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May 27, 2022 / JustinKays Porter

Heavy Heart

The events of the last week have weighed heavily on my heart. I can’t help but feel solidarity for the families and friends who have lost loved ones, especially children. This is not a political space and I don’t plan to make it one, but my heart feels heavy. I’ve been thinking a lot about Millie and it has struck me many times over how fortunate we were to be able to say goodbye. To spend the last weeks and days with her in places she loved, surrounded by people she loved. We read our favorite stories, played our favorite songs, walked in the sun, and held her close. Millie knew she was loved; she knew she was safe. Beyond that I’m not sure what she knew, but I’m so grateful that we were able to give her that at the end.

No one should have to lose a child. My heart aches for the families who weren’t able to say goodbye, weren’t able to wrap their babies in love and safety and kindness as they took their last breaths.


I wrote the blog post below in March of this year. And then I immediately decided not to share it, because it felt like way too much to put out into the world. Rereading it now, I’m crying. A lot. So… fair warning? I’m not sure if this is the right thing, but I don’t want anyone to wonder if Millie was in pain, or alone, or terrified. So, if you’re up for it, grab some tissues and read on. Or don’t, I really won’t be offended. Maybe it just feels right to share the story of a peaceful ending, rather than the brutal chaos others are dealing with right now.


Last March, we had a scheduled visit with our RN and social worker from Coastal Kids (who, in my mind, were really just the support system for our angel of a CNA. Love you, Andi). Millie had been fading fast, and we all knew it. Millie died last year on March 23, and with our one year quickly approaching, I keep replaying moments of those last few weeks in my mind. This visit from Coastal Kids sticks out as a big turning point; but in reality it was only about a week from the end. We had already turned the corners, or passed the points, or whatever metaphor works best.

We had Millie’s cocktail of meds dialed in, and during this visit she was very relaxed; dozing in and out of sleep as the nurses examined and the adults chatted. We were in the front yard, as the pandemic was still in full swing, but it was a mild, sunny day. The breeze was brisk and still felt like winter, but the sun was warm and felt more like spring: the brutal promise of a new beginning as a too-short chapter was unfairly coming to a close.

After a long exam, the nurse stood up and gave me that look. If you know that look, you know. And if you don’t, I hope that you never will. It’s a look of sadness, of pity, of hurt; but more than anything, it’s a look of finality. I don’t remember what she told me, but it was something final. Millie’s organs were shutting down. We could continue her feeding schedule and keep her with us for a few more weeks, maybe a month. Or we could start (continue?) the process of letting her go. Keep her comfortable, keep her home, let her feel loved, let her body end it’s cruel journey with less medical interventions. We chose the less is more route, knowing that we likely had less than a week with our beautiful baby girl.

The rest of the visit was a blur. I think it was mostly details that I couldn’t be bothered with: funeral arrangements, medication schedules, general “what-to-do” information. I can honestly say that all I got out of that part of the visit was this: “Call Andrea” (Who I now affectionately call Andi. Once again: love you, Andi!).

I remember them talking. I remember hearing words that didn’t mean anything. I remember watching Millie’s face, seeing her sleep so peacefully, as the details of the end of her life were sorted out. The cool breeze lifted her curls; she sighed deeply, contentedly. As everyone was leaving, she opened her eyes. I watched as she scanned their faces, then settled on me. Those larger than life green eyes were clear, and comfortable, and ready. More ready than I ever was, probably more ready than I will ever be. I remember feeling like those eyes, that soul, knew everything. She knew the secrets of the world, but she couldn’t share them. She knew what was coming, but couldn’t change it. She knew how much it was all going to hurt me, but she couldn’t help me. Millie had made peace with her life in those last moments of clarity, but I couldn’t do the same. I still can’t, but I’m trying. For her, for Nate, for Justin. For me.

As the last weeks turned to last days, last hours, last minutes, I held onto that feeling. That Millie knew, that she had accepted it. Was ready for it, maybe even wanted it. I’ll never forget sitting with her on the front porch, in the rocking chair by the fire, laying with her in bed in that last week. There were a few more moments of clarity where she opened her eyes and seemed to stare straight into my soul. Past my mind, past my heart, right to the part of me that defies logic and pain and guilt and sorrow and knows the truth: She was ready. I loved her, and she loved me, and sometimes that’s all there is. It never feels like it’s enough when you’re the one left, but in her way, Millie tried to tell me it was enough for her. She was surrounded by love and I’m so grateful that we could all give her that, from near and far. She loved us, and we loved her.

April 11, 2022 / JustinKays Porter

Baby’s First Sand

Babies and sand: not a combination that I looked forward to as a first time mom. At all. Millie was a very tactile baby and I knew it would be a mess when we finally plopped her down onto the sand and let her go to town. She loved to play with her food, she loved finger painting, she loved to touch and squish and feel all the things. At the beach, I knew the sand would end up in her hair, her mouth, her clothes, probably her eyes if I wasn’t paying attention! But I also knew she would love it. Even if it only lasted five minutes, it would be five minutes of pure joy.

