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

IKEA and uncertainty

As expected, transitioning into our new life in Southern California has been very difficult. There are so many decisions to make, it has become very overwhelming. One thing hasn’t changed, grief still sneaks up on me and knocks the wind right out. Each morning I wake up in shock as I look around and try to get my senses, why am I here, what’s going on? It’s a thought that bounces around in my head a lot. Why? What?

Before we moved I knew the plan. The kids had their place, Jared has his, my charity work was fulfilling, the questions just weren’t there. I must admit it was a false sense of certainty, but it allowed me to enjoy the days. Now I just don’t know. You’ve been there, it’s scary right?

It is hard to sit and wonder and not know your why and that’s where I’ve been. Thankfully I have enough responsibility to save me from myself. Claire indicated that she wanted her room to be fully unpacked. We discovered that she needed a full length mirror to properly approve of the clothes we dress her in. Fair enough, off we went to IKEA.

It is spring break, so the trip answered the question of what we would do for one day and I prepared for every different scenario that I could mentally. Chloe would push Claire and I would pave the way with the big cart of furniture. As we shopped another mom approached to tell me how much she loved Claire’s chair and asked where it came from. I responded with the brand and model but she wanted more details. She wanted to know who paid and how we got it approved and what local groups I could refer her to. She was going to need to go through the process for her daughter.

I took a deep breath and explained how I didn’t know much about this area as we had just moved (I didn’t cry saying that, so I get a medal). I told her my favorite parts about the chair we have and a few things we had to learn the hard way. I asked about her daughter and found out she was 8 months old. Here she was looking at frames in IKEA and when she saw Claire, in a cute chair out and about she saw a future for her daughter, that’s a big deal.

Funny that I have been depressed lately thinking about the unknowns ahead of us. Then I get to be a small part of answering that question for somebody else and she answered the question of why for me. The future is full of unknowns, it’s just that some times you are aware of that more than others.

It pains me to not be out conquering the world, living in some large adventure right now. This was the perfect reminder that even when I don’t have a sense of why or what, it is still there. It has always been there, I just get clued in from time to time.

IKEA furniture fully assembled and getting good use. I’m still not exactly sure what I do but I know good is coming out of it.

More than a little luck

It was three years ago today that I did the single scariest thing in my life so far. Claire and I flew to Boston for 24 hours to apply to be in a clinical trial for Rett Syndrome. It was a hard trip. She stopped breathing on the flight a few times and had seizures in the hotel room late into the night. There was amazing pressure to show up at the hospital at 8 am, fasting, ready to pee in a cup and answer what felt like a million questions. It was a short walk from the hotel, I pushed the wheel chair down the steep icy sidewalk with one hand and towed our carry on bag behind me. I was on so little sleep and so much adrenaline. If we didn’t do this, then what, nothing changes and that seemed even scarier.

I look back at the trip now and realize how much it formed the rest of my life. It was the day that I realized I could do really hard stuff. I broke in so many ways in Boston that day and somehow, I grew back stronger because of it.

Since then, I’ve had plenty of hard days, but now I can always say, this is easier than flying to Boston with Claire for 24 hours. I am reminded how on that difficult trip, we met some truly wonderful people and found the strength that came from broken and leaning on people that loved us.

It felt lucky to be going to Boston to change the history of Rett Syndrome on St. Patrick’s Day but it was so much more than that. We tackled the scariest thing in the world, gave it our best shot and it was one of the best decisions ever.

Do you have something scary on the horizon? It might not feel like it, but you can do it. If everything in your world is smooth sailing for now, I dare you to change that. Find what seems impossible and go for it. Looking back, I am so glad we did and I know you will too.

When Wild Meets Normal

It’s been a while since I’ve had the time and mental stability to write. The funniest thing happened in the weeks after my last post, normal met wild and I just went with it. In case you missed it, I closed my last post Normal with this:

I used to wonder how it would feel to be able to give Claire something that could help, even if it was the slightest improvement. Now I know. What I haven’t figured out yet is how to go on with that knowledge. Truly, living in normal is the biggest adventure and I don’t feel prepared, you never are.

I wasn’t prepared, but it happened. As a result of being able to take the study drug outside of the study, Claire got a little better. Don’t get me wrong, she isn’t walking and talking, this isn’t a cure. But she breathes better now and that small detail has allowed our family margin we didn’t know we needed. We didn’t realize that we were all held captive,  waiting for each next breath, never knowing when it would stop. It wasn’t until we were free that we saw how our entire life revolved around her every breath.

This has been a year of freedom and at first that was scary but as I look back, I am in awe at how truly beautiful and amazing it has all been. We took our first vacation longer than 3 nights. We traveled to Arizona to be with family for Christmas and down to San Diego to check out our new home. Yes, our wild-normal somehow has us moving just over 400 miles away.

I knew going into 2016 that things that I couldn’t even imagine would happen.  In fact, in my first post of the year I wrote:

I’m a little scared for 2016. It’s bizarre to step forward realizing how clueless you are, but that’s what I’ve got to do, so here goes!

