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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Happy Holidays!

Two days into the official “holiday season” and I don’t know how I’m going to make it. I know I will, but it isn’t going to be easy. We survived Thanksgiving with a well timed trip up to San Fransisco. It was a lovely distraction but it still stung as we sat in the restaurant of our hotel and spoon fed Claire her mashed potatoes.

After our fun trip I struggled to figure out why I felt down as we got home. I didn’t want to get out of bed, didn’t want to put the tree up, I was just down. Eventually we went for the family walk though the redwoods that we had committed to. The fresh air that smelled like Christmas filled my lungs and lifted my spirits. As we walked Chloe went on and on about the various dragons that she was looking for. That is when I realized; I hate family time.

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Chloe’s imagination is so magical, to see her sit and sketch what only she can see is a gift I do not take for granted. Yet at the same time it breaks my heart as I look at Claire and wonder what wonderful stories the trees tell her. This is why the holidays are so hard for us. There is nowhere to run or hide, the holidays create time to be a family, or in our case, a place where loss and grief can’t be avoided.

I’m not putting this out there to be a downer or solicit sympathy. I know that there are others of you out there struggling. I just wanted you to know that you aren’t alone. Rettland is a hard place to be, particularly this time of year. All the fun holiday crafts and food just don’t work as well here. Gift giving is harder for those that have multiple disabilities, it just is. Parties are harder to enjoy when you are with your 10 year old who still depends on you like she did as an infant. I feel better already just putting this out there, so thank you for being here too. Now, who’s ready for January? Bring on 2016!

 

Trying

I love November. The weather, the focus on gratitude, it’s not October; so many things to love. I was ready to dial back, take care of myself and relax into the boring life of a stay at home mom. That hasn’t been as easy as I hoped. The thing is, living in Rettland is often more complicated than we hope and this has been the case.

IMG_6475 2Last week I had started to really get down. I was trying to rest and recover and it felt like an impossible task. Life just kept on and so have I. It’s been a grudge match. Two steps forward, two steps back but we keep on.

Friday we were plugging along when we got a call from an old number I recognized. It was the facility that Claire used to ride horses at. They had tickets for us to go see a show in San Fransisco on Saturday. At first I said no. Then I thought about it and decided, why not, let’s go. We had hotel points to use for a room that was close, so we’d make a little staycation out of it. We needed a win. This should have been a slam dunk. After all the travel to Boston, one night, a 90 minute drive, easy peasy. But it wasn’t.

I won’t bore you with all the details, but it wasn’t an easy win. In fact, it didn’t feel like a win at all. Yes, we all enjoyed the amazing performance that Cavallia put on. We loved seeing the friends we saw along the way. But the adventure drained us.

It’s frustrating. If things were difficult because we made bad choices or because we quit, that would be one thing. But we are trying so freaking hard and  still it seems like we can’t make any ground.

Then is the constant twist that I am somehow consistently surprised by. As I feel broken and insufficient, suddenly I feel complete. It’s what allows me to keep trying even when every day feels like a failure. It’s when I give up every day that I am reminded of how deeply loved I am and that is why I can keep putting one foot in front of the other.

The LORD is close to the brokenhearted and saves those who are crushed in spirit. -Psalm 34:18

If you are out there trying and it feels like it’s for nothing, just know that you are not alone. Just in case nobody told you yet today, I am thankful for YOU and I know many others are too.

Mise En Place

One of the most glorious things in my life happened this morning. Our sweet little energetic Chloe bounded out of bed early on a Saturday morning and offered her “sous chef” skills. She requested permission to prepare herself bread with almond butter and jelly.

Before I go any further, you should know that I am neurotic about MY kitchen. It comes from my background working with food, when cooking happened in a clean white jacket and everything was organized and labeled, it’s a system not everyone appreciates like I do, particularly 6 year olds.

My bed was warm and my back ached, so I granted permission and off she went. I prepared myself for a sticky counter and jars with missing lids, realistic expectations go a long way when finding balance with the force that is Chloe. I went down and much to my surprise, there was no evidence that my little sous chef had been in my domain. I asked her where the jelly was. She opened the door to the fridge and said “mise en place!” It was a miracle, she does hear what I say! It was so much more though. Everything does have its place and that’s why I’ve been struggling with October.

Eight years ago when Claire was diagnosed with RTT October was Rett Syndrome awareness month. An article in the paper actually led to us meeting other families, it was a point in time that raising awareness was crucial. This year I have struggled to raise awareness as it feels like I talk about Rett all year-long, I don’t want to be the person who just talks about their issues and constantly takes. Yet the slow constant stream of progress needs to be shared.

Captain Awesome and Claire, having a blast at Disneyland for her 10th birthday recently. We loved how it wasn't about Rett and ALL about CLAIRE.
Captain Awesome and Claire, having a blast at Disneyland for her 10th birthday recently. We loved how it wasn’t about Rett and ALL about CLAIRE.

I am working to find a new place for Rett syndrome in our life. It ‘s not in the center and it certainly won’t dominate an entire month for me. It’s always going to be there, guiding many of our decisions, setting some boundaries and testing our limits. I don’t have an answer for this today but I do know that I am looking for a new place for Rett Syndrome, everything deserves it’s place, just not in the center.