We went to Morro Bay for a few days shortly after Millie’s first birthday. By this time we already knew she loved the coast, but it was the first time we were planning to take a blanket out onto the sand and stay for as long as she would let us. We had typical California summer beach weather: foggy and freezing in the morning, with the sun making an attempt to emerge in the early afternoon. We, being seasoned Californians, made appropriate plans to arrive in said early afternoon. We even brought an umbrella for good measure, but I’m not sure why: when the sun finally makes its appearance at the coast in the summer, nobody wants to be under an umbrella. You soak up that sun and thaw out from the morning chill!

I digress. The beach was mostly empty and the long stretch of sand between the parking lot and the ocean was a pure, powdery white: the best kind of beach sand. I walked across the breezy, fog-shrouded beach with Millie in the sling, following Justin with the umbrella, blanket, and beach bag. We chose a spot at random, set up beach camp, and sat down. We put Millie right on the edge of the blanket and showed her the sand.

Millie didn’t hesitate. She reached forward and grabbed two handfuls of sand and then froze. She looked at the soft white stuff closely, then rolled it between her fingers. She studiously watched with a furrowed brow as she opened her hand and let the sand fall back to the earth, a slow trail of tiny white particles cascading through the salty air. Millie turned to Justin and me and grinned. She proceeded to scoop up handfuls of sand and dump them out anywhere she could reach: back on the beach, on the blanket, over her toes, in her hair, on my legs. I’m guessing this lasted about ten minutes, and then she scooped a handful of sand right into her mouth. And was very disappointed that the beautiful white stuff did not feel beautiful in her mouth!

After a few minutes of disgust and mouth-cleaning, Millie would not be deterred. She went right back to scooping and pouring. Millie had a surprisingly long attention span as a baby. At this age, this kind of activity was her jam, and I remember being happy that the sand at the beach fit right into what I knew about her. She loved it, but I think we lasted about half an hour (maybe less?) before the sand accumulating in her clothes, under her fingernails, in her hair, in her baby neck rolls, got to be too much. So we packed up and left, her first sand experience a good one. As far as I can remember, she only shoveled sand into her mouth once.

I’m not sure why I remember this so clearly. It might be because of the sand and the sea and the salt, things I’ve been thinking about a lot lately. But it might also be because I saw a photo of it last week. Or it might be because that night we saw one of the most incredible sunsets I’ve ever seen, and it burned all the details of that day permanently into my mind.

Future trips to the beach with Millie were a delight. Santa Cruz, Lake Tahoe, Hawaii… she didn’t discriminate. Millie loved the water, and it will always remind me of her.

I also have to throw this in here: Nate absolutely hates the sand. Won’t touch it, refuses to set foot in it. Unless it’s hard packed and the activity involves playing in the waves, then he’s into it. Pretty crazy how different our kids can be, isn’t it?

February 28, 2022 / JustinKays Porter

Cranes

In the first few weeks after Millie passed, I frequently relived this memory. It doesn’t really make any sense to me why this particular memory kept rising to the forefront in my early days of grief, but it did. It’s such a simple, joyful thing to remember; a child’s awe of things so much bigger than themselves. I always think of Millie when I see a tower crane on a construction site.

Just a bit of back story if you’re not aware: Our family moved to Chicago for Millie’s medical treatment in September 2019. We rented an apartment and every Monday morning made the trip to the children’s hospital for treatment. We arrived at the hospital at 8:30 and generally made it back home by lunchtime. Justin and I traded weeks, and we would call our hospital trips “dates.” Millie loved the one on one attention associated with the dates, even if she didn’t love the time spent at the hospital. We developed routines to pass the time and ways to make it all a little easier on our sweet girl. The nurses on the 19th floor are some of the most wonderful people we met on our journey (not sure if any of you are reading, but you’re all saints!). This memory is associated with our dates to the hospital… I finally got up the courage to write it down in July, but it’s something I come back to again and again.

When we lived on Wood Street in Ukrainian Village, our apartment was a straight shot west down Chicago Avenue from Lurie Children’s Hospital. Chicago Avenue is a main artery for people living in west Chicago to get to downtown, with three or four lanes of traffic going in both directions. This was before the pandemic lockdown went into effect, so the two-mile drive at 8 am on Monday morning took anywhere from ten to thirty minutes, depending on traffic, weather, and the luck of the Uber driver*.

The good thing about sitting in traffic with a toddler: there was never a shortage of things to talk about. Cars, buses, bicycles, buildings, clouds, flags, snacks, toys, airplanes, birds… you name it, we saw it on those drives. Lucky for us, there was also a major development going on between our apartment and the hospital, which translated to lots of construction. Dump trucks, excavators, jack hammers, hard hats, construction cones, extra traffic; all the bright colors and loud noises and even more fun things to talk about**.

Millie’s favorite part of the drive was whenever the tower cranes came into view. We would see their red arms over the tops of the buildings near the construction sites, before we actually got to the development. She would always show them to me excitedly, always amazed that they were still there. We would count the number of cranes, but there were so many Millie would usually get it wrong the first try. She always managed to skip four when counting. Numbers according to Millie went 1-2-3-5, which probably also explains why we couldn’t count the same number of cranes!

