halloween 2014

Friday, October 31, 2014

When we were creating the Halloween Craft Packs for the PICU back in September, Parker so proudly declared (as he matched up his costume on those cute little olliblocks) that he would be a "skeleton bone man" this year and Matilda would be a witch. It didn't seem super creative, but to Parker it was an original idea and that is all that matters. And really, there is something so classic and fun about sticking to the basics.

Parker is wearing pajamas with make up. Matilda has on a dress I bought long ago but that is still a little big, paired with a black undershirt and tights, a homemade hat (felt, cardboard, and hot glue), and a cat for good measure. Simple, already in the closet, and still cute as can be. In fact, Parker got annoyed with me because I kept on telling him how cute he was despite the scary faces he was trying to spook me with.

Happy Halloween everyone and take it easy on the candy.

an offer

Thursday, October 30, 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.

November 1st, 2012 - an offer

It was about 10pm on November 1st, 2012. I was floating down the hall steps behind Jen (one of our fave night nurses). She had come to find me in the NICU's pumping room. Dr. Florman, the transplant surgeon, was in Matilda's room. There was only one reason he would be there - an offer.

I had never felt so much adrenaline rush through my veins. Not when Tyler proposed to me, or when I found out I was pregnant for the first time, or second, or third. Never had I felt this lifted or surprised by news.

With Matilda a few feet away, he told us of a two-week-old baby from Missouri. A baby who went to the hospital with a low grade fever. A baby who died of accidental suffocation at the hospital. He told us that the risks were great. They don't usually use organs from babies who die of unknown causes. They don't usually use organs from babies with unknown fevers. They don't usually operate on babies like Matilda who was on so many different medications to stay alive, who was just pumped full of antibiotics to fight off a simple urinary tract infection, who could not keep a steady blood pressure without three different medications.

He told us that if something were to go wrong at any point of the surgery there would be no saving her. No going back. This was it. He told us that we could go over statistics, but the reality was that Matilda's chances were either a zero or a one, a no or a yes. But, by not saying yes to this offer, it would be saying no to her life.

We understood completely what he was saying. We knew she was at her very end. We knew that. We looked at each other and both responded with a yes. He said we could have time to think about it, but we didn't need any more time. We knew. Everything felt right. This was it.

The risks were great. But without the risk, there was clearly nothing left. And the reward. The reward of having our baby survive. That was worth the risk.

jack-o-lantern redo

Wednesday, October 29, 2014

No joke, last year's pumpkin carving day was the worst. As parents sometimes we like to tell ourselves that kids are forgiving, which they are, but sometimes that forgiveness takes a long time to earn. For me, it has taken a year.

Parker has the kind of memory that hugs emotion close. He can recall very specific conversations that occurred when he was only two years old because the emotion he felt cemented every last bit into his brain. So, I should not have been surprised when the great pumpkin carving fiasco of 2013 was brought up in conversation almost weekly for an entire year.

Nothing big, just little reminders here and there when it would cross his mind. "But Mom, remember that I don't like to feel the inside of things, like pumpkins." Or, "not everyone likes to feel dirty and that is okay. It is okay to not like touching pumpkins."

So you can imagine that this year I was determined to replace that frustration-filled failure of the year before. Lots of you suggested using gloves, which is so logical but had never crossed my mind. Thank you, each of you, because it was the best solution for a boy who wants to participate, but doesn't want to touch.

We had the best time. Our conversations were filled with lessons on differences, opposites, and acceptance. With a sigh of relief, Parker looked up at me at one point and said, "I am so glad that under these gloves I know my hands are clean." We worked together on gathering the seeds and I took care of removing all the gunk. We were both relaxed as we planned our pumpkin faces and the company while I carved was top notch.

Matilda missed out on everything because she was having a much needed nap and I think it was best for everyone. Parker and I needed that time together to make up for last year. And when she woke, Parker took her hand-in-hand and showed her the great transformation from pumpkin to jack-o-lantern. She soaked up the excitement and was thrilled to take part in the the enjoyment that filled the room.

pumpkin patch

Tuesday, October 28, 2014

We took the kids to a local pumpkin patch in the morning on the day that Matilda was first admitted to the hospital. When we awoke that morning we had no idea she was sick. No idea she was crying out for help. No idea that our world was about to change. That goes to show just how fast it progressed. I still have visions of a tiny week-old Matilda sleeping soundly in Tyler's arms - uninterested in eating, uninterested in waking, uninterested in moving. Part of me wants to go back to that patch, to redo that awful day. But Tyler said it makes him sick even thinking about it. And I respect that.

This year, both the kids were so excited to go pick out pumpkins. Matilda repeated the word over and over and Parker smiled from ear to ear watching her excitement. We can't redo that day, two years ago, but we can make the best of today. We are so blessed. So lucky to watch Matilda grow, to experience all the goodness of childhood.

This time of year my emotions are all over the place, but holding onto my family, holding onto these new memories we create together seems to make the tears fade. To us, a visit to a pumpkin patch will never just be a simple visit to a pumpkin patch.

talking like she's two

Monday, October 27, 2014

And just like that, Matilda started talking. Every day she says more and more new words, she repeats everything we say, and she beams with pride. My favorite is when she adds something into a conversation with ease, just casually slips in a "see ya", "yeah sure", or even an "okie dokie". She can't help but smile and enjoy this new found freedom of expression that I too often take for granted.

Happy speaking Matilda, you have a lifetime ahead of you to speak your mind and let your feelings be known. Let your voice grow, let your wisdom lead, and always, always be nice.

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