Friday, August 8, 2014

She is Going to Change Your World

13 years ago today I sat in a house waiting for some of the most exciting news one can get... the news that a new member of the family has arrived safe and sound. The new family member was my cousin and I waited with some family members at their home while my Aunt and Uncle were at the hospital.

It was a beautiful summer day in Courtice, Ontario and we waited happily filled with anticipation. Finally the call came. It's a girl. She is perfect. Her name is Taylor.

I found myself in a bit of a happy daydreamy fog at this point. One of the family members I was waiting with was my cousin Stephanie, six years my junior and born on my birthday. She was newly 9 the day her sister was born, nearly exactly the same age I was when my sister had been born six years earlier. Like me, she had a brother as well born a few years after her. 

I was overwhelmed with love and excitement and amazement most of all for Stephanie. My younger brother is one of my best friends, and I can't imagine my life without him but there was something special about being old enough to really participate in all of the stages my younger sister went through. To be old enough to take her to do things without our parents. To be old enough to remember her very first days. I knew Steph had all of this to look forward to and more. She was ecstatic. I looked at her and I didn't know how to put all of what I was feeling into words. How do you tell someone all of the amazingness that is having a little sister? I couldn't. Congratulations, I told her, and I meant it with every fibre of my being. Just like my own did for me, she is going to change your world.

Sunday, June 8, 2014

Soccer Close to Home

Today it was threatning rain all day so we stuck close to home but the boys did get to go out for a trip to the park near our house with Daddy.








Soccer and swings. What could be better?

Saturday, June 7, 2014

Good Times in Brooklin


This morning when I woke up I wasn't sure we were going to make it anywhere. We had planned a fun day starting in the morning but I was having a bad morning pain wise and we had to come up with a new plan. It took a few hours before we could make it out of the house to make some fun.

We started at Vipond Park in Brooklin. This park is amazing and I don't know why it has been a couple of years since we'd been. When we got there there was a baseball game in progress on the diamond and we could hear them playing as we enjoyed the playground.

There was lots to do at the park but one of the highlights for me was getting on a swing myself for the first time in forever. The feel of the wind in my hair and the sun on my face was amazing <3




All of the boys successfully scaled the mini rock wall.








They loved the bridge cross over and the two big boys both conquered the monkey bars. Linus was thrilled to be tall enough to reach by himself!








When we had played for a while Malachi started to need a break from the direct sun so we went over to my Dads house. The kids were thrilled to see Grandpa and they got to spend a nice couple of hours playing (one of the kids from the neighborhood even came over to play!). They also got to spend some time with the largest of the critters, Angus and Farley the dogs, and Annie the pig. 









Such a good ending to a day. Needless to say I had three boys asleep as their heads hit the pillow tonight. That's what I call success!

Friday, June 6, 2014

A New Direction



When I started this blog three years ago I really just started as a way to get some of my thoughts down in writing, post some pictures with memories I wanted to remember, and motivate myself to read more. I have done all of those things though I havn't been as regular about it as I would have liked.

The last three years have seen us go through some unbelievable changes as a family. I usually have great big long updates for family and friends when we talk on the phone, especially if it has been a long time since we spoke. I've been asked for regular updates, but it's hard to find the time and energy to call every person as often as I would like when dealing with a house full of people with special needs. I am going to try and change the direction of my blog into a more regular update of what is happening with the kids, with James, and with me. Some of it will be interesting, some will likely be boring, and emotion wise it's apt to be all over the map.

Still for those who would like to be able to keep better tabs on what is going on with us, for our family and friends who we don't get to see nearly as much as we'd like because of time and distance, this blog will hopefully bridge some of the gap. As always James and I can both be reached on Facebook at any time, and phone calls are always appreciated. This blog will also serve as a memory jog for me because lots of times I feel like moments slip away that I wanted to remember and if I don't record them as them happen they are gone in a flash. Also some of our medical journey may be helpful to beyond our immediate network of family and friends as we know that sometimes this road can feel awfully lonely and sometimes it helps to know what is working or not working with other families dealing with medical special needs.