When the Uber driver finally, slowly, crawled through the traffic past the development, Millie would look at me, point to the machines and half-built shells of buildings, and say, “Daddy, work! Daddy, work!” A big grin on her face as she clutched tight to whichever friend she had decided to bring along on our date. She would point and wiggle in her excitement. A few moments later, the excitement was followed by a deep, contented sigh. The cranes were still there, the construction was still happening, and now we could go about our date. Millie was always so happy and proud of herself for making the connection of these big huge things to her dad. I don’t know if Justin has this memory***. I don’t know if they turned their necks to keep those cranes in view for as long as possible. But we did. And it always made my heart swell to know how much Millie loved her daddy. It made me love both of them even more.

*Yes, we took weekly Uber rides to and from the hospital with our two-year old in a folding carseat. And I have to say we got really good at getting in and out of the cars quickly… Millie was always tolerant of the frenetic exchange and I think she liked the chaos that surrounded the beginning of our dates. Except when it was snowing. Or super windy. But then again, I wasn’t super keen on the Uber rides to the hospital in the snow either!

**Revisiting this now, Nate would also have absolutely loved these drives, and for the same reasons. It makes me both happy and incredibly hurt to compare Millie and Nate, and in this case I know she would have loved to show Nate all the things we talked about on these drives.

***Turns out, he does. Which is not surprising to me at all, but it kind of made this memory hit home every more today.

February 10, 2022 / JustinKays Porter

Memories

My most recent memories of Millie are almost a year old. I can’t even begin to describe what that realization feels like, how much it hurts. Nate is about the same age now that Millie was during what I consider to be her “prime”. Another realization that is so bittersweet; so many parts of daily life are painfully familiar, yet heartbreakingly different. Nate is interested in all the toys and activities that Millie loved in Chicago. He stumbles over his words in his excitement to finally be able to express himself, just like she did. And he is so proud to be able to show me things, and talk about things, and negotiate everything (let’s be real… he is 2.5!); I can’t help but think Millie would love watching Nate come into this phase as much as I do. He also makes me want to pull out what remaining hair I have, but like I said: he’s a toddler. It was recently brought to my attention that he may be closer to 3 than 2.5… but I’m choosing to ignore that for the moment!

In rehashing these memories of Millie, in reliving them with Nate, I’m reminded that so many of you didn’t have the chance to really know Millie. The move to Chicago upended us in a huge way, and the pandemic cut us off in an even bigger way. Travel became difficult, and the few connections we had made in Chicago seemed a world away. We were isolated, but you were all isolated from us as well.

When memories of Millie get too overwhelming for me, I write them down. Probably not a surprise to anyone who is reading this, because you all know that this is some form of therapy for me. I write down every detail of those memories that I can recall, immortalized by pen and paper. And then I close the journal, thinking I may want to revisit these journals someday. But I’m starting to wonder if closing that journal is selfish of me. There are so many stories, so many quirky bits of personality that I want to live on forever. So maybe it’s time to revisit my memories and share them here, with anyone who wishes they could have known Millie a little better. I know I wish that for myself everyday; but my time to get to know her was cut short. As was yours, but maybe I can extend that just a little bit for you.

And this may be a strange memory to start with, but it’s one I’ve wanted to share for a long time. I wrote this just after what would have been Millie’s birthday last year. It’s pretty raw, but I haven’t edited it. More than anything, I want you all to know where you can go to visit Millie.

A Return to the Sea, June 2021

June 14 would have been Millie’s fourth birthday. It was one of the hardest days yet, for me.

When you think about a fourth birthday, you think of birthday cakes and bounce houses and smiles. When you think of a four-year-old, you may think of a mostly self-sufficient toddler: a kid who can communicate, has obvious likes and dislikes, is probably full of personality and hopefully coming out of the dreaded threenager phase. When I think about a fourth birthday, I’ll always remember the quiet, sunny day we went to one of Millie’s favorite places to scatter her ashes. When I think about a four-year-old, my heart breaks.

Midmorning on June 14, we parked along West Cliff in Santa Cruz and started walking. I have so many memories of Millie along this path, with the sun on her skin and the wind in her hair. Millie has always loved the water. Pools, hot tubs, lakes, the water table in the backyard, a garden hose: the water always made her happy and brought a smile to her face. But the coast seemed to do even more for her. She was always happy there, and in the end, even when we weren’t sure if she was happy, the coast made her calm. A place that did that for her, always, seemed like the perfect place to set her free.

So we walked. I cried, Justin was quiet, and Nate and Flo both just wanted to be with us. We had Millie’s ashes in a backpack with us, and I couldn’t help but think that this was truly our last walk together as a family. We found a quiet bench and sat together, watching the birds and listening to the waves, feeling the sun on our skin and the wind in our hair. In my mind, Millie was on the bench with us. Her fingers tightly wrapped around the thumb of my left hand while my right hand combed the blonde curls back off her sun-kissed forehead. I could hear her deep, contented sigh and see her close her eyes against the bright reflections off the water. She was peaceful in my mind, and seemed to be at home on that bench with us. I want so desperately to hold onto those images in my mind. But in reality, my hands were empty. Millie wasn’t on that bench with me, but knowing that her spirit was there gave me the strength I needed to make it through that tough day and onto the next.

