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December 31, 2019 / JustinKays Porter

2019

I’ve intended to write this post for a few weeks. I couldn’t get my act together to send out Christmas cards, or write a Christmas related post, so this is my last ditch effort for a post in 2019. I want to write something that sums up what this year has meant to us, but I’m not sure how to put that into words. I’m currently sitting in a hospital room, watching my 2.5 year old daughter nap after another IV, another injection, another traumatic morning, another round of thoughts that no one should have to go through this. Seems like as good a time as any to try to get my thoughts down on paper (e-paper?).
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Five words to describe this year? Wonderful. Devastating. Traumatic. Exhausting. Hopeful. While I try my best to keep the first and last words at the forefront of my mind, I slip up. Despite my better intentions, sometimes I dwell on those scarier, less pleasant words. And that’s ok. This year has shown me the highest highs and the lowest lows and everything in between, but it has also shown me how strong my family is. How much love and hope there is in the world. How life doesn’t have to be all sunshine and rainbows to be beautiful.
We started the year pregnant with a baby boy on the way and a little girl who couldn’t walk but otherwise seemed fine. We’re closing out the year with a seven month old tank of a babe on the verge of crawling and a 2.5 year old receiving intensive experimental medical treatment that is working, for a condition that would have been considered untreatable just a year ago. Maybe the best word to describe this year is “journey”? Because what a journey it’s been.
My mind divides the year into a few distinct periods: blissful ignorance, doctors and specialists pre-diagnosis, Nate, diagnosis and dark days, and Chicago. The year started off uneventfully. I was pregnant and getting very large very quickly. Millie was doing great in all aspects except gross motor skills but no one (including me) was very worried about it. I’d hear stories frequently about late walkers and figured that was our girl. She would move when she was ready.
Then she got a cold, on a trip with my family to Kentucky and North Carolina. When she recovered, some interesting things were happening with her eyes that we decided to have checked out. That trip, that cold, that weird eye cross and twitch, started us on the path to here. With every doctor appointment, every new referral, every person that said my gut tells me something is going on here, I got more nervous. More afraid that either something was wrong with my girl or that we were on a wild goose chase for nothing and she would be terrified of doctors for the rest of her life (true story…). It helped that I was 7, 8, 9+ months pregnant during this phase. Baby boy gave my mind something else to worry about because I had to control over what was happening to Millie, but doctors and nurses and schedulers saw us and said, “Oh… Let’s see if we can get you in sooner. Before that next one arrives!”
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And arrive he did. Baby Nate, what a joy. While unborn baby Nate gave my mind something to cling to during all the unknowns of the spring, the unknowns also kept me from dwelling on the coming labor, newborn haze, and helping Millie transition to being a big sister. All of which went remarkably well. Nate was born in the late hours of May 23, a cold rainy day, to an unmedicated mama and a very supportive daddy. The labor wasn’t short, but the final stage happened so fast no one was quite ready. I take that back: Nate was clearly ready! He almost literally flew out, with the cord around his neck and a quick (but unnecessary) and slightly panicked visit from the NICU team to clear him as just fine. That’s a story for another time! Nate’s newborn days passed in a cuddly sleep deprived haze, as most newborn days do. Summer weekend trips and two happy kids almost let me forget about impending doctor appointments.
A few weeks after Nate was born, Millie had that fateful MRI and panic set in for me. The weeks of waiting for additional tests and a diagnosis were long. And then I got the call. I’ll never forget it. I was getting in the car after getting a haircut on a Friday afternoon. Our geneticist at Stanford called and said she had news to share. Could we come up to Stanford that evening? The building would be closed but our neurologist and geneticist could meet us. And clearly wanted to. Describing what happened next is beyond words. Arriving at a dark, empty doctors office. Meeting with two doctors that had tears in their eyes before they even spoke. Knowing the worst was happening, but not knowing what that meant.
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I couldn’t function. At 32 I quite literally couldn’t be alone, much less alone with my kids; it was all so much more than I could handle. My parents moved back to their house in San Jose to spend most days with me just to make sure we all made it through the mundane. I’m actually crying right now, remembering those days.
And then Chicago. We found out about the study and started the process of getting Millie involved. While it was a whole new kind of stress and worry, at least we had something to DO. I’m a doer; I think that was one of the hardest things about those first weeks. “This is happening to your daughter. All you can do is watch and try to keep her comfortable.” And then… CHICAGO.
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Through all the appointments, surgeries, injections, unknowns, and traumas, we’ve been together. I have a letter board back in Campbell that says “Together is my favorite place to be.” And that is even more true now that when I wrote it so many months ago. I can honestly say that things are going better than we had any right to think they would. Is this what I thought my life would look like right no? Hell no. But we don’t get to chose what life gives us. All we can do is make the best of it.
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Our life in Chicago is wonderful. Different, but wonderful. We’re so far from the life we built in Campbell, but we’re getting so much here. Not even including the amazing things Chicago has done for Millie; obviously there are those things. That’s why we’re here. But we’ve also gotten to know and deeply love our family in and around Chicago. We go on dates. We have an awesome babysitter who comes once a week. Once a week!!! Justin and I have been on more dates in Chicago than we have in the last few years at home. Justin works from home here, which equates to so much more time. We don’t have a car and walk everywhere (usually timing our outings with the weather!). We’ve gotten really good at getting kids, carseats, and strollers in and out of Ubers. These are all things I never thought I would say. And yet here we are!
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BUT. But I miss my dog. I miss my family. I miss my backyard and the ocean and the mountains. I know we’re doing the right thing and it’s so awesome that we have the chance to save a life… BUT. Injection days are brutal. Exam days are even harder. It’s a lot, for all of us.
I truly believe that some phases of life you just have to survive; muscle your way through it and hope for better on the other side. Sometimes you make it out better and stronger, but sometimes you just make it. That was 2019 for us. And survive we did. But you know what I want for 2020? To THRIVE.
I may not have gotten Christmas cards out this year but I got (and loved!) all of yours. All your cards, gifts, love, prayers, and happy thoughts. Our picture may not be on your fridge, but I know you carry us in your hearts. I feel it, and I thank each of you for it.
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9 Comments

