She Didn’t Change, I Did

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.

Numb written by Chloe

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.

8th grade

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.

Why Happiness?

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.

This is me.

Loving being alive. Content. Grateful.

Happy and sad.

Living a beautifully complex reality.

Too Close to Home

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.

Worth It

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.

Pictured: two people probably too tired to move next week, but crazy enough to anyway

What I Do Know

Have you ever tried to start a thought only to not be able to finish it? Just me? I’ve tried to make a habit of leaning into my emotions for a long time and I’ve enjoyed being able to articulate them in a way to connect with others. Right now I just can’t get to them and that is uncomfortable for me. In recent years, feeling has sort of been my superpower, how I’d cope with the crazy life we had. The last few weeks, there’s one thought I am able to grasp, and it’s a doozy, so hang on. Rett parents, this might be hard to read, you’ve been warned.

Here goes.

Living with a child with Rett Syndrome is just as hard as living without your child with Rett Syndrome. At least that is where I am at right now. The thing is, when you are living in Rettland, caring day in and out for a beautiful, vulnerable, demanding creature, you just can’t understand how hard what you are doing is. I did it for years. I knew it was hard, I leaned into that, but my soul could never wrap around that truth. People would tell me I’m a great mom and I’d laugh it off, like all moms are great, duh. Maybe it was my body protecting me, I’m no expert in neurology or biology, so I am not sure what factors were in play. What I do know is that just now, I can feel the sadness of the first IEP, the first seizure, the first 911 call in a way I could never get to before. Perhaps it is similar to how I can’t get to my feelings about Claire not being here, maybe I am just not ready for that yet.

During this incredibly difficult time, where I am shaky and my brain is mushy because I can suddenly feel the weight of the rett diagnosis, it’s been wild to see our rett family carry me. I figured knowing that the pain breaking me was something of an eventuality for them, that they’d love me from afar and that would be alright. Nope. They’ve been the ones calling to make sure I was safe to be alone, taking our equipment to find it a good home. Sitting with me having a few glasses of wine and sending funny text messages just to check in. That is just was caregivers do, they care.

I feel guilty, with my free hands and all the time in the world to let them support me, it’s weird and new. I’ve never had so many people pick up the check and shower me with generosity. I want to return the favor for everyone and I know the time will come, my strength will return and I will have the chance.

In the meantime, could you do me a favor? If you know somebody caring for a child with a disability, could you do something small and meaningful for them? Maybe drop off a bottle of wine or just check in and ask if they need anything from the store. They don’t know how tired they are, their body’s aren’t capable of feeling the full weight of the exhaustion, but it’s there. If you want to do this in honor of Claire, I’m watching #clairesgreatadventure and would be honored to see what lovely things are done in her honor.

The Illusion of Option A

It’s been a while. I guess you could say that we’ve been busy kicking the shit out of option b, or at least trying. Covid sure made that harder. Life was hard back when everything was normal, but we had support in the form of school that allowed us enough margin for some adventures and rest. This last year has been another level of hard without that, but that isn’t what I want to write about today.

I want to go back to option a. October 2005. There was a moment there when everything felt right in the world. My mom had come to visit, we went for lunch at the Ritz in Half Moon Bay where I had the most incredible bowl of pumpkin soup of my life. The next day Claire was born at Stanford with high apgar scores and the brightest blue eyes. She had 10 fingers and 10 toes and presented as the stereotypical healthy first born I had dreamed of.

Fact of the matter is that despite everything feeling right at that moment, option a was really never on the table. I hadn’t yet gotten the courage to go to therapy and work through the shit from my childhood. Jared was busy with the career of his dreams. On paper it looked perfect, but it wasn’t. We faked it for a year like we all do. Then Claire stopped hitting milestones, we started spending a lot more time at Stanford, our home revolved around the early intervention program and eventually she was diagnosed with Rett Syndrome.

That is when we admitted we needed to go to option b. The dream was gone. We would never be the cute couple watching their baby girl run home from preschool with the art that she made. We would be the parents that learned to advocate and grieve early. We would have to adapt everything and learn to let others help because it was just too much to manage alone.

If I’m honest, option b was always the better option. Hardship and suffering made space for beauty and joy that could have never fit into option a. We connected with people we never would have met otherwise and made some of our dearest friends. Living in option b, we knew the value of a moment and how they could be limited. Life is short for everyone, but Claire made it clear and reminded us often just how fragile it was, so we wasted as little time as possible.

