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.

Living in Rettland

One of the things that still takes me by surprise are the giant waves of emotion that come out of nowhere. It’s often the littlest things like two sisters playing together when suddenly a wave of grief completely envelops me. Today, I experienced something on a whole new level, unexpected joy, joy that flooded my body until I cried and shook.

I knew that the package was coming but I didn’t realize how desperate I was for it until the FedEx truck pulled up to the front of the house, well the first one, which turned out to be the new ottoman. The second truck came just a few minutes later, this one with the package I had been waiting over 8 years for. My legs wobbled as I carried the light box into the house and I tried to catch my breath. This is what we had been working so hard for. 7 trips to Boston, 45 nights in hotel, 560 injections of a mystery substance and now we have a box from the pharmacy.

When we signed up for the trial, we were told that there would be a provision to have the opportunity to receive the drug upon completion. Today that happened. Up until this point we have been blind, unsure of what we were giving Claire. Up until today all of the shots were an exercise in research, not a potential treatment.

As I unpacked the box I recalled how desperately I wanted something to give Claire in the early days, anything. The worst part about being diagnosed with Rett syndrome was that there was nothing left to do, there was no plan to get her better. I don’t know what these shots will do for Claire but it feels amazing to have something that is thought to help, amazing.

This excellent progress for our family comes with one major drawback. Due to the ongoing nature of the trial, I will no longer be discussing Claire and life with Claire publicly. I don’t want people out there trying to figure out what the drug is or is not doing by gathering info from bits and pieces on the internet. It is incredibly important because the trial is blinded and we do not want to compromise that in any way.

I am putting this out there because I want you to know that things are happening, just very quietly. Progress is being made on the research front for Rett syndrome and now is the time that we all need to pull together and double down and chase it until trials are done and we can all talk about how the drug is helping our children and learn different rehab approaches from each other. That day is coming, it’s just a matter of time.

I have been so blessed by those of you that have joined me here. That you take the time to read my words means so much to me. I am grateful for those of you that I have been fortunate enough to connect with. I will miss this dialogue that centered around Claire but for now, we will just go on, living in Rettland as normal people do.

One last thought, thank you, again, to anyone who has ever contributed to any of the world-changing Rett syndrome organizations. If it weren’t for the families who have fought for every inch for the last 30 years, I wouldn’t be organizing injection supplies tonight. Thank you. 15

Done

Today, in the middle of the afternoon, huddled in the coolest dark corner of our home on an insanely hot day, we officially completed the IGF-1 trial. It was just a 40 minute phone call and 12 pages of online questions, but it was the very last step in a process that changed me to my core.

Just under 8 years ago we first heard the word Rett syndrome and that was a really bad day. We googled it and it was bad. At the time, we were told that all that could be done was intense therapy to maybe slow down the downward spiral that would be our precious little Claire’s life.

When we enrolled in the trial we had little idea what all we were getting in to and it is a good thing, otherwise I am not sure we would have enrolled. Now that it is completely done, I can say without a shadow of a doubt, it is one of the best things I’ve ever done in my life. Better than the marathon for my mom or that amazing time I got to hold babies in Guatemala while they waited for cleft pallet surgery.

I’ve learned more about life, love, humanity and hope in the last 2 years of this trial than the 33 years before it. This process shifted who I am to my core and I am eternally grateful that we had the opportunity to participate in it. Today I know that Rett syndrome is a neurological disorder that is being aggressively studied and that teams are working with every ounce of their being, to make Rettland a place where girls are treated and they get better. It’s not far off. It’s complicated and delicate and I don’t know when doctors will be able to hand out a diagnosis and a prescription at the same time but it is a hella lot sooner than I thought it was 7 years and 11 months ago when I was struggling to breath after the news hit us.

I am bursting with hope and so is Claire and that is the really exciting part for me. She knows that there will be not just downs but ups ahead as well. I am so grateful to everyone across Rettland who has made this possible. It will be hard to thank everyone but I want to thank a few. Thank you to my close friends Anne Marie, Erica and Maren, I wouldn’t have signed up for this without you. Thank you to all of the people at Boston Children’s Hospital that made this happen as well as everyone who ever held a lemonade stand or ran a mile for the Rett Syndrome Assoc. of Massachusetts and rettsyndrome.org as this trial wouldn’t have happened without that financial support. In addition, thank you to everyone who has ever donated or raised a dollar for any of the many fantastic organizations out there changing the future of Rett syndrome; Katie’s Clinic, Frankie Says Fight Rett, Cure Rett, Julie’s Army of Hope, Rett Syndrome Research Trust, Southeast Rett Snydrome Alliance, Girl Power 2 Cure, Magnolia’s Hope and the many others that are doing fantastic things in the many corners of the world. IMG_5071

With so many different forces out there we are making progress and it is freaking amazing. I happen to be able to see it today because in this moment in time, I can look and see change. The landscape today is different than it was 8 years ago and it is different than it was 2 years ago and by different I mean better. Sincerely, from the bottom of my heart, thank you to each and every person who has ever donated or shared or supported because you’ve helped us get here and it’s amazing. Yes we are done with this clinical trial but I’m far from finished, really we are just getting started.

A year later

A year ago I was sitting in a hotel room alone with Claire, crying my eyes out. Jared and Chloe had flown home so she could be at school for the first day of kindergarten. I was heartbroken to miss that day. I was heartbroken to sit and give Claire the last shot of what I suspected was a medicine that was helping her. It was an incredibly hard and painful lesson in living with what you can control.
IMG_1319It sure is a lot easier to look back, knowing that you’ve made it. We didn’t just make it, we lived wild and alive and vulnerably. With a little distance from the crazy I can say it feels awesome. It’s a blur and surreal and I’m very tired but it’s awesome.

Today we marked the end of the summer with a special breakfast and meet the teacher day at school. Both girls were thrilled with the new teachers and the friends they have in their classes. I never in a million years thought this would happen in my life. It just all felt so normal. I kept thinking; I don’t feel like puking, this is weird, I’m fine.

I’m just going to go with it. I know that there will be plenty of harder days ahead, I don’t need to sit in the pain of the past. I can revel in the goodness of today and be hopeful for tomorrow.

Game Changer

It’s been a crazy to think back over the whole arch as we finish the final time point for this trial. I was taken back to when we were first diagnosed. We were given paperwork for a disabled parking permit and Make A Wish and sent home. All the doctors and specialist that filled the schedule while we searched for the answer were suddenly a thing of the past. Everyone knew that there was nothing that they could do for us.

When we enrolled in the trial part of the appeal was in getting to go back to a place where there were doctors that were trying to help. I’ve been nervous to step back outside of that as we wrap up this process. There is an odd comfort that comes from being involved with medical professionals. It’s a false comfort as they weren’t actually treating Claire, but it felt good.

I wish I could better describe the last 10 days or better yet, what we’ve experienced over the last year and a half. All I can come up with is that I’ve changed. Claire’s changed. Jared and Chloe have to. We got to try to do something to help Claire. Three years ago, that option wasn’t on the table. IMG_5088

Today we are on our long journey home from the hospital. Claire is peaceful and proud of what she’s done. Seven years ago we would have never dreamed that she would be able to do anything for herself, much less be part of changing the course for Rett syndrome. Until we started the trial we only knew a Rett syndrome that took.

Today I see the potential for a life with Rett that can get better. The game is changing. I’m not sure what to do with that, other than to keep dreaming. This has been hard but it’s not time to give up. Not yet.