cysticfibrosismom

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


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A Story About Poop- Part Two

To recap the story… Part One was a bone-chilling drama. There was escape artist poop, a father facing an epic life-changing dilemma, surgical miracles, and intrigue… Jason and I called the nurse during the night for poop updates, opened each diaper with bated breath, listened to the doctors make bets on when the first poop would come, until a crazy thing happened…

 

Sophia finally pooped!! We called everyone we knew. I couldn’t believe how excited I was about poop. I shed big tears of joy. Now, remember though, she still had an ostomy. So even though she didn’t really ever use it, I still had to change it every couple of days. The equipment is small. The baby is small. I don’t have very advanced fine motor skills. The ferocity of a child being held against her will is intense. Although the procedure only took about 10 minutes, I would be drenched in sweat and sometimes tears. Sophia would be red-faced and hoarse from bawling. When they reversed the ostomy after 6 months, I was so relieved. The surgeon actually created a belly button using what is called a “purse-string suture.” Man, that’s cool. Even though she doesn’t have an ‘inny’ or an ‘outy’, she has a ‘flatty’, and that’s pretty awesome too.

For the next couple of years, our excitement about poop settled down. We checked in with each other to make sure Sophia was pooping regularly and that things looked relatively normal. We got into a groove with our poop talk. When Sophia was 2.5 years old she started potty training. She very quickly figured out how to pee in the potty, but was insistent that she have a diaper on for poop. We decided to go with it, as she wasn’t having any accidents. I also had a deep fear that if I forced her to potty train, that she might go on a poop strike and end up with some serious bowel issues. We’d been doing so well, and she hadn’t had any bowel problems since she was a baby.  For a long time, it wasn’t a risk I wanted to take.

After a year of this behaviour, I started seriously wondering how we’d ever get her to poop in a potty. How easily can one make the transition from Pampers to Depends? Finally I decided to use ‘incentives’… in the form of Littlest Pet Shop toys. I looked on Kijiji, found a good deal, and bought dozens of them. There were some power struggles in the first few days, resulting in many hours of crying (for both of us). Finally Sophia started to appreciate the fun toys she would receive after every poop. So much so, in fact, that she started trying to poop several times in the day to get more “surprises.” We had to curb that behaviour by telling her that they had to be “real” poops. This has resulted in some funny conversations with Sophia. “Mommy, was it a real one?” “Do I get a surprise now?” Just last week I realized that my supply of Little Pet Shop toys was dwindling. I went to a Mom-to-Mom sale in search of more small characters, but only found a large play set. Sophia noticed it in the closet the other day and got very excited. “That’s the surprise I want after my next poop!” I explained to her that it was a very special toy. It was a 20-pooper. Yes, we would make a chart. We would write the numbers 1 to 20. She would get to put a sticker on with each poop. After #20 there would be a big surprise. Yes, she liked this idea. So much so that she reverted back to trying to poop a hundred times in a day. A friend gave us a wise suggestion the other day to give her a sticker per day instead of a sticker per poop. Brilliant. I think it might be too late for the 20-pooper. If we have to continue with the ‘incentives’ I will try “20-days of poop” instead. This feels like a ‘happily ever after moment’ to me. Don’t worry though. If you’ve read the story closely, you’ll realize I’ve left some questions unanswered… might there be a sequel??

 

There are a couple of morals to this story:

1. Poop can be utterly fascinating.

2.You just never know what topic suggestion I might take you up on (so keep sending me your requests!).

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A Story About Poop- Part One

Yes, you read that title correctly. And what’s even stranger is that this topic was requested by a friend of mine. Now this story has ups and downs. It has plot twists and intrigue. So hold on tight and get ready for the ride of your life.

Once upon a time there were two adults who rarely concerned themselves with poop. And they certainly didn’t talk about it with each other. What happened behind closed doors stayed behind closed doors. The second their baby was born though, it became a regular part of the conversation. Often these parents found themselves reminiscing about the poops of the day play by play. “Did you see how far up her back that one went?” “I can’t believe she pooped 6 times today.” “That one was a doozy.”  My husband always seemed to get the worst of it. I went to get groceries one day, and I left Sophia in the Jolly Jumper with Jason sitting next to her. As soon as the car pulled out of the driveway Jason heard a sound. It was a big sound. He hesitantly glanced over at Sophia only to find a huge grin on her face… and a big smell coming from behind. And of course, the poop had escaped her diaper and was traveling towards sweet freedom… the carpet. Jason jumped into action, tried to pull Sophia from the Jolly Jumper, only to find his arms caught and twisted in the ropes. Beads of sweat trickling down his face, blurring his vision, panic ensued. Jason was juggling Sophia, trying not to drop her, getting his own shirt covered in poop. By the time he got her to the bathroom all he could do was put her into the bathtub and strip them both down.  But, he had a decision to make. Do I leave my daughter, now crying because of all the drama, in the empty tub to contend with the carpet? Or do I take care of her first? If you know Jason, you would know that this was a big struggle for him. A mind-wrenching decision, some might say. Luckily our dog Oscar came to the rescue. By the time I got home everyone was freshly bathed (Oscar included), dressed in new clothes, and the carpet was clean and sopping wet. I knew I was in for a good story. But, I digress for a moment.

