Nine Months

Well today, it’s been exactly nine months since Alex had the seizure that initiated “The New Normal: Day 1” as we like to call it. A lot can happen in 9 months, the obvious one is that you can go from the conception of life to holding that life in your arms and never remembering a time where that life was not a part of your life. That has become an important image for us, because in the midst of facing the possibility of death we have found only new life. It’s interesting how powerful the image of new life is. Our niece Vera was only a couple months old when Alex was in the hospital the first time. He was laying in the bed trying to adjust the rubber bumpers that were there in case he had a seizure when he looked up and saw our sister-in-law, Jenny, walk in with Vera and our nephew Jonas. They had completely surprised us. Josh, Alex’s brother, had flown them down without us knowing, and right when they came in, Jenny plopped Vera down on Alex’s lap. Alex said that when Vera sat there, it was like he had just been given a sedative. Vera has been known to be a pretty “chill” baby, but what it was for Alex was that it was the first moment where he wasn’t thinking about himself or concerned about what might happen to him, he was happy and completely present, and just so thankful to be holding his “ginger niece” whom he had only met in person once before. Alex has said that when he’s felt down or depressed throughout the past few months, he’ll just think about Vera’s sweet smile and he’ll immediately feel better. We are thankful for that gift.

The moment with Vera in the hospital. You can see Alex going into a state of sedation.

Our friends H and Flora also had a baby named Lucy around the same time Vera was born. We love Lucy, she is a blonde, cute, doll baby. Every time we see her, we can’t help but smile. We got to spend the Super Bowl with her as well as sixty or so other people. Before that day, Alex was having a hard time being around crowds (the noise and stimulation would make him quickly tired and irritable) so he was nervous about going. As soon as we saw Lucy, Alex immediately felt at ease. Her cute little face gave us joy and we were able to enjoy the event without much problem. That experience gave Alex the hope that he could be more at ease in situations that he always enjoyed before The New Normal: Day 1, especially if Lucy was around : )

Amy at the Super Bowl party with Flora and Lucy (and her "Terrible Towel" bib)

Our most profound experience so far with “new life” was when our niece via “BFF”ness (BFF=Best Friends Forever) Eva was born (back in December). Eva is the first child of our good friends’ Doug and Christy. While we were going through the surgeries and radiation etc. we would talk about how genuinely excited we were for Doug and Christy. That was a big deal because it wasn’t very easy for us to be excited for other people in general because of what we were going through. When Eva was born, Alex was switching anti-seizure medications and felt pretty terrible at the time. “White noise” was unbearable for him, so if he was out in public, he’d have to wear headphones and quietly listen to music just to be able to block out the noise and have a conversation. We got to meet Eva the day after she was born and when Alex got to hold her, his symptoms immediately went away, no joke. Eva also was apparently fussy before we got there and fell asleep as Alex held her. Amy also gets pictures of Eva texted to her all the time and it’s always a highlight of her day. One of favorite pics of Eva is one Amy received of her smiling big on the day that Alex got his last “clear scan”. We are very thankful for the birth of Eva because it has helped take the focus off ourselves and allowed us to be excited for others and also celebrate life.

Alex holding Eva (1 day old)

The literal image of “new life” has been a constant reminder for us of how we’ve been given a new life especially with what we’ve had to face these past 9 months. We’ve been very pleased with the improvement Alex has made, and will continue to make, and we look forward to being able to be more and more giving to others even as we remain in the cocoon of recovery. One of the first realities we’ve had to face when this started was whether or not we’d be able to have children or be equipped to raise them (doing so is definitely a dream of ours). We are feeling very hopeful on that front at this point, and in the meantime, are extremely grateful for the opportunities to share in the amazing miracle of “new life” with others.

Much Love,

A + A

P.S.

We had a great time at the Brain Tumor Conference and got a chance to meet many wonderful people and families afflicted by the same disease. Thank you all  for your prayers and good thoughts.

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