Let me know if there is anything in specific you'd like to see on the blog, any questions or anything that might be helpful to you. Looking forward to sharing more of our journey :)

Friday, February 28, 2014

Its Rare Disease Day



Our family cares about rare. Rare diseases that is. Two of our kiddos have rare disease diagnoses and neither of them have a complete diagnosis yet (meaning there are still things going on with their bodies that we are looking for answers too through testing and the expertise of an excellent medical team).

We are now over five years into this journey since our second son was born appearing totally healthy at birth only to crash into a major health crisis within a few weeks of being born. In that time we've had a roller coaster of ups and downs and we've met many new people along the way. Some of those people are the doctors, nurses, therapists, phlebotomists, radiologists, social workers, respiratory therapists, and receptionists that have helped us navigate through the medical care we've needed for the kids. Some of those people are other parents who are raising kiddos with rare diseases or who have them themselves (or in the case of some families both).

Why the focus on rare? Though all three of my kids have various health issues there is something radically different between a disease, syndrome, or illness that most doctors have seen or at least heard of and one that requires you to luck into a certain type of doctor (that may not be available in all areas) and/or a certain type of uncommon test (that the provider you have may not be able to order). Unfortunately we have had doctors who don't know what is wrong tell us that nothing is wrong even when clearly there is something wrong, and we aren't alone. Sadly its an all to common theme. Or else a misdiagnosis is given... something more common that doesn't quite fit is made to fit depending on the range of expertise of the care provider.

Some rare disease facts from The Global Genes Project

*80% of rare diseases are genetic in origin, and thus are present throughout a person’s life, even if symptoms do not immediately appear

*Approximately 50% of the people affected by rare diseases are children

*30% of children with rare disease will not live to see their 5th birthday

*Rare diseases are responsible for 35% of deaths in the first year of life

*The prevalence distribution of rare diseases is skewed – 80% of all rare disease patients are affected by approximately 350 rare diseases


We have gotten very lucky with our boys. When Linus was an infant we didn't think he would make it to his first birthday and now he is five. When I was pregnant with Malachi I was desperate for a baby who would breathe normally and ended up holding another of my infants in my arms as they were turning blue. The road with him has been an ongoing management of crisis points as he has multiple life threatening things going on with him. Yet despite all the challenges he has beaten the odds and will be three and a half next week. 

Our lives wouldn't be the same without our rare disease experiences. I hope for answers and treatments or cures one day for not just my two sweet rare kiddos but for all of the 350 million people worldwide who have a rare disease.


Thursday, January 9, 2014

How Not to Behave in a Parking Lot

To the woman in the black SUV at Costco:

I was really quite confused when you pulled in front of my newly parked vehicle and blocked me in but I let it go. When you rolled your window down and glared at me as I was attempting not to slip on the ice I didn't feel like killing myself to walk over to you but I listened to your sign language asking if I had an accessible parking permit and nodded yes quite politely with a smile even though it was visible on my dash.

You sat and watched me take my child out and into a cart after making sure it was as safe for him as I could while he screamed and fought me. Pretty much the last thing I needed at that moment was for you to roll down your other window as I walked passed you and say

"You can't effing park here just because you have a kid... Even if he is screaming!"

I'll admit I didn't respond right away because you caught me off guard. Before I could respond you apparently thought my shock at your rudeness was lack of understanding and added:

"You can't park there, it's for people like me who have a permit. I've called the cops on you. You have to have a permit to park there."

At which point I found my voice and my righteous indignation and told you "It's displayed on the dash. Thanks for your concern."