After our rest on the bench, however long it may have been, we started back to the car. Instead of the car, we found ourselves out on an empty point, on a new bench, with undisturbed views of the Pacific. This felt right. It felt like a place Millie would have loved. Not knowing what we were doing or the logistics of how to do it, Justin and I scrambled for a few minutes trying to figure out the details. We came to an unspoken agreement that I would hold Nate on the bluff, while Justin walked down onto a shallow ledge just below us with Millie. At the perfect moment, a breeze lifted off the bluff and curled out to sea. I have a vivid image of Justin, arms outstretched, with Millie’s earthly remains caught airborne and swirling out to sea and sand and sky. Free at last.

Justin spent a few quiet moments on that ledge and then came up to take Nate. I went down to Millie’s place and left a perfect, purple dahlia there in her honor. After my quiet moments, we sat on the bench on the bluff and cried together. I tried to explain to Nate that we were saying goodbye to Millie, but we could come visit her often here. In his sweet way, Nate looked up at me with his bright blue eyes reflecting the sea and sky. After a beat, he looked down to where I’d left the single dahlia, a bright purple spot against the pale rocks and sand. He waved to that flower and, I’d like to think, said his own goodbyes to his big sister.

May 8, 2021 / JustinKays Porter

Wildflowers

In the past, when I’ve sat down to write, the words have always been there for me. But this time is different: for the first time I can remember, the words seem to be just out of reach. This may explain why I haven’t had the heart to put my heart on paper (or a screen, to be more accurate). I’m still not sure what I want to say or how I want to say it, but there are things that need to be said. And because words are failing me, I’ll start with the truth: my sweet Millie lost her battle with MLD on March 23. She fought until the end, and we did everything we could to make her short time with us as happy and comfortable as possible. But what we had to give, what anyone could have given her, wasn’t enough.

I wish I had the confidence or certainty that so many of you have shared with me about where she is now. But it comes down to a simple fact for me: wherever she is, the pain is gone. In the end all we could do was love her. Wherever she is, she knows she is loved. So very loved. By me and Justin, by Nate and Flo, by our families and close friends, but also by all of you. I like to picture her in a field of wildflowers, smiling and carefree, with this Tom Petty song playing softly:

You belong among the wildflowers
You belong somewhere close to me
Far away from your trouble and worries
You belong somewhere you feel free

I’m sure a lot of you are wondering how we are doing. And I think you can understand how difficult a question that is right now. Sometimes we’re fine. Sometimes it’s all I can do to go about my life. I feel Millie in my heart and I carry her with me everywhere, and those feelings sometimes bring me joy and sometimes a sadness I don’t have words for. I know she would want me to keep adventuring, to smile with my whole body, to love so purely that it can be seen and felt by everyone, to not give up and be the best version of myself. Those are things she gave me, and I’m trying to pay it forward in her memory. Between the tears, of course; and there are many, many tears.

There is a Millie-shaped hole in my heart. I try to rearrange the pieces of my life to round out the corners of this hole every so slightly, to encourage the hole to slowly heal into a Millie-shaped scar. Never to be forgotten, and a beautiful reminder of a life cut far too short.

We knew the end was coming well before it arrived, and Millie gave us lots of time to accept what was happening and grieve with her. Looking back, it was a beautiful gift she gave us: to be able to tell her how loved she was and say our goodbyes without hurry. To know she heard every word we had to say, every song we had to sing, felt every tear we had to shed. It wasn’t easy, but it was such a Millie thing for her to be able to do. She always wanted to make sure that we were happy, that we were proud of her, that she was doing the right thing. I’m so glad we could tell her all those things and so much more.

The week Millie left us, every purple flower in my garden started blooming. Some right on schedule, some far earlier than they should be blooming. And no other color had yet popped out. You may say this is a coincidence, maybe it’s the California drought making some strange things happen. But I think it was Millie: telling me she’s okay, showing me that life can and will go on with fresh starts, giving me a garden awash in our mutual favorite color.

And would you look at that? It seems I did have the words. These words are big and scary and full of emotion, but that’s honestly how our life is right now. I’m fortunate to be able to share with you all, and I hope that together we can all keep Millie’s memory alive. She was beautiful, sweet, loving, strong: a fighter and a lover. She was everything I could have ever hoped for in a daughter.

November 2, 2020 / JustinKays Porter

One Year

On our trip to LA a few weeks ago, the study coordinator reminded me that we had just reached a big milestone. This week was Millie’s one year anniversary of being in the study and receiving treatments. After getting this reminder, I immediately started ugly crying in the hospital, much to the dismay and confusion of the staff there. They didn’t understand why something like that could be so upsetting. Shouldn’t I be happy? We were doing all we could for Millie; I should be proud.

Their reaction made me equally confused. How could this be exciting? When we’ve lost so much in the last few months? Proud? Excited? I’m terrified. I’m exhausted. I don’t know what to do, how to feel, where to place my hopes.

And then it hit me: these kind people don’t know my Millie. They don’t know the little girl who cruised around our Chicago apartment with her walker looking for chocolate covered raisins. The girl who giggled uncontrollably when her dog chased bubbles. The girl who had chubby cheeks and a little belly from eating m&m pancakes and peanut butter and avocado sandwiches and too many donuts. The girl who would help me read books and tell stories, who would ask to hear Van sing songs, who would spend hours in her tower watching me navigate our increasingly complicated life. The girl who loved to play with her babies, and make food in her play kitchen, and cook on the barbeque in her house. These people don’t know her. But I do. And I miss her every minute of every day.

