In keeping with the themes from the poem “Welcome to Holland” I thought I would continue the story, based on my experience following the unexpected passing of my daughter, the one who took me to Holland and taught me how to live there.

I must admit I wasn’t very excited about being in Holland when we first arrived. I longed for the adventure I had planned in Italy, or at least the familiarity of home in the US, but we were in Holland.

In time I learned the language, adjusted and settled into my new career there. I became an expert and even opened my own not-for profit business to help other stranded travelers. I reached acceptance and built a home. It was gutted and remodeled, to perfectly meet our needs. I made incredible friends in Holland. We shared our struggles and triumphs of adjusting to the new land but they became family. It was an exhausting life, but it was beautiful and rewarding.

I had heard of people being deported. There would be times when I would notice a certain familiar face had gone missing. I wondered where they went, if it was terrible and what took them. I never thought it would happen to me. I was so careful to follow all of the rules. I paid close attention and did every single thing I could find to help us thrive in Holland.

Then early one morning, I received the most shocking news. My time in Holland was over. As much as I knew the day may come, it was unexpected, I shook, I wailed, I didn’t want to leave. Without any notice, I was being shipped off to Australia, alone.

I promised to stay in touch with all of my friends in Holland, but they were busy and the time change made staying in touch very hard. Everyone thought that after the shock wore off, i would enjoy Australia. After all, they speak English and have beautiful sunny beaches.

Sure they spoke English, but it was different enough to be confusing. If felt closer to my pre Holland life, but even that feels incredibly foreign. Cars drive on the other side of the road, the seasons are backwards and nothing makes sense. It isn’t bad, it is just different and not where I had wanted to go. There was no need for the skills I had mastered so I was without work. All I had was time to think about how much I had come to love Holland.

Sitting on the beach in Australia, it’s not a bad way to spend time healing. I can feel myself starting to settle. The folks at the coffee shop know me by name and don’t mind when I cry in the corner. I watch the news and try to stay in touch with my friends in Holland.

I’ve unpacked my bags, but I don’t have plans to stay forever. The lessons I learned in Holland have taught me how to adapt, let go of what I thought would be and enjoy things I that I never would have dreamed of. I want to keep exploring, keep adventuring. Now that I know that I don’t know where I am going, I can embrace a sense of adventure and prepare for whatever new lands I find myself in.

It’s funny how different dates sear into your mind in a way that your body can sense it even without looking at the calendar. I can feel our wedding anniversary, the birth dates of both of my children, the day Claire was diagnosed with Rett Syndrome and the day that she passed. I’ve got a new one to the list. March 10, 2023 the day that Trofinetide was approved by the FDA as the first treatment for Rett Syndrome.

Let me back up. Summer of 2012 I attended the world Rett Syndrome Congress in New Orleans. There was an incredible energy around the promise of new clinical trials and the hope that some day there could be a treatment for Rett Syndrome. I left with a sense of, not if, but when.

A year later I was chatting with Claire’s physical therapist while Claire was on the treadmill. I said something along the line of how important it is that we keep working hard, so that when a treatment is available, Claire’s body would be in the best possible shape. I then mentioned how there were two trials, both struggling to get fully enrolled. Claire picked her feet up (she was in a harness) and stared at me, as if to say, hello, what about me. I tried to explain how we lived too far away and it would be too much for her to be in one of the studies.

She wasn’t interested in my excuses. So we signed up to go to Boston, the only trial available for her age. There were many long talks with Claire about how there would be shots and tests, how the medicine could make her feel worse and might not help. Claire was adamant, we had to try. Chloe was thrilled to hold lemonade stands in an effort to help get a medicine. That’s when all the therapy I had done to accept things for what they were went out the window and I dared to dream.

In December 2013 I formed Rettland Foundation to help families be able to afford the travel associated with participation in clinical trials for Rett Syndrome. Some of the first families we helped were traveling to Texas for a study in NNZ-2566 (trofinetide).

Those were hard times. Just being a mom to two girls, one with Rett Syndrome was more than enough to manage. I didn’t want to be taking on all the extra work, but Claire wouldn’t let it go, Rett Syndrome was a problem to be solved and she wanted to be part of the solution.  Long after we were done traveling to Boston, I continued my work with Rettland Foundation. Claire loved hearing about my work. She loved that our collective energy was being used to fight Rett Syndrome, not accept it.

Six years later, in 2020, Claire had the opportunity to enroll in the next phase of the study for Trofinetide. At the same time that the world felt like it was coming to an end, our dreams were coming true. After a period in a double blind, placebo controlled study, Claire was given the open label drug and monitored.