I know it was a very difficult year on a lot of levels for many people. It was a difficult year in many respects for us. But it was also the year that our gamble (participating in the IGF-1 study) paid off and I hope to remember that forever.

As a result we got to have more fun with Claire and Chloe. We lived out of a space knowing that you can dream big and it can come true. I don’t think that would have happened without all the trips to Boston, that was our pivot. Going to Boston changed us from a family that was desperate to a family that tried.

We are still desperate, but we are also grateful for the little bit more that we have. I long to hear Claire speak but I can now revel in the sound of her laughs. I can sleep at night knowing I tried.

I know that clinical research isn’t for everyone. There are so many hard things to do in life and it most often doesn’t involve medical care. If there is something that you have dreamed about, I beg you, go for it. The process might nearly break you like it did me, but when you make it through it is awesome.

Thank you for taking the time to read my ramblings, I really appreciate that I get to connect to people through this and I intend to write more in the near future. I hope that the new year brings dreams for you to chase and that as you scrape your knees and get banged up along the way people near you can love you and lift you back up so you can keep on. I wish you wild-normal that is so beautiful it takes your breath away, cheers to that!

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Our Normal

It has been a weird summer. Not going to Boston is somehow harder than it sounds. There was stability that came from constantly being measured and observed. There was context as we purposefully made sacrifices so that in years to come, Rett Syndrome can be treatable. But that season has drawn to a close and we have returned back to our normal. Don’t get me wrong, I have so much to be grateful for, and I am. The trouble is that our normal just isn’t.

I didn’t see it coming. I was happy to be looking at camps for Chloe instead of flights and hotel rates. As summer has gone on, I’ve tried to not notice, but the grief has been inescapable. It hit me like a ton of bricks when Facebook reminded me it had been a year since we last flew to Boston. I was flooded with the mix of emotions that came from that day. There was uncertainty and vulnerability paired with hope and strength along with deep fatigue, adrenaline and a lot of coffee.

I used to wonder how it would feel to be able to give Claire something that could help, even if it was the slightest improvement. Now I know. What I haven’t figured out yet is how to go on with that knowledge. Truly, living in normal is the biggest adventure and I don’t feel prepared, you never are. photo

 

On the Lines

Parking. When Claire was diagnosed with Rett syndrome we were given two forms. One for a disabled persons place card, the other for Make-A-Wish. Truly. At diagnosis the extent of what the genetics doctor had to offer was some help with parking. That was it. We have come so far. I am glad that when families are diagnosed now, there is a lot more information, on trials, therapies and so on, but that is for another post.

The funny thing is, once you get the pass for disabled parking, as much as it is meant to help, it has come with a new awareness of how little people pay attention and an amazing amount of frustration.

I’ve had to ask people to move too many times to count when they have parked on the lines, making it impossible for me to get Claire in or out of the car. Once the president of our old HOA damaged three body panels of my car after using the lines next to the disabled space for loading, that was a joy. Somehow, people really don’t know. I honestly believe that people forget that those spaces serve a purpose, they forget that people in wheel chairs go places and need the extra space.

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I took this picture when we were out to lunch. When I discussed my frustration with the owner, they in all honesty didn’t understand why I was upset, they thought it was for loading. Here is the thing, when I see a van parked on the lines like this, it hurts. It feels like somebody saying you don’t matter, we don’t care that your kid is in a wheel chair. I know that isn’t how they mean it, but it hurts, it is frustrating and it evokes such a strong emotional response for myself and many of the people I know that depend on these spaces when they go somewhere. It’s a small thing, but it is important.

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Recently, we stayed at the Hyatt Regency Monterrey. Everyone was in a great mood after a fun day at Laguana Seca watching the World SuperBike guys practice. At check in the girls were given smores kits, everything was going great, then we went to park and go to our room. Sure I was disappointed that the spot was taken, but look at this sign! It is perhaps the most glorious sign ever. It might not look like a lot, but to me, I felt seen and it felt like the hotel cared that Claire, or somebody like her, might need that space. With this sign they captured me for life. I want to come back here for Thanksgiving or Christmas, I loved being where I felt we mattered.

Later that night, the four of us went out to the fire pit to make good use of our smores supplies. There we met a family that had three young kids, one of which was a wonderfully spunky and boisterous little boy with Down Syndrome. There was no discussion of diagnosis or special needs, I shared my wipes and we had fun together, sharing stories of our fun that day and gazing into the fire. As we were ready to go, another family joined. The mom was in a wheel chair and they didn’t have any marshmallows to roast. I took the stuff that we had left over to them. They didn’t speak English. Miraculously, the other mom spoke Spanish and was able to explain how to make a smore. It was beautiful. Nothing was said, but it was known. Everyone felt seen and cared for in that happy moment.

It was the antidote to all the crazy that has been in the news, so I thought I’d share with you. There is so much good out there. Life is so beautiful, even with wheel chairs and genes that are a little off. It’s not perfect or easy, but I can’t believe how truly wonderful my life is and I am trying to soak in the good as much as I can to get me through those times that the inconsiderate people block in the disabled space and genetics make things more complicated. Keep looking for the good, it might catch you off guard but it’s out there.

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