The last few months have been hard. As much as we keep hoping and trying new things, Millie is not getting any better. And it feels like a little more of my girl slips away from me everyday. I still catch glimpses of her, but the smiles are harder to come by. And the smiles are really all we have. To be honest, I don’t know where to go from here, or what to do. I’m just trying to love her as best I can and be whatever she needs me to be. But I can’t help but remember and miss that little girl; I would give just about anything to hear her say my name, or give me a hug, or hold my hand.

I believe in miracles. But through this journey, I’m beginning to see that miracles come in all shapes and sizes. And as much as I want a big miracle for us, maybe it’s not in the cards. Maybe our miracle was having some extra good time with Millie, to watch her grow and shine and be her beautiful self for a few extra months. And…

This post has sat like this as a draft for a few weeks. I didn’t know what to say next. There’s more. So much more. More to be said, more to be felt. But right now, this is all I have. I can’t do “more” right now.

So I’ll end with this. My sweet cousin made us “miracle Millie” bracelets, and I would like to share then with anyone who will wear them (I have lots, don’t worry!). Wear the bracelet on your wrist, and hold my family in your heart. Send me a text or email or leave a note on the comments and I’ll get them to you. We have regular and youth sizes, but some adults (myself included) may like the youth size better.

And then this set in my drafts for another week or two. It felt unfinished. And today I realized what else I needed to say to you all.

First, thank you, for your love, support, prayers, check ins, positivity. For all of it. If love and happy thoughts were enough, Millie wouldn’t have a care in the world. I know you all care about us and the journey we are on, and I’m sorry it’s taken me so long to post an update. I struggle to share news that isn’t good, but it’s time.

Second, this post sounds very dramatic. Reading and rereading it makes me wonder whether or not I should post it. But here it goes. I guess I just want to say that there are still good things happening. We get smiles, we have easier days. We recently figured out how to get Millie back in a bike seat and she still loves it. There are happy moments and that’s what I need to remember.

And one more thing… I’ve suspended all my social media accounts in the hopes of improving my mental health a bit. So if you reach out on those platforms, I’m not ignoring you. Keep the love and positive vibes coming our way. Our fight is far from over ❤️

August 1, 2020 / JustinKays Porter

HOME

WE’RE COMING HOME!

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This is equal parts exciting and terrifying to me. I’ll explain why in a minute; but if this post is extra emotional, just know that I currently have all the emotions. All the feelings. All the things. It’s been a very busy, stressful month working out all the details. I’m finally confident that it’s all happening. It helps that we finally got our one-way plane tickets today; we’re moving back to California in less than two weeks!

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We’ve had a rough go of things the last few months, as have so many others. Our troubles are probably a little different than most, but it’s no surprise that I think we’re all still struggling. I mean we’re fine, right? Right. We’re fine. Sure we are.

Alright, here’s the story. We flew home to California in June for a much needed break and time with family (Yes, I packed up my kids and put them on an airplane during a pandemic. More than once. It’s fine, you can judge me.). A few days before our flight from Chicago to San Jose, our study coordinator informed us that UCLA had just opened as an injection site. And we should change our round trip tickets to one way tickets and just move home. In three days. Oh, you just signed a year lease? Oh, you have a life in Chicago? Oh, you need some time to wrap everything up before you can move? Oh, you’re not looking forward to moving AGAIN? For the third time in less than a year? Well, too bad. “They” have spoken. And “they” are pulling the plug on financial assistance for rent.

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If you know me, you know that my reaction to this was probably “WTF. NO.” I mean yes, take me home. But move in three days?! No. Even if by some miracle I could have made that happen (while Justin worked and I watched a newly VERY mobile one year old and a three year old who needs A LOT of help), we locked ourselves into a year lease in April. Because in April, we were told a California site was likely 9-12 months from opening. So…  ya. NO.

After a lot of emails, letters, phone calls, and so many new gray hairs, we reached a compromise. The sponsor would pay our rent until we could find someone to move into our apartment. And thank goodness our landlord was okay with this situation. And thank goodness we were able to find someone to take over our lease relatively quickly. Throw in scheduling movers, packing, selling, giving away, cleaning, parenting, and living… it’s been a wild few months. But it’s all coming together.

Writing this post, jumping through these hoops, spending so many hours arguing, discussing, scheduling this move; it all really has me thinking about home. Home means something different to everyone. Home is where the heart is. Home is wherever I’m with you. Home is a feeling, not a place. But you know what? To me, home is where my people are. While we’ve built a life in Chicago with so many wonderful people, it’s never felt like home. And given more time, I’m sure that I would get to a point where I had people in Chicago. But the vast majority of our people are in California. And even if I can’t see you and hug you (damn you, coronavirus!), I want to be near you. I need that strength in numbers that only home can provide.