She didn’t jump up put of her wheelchair and talk, but she improved and we all relished that she could use her body ever so slightly better. It was the margin we desperately needed in light of the schools being closed and losing nursing support. Claire loved that she was secretly winning while there was such chaos everywhere else.

Despite the improvements, Claire passed away in February 2021 from complications of Rett Syndrome. It was the hardest day of my life followed by the hardest weeks and months of my life. Slowly I have healed. I know that I need to keep living for Chloe and in honor of Claire. I have literally moved around the world, trying to find a new path to continue on and figure out how to live again. Even after two years, I just couldn’t settle. Living just didn’t feel right.

Then the news came. The FDA approved the first drug to treat Rett Syndrome, Trofinetide (DAYBEU). I was surprised that there was no grief, just pure joy. The thing that Claire wanted more than anything is available now. All of her efforts have paid off. I thought of the families that would be diagnosed in the next few weeks and how they would be the first to hear the diagnosis and at the same time be told that there is a treatment. It won’t work for everyone and it isn’t a cure, but it is a step.

This is one of the greatest things Claire taught me, a small improvement can make a big difference. She used her life to show everyone around her how it was possible to live abundantly even with difficult circumstances and that if you can try and make it better, you should.

I wasn’t expecting it, but with this treatment for Rett Syndrome available, it feels like the end to her story, the happily ever after. I feel settled and peaceful, ready to get back to a more normal life not controlled by grief. Claire believed in a world where there was at least something to try and alleviate the symptoms of Rett Syndrome and that is the world we live in now.

Thank you to everyone who has supported us along this journey as we couldn’t have done it alone. I feel privileged to have been part of a community that has pushed together for so long, many families, doctors, researchers, support staff, it took a village and the people of Rettland showed up.

October 15, 2007 was a fairly average day. My in-laws were visiting, I was working out the logistics for that week’s therapy appointments for Claire and Jared was at work. I got a call from the children’s hospital that we frequented. Assuming that they were calling to schedule yet another test, I answered even though I didn’t have the energy. Nope. It was somebody calling to casually mention that the test for Rett Syndrome had come back positive.

WTF.

We had just seen neurology on Friday and they said it was negative. What is Rett Syndrome anyway? I had never taken the time to learn about it since they were doing the test to rule it out and it didn’t fit with Claire’s stellar hand use.

When we met with the genetics team to arrange a massive amount of testing earlier in the year they told Jared to cancel international travel and that when they get the results, we would set up a time to have a pastor or someone at the house when they called with information on a diagnosis. So this off the cuff, hey it’s Rett Syndrome, want to schedule an appointment to talk about it in two weeks, really threw me for a loop.

I remember the day like it was yesterday, what the air felt like, the sushi we had for dinner, the sound of my friends voice when I told her the news. In a sense, everything changed that day, except for Claire. The blood test didn’t change her DNA. The results didn’t crush her spirit. She loved Macaroni and Cheese and Animal on Sesame Street before and none of that changed.

The first thing I felt was relief that the search was over. Finally we knew what we were dealing with. It was a while before the impending doom of what this meant for life hit. Oddly enough, this was very similar to my reaction when we lost her. Relief that she wasn’t in pain before I realized the level of the loss for myself.

It what was perhaps one of the greatest coincidenses ever, I was absolutely shocked as I started to tell people around us about the news. I mentioned to my neighbor how relieved I was to have finally gotten a diagnosis. When I told her it was Rett Syndrome, she told me how there was a story in the paper that day about that very thing. Certainly she was confused. After hearing the same thing from three different people, I eventually got a paper and sure enough, Rett Syndrome was in the headline.

A local family was celebrating their daughter’s birthday with a fundraiser for a Katie’s Clinic, the first multi-disciplinary site that specialized in Rett Syndrome just an hour away from where we lived. It was wild. We instantly had a community who hugged on a level we had never experienced before. Paige held Claire and swooned as Claire pulled at her hair and earrings, a skill she’d soon loose.

It really felt like a tale of two cities, the best of times and the worst of times and that feeling has been pretty consistent for the last 14 years. Maybe it’s just because it’s become familiar, but I’ve come to really enjoy the tension of a life that is stunningly beautiful and brutally painful at the same time. It’s a lot easier now that I have the space to also rest and let my brain process the chaos.