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  1. Connie Ray / Jan 3 2020 1:17 pm

    So beautifully shared. We love that we can receive updates and your blog is amazing! Dan and I keep Millie in our prayers as well as you and Justin. We psY for full recovery, mobility and wonderful health for sweet Millie! We send love, encouragement and well wishes for our new year ! Much love, Dan and Connie

  2. grannie annie / Jan 2 2020 5:29 am

    beautiful and poignant post. tears in my eyes. love all of you brave souls kisses and hugs

  3. The Hartley's / Jan 1 2020 3:55 pm

    Thank you for the beautiful thoughtful post. Bye bye 2019; hello 2020 and a new decade filled with hope. Love and blessings, Bob & Roni

  4. Stephen & Danielle Cronin / Jan 1 2020 12:13 pm

    You have an amazing talent with words. We love you all SOOOOO much. Thinking of you guys all the time and wishing you an amazing 2020! Hugs and kisses xoxox

  5. nancywporter / Jan 1 2020 11:19 am

    Love your honest recap of 2019 (smiles and tears here). You all are well on your way to THRIVING. Hugs.

  6. Anne and Jeff Williams / Jan 1 2020 7:41 am

    Thank you for the honest and loving recap of the year. You two are truly brave soldiers and have so much love for your children… We are humbled!

  7. cj5017 / Dec 31 2019 10:37 pm

    2020. A new year, but, maybe more significant, a new DECADE. Life has thrown so very much at all four of you, but together always makes it better.

    So much love for you all.

  8. Ellen / Dec 31 2019 10:03 pm

    Sending you all love and light.

  9. Debbie Perry / Dec 31 2019 7:42 pm

    So absolutely true and wonderful ❤️
    Love you all
    Pioneers in this journey 👏👍😍

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