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Now that I’ve told you my latest story and shared arguably too many of my emotions, I’ll give you a little day-to-day update. Millie has been on a scary downward spiral until a few weeks ago, but I think we might be on an upswing. We have a looooooong way to go, but I’m feeling a lot less hopeless. A few weeks ago we were getting very few smiles, Millie wasn’t eating or drinking, and struggled to even sit up on her own. But she seems to have rediscovered her appetite, is sitting up nice and tall unassisted, and is smiling more and more. It’s going to be a long road, but Justin and I really feel that being home and around our support system (again with the people!) will also really help. She is very very very excited to be going back to “Flo’s home” full time. As are we all!

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Nate is a wild animal. No really, he’s everywhere. All the time. He is so happy and so full of awe at the world. A new sound makes him giggle hysterically. He loves to watch the waves, but has finally figured out if he doesn’t walk toward the water we pretty much let him wander. Birds, flowers, dogs, sticks, clouds… he’s fascinated by all things outside. His favorite pastime inside? Banging on the door to go outside. Yes, I’m serious. I can’t wait for him to have a yard!

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We walk or bike to Lake Michigan multiple times a day. It’s no Pacific Ocean, but it’s beautiful. And I can walk there. And I will sorely miss that… the walking and biking trails near our apartment are wonderful. We have picnic dinners with the kids at the lake most nights. We go to the harbor and watch the sailing classes go in and out of the harbor in their tiny boats, chasing tennis balls. We watch the yachts come and go with their giant wakes; the swimmers and sun bathers yelling that they are too close to shore. We bike to the northern-most end of the lakeshore trail and eat donuts on the beach. You better believe we are taking full advantage of our proximity to the lake.

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The future is pretty hazy right now. Weekly flights to LA. New doctors. New routines. New, new, new. It’s going to take awhile to hit our stride. But we’ll get there. And we’ll have our people to help us.

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June 17, 2020 / JustinKays Porter

We’re Fine, Continued

Hello again. I wish I had better news to report, but all I can really say right now is that we’re still fine. I think COVID has wreaked more havoc on our lives that I thought possible, but we’re still chugging along. Millie has continued to receive her weekly treatments, and we are so lucky in that respect. But missing 12+ weeks of physical therapy seems to have undone all (or at least most) of the progress we’ve made since we moved to Chicago.

It really breaks my heart to even write that, but it’s true. And it’s about time I admit it. In March, Millie spent most of her time standing to play, would cruise around with her walker, could get herself out of bed, and would spend quite a bit of time playing on the floor laying on her belly and rolling around. These are all skills that she has (hopefully only temporarily) lost. For the last month, maybe more, she has only wanted to sit down in a supported position. The things she used to do happily or unhappily (but she would still do!) seem unreachable right now. It’s frustrating. It’s infuriating. It makes me want to hurt whatever asshole decided that physical therapy for toddlers wasn’t an “essential need.” The worst part is, we and her doctors think most of her unwillingness to do things is based in fear, not inability. But because she hasn’t done these things for so long, she’s lost the coordination and the muscles. We are on a very long uphill road.

 

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However, it’s not all dark and stormy. We’re a long way from sunshine and rainbows, but there are definitely blue skies ahead. There have to be. And now that the longest weather metaphor is over, I’ll hit some of the highlights. Millie gets excited about things. For awhile, she seemed so wrapped up in her own head and terrified of everything, that she wouldn’t have much emotion at all. Now, she makes the most adorable sound when she’s excited… it just warms my heart. That sound goes right to my soul every time, and it’s what tells me we’re still on the right track. What gets her excited? Walks (we bought a new stroller, that I’ve dubbed the “chariot”, and she wants to be outside, cruising through the park or along the lake front all day every day.) Brownies. Basket rides (in an empty laundry basket). Countdown chains. Talking to Flo and Lola on FaceTime. Bike rides. Going to our “other home.” Legos. Reading books. Picnics in the park.

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Summer in Chicago has finally arrived, and it really is as beautiful as they say. The city is so green, the lake is so blue, the weather is wonderful, and our apartment is such a short walk from so many gorgeous places. That are finally starting to “officially” open. Although many of them have been unofficially open for weeks, and we’ve been taking full advantage. The beautiful places to go and the weather have improved all of our moods, to say the least.

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We also (finally) started up with physical therapy again last week, and I can already tell a difference. Having anyone other than mom and dad ask you to do something makes it so much more palatable; something I never really understood until now. All you parents reading, you know exactly what I mean! We’ve been able to get Millie back in her tower for brief stints, doing some stand-ups from a sitting positions. We’re just trying to do everything we can to get her confidence up, and maybe build a little muscle along the way.

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In other news, Nate is walking! I would say as of today he spends about half his time walking and half crawling, but he is very quickly ramping up the walking. He also loves to be outside and does NOT like to come inside. Ever. Which is rather difficult, as we don’t really have any outdoor space at our apartment. So back to the stroller and the park we go! Nate babbles, he giggles, he listens, and when Millie makes her excited sound, he loses it with a huge grin and big belly laughs. Anytime I can get that combination, it makes such a bright spot in my day. And those little bright spots are what I need!