I expected to wake up vomiting from anguish today, like I’ve done in years past as my body remembers the day it all changed. I braced for it, Jared took the day off and I scheduled a yoga class to cry through. Much to my surprise, I woke up filled with gratitude. I can’t imagine life without the people we’ve met in Rettland and the adventures that we shared with Claire because of the presence of Rett Syndrome. So here’s a first, a Diagnosis Day filled with hope. I guess I know now what it possible, so it sorta hurts a little less. Even with Rett Syndrome and a short amount of time, our time with Claire was absolutely incredible.

I am out running in a park with some other people. The sensation of my feet hitting the ground fills me and fuels me. Suddenly, I can’t move. My feet are stuck in some thick fluid, wet cement, perhaps I am frozen to the ground, bound by an unknown substance.

Nobody seems to notice my immobilization.

At least, not many people. A few of the people running by reach out their hand, but my own do not grip and the hands are gone before I can reach back out. I become hyper alert as the world spins faster. My breathing accelerates, just enough to make it difficult.

All of the colors are brighter, all of the sounds louder.

I can no longer sense myself. I can’t feel my limbs. I can’t feel my breath. I know they should, but the feelings, the sensations, they don’t come. It is as it, I am watching a movie that I was supposed to have a role in.

I need help.

I try to cry out, but my voice won’t work. I am vaguely aware that I need to cry but my eyes are dryer than ever.

I can’t move.

I can’t feel.

I can’t speak.

I can’t cry.

So I smile.

I’ve always felt a little conflicted about what I share on social media. Lately, it’s been one of my favorite things. Every morning I eagerly check to see what forgotten memories occurred on that day. I have a good pre coffee cry and try to get on with the day. This weeks was a doozy. The caption read:

Best Monday ever. School starts next week but today Claire was at an ASB workshop. Normally at this point in the summer I’m waking up vomiting from the stress of all the eminent 911 calls when school starts and the inevitable heartbreak of Claire not having friends and being excluded and other. Not this year. I’m trying to figure out her Apple ID because there is a group text she needs to be a part of. I’m terrible at technology and this is my new favorite problem. Hello 8th grade, we are ready! Also, thank you to the many people who have believed in this girl along the way. All that effort is indeed paying off.

It had taken years, but we finally had all the people with a complete understanding of Claire’s potential and willingness to put the energy in to make things happen for her. That day we felt like we were on top of the world. As much as it hurts, I’m so glad I shared this so that I could be reminded of it now. I had completely forgotten about this part of the story. The only part of back to school 2019 I could remember on my own was the sick feeling I had, taking Chloe for her first day while Jared was in the PICU with Claire. Yep, the year that we had set up so perfectly didn’t go according to plan, but eventually it worked out. Claire had a pretty great run from September-March when the world stopped. The time she had with the ASB group was one of the best things that ever happened for us. Claire made real friendships and was included and even got in trouble, everything I could have dreamed of.

I’m sharing this now for a few reasons. Obviously, I just really like telling stories about Claire. Also, I want the families of girls that are younger to know that so much is possible. Girls with Rett Syndrome can absolutely be management material. I am also including the page from her yearbook because I am just so wildly proud of her. I really had given up on middle school being anything but a nightmare and she sure surprised me in the best possible way.

It’s safe to say that with just five months of learning to live without Claire I still have a lot to figure out. Some days I’m fine, able to focus on work, finish sentences like a normal person and remember to cook dinner with enough time to cook dinner. Other days I stare at the beautiful spaghetti spoon that was gifted to us for our wedding that we’ve seldom used and weep. Claire had a hard time swallowing the long thin noodles, so we all ate penne. Now we can have whatever we want and that is a weird sort of overwhelming.

I’m finding it oddly comfortable, the pain and sadness. Much like my favorite dress, that looks like it might be uncomfortable but the material is forgiving and it has pockets! I’d be willing to wear it to anything, not just for special occasions. I’m left wondering, why is it that these emotions sometimes feel like failure? Who decided that happiness was the goal?

I haven’t come up with any answers but the more space I have to sit with myself, the more I am comfortable with the hard. The moments where things come easy seem strange, perhaps it’s just the 15 years of fighting for each step. Maybe the easy stuff is just less rewarding because it’s easy and that’s alright too.

There’s probably a lot of people that will disagree with me, and maybe I won’t always feel this way but I am just going to put this out because it might resonate with somebody.

I don’t think happiness is a great goal.

Sure, it’s alright, but I’m taking it out of the top things I am trying to do with my life. What if instead of seeking happiness, we worked toward being content, at peace or just feeling alive? I think that’s a better fit for me. Now days I dream of living in a world where when somebody asks how I am doing, I can say that I hurt and they don’t feel obligated to take it away or make it better. Hard is just hard, it isn’t failure. In fact, being able to feel the hard stuff is a sort of superpower in the world we live in. If you are hurting, you aren’t alone and I’m proud of you.

