driving home

Tuesday, September 30, 2014

Hello friends, we have spent the weekend + yesterday in NYC doing the usual Matilda check up bit. Right now we are packing up to drive home, which I am sure will be absolutely breathtaking and full of fall foliage. So while we enjoy that, I thought I would give you a little sneak peek at the Cloudy Day Craft Packs we handed out to all the kids in the PICU. And don't worry, I will give you the full medical update on Matilda next Monday or maybe Friday if you are lucky.

fall has arrived

Monday, September 29, 2014

We must have mentioned to Parker that Matilda was born on the first day of fall because he has been reminding us for months that fall would arrive once Matilda was two. And as it turned out, the day after her birthday the weather shifted and all of a sudden autumn was sitting on our doorstep. The leaves are falling like confetti, the air is nice and crisp, and we are spending as much time outside as possible.

a surprise visit

Thursday, September 25, 2014

Every Thursday I look back at a specific day and time that was spent with my daughter Matilda as she waited for, received, and recovered from a liver transplant. She was in the hospital for 72 days and we remained in NYC until she turned four months old.

October 31st, 2012 - a surprise visit

We got a surprise call from our friend Tyler Paul. It turns out that he got stuck in NYC and had to wait out the storm. Today was the first day that he was able to come for a visit and was at a nearby coffee shop trying to get internet access and charge his phone.

After a very suspenseful and emotional weekend, we welcomed the distraction and comfort that only a good friend can bring. He came up and saw a much different Matilda than he had seen just a few days earlier. She was now intubated and covered with more and more wires and tubes. He didn't know what to say or how to act, but we didn't mind. Just having him there made us feel loved.

I hadn't been able to make it back to the RMH for four or five days and was in serious need of a shower, so he offered to drive me - he had borrowed a friend's car. About five blocks in, we quickly realized that driving in the mess of the city was far more difficult than walking.

We were stuck in traffic.

A wave of panic rushed over me and I suddenly wished that I had not left Matilda. Spending time with my baby was far more important than taking a shower. I wondered if I should apologize, hop out, and walk back to the hospital. He would understand. But instead I said nothing, I did nothing. We waited in traffic.

Tyler texted, Matilda was fine.

We reached the RMH, I showered and was ready to head back in no time at all. Everything was always rushed when I was away from Matilda. Tyler Paul could feel my tension and tried to think of things to ease my panic. He asked if we would ever move to the city. I told him that I just wanted to go home to Montana, that living away from support was too hard, that life seemed too complicated, and that home seemed safe.

He asked questions about Matilda's care post transplant, what life would look like, and how we would pay for everything. They were all really good questions, and I told him none of it was important. I could not worry about things I didn't know for certain would happen. All that mattered was today.

He treated me as a friend should and I was so thankful. As tense as I was about being away, I also felt an incredible sense of relief, that is until Tyler texted. Matilda was doing well, but there were some difficulties in getting a new line placed - she had sprayed blood all over the room.

Our urgency to get back was heightened. When we rounded the corner to the PICU, I never felt as much relief as I did when I saw Tyler laughing with the doctors. All was well.

soccer league

Wednesday, September 24, 2014

Soccer practice started off with a very nervous Parker who wouldn't go on the field or kick the ball. Lucky for us, his coaches were so supportive and encouraging. It has now been a month and the kid loves to go, laughs with his teammates, and practices like a pro. Honestly, the hardest part (apart from that first week) has been keeping Matilda off the field.

tilda turns two

Tuesday, September 23, 2014

Even though we had a party for Matilda while we were in Montana, you know I could not resist doing a little something special for her on the 21st. The whole day was full of an abundance of love and not much else. It was perfect.

Parker and I picked up a few balloons and made a "maze", as Parker put it, for Matilda to enjoy. Because really, what is a birthday without a balloon or fifteen. We also made her a cake and since she is allergic to egg, we opted for a rice crispy (fruity pebble) version. And, of course, we snuggled and reminisced about the day she was born.

Matilda's life is like a fairy tale and we are definitely enjoying the happily ever after.*

*I am well aware that this line is cheesy. But listen, I can't imagine my life without her and I got as close as a mother can get to knowing what it feels like to live on without a child thriving and growing like Matilda is doing so beautifully. So excuse my cheese, but know that it is done with love.

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