cysticfibrosismom

I'm just a regular mom, figuring out life with my daughter Sophia, who has cystic fibrosis.Take this journey with me.


1 Comment

Let’s.

Throughout the last 7 years I have experienced many different things. I’ve worn many different hats. I’ve experienced many different emotions. I’ve been many different people.

 I believe that there’s always a balance in life. With every down-swing, there will eventually be an up-swing. Maybe I’ve watched too many episodes of Seinfeld, but I believe in Even Steven. Maybe it’s just hopeless optimism. It’s what gets me through the day.

This year I experienced new challenges trying to juggle work, volunteering, life, and happiness. With the never-ending support of my husband, who sails on my ship with me, through good weather and bad, I feel like I can face anything.

I’ve had the opportunity to do some fun things this year. I can’t say they were on my bucket list per se, but they were fun. I got to see Maestro Fresh Wes at a beer festival. I got to climb a mountain next to my kids. I got to wear a tiara (this is a big deal for a girl who climbed trees and played with M.U.S.C.L.E. Men as a child). I got to be part of a professional photo shoot. I got to go night swimming.

I wear many hats. Sometimes they wear me out, but I will continue to wear them. In life, we can control a great many things, and these are the things I will try to influence. The rest are out of our control, so I’ll try not to worry about them. Let’s stay healthy, let’s be happy, let’s be successful, let’s help find a cure.

 


Leave a comment

Oh boy.

This blog has mainly focused on my journey with Sophia, the challenges we have overcome, and the victories we have cherished. I also have a 2-year old son Simon. Although he does not have cystic fibrosis, he presents me with a different set of parenting challenges. He is a little boy with a lot of spunk.

This week I get to enjoy my little guy more than usual. Sophia is away for the week with grandma, so it’s just me and Simon. All day long. I get to drink in the facial expressions he shoots at me, and hum along with his constant stream of consciousness. If I didn’t get the feeling that bad things usually happen to child actors, I would sign him up with an agent. I don’t know if it’s because he has to compete with his sister for attention that he is so loud, expressive, and dramatic, or if it’s purely a consequence of temperament and genes. Either way it’s thoroughly entertaining.

Image  DSC_1856

It’s fascinating to hear what goes through the head of a very verbal 2-year old.  Just this morning: “Mommy, I made a mess with my milk.” [stirs finger in said milk] “Look, I make a picture!” [sticks milky finger in mouth] “It tastes like warm milk! Tasty.” [puts whole hand in milk and starts smearing] “Mommy, I clean it up.” [wipes hand across shirt]. “My shirt is dirty. Let’s put it in the washer.” [heads downstairs]. About ten minutes later, with a clean shirt on: “Mommy, are you paper?” [runs at me with open marker and devious smile on face]. “No? Am I paper?” [points marker at clean shirt, eyebrows raised, slowly bringing it closer]. “No, that’s silly! Can I have some paper?” You’ve gotta be on your toes at all times with this one.

The ability to sense anxiety and prey on it is one of Simon’s strengths. Much to Sophia’s dismay, it makes him the perfect little brother. Whether he’s grabbing a toy from her hand (that he really doesn’t want) and running away at warp speed, standing right in front of her while she tries to watch a show, or letting his hand hover over her favourite food, he’s got his role down pat.

Don’t get me wrong though. Simon has a nice side as well. If a child is crying he will immediately run over and ask if they’re okay. When he feels he’s taken something a little too far with Sophia he will profess his love for her and give her a hug. Driving in the car with him is more entertaining than the radio. “Look at all the trucks! There’s a green one. I want to see a dirty truck. There’s one! Look, a Canada flag. Ooo, a motorcycle. Where did the motorcycle go? Mommy, go fast. A dump truck! A garbage truck!” I get the feeling that 2-year olds have about the same attention span as puppies.

