A question I get asked often is “How are you so calm about Katja?” The answer is, well, complicated.

To understand why we take all of this in stride, you first have to understand Katja’s journey. We found out at 19 weeks pregnant that Katja’s heart was not “normal”. We had months to learn, prepare and advocate for her, even before birth. Her first open heart surgery (ohs) was at 6 days old. Her second, just before her 3rd birthday. Her third was just before her 8th birthday. We’ve had almost 10 years of repeating the same thing over and over.

We’ve watched Katja go through so much over the years. We’ve spent so so so many hours in hospital waiting rooms for news on her. In a way, you become numb to the process. The preparation, the chaos, the scrambling to do everything that needs to be done before a surgery. That is repetition. It’s become second nature to drop everything and plan a trip that keeps us away from home. Unfortunately the sacrifices our other children have to take during all of this, is also repetition.

I will never forget what the Make A Wish foundation said to us when I said “It’s Katja’s wish because she’s been through so much, so we’ll do whatever she wants to do.” Our case worker said “You’ve all been through this, together. As hard as it was on her, it was just as difficult for each of you. It’s your wish as a family”.

That really made me think. I talk a lot about what Katja’s been through. It’s easy for me to articulate the medical journey my daughter has been through because I worked in medical. What is still difficult for me to express is the journey the rest of us have been on with her.

From Nevaeh’s 8th birthday being a cupcake in the hospital cafeteria because her sister was literally on bypass at 6 days old, which was Nev’s birthday. To the girls being sent off to summer camp for ohs#2 when we didn’t have anyone to babysit. To missed parties during cold/flu season. Being removed from end of school year celebrations. Belated driving school enrollment and a graduation that has been rushed. The older 3 girls have made a lot of sacrifices over these 10 years. Finn spent 4 weeks without his parents at 2 years old for ohs #3. It took him months to get over having to stay home with his Grandma and sisters.

It’s no different for Jori and I. He’s been forced to pick between promotions at work and being there for his family. Giving up projects he enjoyed because Katja was sick. He’s had to put his career on hold multiple times because of Katja being sick. He’s given up so much to make sure Katja gets the best treatment. I don’t think we ever realized the blessing that is having a company support us through this. His current position at GE Healthcare has been a blessing. He’s received so much understanding and support, it’s been a huge relief for us.

And me, I’ve given up my career. I gave up nursing and my company. 5 kids is a fulltime job. A sick kid is a fulltime job. Having 2 fulltime jobs makes a 3rd impossible.

The thing is, we’d all do it all over again. Katja has been through so much, we’ve all been through it with her but we know it’s worth it.

So how are we all so calm about this? Because it’s the 4th time. Because it’s “normal” for us. Because the alternative is losing Katja and that is a sacrifice none of us are willing to take. Because repetition makes a habit and a habit can become a belief. Our belief is that all of this leads to a better life for Katja.

We believe in Katja. We believe in her teams. We believe PHT will give her a chance at a full life. We believe in each other and that has gotten us this far.