I’ve had a hard time with words lately. It’s hard to access basic language to navigate daily living. Articulating complex emotions feels well outside of my reach. So today I want to talk about the power of other peoples words.

About two months after Claire left, two friends arranged a quick girls getaway to a spa an hour from home. I met both Erica and Summer because their daughters also have Rett Syndrome. They had both recently gone through the surgery to have a g-tube placed and had been walking me through that in the days that ended up being her last. It’s weird how close we are considering that we don’t live near each other and are all very different people. But we’ve got this common thing that was an incredibly strong bond. That is, we did.

I worried that I would be too heavy. Living with Rett Syndrome often means enforcing difficult boundaries and protecting yourself at all costs. This hit close to home for them, too close to home. In fact, they didn’t create distance to protect themselves, they moved in. Erica set up a gofundme which I would have been too proud to do on my own. She knew that we’d lost half our income and the stress that would create. This allowed for the most incredible virtual group hug that we desperately needed. Summer drove over an hour to be there, to do whatever I needed, which happened to be getting rid of medical supplies that hurt to look at and holding me when the call came from the hospital to ask why Claire hadn’t shown up for her appointment. They both answered my numerous calls when I just needed to talk so that I could breathe.

Naturally, after a few weeks of supporting me on top of their already complicated lives, we all needed some rest, so we met up for that. It was surreal, on top of the grief, this was also the first time I’d done something with friends in forever because of Cov!d. Everywhere we went, the fun staff would ask, “What brings you here?” Without missing a beat Erica would casually explain, “Our daughters all have the same neurological condition and her daughter just died, so we wanted to be together.” I honestly don’t remember what the reactions were. I would just sit back, inside my soul and bask in the glory of friends who weren’t afraid of me and my sad story. It was incredible to feel seen in those early days, protected by my friends, who were committed to framing it in a way that I could live with. They didn’t let it be a sad story, it was just a story.

I guess the point I’m trying to make is Rettland sure sucks, but the company is incredible. There are so many incredible people that have chosen to be with me the last few months, when I know my reality is difficult to be close to, forever grateful for you all.

Also, if you’ve got a friend who is grieving, they are probably drowning more than they show and normalizing awkward hard stuff is an incredible gift to give.

It’s weird to figure out how to move forward, what step is the right next step. I’ve been told there is no wrong way or right way to grieve. I’ve also heard “they” say that you shouldn’t make any big decisions while you are grieving but I’ve come to realize that “they” don’t realize that isn’t an option. Staying in our current situation, not changing anything would be a big decision. Getting rid of most of our stuff and moving 500 miles away, also a big decision, but one that need to be made.

Pretty close to Claire’s death, I had the overwhelming urge to sell everything and move somewhere new. Life feIt short and precious and there’s no time to waste. I want to have a grocery store that didn’t have the aisles that I only went down for the items Claire needed. I wanted to be free of the overwhelming grief when the school bus would pass our home as waiting for her bus was one of my favorite things. I want a reprieve from the triggers, but also I need space to breathe, to heal from the last 15 years.

For the first time in my life, I am moving, along with my incredible family, just because it is what I need. In the past we had outgrown homes and moved for work. Claire always answered the questions in each move for us. The goal was always to live as best we could, with her. Her needs dictated the floor plan of the homes we’ve purchased, the order in which we have moved and how we packed the car. Now everything is different and we had to sit down and ask ourselves what we want and that was scary.

Honestly, I am terrified of leaving the busyness of the current situation. My gut tells me the healing I long for is going to be a lot of difficult work. Sitting with my emotions has never been my favorite thing and now I am clearing the calendar for the rest of the year to do just that.

It was scary to tell Jared I needed to move away from where he works, to say that is what I needed. Who does that? Mom’s don’t have needs, right? Aren’t we just supposed to be thankful there’s a paycheck and make it work?

Choosing space to heal over the stability of a job was terrifying. And maybe my best decision so far this year. I guess I’ll know soon enough. So often we talk about self care, but do we really slow down enough to access what we really need? I guess that is one of the lessons that Claire taught me. Accurate assessments are everything. I urge you, pay attention to what you need. Maybe it’s coffee with a friend, time getting a hair cut or maybe it’s smashing pottery or an intense workout. Don’t let others define what you need or you “should” do to rest. Figure what works for you, I think it’ll be worth it.