Rettland Foundation

Adventure Style

colleenrenglish, , , , , , 5 Comments

10699965_10152649951256461_5851296882079295041_oAs wonderful as October was, I was so happy to have it over. I wanted to hide under a rock and attempt to process all of the ups and downs, makes some notes on what I learned and spend extra time with my family. So you can imagine my surprise when on November 1st a friend sent me a picture of the cover of a local paper with our picture on the front. With everything else going I had forgotten about the story I wrote for the Nov. issue of Growing Up in Santa Cruz that focused on special needs. Being that I typically live under a rock, I had no idea how widely distributed this was and how many people would read my story. It was an  honor to have somebody share their platform with me. I got chills thinking of who might read the story, the awareness that spread followed by a sense of vulnerability as I really couldn’t remember what I had written, what thoughts was I sharing with those that know me. If you would like to read it you can click here.

photoThe following Monday we had our final event for Rettland this year, a fundraiser at my favorite brewery. A portion of the beer sales were donated, people took our Not Speaking challenge and it was a really lovely time. I hate fundraising but this was a great time. It was more like sharing what we are doing than begging for money, which I am incredibly grateful for.

As great as all of it was, it wasn’t hiding under a rock like I had prepared myself for. Two days later another event crept up on me. With 2 weeks notice, Jared and I decided to renew our vows before we left town to celebrate our 15 year anniversary. Shortly after Claire was diagnosed, I really didn’t think we would see another anniversary. It took years but we came through and we are freaking proud of it. To celebrate we got new rings, we made new promises and we went to Disneyland. It was a surreal few days full of ups and downs. The high I felt out on the cliffs and we said our vows surrounded by people we know and love, the low when everything went wrong at Disneyland and Claire’s seizures robbed us of her sparkling eyes and bright smile to the high when she came back stronger, laughing louder and ready to have some fun. It really is more than I can express so I will share a few pictures in an attempt to explain the days. BY7B0086-2-XL BY7B0132-2-XLBY7B0173-2-XL54309040030 IMG_1448photo 54309040069 54309040090Disneyland was magical on so many levels and still every bit of an adventure. As we prepared to come home I heard that some very big news was coming, Neuren pharmaceuticals would be releasing results from the phase 2 NNZ-2566 for Rett syndrome that Rettland Foundation had helped families get to. We got home late and woke up tired. It was just a few hours and again I was completely overcome with emotion. I couldn’t believe the words I read on my screen, “It opens not only the possibility of successful treatment of adults with Rett syndrome, but also of early interventions modifying the course of the disease.” and “exceeded the pre-specified criteria for improvement in core efficacy measures compared with placebo” It was like a dream coming true. Literally, I had dreamed of a day when there was something know to treat Rett syndrome and then on November 11th data appeared to say that might happen. I couldn’t feel my legs, I messaged with families I knew had been in the trial, with friends that had helped me make it easier for them, the world had changed and I got to be a small part of the process. I urge you to read it for yourself here.

It all reminded me of why I started blogging. When we got the phone call and found out that Claire had Rett syndrome I googled it and it wasn’t good. There were no stories of families living, there were no medical interventions, there was little hope. As we got connected with Katie’s Clinic and found that life was possible I wanted to share our story and the message that life with rett is possible. I share our victories, our anniversary and our vacation because I want you to know that you can. You can get out there and adventure across Rettland. We have to keep living because treatment is coming, faster than I once thought. When the treatment comes we want to be able to have our same wonderful life, only a little easier because Claire can better be part of it.

Help!

colleenrenglish, , , , , , 3 Comments
Last day of 2nd grade!

It is the last day of school and I am buckling up for what is about to be one hell of a ride. It’s already been a long week. Claire sobbed yesterday morning at the discussion of going to Boston. The initial excitement is gone and now it just feels like she is getting shots and missing out on fun with her friends while she is out-of-town. Add to it, she sobbed. Typically, when she gets this emotional she has a seizure and falls into a deep sleep and I don’t have to address the issue of how hard it all is with her. I can yell at God, cry into my pillow and get over it while she rests. Not this time. She was so present, so regulated and still tormented by her reality. It was one of the hardest things I’ve gotten to deal with yet, my child sad that we have to go back to the hospital. We cried together and eventually the Beatles brought the smiles back, she is a sucker for All You Need is Love and Hello, Goodbye.

With both the girls at school I got about my business and tried to make a rental car reservation for our time in Boston. I was doing well until I discovered that the airport locations were sold out and the sketchy companies that had cars were charging three times over what is normal. That is when I broke. My mind swirled with the million things that need to happen before we leave at noon on Friday. Laundry, cooking, reservations, bills to be paid, work for the foundation, I need to shower, packing for the two trips and the overnight that Chloe will have so that we can leave by 5am on Monday morning and all I want to do is curl up with a basket of onion rings and sob.

I had nobody to cook for me so I pushed on and so glad that I did. Great things are happening with the Rettland Foundation. When I am not overwhelmed and watching the world swirl around me, I am overjoyed at the awesome that is about to come from our little project. I say all this not to complain or brag about what we’ve accomplished. I say this to ask for help.

You see, I know that we are at the end of our rope and we are not even half way through our marathon. We need a little help from our friends, the Beatles can carry us for a bit but we need help. Between now and the end of June our little family of adventurers will be managing more than we normally do and it is hard, really hard. If you have ever wanted to do something to encourage Claire or Chloe now would be a great time. They are both so brave and take on so much. As always your comments are appreciated, reading them in the hard times goes a long way. We are adventuring out to where it can feel very lonely, the reminders that we aren’t alone really mean a lot.

If you love somebody else out there in Rettland, remember that it isn’t just the big trips that are hard. It isn’t just the hospital stays or extra appointments with specialist. It is whenever there is a series of waves closer together. When you have been treading water for this long, just a few extra small waves can be more than you can handle. Be gentle, be supportive. Thank you.

Baby Steps

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rettland2We are getting closer. Life is some sort of surreal mix of girls playing, meetings to go over the details of the million things that need to be done so that we can launch our first family support project and then a few seizures here and there so that things aren’t too boring. All that said, could I ask a huge favor, it’s simple, I promise. Could you ‘like’ our facebook page for the Rettland Foundationand by clicking here. If you see any posts in your feed, could you comment or like it, pretty please? It helps more people to see what we are putting out there. If you fall into the category of somebody who wants to help financially, I’ve got our donation site set up and you can click here to go and make a one time or recurring donation. I am so excited to share the details of what we are doing but I can’t until we get some money to do it. Enough talking about this, more posts soon about our adventures as I see some fun things on the horizon.