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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When Life Gives You Lemons

You know the old adage, when life gives you lemons, make lemonade or margaritas. I like the idea behind this, but what if you don’t have sugar or tequila? Then what do you do?

It’s not a perfect metaphor but I’ve been thinking about it lately as I watch the beautiful lemons in the decorative bowl on my kitchen counter slowly shrivel up. Honestly, each day I’d look at them and feel like a small failure for not using the beautiful lemons. They would have been great just sliced and added to my water or they could have lent a nice brightness to a vegetable dish. But I just haven’t had the energy for the extra step.

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So now I have shriveled lemons and that’s alright. Sometimes it’s too much to make something out of what we have. Can’t it be enough to just have lemons, sitting in a bowl.

I say yes.

Today I am sitting with my lemons, appreciating their beauty before I compost them and get take out. I’m also thinking about summer and how stinking hard it is. I want to make the most of it and thrive despite the circumstances, but it’s alright that it’s hard.

Last year we made the most of it as we bravely went back and forth to Boston and fought Rett syndrome head on. This year, we are sitting with it in it’s bitterness and beauty.

And that is enough. For now.

 

 

Winning and loosing

It’s only April and I can’t believe the highs and lows from this year. I sat in awe this morning at just how incredibly amazing my life is. We have a home that is an easily accessible refuge for our family, I have a husband who is committed to live a life full of love and whimsy and the girls offer the craziest, most beautiful form of balance that anchors our daily life. There will be more clinical trials for Rett syndrome than ever before this year and progress in the labs is happening must faster than I could have conceived of just a few years ago. I have more than I deserve.

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At the same time, I’ve had greater struggles with my own health this year. Claire is showing us new challenges with what she needs. I am seeing my friends daughters with Rett have greater complications and I’m hearing of too many girls with Rett syndrome leaving this Earth too soon.

In my head it’s balance. The hard, the dark, the grief, it allows you to appreciate the beauty, the light, the joy. Instead I am finding myself unsteady. As I see a friends 1 year old start to take her first steps, my chest tightens and I get a muscle spasm above my eye as I am reminded that we are still working on this skill with our 10 year old. As I feel the pain and grieve, I am surrounded by what I can best describe as the peace of God.  It’s so overwhelming and beautiful that I lean into it only to find that it is so intense that it feels like being hugged by a fire.

I am left fragile and in awe. It’s all so freaking good and so damn hard. It feels unsteady. I suppose that somehow it is balance. I haven’t been writing much and this is why. I feel like a broken record, it’s so beautiful, and so messed up. I hope with time that I might be a little less fragile and have a few more things to say, but you might not hear from me for a bit. If you are out there breaking apart too, you aren’t alone, don’t quit.

The Good In the Grief

Grief is a funny thing. Rather, it is a maddening process that makes no sense, hurts like hell and at the same time is a source of great relief. It also gets to sneak up and mess with you when you can’t see it coming. This week I was enjoying lunch with a friend when suddenly I was sobbing. The reality that I hate being sick, because I’m worried I will miss Claire’s last smile, laugh, breathe hit me like a freight train.

After clearing the tears and snot from my face we laughed at how annoying grief. Thankfully my friend is some sort of grieving badass ninja lady, she said the perfect thing and then stole the pineapple off my plate.

It’s weird to be living and so fragile. Each day is incredibly remarkable and terrifying. Today was going well. I cleaned the fish bowl and went to the doctor. My chest xrays came back clean, I let the girls watch tv for a bit after school just for fun. Then we took Claire to Kid Quest, our fabulous respit facility. A place that she feels so comfortable that as we got inside, before we got out of the doorway, her brain seized, hers limbs shook and her face turned to ash. We moved her to the couch to lay on her side. While I managed the ice pack, her aide stroked her hair and spoke softly to her and Chloe sang their special sister version of “You are My Sunshine”. I sat and watched Chloe and her concern for her sister and wished I could make it all go away, but I couldn’t.

Claire was nearly stable and we decided to go, she was in good hands. I had planned to take Chloe to Starbucks for a fun little treat just the two of us. It was busy but the line was short. I coached Chloe on making a choice but when the time came to order she wasn’t ready. Tears streamed down her face as I paid. I don’t know if it was shock from what had just happened with Claire or just the fact that she’s 6, but with quivery lips she kept saying she was sorry. I knew we would talk it out and get back in line, the least I could do for my guilt of exposing her to such a traumatic life was give her something sweet to eat.

In the time that we talked, the line grew to the door, still we walked to the end. That’s where we were met by the lady that was behind us. She watched the scene unfold and purchased the marble loaf that Chloe had been eyeing. She handed it to me and smiled. I hope I said thank you, I just remember my throat swelling and trying to hold back the tears. It was a small gesture but it restored me in a way that I can’t describe.