I think that’s all for now. We’ll keep on keeping on, and I’m sure you will too. xo

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April 19, 2020 / JustinKays Porter

We’re Fine

It’s been awhile. A LOT has happened in the world since I’ve last checked in. So let me start by saying we’re fine. We’re healthy, we’re safe, we’re fine.

The clinical trial we are involved in is considered “life-saving” (they’ve progressed beyond “essential” at this point), so we are fortunately continuing to receive weekly treatments. Our Monday trips are looking a little different; the children’s hospital is very empty. There are check points at every entrance with manned hand-sanitizer stations and masks are handed out to everyone. Sanitizer and masks are no longer optional, but required. The research unit has cut back drastically on how many people we come in contact with each visit. The study is paying for a car service to pick us up, wait at the hospital, and take us home. Our driver shows us the cleaning paperwork every week. Getting in the car is quite the circus as we aren’t supposed to touch the door handles. So precautions are definitely being taken!

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We get smiles at the hospital now. Life is good!

In other news, we moved on April 1. We are loving our new apartment; it’s quite a bit bigger and on a very quiet one way street (our last place was on the corner of a busy intersection and it was loud! and bright!).

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Saying goodbye to our old house and saying hello to our new purple door house

We have been going out for walks when it’s not snowing or raining and getting to know the neighborhood. Most things are closed, but it’s fun to window shop. We are just a few short blocks from the lake and Lincoln Park. While we can’t actually enjoy these right now, we can stand across the street and look at all the green. Spring is arriving in Chicago by degrees; we see more greenery and new flowers every day.

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We all had our knees out the one day it was over 60 degrees. It was beautiful! And then they closed the parks…

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A short walk to the foggy North Pond in Lincoln Park (also before the parks closed)

Millie has struggled a little with the move. I think we’re getting back to a good place though. We have taught her how to get out of bed by herself (!!!) and it has been a huge game changer. For a kid who doesn’t crawl and can’t go from laying to sitting, getting out of bed required some creativity. But we’ve raised her bed (it was on the floor), and now she can “wiggle down” and slide off the end of the bed to a standing position. We leave her walker parked nearby and she comes out of her room when she is ready. If you know Millie, you know that waking up in the morning and from naps have been the hardest parts of our days for as long as I can remember. And now she comes out of her room sooo proud of herself and so much happier. It’s amazing how something new becomes normal… I’m not sure I realized how big of an impact this skill is having on all of our lives until I wrote it down.

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Nate is on.the.move. He crawls at lightning speed, pulls himself up on everything, cruises on furniture, and will literally use anything he can push as a walker. It’s not uncommon for him to push all four dining room table chairs to various places around the apartment. He is a pro with Millie’s walker and is finally learning that he can’t use it when she is. He’s starting to listen and learn and it’s so fun to watch. This movement phase is something Millie never really got to, so it’s new for me! And it’s so great to watch them play together; they stand at the coffee table and play with legos. Together! They lay on the floor and read books. Together! (Well, kind of… Nate just yells at the book and Millie turns the pages. But there is generally no crying involved).

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Now let’s get back to being “fine” and the state of things in Chicago. Chicago has closed ALL public indoor and outdoor spaces. The lakefront trail (more than 20 miles of pedestrian and biking trails), the river walk, Lincoln Park, Millennium Park, Grant Park… everything. Not to mention, most people who live close enough to enjoy those features live in small apartments with little to no outdoor living space. The mayor of Chicago posted on Instagram today that if the nicer weather is inspiring you to get outside for fresh air, “open a window.” Chicagoans are expected to stay inside. All the time. No matter what. In our small apartments. And open the windows.

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I understand the need for social distancing. I understand the need to wear a mask and wash your hands. I understand how important this is. I do. BUT NO ONE IS TALKING ABOUT MENTAL HEALTH. Yes, that deserves all caps. Getting outside, getting fresh air (not through windows!!), getting exercise, getting a dose of vitamin D are all things that make you feel good. They are good for your body, mind, and soul. And they can all be done wearing a mask while safely social distancing. It’s absurd to me that all the open space in the city is closed, forcing people onto sidewalks where they congregate (unintentionally) at intersections waiting for walk signals. And no one is talking about it. Well, except me. Apparently I’m still ranting and raving about it.

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But in all seriousness, how are we supposed to stay sane when we are stuck inside and completely isolated from friends and family? Not to mention work from home, school from home, entertain our kids from home, worry about friends and family from home? And do all this from a city that still doesn’t feel like home. Like I said, we’re fine. 2020 is not proving to be the thriving year I had hoped for, but we’re fine. The new normal we quite literally just settled into has been thrown for a loop, but we’re fine. We’ve had to cancel two trips home (and who knows how many more), but we’re fine. I’m lonely and scared and sad about the state of the world and tired on a whole new level, but I’m fine.

This is not a pity party (well, maybe just a little). This is more of a message to everyone that it’s okay to just be fine right now. If you’re struggling, please know that you aren’t alone. I’m struggling. A lot. But it’s temporary. This will end. And we have so many wonderful ways to keep in touch right now. If you’re struggling, reach out to your people. If you don’t think you have people to reach out to, I am your people. Call me. You’ll probably hear at least one screaming and/or crying child in the background, or the police sirens driving through the parks to keep people out, or the birds chirping out the open window, or Justin on a work conference call, or Millie attempting to do some preschool activity while Nate tries to tackle her, or Nate trying to steal Millie’s walker to take it for a spin; but call me. It could be entertaining, right?!