It has been 7 weeks since Claire took her last breathes. As much as it feels like forever ago, I also keep reliving that morning and it feels so fresh. But so do all the memories; surfing in Del Mar, walking on the beach in Hawaii, opening day at Fenway. Her life was one big adventure. Right now, it’s all I want to talk about, so I figured I’ll blog again. No idea if I will do this consistently or keep it to once a year. Over time I’ve connected with people online more than in person, which is weird, but so is life. So, if there’s anyone out there, wanting to read my stories of the adventures we’ve had and how I am dealing with all this, I’d love to continue to connect.

Welcome to Crazytown, it's a lot like Rettland

Hey guys. It’s been a while. I stopped writing as it felt so loud online and I didn’t want to add to the chaos. Since it seems like the whole world has devolved into complete craziness, I thought I’d write a welcome letter to those trying to figure out how this works.

Let me start with some background. Our daughter Claire is 14 and has Rett Syndrome. In addition to being a bright eyed, smart-ass teenager, she can’t control her body and is dependent on others to care for her. She takes medication 6 times a day, is spoon fed meals 4 times a day and needs to stand up out of her wheelchair and take a few steps every hour or two. It’s a lot. We never know when she will aspirate during a seizure and wind up in ICU for a week (that happened last August) or when she will have a long streak of health (that happened last July).

Because of this we spend a lot of time in our safe space at home. We are terrible at making plans because we got tired of breaking them when she wasn’t well and we are often just too tired to hold a conversation. I always keep an insane amount of medical supplies and food on hand because crazy hits us and I can’t manage ordering in those seasons as well. When the world flipped upside down, there really wasn’t anything different for me to do. It was in that moment that I realized just how crazy our day to day life is. Our life is also beautiful and wonderful and full of joy, which is why I am writing today.

The thing is, I feel for you as you are scared and overwhelmed and trying to figure out how this is going to work. How are you going to stay sane at home for so long? Particularly my fellow extroverts, this is hard! Is there a drug to treat this? What exactly are the CDC and FDA indicating about these trials? How can there be such a thing with no way to treat it? Why is there so much conflicting information? How is this going to effect me? Will it ruin me financially or will I get sick? Welcome to Rettland as I affectionately call this world that we live in where I try to find balance between a life with Rett Syndrome and one that revolves around it.

As somebody who has been living in crazy for 12 years, I’ve learned a few things that have helped me and I thought maybe some of this could encourage you.

  • Don’t SHOULD on yourself. If you find yourself thinking “I should…” give pause because it’s most likely fine if you don’t
  • Talk to a real, live person. There is something about talking instead of texting that allows for a better human connection that can go a long way to fighting depression and anxiety
  • SLEEP! If it’s the only thing you do, try and get a solid 8 hours of sleep whenever possible, your brain needs it
  • Laugh, or cry, but feeling when possible is good
  • Music, movement and art are also good things to help

There’s no right or wrong way to get through a crisis so be gentle with yourself. We are all a bit irrational at the moment. Keep breathing and if you have access to one, dogs and cats can do wonders for a terrible day. I’d love to hear what you are doing during this time to stay sane.

To my family that has been living in chaos for longer than they remember, I see you and I know you are tired. Even though you’ve been told this before, you are stronger than you know and you got this. You’ve already got a whole hospital at home and this is your time to shine!

A picture worth 1,000 tears

It’s been awhile. Instead of catching up on all that’s gone on, I am just going to jump into today.

A few weeks ago I met with a photographer to go over the images she took of our family. Somehow 4 years had gone by and I wanted updated pictures of the family to hang. I am a fairly decisive person so going through the poses didn’t take long. There was a picture of Chloe playing her cello that I loved and a great picture of Jared and Claire.

Then I was stopped in my tracks. There was one picture that Claire looked amazing in, but I didn’t love any of the rest of us. I wouldn’t hang this in the house. That’s when the thought hit me like a ton of bricks.

What if she dies soon, this would be great for her funeral. But I didn’t want to buy an image just to keep on the hard drive should we come to that place in time.

I mean. Who even thinks that?

I do.

I try not to. But sometimes I just can’t stop the thoughts. Seizures and Rett Syndrome are no joke. We make light of it and spend a lot of time at Disneyland and post pictures of her smiling, because she brings an amazing light to the world. When seizures hit we pause for as long as it takes and those can be some very scary times that are hard to shake.

I am going to keep shaking them.

That’s actually why I am sharing this with you. Maybe you have these thoughts about your child and you needed to hear that you aren’t alone. Maybe you just love Claire and her smile makes your day.

Anyway, I am not saving the picture any longer. I am sharing it with you, but I wanted you to know the whole story, just in case you saw it and thought, that looks like a happy family. Don’t worry, we are a crazy sort of normal family.

Photo credit to Sharisse Rowan