As with most things, I’m finding, cystic fibrosis threw a wrench into our wild hopes of having a regular amount of poop talk in our house. Instead we found ourselves (and still do) very focused on it. It’s a sign of how well Sophia is doing, how likely she is to be gaining weight (through having just the right amount of enzymes), and how comfortable she must be feeling. When she was born, Sophia had a complete obstruction of her bowel. She had emergency bowel surgery when she was 4 days old. They had to give her an ostomy. Even with the ostomy, she was supposed to be able to poop normally (pretty amazing what surgeons can rig up these days). Jason and I called the nurse during the night for poop updates, opened each diaper with bated breath, listened to the doctors make bets on when the first poop would come, until one day, a crazy thing happened…

… TO BE CONTINUED…


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The vessel or the space inside?

In my teenage years, I tried to understand different religions, from Taoism to Buddhism to Christianity. I realized early on that I would never become an expert on any of them. I only ever scratched the surface. Instead I tried to learn from each and create my own set of doctrines. During this time, I discovered Tao Teh Ching, by Lao Tzu. I found it to be vague, but fascinating. The true meaning lying just outside my grasp. In all honesty it was often miles from my grasp. I want to share one of my favourite sections with you:

“Thirty spokes converge upon a single hub;

It is on the hole in the centre that its use hinges.

We make a vessel from a lump of clay;

It is the empty space within the vessel that makes it useful.

We make doors and windows for a room;

But it is these empty spaces that make the room liveable.

Thus, while the tangible has its advantages,

It is the intangible that makes it useful.”

When I applied this idea to myself, I made some realizations. We have arms and legs, we have eyes and ears, we have lungs and a heart. While these tangible aspects are what makes us live, the space between them is what makes us alive. On most days I don’t care if my hair is pretty or if my clothes are trendy. On most days I care about being true to myself, on loving and respecting those around me. What about you? Do you care more about the vessel or the space inside?


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Living a Legacy

Like Simon’s super-indelible-marker-scribbling on the wall, we leave permanent marks on all those that we meet. When we choose to treat someone a certain way, that choice is important.

When you have a child who lives with a fatal illness, you don’t think about what to leave them once you’re gone. Instead you focus on how you can leave an impact while you’re both living. Cystic fibrosis leaves a big question mark on Sophia’s life. With a focus on increasing our number of tomorrows spent together, I began to ponder the idea of legacy.

At the Mom of the Year weekend in Toronto, all of us moms sat down at breakfast and wrote down thoughts about where we came from- how each block built us up into the tower we are. Sometimes that tower is so strong, nothing can touch it. Other times a light breeze causes pieces to break off and come tumbling to the ground. What did we learn from our own parents, and what are we teaching our children? How do our actions impact the strength of our children’s towers?

The other day I came across the concept of living a legacy. These are the actions and values that I live “into” each day. I value hard work. I value kindness. I always want to be someone my children can come to- when they’re happy, when they’re sad, when they’re proud, when they’re scared. I want my children to be confident, yet humble. I want them not only to feel loved, but also know how to love. These values and actions are important to me. I hope they build a strong foundation for my children.

Instead of just leaving my legacy, I am living my legacy.


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Oh What a Night

As I mentioned in a previous post,  I was chosen out of 16, 909 nominations to be a top 8 finalist in the Mom of the Year award program by Walmart Canada. All eight moms and their families were treated to a fun weekend in Toronto. There was a gala on Sunday night, where the grand winner was announced. From beginning to end, it was a spectacular weekend.

I spent two days being pampered- massages, mani/pedicures, driven around by limo’s, had my hair/makeup done for me, was showered with gifts. It was overwhelming, to say the least. I’ve never been too focused on gifts or appearances, but I have to say that it was nice to have “Christmas” in September, and to let loose my inner diva.

I want to tell you about the amazing women I was privileged to spend time with. Carol, Tammy, Helen, Wendy, Eileen, Karen, Olivine and I were the eight finalists. We are as different and as similar as can be. We come from Alberta, Saskatchewan, Manitoba, Ontario, Quebec, New Brunswick, and PEI. We range in age from 34 to 84. Our families have been affected by many different things- cystic fibrosis, cancer, mental illness, autism, epilepsy, developmental delay, kidney disease, learning disabilities, lack of access to resources, and the list goes on. The common thread between all of us: we all dedicate our lives to change. We all saw something happening in our families and communities that we didn’t like. We were all brave enough to step in.

Our fairy tale continued at the gala on Sunday night. We arrived by limo (of course), were met by a flurry of photographers, entered on the red (actually it was blue) carpet, and were treated to a night of wonderful food and entertainment. Natalie Choquette, a beautiful soprano singer, and her two daughters serenaded us. Even though the food was spectacular, nerves were ruining my appetite. The Canadian Tenors came to my rescue by performing an incredible set that went right through dinner. Their velvety voices kept me calm.

About ten minutes before the grand winner was announced, a shocking thought ran through my head. What if I won? What would I say? I had been suppressing this thought for months, because I don’t like getting my hopes up. As we watched all the videos and I realized mine was last, I started to wonder if I might actually win. I also made a conscious decision to let myself cry. I’m not typically a crier. As Jason read my nomination and we watched the video segment about Sophia, I let the tears trickle down my cheeks. My tears were barely dry when they made the announcement. Half way through the description of the winner, I realized with a shock that it was me. Cystic Fibrosis Canada was going to receive $100,000. In the four years I’ve been fundraising, I haven’t been able to raise as much as Walmart Canada was going to donate in that one night. In that moment I felt so much hope for Sophia’s future. I had to pull myself together to make a speech. I said what I’ve been thinking since Sophia was born: My goal in life is to help find a cure (or control) for cystic fibrosis. I don’t want Sophia to ever know that when she was born people didn’t expect her to live into her 40s or beyond.

“Hope is like the sun, which, as we journey toward it, casts the shadow of our burden behind us.” (Samuel Smiles)

Together we can make CF stand for Cure Found.

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