PS: If you really are fine and you think I’m crazy for writing all this, call your people. I guarantee you know someone who feels the way I do, and they need you right now. Ok, mental health PSA is now over. xo

PPS: Sorry if this was TMI. To make up for it, I’ll leave you with this:

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February 29, 2020 / JustinKays Porter

A New Normal

The fact that I haven’t written in almost two months says something very important about our life: we’ve reached a new normal. We are falling into new routines and new habits in Chicago, to the point where they don’t feel new anymore. And it’s good. It feels so good to have things that don’t feel new. I am a creature of habit, maybe more so than most, and I like that my life is back to having more elements of habit than newness.

Having said all that, we do have some news to share, both good and not-so-good (but don’t worry, no bad news). Millie’s treatments are continuing as normal as can be. We actually had a big milestone this week: we’ve been slowing weaning Millie off her pre-meds over the last month or so. This week was her first injection without any pre-meds and she didn’t have a reaction! I was a nervous wreck, but she did just fine like the tough little cookie she is. (Quick refresher: Millie had what amounts to a not uncommon allergic reaction to the injection back in October. Since then, she’s gotten an IV with anti-nausea meds, steroids, and Benadryl every week before the injection. It was quite the cocktail for her little body and it made injection days about twice as long as they would otherwise be). Needless to say, we are SO RELIEVED that things went well today. Because no one was sure if she would react, they still put in an IV before the injection as a precaution. Unless something unexpected happens (and it could), next week will be the first week in over four months that Millie won’t need an IV. This is HUGE!

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PT is helping Millie gain more confidence. She gets around well with her walker, but needs a lot of prompting to take steps on her own. She got a new set of braces a few weeks ago that seem to be good for her and we think they will help push her in the right direction. I’ve also (finally) gotten good at carving time out of every.single.day to do one on one PT activities and I’m getting better at making them fun. All things that will help in the long run, and it will be a long run for us. But we only have to take one day at a time and I’m also (finally) getting better at that. It’s been a big mental shift for me to try to stay in the moment (Or at least the hour. Or sometimes just the day…).

One of the more fun things happening in our lives is that Millie is talking up a storm. I was a little worried about a speech delay, but her pediatrician in Chicago advised that we wait until she’s 3 before we worry about it too much. With how much she’s been through in the last six months, it’s expected for the added stress to cause delays. I’m happy to report that everyday she’s coming up with new sounds, new words, more syllables and words together… she’s like a parrot! A really cute parrot, that is.

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Nate is growing by leaps and bounds. He doesn’t do a traditional crawl, but he does the worm VERY well and gets into anything and everything. Thank goodness for doors and baby gates… He seems far more interested in pulling himself up and learning to stand than in crawling. He has become quite the little yogi, with moves I can only hope for in my wildest yoga dreams. Our floor is constantly strewn with food because Nate will only eat things that he feeds himself. He thoroughly enjoys throwing food overboard and when he does decide to eat, he only gets about a third of the food in his mouth. I can’t tell you the number of times I call for Flo to help me clean things up around here.

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Now for the not-so-good news. We have known since we came to Chicago that our doctors at Stanford were working behind the scenes to try to get Stanford involved with the study somehow to bring us home. We’ve been pestering our study coordinator in Chicago for updates on how this is progressing, and we heard that Stanford was moving forward and might be up and running as an injection site within a few short months. This was very surprising (and definitely too good to be true, in hindsight) and we, unfortunately, let ourselves getting very excited about the possibility of coming home. One week after getting this news, we were told that Stanford had pulled out of the study entirely. We were confused, angry, devastated… it would have been much easier to receive this information without the hopeful news the week before.

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While we still aren’t quite sure where the wires got crossed, Stanford becoming an injection site in a matter of months was never realistic. After many long conversations with our doctors at Stanford and the staff in Chicago, it looks like we will be staying in the Windy City for awhile. Stanford has pulled out of the study for now, but we are hopeful that there will be opportunities for us to come home in the future. A lot of things are in the works, and we are just going to ride it out and see what happens (See how I did that? Staying in the moment!).

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And because we don’t have enough going on, we had to find a new place to live. Our lease ends March 31 and the owners are planning to sell. While they graciously offered for us to stay on month to month while it’s on the market, the thought of having people constantly in our space while coordinating around the naps and early bedtimes of two kids and Justin’s work from home schedule… ya. No. No thank you. So we’re moving! Knowing that we’ll be here for a while actually made this easier. We just signed a lease for a duplex in Lakeview East; we’ll be walking distance from the lake with a whole new area to explore! While the move itself is daunting, we think the new place will be a better fit for us and we’re excited.

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So that’s what’s up. We also spent a wonderful week in Florida, have hosted more visitors, and spent a sunny week in California. Knowing that we’ll be in Chicago longer term, we’re actually planning to come back to California more often, probably every 4-5 weeks. We’ll be wracking up frequent flier miles and our kids will be traveling professionals. I hope you’re all doing well, I’ll try not to be silent for so long before my next update!

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