I wonder what happens if I pull this

I wonder what happens if I pull this

“The quickest way for a parent to get a child’s attention is to sit down and look comfortable.” ~ Lane Olinghouse

“A two-year old is kind of like having a blender, but you don’t have a top for it.” ~ Jerry Seinfeld


2 Comments

Sophia’s Goodnight Story

Okay, so every parent thinks their child is a prodigy. They are the most beautiful, intelligent, articulate, graceful, witty beings in existence. Somehow we manage to block out the whiny voices, grumpy faces, hitting, screaming, stubborn, arms crossed, pouting beings. It’s a good thing for the continuance of our species that we have selective amnesia when it comes to our offspring.

So, in true parent fashion, I am going to share the brilliance of my 4-year old daughter with you. Last night she decided she wanted to make up her own bedtime story. She narrated, and I wrote. Here’s what she came up with:

 

Sophia’s Goodnight Story

 

Good night, the stars are

Shining bright at night.

 

1, 2, 3, 4, 5, 6, 7, 8.

 

Big rose, little rose,

Big roses shine at night.

 

Hoppy Haddy, Hoppy Haddy,

 

How high does he jump?

Plain out of sight, and bed.

 

Every guy inside the warm night,

Sleep tight.

 

In the night, Queens are the ones that settle in,

And sleep the night.

 

Blocks are making Floppy’s bed,

1, 2, 3, 4, 5, 6, 7, 8, 9, 10.

 

One hundred days in one day.

 

Pink balloon, Haddy Hoppy box,

Trophy, twenty-three blocks.

 

The End.


4 Comments

Sibling Rivalry

When my husband and I were thinking about having a second child, there were many things we had to consider. The hardest part was deciding ‘how’ to have a child… now, no need to send me to Dr Ruth, we figured it out the first time. Unfortunately, knowing that we are both carriers for cystic fibrosis changed the playing field. For every pregnancy, there’s a 25% chance our child will be born with cystic fibrosis. To us, this seemed like a big risk- not one we wanted to take. We decided to go the route of in vitro fertilization. The experts then take one cell from each embryo and test it for cystic fibrosis, using what they call ‘pre-implantation genetic diagnosis,’ or PGD. To say that this technology blows my mind is an understatement. After figuring out the ‘how,’ we were ecstatic to welcome the ‘who,’ Simon, into our family 9 months later.

During the pregnancy I wondered if Sophia would ask why her little brother didn’t have to take enzymes or do ‘zoomies’ (our name for chest therapy). I hoped that she wouldn’t feel singled out. I didn’t want her to feel burdened by all the extra therapy she had to do. As the days and months passed I realized how wrong I was. Sophia didn’t feel burdened by her therapy. It was our time to cuddle and bond. She didn’t feel singled out. She felt loved. It was Simon who was struggling. As proficient as he has become at playing by himself, he still feels left out.  Sometimes he’ll look at Sophia and I and start crying. He’ll try to pull himself up onto the couch to be with us. Sophia has become okay with having her little brother share in the cuddling part of ‘zoomies.’ I explained to her that Simon needs snuggle time too. Sophia understood.

Life always throws curve-balls, yet I was still caught off guard. I was prepared to explain to Sophia why Simon was ‘lucky’ enough not to need chest therapy. Instead I am explaining to her why he wishes he did. I know that their relationship will always be dynamic. I will try to stop building expectations, as they will probably keep tumbling down. Thank you Sophia and Simon, for keeping me on my toes, and teaching me something new every day!


Leave a comment

Pressure

Positive reinforcement comes from family and friends. “You are the

Reason Sophia’s doing so well.” I feel proud of my commitment to her, but

Expectations for her good health are high. What if Sophia should get really

Sick? Is it my fault? Did I not work hard enough? Of course not. I am

Strong, but not infallible. At times I will take her illness personally. I look for

Understanding from my support system. I can’t take all the credit for her health.

Reasons beyond a mother’s control cause up and downs in cystic fibrosis. I feel both

Energized and wary of the ups. We can’t always judge the parent for the downs.

Being the parent of a child with cystic fibrosis comes with great Pressure.

Thank you to my loving family and friends for supporting me through all the peaks and valleys.