It's really hard to not think about all of the things we are missing out on at home - or even all of the things Little Bird is missing out on because we can't be the best parents for her right now. Having a sick child makes you think a lot about how "unfair" the situation can be for the healthy child. If we had been able to stay in Tulsa, this would be a much easier situation for our little girl. When she's sad, she will say that she wants to go to "our house" and that she doesn't want to stay at HavenHouse anymore. She talks about missing A.C.E., she asks for her little potty (since we had to put potty training on hold) and she wants to see Baby Rowan all the time, but can't because she's teething and has a runny nose. When only one of us is with her, she asks for the other.
Our son is missing out on newborn pictures. He didn't get to have his 1st Christmas with family. He didn't get to "go home" with Mom from the hospital or go to his first well-child checks, or get his first bath at home. We only have a few pictures of him where he doesn't have a sternotomy scar - two pictures for his whole life. He spent the holidays with his chest open lying sedated on a ventilator.
None of this is fair to my children.
I think sometimes about the Christmas I'd planned for my family that we didn't have. We spent Christmas desperately searching for ANY open restaurant or gas station so we could eat a meal and crying because we were so thankful that our son wasn't the one a young family had to say goodbye forever to a few doors down. He looked angry and hurt when he was awake, and cried silently.
When you've been in the ICU for two months, it's really hard to remember that this is temperary and that children are resilient. It's hard to feel like this will all be a memory one day and not to feel guilty about the world your children are in. But I can't think about that. I have to frame my thoughts differently. I spend a lot of time refocusing when I start to dwell on things like this.
Two years ago (almost), I was having a really hard time working and taking care of Little Bird while Doc was out of town for a month. I was frustrated and felt alone, and then I realized that I wasn't being the person I wanted to be.
I wrote in dry erase marker across the mirror:
"Stop bitching. It isn't sexy."
So I think that quite frequently now, but I've ammended it some.
"Stop bitching, whining, or feeling guilty. Women who are strong but warm hearted are sexy bad asses. Be one of those."
I want my daughter to be strong yet full of warmth. I need to show her what that looks like. So yeah, it's hard to be in this situation, but - when life challenges you, you rise to the challenge. Smile and laugh and love despite what horrors come upon you.
We will go home. We will have many chances to celebrate the holidays together. Little Bird will get to be potty trained like she's been asking to. She'll get to play with baby brother all the time. We'll play fetch with A.C.E. and read books together and remember that distant memory of that time we all pulled together and came out capable of feeling more joy than we had going in.
If I was in Tulsa, life would be easier. But I'm not. I'm here. This is an opportunity for me to challenge myself to be strong without letting my heart turn to ice. But we're crossing milestones now. He's actually getting better. And we WILL be home. Soon.