly born with Down syndrome.

My sister told me she wished I could see what she saw–because what she saw was wonderful. She said I was lucky–that I’d been offered a shortcut to what life is all about when some people search for it their whole lives and never know. She said I had a secret–a secret to happiness and that, while people may look at me and pity me, in time I’d feel like I knew something they didn’t.

I truly feel this way. I don’t know how it came to be; there was no pep-talking myself…this was just the way it was going to be. I’ve thought that it’s maybe some sort of therapeutic coping mechanism. But…nope. It’s simply the way I feel, and I can’t imagine it any other way. And I feel lucky. So incredibly lucky to be given this. To be given him.

They’ve never drove through Indiana,
Met the men who plowed that earth,
Planted that seed, busted his ass for you and me,
Or caught a harvest moon in Kansas,
They’d understand why god made
Those fly over states

On the plains of Oklahoma
With a windshield sunset in your eyes
Like a water-colored painted sky

You’ll think heaven’s doors have opened
You’ll understand why god made
Those fly over states

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