I know updates have been spaced and limited in information. I wish I could say it’s because we are happily enjoying our time on the East Coast or it’s because we are spending quality time with the kids.

It’s not and the reality of it all is pretty depressing. However, I had a realization the other day. You are all on this journey with us. The ups, the downs, the hope, the sadness, the heart break, the praying, the worry, the excitement… All of it.

You’re all sharing Katja’s journey with us. The good, the bad and the ugly. So here it is:

The bad:

Katja continues to feel unwell. Her typical day is spent sleeping until about 8:30am (1.5hrs later than normal for her). She’ll have breakfast, meds and spend her morning playing with Finn. They build forts out of hotel blankets, color, play games or watch Disney together. She’ll have lunch, afternoon meds and crash shortly after. Naps range from 30mins to 2hrs. By lunch she is usually complaining that she’s tired, her chest hurts and she can’t keep her eyes open. After her nap, she usually lays in bed watching movies, as she’s too tired to do much else. She has dinner/night meds and goes to bed around 7:30-8pm.

She’s exhausted, crabby, emotional and depressed. She’s angry and upset being away from home, friends, family and her pets. She cries about everything from Nev accidentally throwing away a random paper that was “her new favorite paper” to her spending 45 mins sobbing about how if she has to have a mechanical valve she doesn’t want “a plastic thing in my body that makes a weird ticking sound.” This isn’t just exhausting for her physically, it is mentally hard for her too.

Finn is overstimulated as well and they are constantly arguing about everything. So Nev and I spend our days trying to keep them from driving eachother nuts, while keeping Katja occupied.

While doing that I’m constantly making calls, replying to emails and texts from nurses, Doctors and staff across 3 hospitals. I’m coordinating a back up plan to the back up plans. It’s exhausting. I’m worried about Katja, how far she is pushing it, how recovery will go with her this sick and the financial strain months in hotels and feeding all of us here will take on our savings.

Through all of this chaos, fighting kids, wife in calls, worrying about Katja, having her melt down all day, on pins and needles every time our phones ring… Is Jori. Working. How he can even focus, I don’t know but he sits at this tiny cramped desk, typing away. When he gives us a 2 mins warning of a meeting, I usher everyone into the adjoining room and close the connecting doors so he can have some peace. But who am I kidding? The doors are paper thin and the kids are loud. I see the stress in his face, as clearly as he sees it in mine. Hotel beds suck. We aren’t getting enough sleep, our backs hurt and all of us are depressed of hotel room walls.

The Ugly:

Katja’s running out of time. We are living echo to echo to decide how much longer she can wait. Her next one is tomorrow (Monday). We didn’t get a chance to properly celebrate her 10th birthday or for her to enjoy her summer. No vacation or summer “break”.

We’ve missed the entire summer with the twins. We haven’t seen the girls in almost 7 weeks. I miss them, they miss us. I know they are almost 16 but it’s hard leaving them home with my Mom and missing so much quality time with them.

We lost the last summer with Nev. The last months before my oldest heads to college are gone. We didn’t get to properly celebrate her 18 birthday. We didn’t get to properly celebrate her graduation. We will never get this lost time back. She heads off to college next week and we will most likely miss taking her to Hawaii too. We can never get this time back with her. As much as I know she understands, it hurts my Mama heart so much to know how much she has sacrificed this year for her sister. She’ll never complain but I know it hurts.

Jori’s job has been so understanding and we deeply appreciate that but we know the current climate in Washington’s Tech market. Layoffs are broadcast daily, Blind is filled with people going on dozens of interviews with no offers. It is not the Tech market of 2020 anymore. The pressure to perform while watching your child get sicker every single day is emotional draining. It’s scary and unnerving what’s going on with Tech. That pressure is a real stressor every day for him and I can see it in his daily tension headaches and forgetfulness.

I’m stressed. I’m worried. I’m barely sleeping or eating. I’m trying to care for 5 kids soon to be split across 3 States. My driving force is my kids. They consume every minute of every day. It’s left no room for myself and barely any to support Jori.

This is the bad and the ugly of having a chronically ill child. We miss birthdays, holidays and family stuff. We love each other and we do whatever we need to, to make life work. We sacrifice everything for each other. It isn’t always fair but it’s family.

The Good:

We still love each other. We are still here supporting each other. We can still count on each other. If anything we are stronger as a family. Katja needs that right now. She needs all of us. To know her sister would fly here to spend her birthday with us. That the twins are home loving our animals and sending us adorable pictures of them. That my Mom is holding the fort down while we wait.

We have hope. Hope Katja’s heart will be available soon and she can have her PHT. That all of this was worth it because it will be her LAST open heart surgery. That she may finally have a normal heart. That once the Chorea subsides, it won’t be triggered again. We have hope that all of that can happen. Only time will tell.

CHD isn’t always pretty. It’s bad, ugly and complicated. But it is OUR life. It is OUR family. It’s OUR normal. So we’ll keep mourning our losses, keep worrying about life, jobs, the kids and what’s next. We’ll keep doing our version of “normal” and we’ll keep hoping that the next call is “the one”.