In the spectrum between total dependence and fully able bodied my spouse does not always look disabled. At the time you were losing your mind on me he was not responding as he was focusing too hard on not falling and breaking a hip on the ice as he does not have full control or range of movement in his left leg since the stroke. For that matter the kid you were sneering at for yelling about being in a cart is autistic and immunocompromised (part of what took us so long getting him in was making the cart safe for him) and has a chronic lung disease.

I get it. Disabled people don't always look disabled. Which is why I smiled and polite when you asked me your initial question even though I wanted to just get on with my day.

Once you brought yourself to my attention I noticed you were alone in your vehicle and fairly young yourself, probably less than a decade older than myself. I'm sure you've probably encountered people making snap "young must be able bodied" judgments about you and so I don't understand at all why you'd do so to someone else.

No one likes when people park in accessible spots who don't need to. Least of all the disabled persons who actually need them. But c'mon now. Next time a smile and a lot less asshole would be much appreciated.

Thanks,

A woman in a blue van who just wanted to buy some bread and return a game


PS: To the elderly gentleman parked in the accessible spot behind us when we went to leave your smile and chatter to our three year old to calm him down was so much appreciated. He wanted you to come right over and visit with him which is rare for him but we understood fully that you were safer not risking more ice when you were already at your car. Thank you for the kindness. You don't know how much we all needed it.

Tuesday, November 5, 2013

Day 5 of Thankfulness

Today is my fifth day of my thirty days of thankfulness I've been doing on Facebook but today I had too much to write to cover there.

Today I am reminded of how very grateful I am for my siblings. I'm one of five kids, when I was born I was a little sister, two years later I became a big sister, and for the last 18.5 years I've been the monkey in the middle. I have it all... An older sister, an older brother, a younger brother, and a younger sister.

Through the years I've certainly had my ups and downs with all of them. I think only my youngest sister has escaped a time when we weren't talking to each other. But today when I think of any of the four of them I know that I am lucky. I would not be who I am without any one of them having not been my sister or brother.

Missy... You were always the big sister who knew everything I didn't. At nearly 9 years older than me you were the bridge for me between the kids (who I usually believed I knew better than) and the adults (who were obviously too old to know anything). I didn't appreciate until it was me with the much younger sister how much work went into being the older one. Making sure we were all taken care of on sibling only outings, making sure we had time and memories together. It wasn't until I was even older than that that I realized that no matter how much we disagreed you were always coming from a place of worry and love because I was your little sister. Not just some random person, but someone you'd loved since before I ever got here. I look forward to getting old(er) with you and the memories we have to look forward to. I love you.  

Matt... My giant of a big brother. I always knew you'd keep me safe when I was with you. You'll never know how much your ability to always go along with what I wanted to do meant to me. The memories (and pictures!) of dressing up in costume jewellery are priceless. I wish we had less time and distance between us. I am grateful for the role that you've played in making me believe in the safety that can come from a big brothers arms (and warnings to all who may want to hurt his little sister!). Even when I wasn't listening to what you were saying I was hearing it in my heart and I'm grateful for the perspective you gave me. I love you.

Stuart... The one who knows what it's like to live with me all the time (poor you :P). You taught me how to love another person more than myself. With you I exemplified the notion of "Sure I can knock him down but if you do it you will have hell to pay from me". Who besides you will know what is coming when I say "Alberta, Saskatchewan, Manitoba, Ontaaaaaario", or will know that when I ride the train I ride it alllll the way. You've wiped my tears and held my hand and kept my secrets. I love you.

Andie... My baby girl. I've wanted you since before you were even concieved. From the minute I first saw you sleeping in our room at a day and a half old I thought you were the most beautiful baby sister I could've imagined. Through you I got to have a sidekick, someone to follow me around believing for a time that *I* held all the answers. Laying in bed with you at night as you told me all the things you knew and loved and were worried about are memories that shaped how I parent today. Now you're an adult too and I cannot wait to see how your life unfolds and make many more memories along with you. I love you. 

My siblings. Without them I wouldn't be me. I couldn't be me.