We got out to the car before it occurred to me to check if I had cash to pay the lady back, of course I didn’t. So if by any chance, you are the kind human that gifted us the pastry at Starbucks on Mount Hermon Dr. THANK YOU. I can’t say enough how deeply you encouraged me. To everyone else, be nice. Man life is crazy and you never know what is behind the smile of the person next to you. It doesn’t take a lot to be nice but it can make all the difference in the world.

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Recharging

Today, I post for the first time, not as Adventures In Rettland, but as Colleen English, a writer. This feels awkward and scary, so I figure it’s a good idea. I’ve been blogging about our life under the heading of Rett Syndrome for a while. Truth is, life is bigger than Rett and I’ve been wanting to break out for a while but haven’t known how. I’ve been telling myself that people only read because they want to hear stories about Rett and Claire. To the friends who have called that out as a lie and encouraged me to write beyond Rett, thank you, SO VERY MUCH.

Things in our world have been slowing down and I’m trying to embrace our normal. Claire is at the end of her annual March tradition of epic seizures followed by a long and drawn out low grade bug that leaves her miserable and really sleepy. The new thing that I am having trouble coming to terms with is my crohns.

I’ve been in remission for a long time but not any more. I didn’t eat anything wrong and there isn’t anything right that I can eat to make it better. My body has just decided to revolt against me. As much as I want to complain, Claire rolls her eyes at me, as if to say, oh you aren’t well for a few months, at least you can talk and complain about it.

Friday began as a beautiful day. I had rested, eaten what works best and attempted the perfect cocktail of drugs so that I could go out and have fun for a few hours.  I was tired from being up all night sick and the night before with Claire. Still, the urge to feel alive was stronger than the fatigue, I was desperate.

Captain Awesome had taken the day off. We took the girls to school, stuffed some Friday folders and made our way to Mount Hermon Adventures.  Just 10 minutes from our home is this stunning zipline course through a coastal redwood grove. It was the easiest fun I’ve ever had. You walk up to the first line, they clip you in and wee, you fly above trees and creek and land half way up some of the most awe inspiring trees. It was impossible to think about the pain in my joints or worry about seizures, the beauty and joy was overwhelming. My favorite part was hanging with Huebert, a redwood thought to be about 1,000 years old. We took turns hanging off the side in what was oddly one of the most freeing moments of my life. Eventually we flew back down to reality and I crawled back into the comfort of our bed where I spent most of the next few days. Nothing had changed, my body was still drained, but my spirit was recharged. IMG_7415

It’s easy when you are dealing with chronic illness to not make the time. To never feel up to something life giving. I urge you, please do. Regardless of being the patient or the caregiver, we all need to be recharged. What does it for you? I can’t always hang from a tree, so I’d love to hear what works for you.

Beethoven and The Beatles

Music is a funny thing. The science behind how music effects our brains is so fascinating to me. All of the biggest things in my life seem to have song that go with them. When Claire was little music was one of the first ways we learned about who she was. She liked the White Stripes as a baby and Social Distortion in preschool.

As she got older music became close to a treatment. Certain songs would bring her body such peace. Then her brain started doing weird, scary stuff. Randomly her brain would go next level. She was further trapped in a body that already didn’t work, she would become stiff and appear scared. I don’t know how, but a lot of the time, music could set her free.

Sometimes I would sing the songs that we learned in Music Together and sometimes it was old favorites from my iphone that would let her brain release. The one constant is that something only works for a while before it crosses a threshold of being part of the problem. It’s one of the cruelest jokes that Rett Syndrome has played on all of us.

Slowly, each of Claire’s favorite songs has become poison to her brain. The hardest for us to loose were the Beach Boys and the Beatles when she was 8. Those were her favorites of all time and easy for everyone to enjoy.

Recently we’ve been listening to a lot more strings as Chloe is getting into playing her cello. Claire really enjoys this type of music, I don’t know why or how, but orchestra music works for her right now. She loves it. She loves it even more in person, who doesn’t?

It just so happens that the Santa Cruz Symphony had a family concert today and it featured Beethoven and The Beatles. Claire loved the opening with “Ode to Joy” but when they played “All You Need is Love” her body was so relaxed and her eyes so wide as the bliss washed over her. It was a new way for her to access her old favorite. I had been poised and ready to run her to the door as her brain revolted against her. Instead I was able to just let the happy tears flow and bask in the glory of something working.

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Yes, I’ve already found the instrumental Beatles on iTunes, it’s not as awesome but it will make for a good background as we drive to therapy after school.