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.

 

The Terrible, Horrible, Really Awesome Day

What a day, what a week, while we are at it, what a year. The most significant part of our life recently isn’t complications from Rett (that still contributes), rather my Crohns Disease has been problematic.

I’ve struggled with energy, intense pain and the isolation that comes with spending more than half your waking time with a toilet. It’s all a blur, but here is the strange part, I feel great. I should clarify, as I type I am in great pain but if I ran into you in the parking lot in 5 minutes, I’d tell you I’m good and I would really mean it.

It’s been that day that the rain poured hardest just as school got out and the last disabled parking space got taken just as I pulled in. I had to sit in soaking wet pants in the middle school traffic because I forgot to take the other way home. Also, I found out that our fabulous teacher has decided to teacher summer school (it’s a BIG deal) and my new sweats from the Gap had just been delivered while I sat in traffic.

So now I sit, in my comfy sweats, listening to Chloe practice with her adorable youth orchestra while Claire happily listens to her own music. I’m not crying because I am in a room full of girls Claire’s age, using their hands ever so delicately. Nobody in here will know how truly badass it is that I can sit here with dry eyes but that is just fine.

I wondered what life was like after adventure, the normal is really hard but it is insanely beautiful. There was an illusion that vulnerability came only with the big adventure but I am learning it’s a choice that is always available. Sometimes it is just being sick when you are sick and letting people help. They all seem like terrible, horrible, really awesome days and I think I am starting to like it.

 

The Other Side of Trying

It’s been an odd January. We have been getting all the rain that we didn’t get for the last few years, my health has been horrible and there is a giant Boston sized hole in our calendar.

For two full years, we had a mission, go to Boston, fill out the forms, live bravely, go to Boston, repeat. On the first trip to Boston in March of 2014 I had no idea what to expect. Honestly, I didn’t think the medication would work and believed that the research needed to happen so that we could learn by failing.

There were so many unknowns at that time. We rallied our people around us and we bravely went. It was truly like nothing we will ever do again. Before we enrolled in the trial I had to make one major shift in the way I thought, I had to believe that Claire could be better. That was hard. I felt like I betrayed her in that. All I have ever wanted was for Claire to feel like she’s enough, exactly how she is. To tell her we had to do all this so that maybe she could be better, that was hard. Thankfully she rolled her eyes at me and made it clear, we needed to go for it.

I had never dreamed so big and stepped out so vulnerably as the day that we flew to Boston for 24 hours for the screening visit. I had so many questions and somehow today, I have answers and it’s weird. It’s weird to not be trying. To be done with that. It’s uncomfortable to not have dates for Boston on our 2016 calendar.10154259_10151992569710880_6076214292283447961_n

I know now what it is like to have Claire, a little better because of a medical intervention. I really like Rett having a little less grip on her, yet still it controls too much. It’s become our new norm. We’ve moved on to new, still not exactly typical challenges with life. With the trial done we are trying to figure out how to find a balanced life that doesn’t revolve around research. It’s sorta normal and awesome and empty all at once.

I learned the hard way that we can’t sustain a healthy life and push that hard for too long. The part of me that wants a normal life for Claire is still there, but instead of being indulged with brave big plans, that part sits on a bench and takes deep breathes with the waves as they crash.

Now I discuss time as before and after Boston, as it was a major turning point. I’m so glad Claire wanted to go for it as I have learned so many lessons in the process. One of those was that it is good to go for what’s scariest. The new scariest thing, just living, in our new normal, the adventure never really stops. IMG_5088

Trying

I feel like a crazy person. The days all feel so normal and lovely and completely nuts all at the same time. I’ve really been struggling this week. I am so completely worn out from the break. It is depressing that the care that Claire requires depletes Jared and I if we have no help for two, four day weekends in a row.

I see people talking about what they are doing to make this a great year and I’m over hear like, “I’m really going to try to keep my head above water, or at least see if I can tread water or maybe just try to not drown.”

But I’m trying. I painted a door in an effort to do something I enjoy. I’m trying to focus on building Rettland Foundation as a way of using my pain to help others. I’m trying to eat healthy and drink water and stuff but still, I’m tired and the funniest part, I wonder why.

I know why, but for some reason I am always surprised at just how depleted I am. Then on our way home from physical therapy (because most kids go to PT after school, right?) I tell Chloe that we can’t go shopping after school tomorrow because we are taking Claire to a cardiologist. As she takes me through the typical run of multiple questions I paused to answer when she got to, “Will Claire die if her heart stops?” “If Claire dies, how will it work with me being the only kid in the family?”

And there it is. This is the normal, daily conversation. Yesterday it was centered around how Chloe doesn’t enjoy the sight of Claire purple and how she is excited for when sissy doesn’t have any more seizures.

I don’t know how else to put it out there that this is crazy. One minute I’m beaming with pride as Claire walks and sits so well, higher quality movement than we’ve seen in years. Then I’m discussing death and holding the oxygen on Claire’s face as I wait for her brain to let go and for her to gasp for air.

The weirdest part is that in all this, I feel really, really tired but also fine. I don’t know what that means. I’m pretty sure I haven’t reached acceptance but I have learned to live in it. It’s bizarre. I won’t babble on any more but if you see me walking around with a happy, blank look on my face as I smile and look at the sun on the trees, now you know why. IMG_6783

Wild

Holy cow 2015, that was nuts! I just reread my post from the start of the year. I set out with the intention: grow slow. In hind sight, I have to say that is hysterical. 2015 was the year that we grew by leaps and bounds. We literally moved and nearly doubled the size of our home sort of on a whim. The base of supporters for Rettland Foundation grew far greater than I had dreamed of and we are set to do some very cool things in the future. Personally I learned more than I thought my brain could handle. It was a huge year of growth and also of seeing the world with less of a filter. Through the various ups and downs I found myself continuously uttering; wild.

When I make my list of most notable moments, I didn’t see any of them coming. Not one. What I learned most of all is that when you live and love hard, it gets nuts. As much as it hurt to do that, I want more of this for the upcoming year. I haven’t the faintest idea what that will look like but I know it will be wild and I’m going to embrace it.

Last year we sat with a new doctor and talked about how a drug could effect Claire and our treatment goals. That is just wild, nuts, crazy, beyond what I had ever dreamed of what could happen. It’s just crazy to think of what happens after that. I honestly can’t even conceive. Maybe things get better, perhaps they will get worse.

A very big part of me wants to just freeze it all where it is right now, safe and relatively smooth, pain that I know how to navigate. Yet as much as I see the value of caution, I have to choose wild. I know I’m signing up for hurt with the joy, exhaustion with the exhilaration but it’s all too good to avoid.

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!

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