Mondays

Monday’s have changed for us. After years of driving an hour each way, every Monday, for 30 minutes of PT with a horse, I am home, resting and it’s weird. I’m fine withholding good things from Chloe because I know she can get therapy in her 20’s and she will be fine. With Claire it is more complicated. After the crappy genetic lottery that she hit, I want to do everything possible for her. That’s why we have done pt 3 times a week for the last 8 years, flown to Boston repeatedly and advocated on many fronts for various things to improve her quality of life. IMG_1411

The decision to discontinue horses for Claire has been a heartbreaking one. It’s all me. I have the time, the insurance, the gas money but not the energy. I never wanted to be the limiting factor in Claire’s care but I am and that is such a hard thing to sit with. On top of that, the fabulous respit facility that we use had an opening on Mondays. It is such a huge blessing but it still feels like a mixed bag.

So right now, instead of shuttling my kids around I’m home alone, resting so hard it hurts. It hurts for so many reasons. It is lonely to not doing “mom stuff” on a Monday afternoon. I feel the weight of letting go and not controlling the future of her scoliosis, even though control was only an illusion at best. I feel the fatigue of years of hard settle into my bones. It’s no big secret, I love getting to help others. Who doesn’t love being the person with their shit together pouring into other people’s lives. But that isn’t how I’m getting to learn right now. Today I wrestle with the fact that each day is exactly enough, even if I didn’t try my hardest and it feels like a complete mess. I’m saying this here in an attempt to commit it to memory and believe it.

The best stuff isn’t in the doing, it’s in the being and I am enough.  -me

The Middle of Somewhere

I really thought that by now I’d be doing not much else beyond enjoying life and the stage we are in right now. After all, we finished the trial, we moved into our accessible home and Claire is on a drug that just might help with something. Doesn’t that sound like a finish line? I had promised myself that this was the finish, it’s how I kept going for the last few months. Come to find out, it’s just the middle and I have been fighting that so hard.

I was really ready to take a break from learning and growing. I’m tired of the messy and ready for a little cleanliness and order. In my head it all made sense. I suppose that should have been a clue that something was wrong, things just don’t make sense, not in reality.

In reality a beautiful girl with Rett syndrome passed away today. At the same time my good friends are struggling with their daughters that live with Rett syndrome. It’s just not clean.

Today I got to do a little Not Speaking event at a local brewery. I set up a table and try to get people to spend 5-10 minutes not speaking to enter a raffle. I hate fundraising. I hate talking about Rett syndrome. I hate how it ruins lives more, so I go out. Just as I got there a friend sent me this picture along with another Brene Brown quote (we are reading Rising Strong together and she’s ahead). IMG_5891I sat at my little table pondering this. People walked by trying to avoid eye contact and the heaviness of what Rett is really sank in. It almost crushed me. As I attempted to catch my breath and work through the tightness in my chest, suddenly I felt better. A familiar song came on the radio, by the time I recognized the tune the chorus was playing:

It just takes some time
Little girl, you’re in the middle of the ride
Everything, everything will be just fine
Everything, everything will be all right

Between the picture and “The Middle” literally playing I started to think, we haven’t finished. As I listened to the song I was flooded with memories of listening to the tune back before Chrons Disease and growing up and Rett Syndrome. I would drive down Shea Blvd. at night with my windows down, wind in my hair and music blasting. I had no idea that 20 years later I would still feel in the middle, but I do. I know it’s not where I want to be but the truth is that is where the magic happens. It helps to have good friends who check in when they know it’s tough and fond memories that are accessed by random songs on the radio.

We Get By With A Little Help

IMG_6597-1(1)It’s been a long week, month, year (or two). When I hear people talk about our life it sounds exhausting. It would be completely understandable for me (or any parent in Rettland) to manage just to survive while caring for somebody with Rett syndrome. The thing is, I’m thriving. Here is why, we have awesome people around us.

Today I got a text from a friend that received a google alert about “Claire’s Race” which is happening tonight. (If you want to see the article for yourself you can click here) I was over the moon excited for several reasons.  To start, our ridiculously awesome neighbors organized this event that has already raised over $7,000 for Rettland Foundation, that the event is even happening brings me such joy. Next, news about what is happening made it to out without me being involved at all. Add to that I have friends who text me when they see alerts about Claire. Little did I know, it got even better.

While I was at home,reveling in the awesomeness of the people around us, Claire was at school. On Fridays the 4th graders participate in “genius hour” They work in groups and research whatever they want and make a presentation. Today, Claire’s group was working on their presentation about Rett syndrome and when they search for information online, the article about “Claire’s Race” popped up.

Let me be clear: there was a point I never thought Claire would have friends or be included. There was a time that nobody had heard of Rett Syndrome. Today, while she was in class, researching as typical 4th graders do, information about people fundraising to help popped up and it was our story.

It isn’t all sunshine and rainbows and there are hard days, but keep dreaming because things like this happen, they did for us. I am just in awe as I sit back and think to myself, THIS IS WHAT RETTLAND IS ALL ABOUT and I am so glad you are here.