tag:blogger.com,1999:blog-60413940008158499762024-03-13T04:59:16.017-07:00An Organic ExperienceThe things that fill my days and help me to understand the work that God is in the process of.Colleenhttp://www.blogger.com/profile/03696326541180487827noreply@blogger.comBlogger347125tag:blogger.com,1999:blog-6041394000815849976.post-23460282381476893462013-08-08T06:58:00.000-07:002013-08-08T06:58:49.146-07:00Moving!Over the last few weeks I have gotten a little clearer vision for what I want to be writing. As a reselt I have moved to <a href="http://rettland.com/" target="_blank">Rettland</a>! I would love it if you can join me over there as the journey continues. Colleenhttp://www.blogger.com/profile/03696326541180487827noreply@blogger.com0tag:blogger.com,1999:blog-6041394000815849976.post-66574611854141383082013-08-07T17:26:00.001-07:002013-08-07T17:26:03.801-07:00Simple Pleasures<br />
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We are solidly back in reality. The well behaved 4 year old that went with us to Arizona is overtired and rather disappointed that the world no longer revolves around her. Jared is playing catch up at work and too tired to talk at the end of the day. Claire's had three appointments and tomorrow we get to go up to LPCH for the scoliosis clinic. I woke up with a terrible headache and nearly passed out after my physical therapy. This is real life, it sorta drives me crazy and at times can be a bit depressing. Laced throughout it there have been a few simple pleasures. We donated a <a href="http://www.liveearthfarm.net/csa/join/" target="_blank">csa box</a> to Kid Quest (Claire's summer home away from home) upon Claire's urging us to do so. The joy on the faces of the staff as they sifted through the heaping bag of veggies was priceless. It was a moment of slowness when everyone in the moment was thankful for the process, the farmer that grew it, the parent who provided it and the staff that will lovingly cook it with the kids for tasty meals that will be enjoyed together. Later in the day Chloe finally earned a few minutes of ipad time and chose to climb into her sisters bed and share it with her. It's nothing life shattering, the world would keep spinning without it but these simple pleasures, sharing things that we enjoy, that's the stuff that heals my spirit when I am surrounded with piles of laundry and fighting off back pain. I can deal with that in a world that's simply awesome like this.<br />
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<br />Colleenhttp://www.blogger.com/profile/03696326541180487827noreply@blogger.com0tag:blogger.com,1999:blog-6041394000815849976.post-17105732938071915732013-08-07T07:53:00.000-07:002013-08-07T13:10:27.200-07:00Arizona and backSince my last post, we have traveled to and from Arizona. We went strong up until the moment we left and hit the ground running once we got home. This might seem obvious to you, but somehow in all of this I have realized that we do a lot of life. It's not busy, it's just not boring. Our life is an adventure, there is nothing mundane in our world. Just going to the grocery store becomes a heroic activity when one child is on the verge of a seizure and the other is trying to do cartwheels in the parking lot. The trip was great but exhausting. I don't know when my brain is going to be functioning again, so I am going to put up pics of the trip. While going for a funeral wasn't fun or anything I ever would have wanted to be doing, we made the most of it because today is what we've got. So here's the story of our adventure to Arizona in pictures.<br />
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Quick AFO adjustment and circus training right before we left.</div>
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Sweetest sisters ever.</div>
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Chloe wanted to make a raisen, it was fun to watch, if you are sitting forever.</div>
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Starbucks baristas were randomly super rude.</div>
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The girls were champs, it was however a very long night.</div>
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Chloe was intrigues by the cactus and wanted to know where the sand was. </div>
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We found the sand however, she now thinks that Arizona has the sand of the desert but also lots of grass and bagpipers to bring in the sunset.</div>
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We did bring a little slice of home with us.</div>
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I tried to explain that this is where I once worked, they just liked the fountain.</div>
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Claire loved lounging by the pool in the warm night.</div>
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Eventually we wore Chloe out.</div>
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Of course we jumped on the beds.</div>
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We also managed a little fun in the awesome pools.</div>
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I was very amused that they made fire to roast marshmallows and melt
chocolate, pretty sure you can make s'mores there with no fire.</div>
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Before we knew it it was time to head home but we really enjoyed our time in the beautiful desert.</div>
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Sitting in traffic, not so much.</div>
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Now it's back to normal, which is still an adventure. I am really excited to tell you that I have started to move where I am writing, soon there will be a new blog, Adventures in Rettland, details to come!</div>
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<br />Colleenhttp://www.blogger.com/profile/03696326541180487827noreply@blogger.com0tag:blogger.com,1999:blog-6041394000815849976.post-74413285705423129292013-07-29T21:06:00.001-07:002013-07-29T21:06:10.829-07:00TodayFunny, I thought I was on the ragged edge of exhaustion and fighting back, forcing myself to rest so I can get back to being somebody who thinks in complete thoughts. Well, after last week I learned that it is possible to function, much, much more exhausted. I knew that I needed to rest going into last week because we had planned for Jared to go back to Arizona on Friday to see his mom who was fighting cancer in the hospital. Monday I was worried as I felt like I was getting sick, my throat was sore and my muscles ached. Then Jared got the call, he needed to get on a plane asap. We immediately changed gears, Jared flew to Arizona and made it to see his mom hours before she passed early Tuesday morning. If you'd like to read about her life please click <a href="http://hansenmortuary.com/obituaries/?id=2105" target="_blank">here</a>. I don't think I have ever cried like I did that night. The sadness was overwhelming, this was a very difficult loss. Still, the days go on. Jared came home, bleary eyed and attempted to go through the motions. Later in the day on Wednesday Claire developed a pnuemonia, secondary to aspirating because of her cold. Her fever spiked, her oxygen stats dropped, we did all the stuff we do when that happens and five days later she has just started to laugh again, her vibrant self is emerging from her tired body. We are preparing to drive to Arizona in 36 hours. Short of reserving a rental car and a hotel room, nothing has been done to prepare for that. I could be freaking out. I could be huddling in the corner, overwhelmed and fearful. But today, on our way home, I drove with the sunroof open, Imagine Dragons blasting, Chloe singing and Claire laughing. I have so much today. So much to enjoy, to savor, to fight for. So with that, I will leave you with this.<br />
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<br />Colleenhttp://www.blogger.com/profile/03696326541180487827noreply@blogger.com3tag:blogger.com,1999:blog-6041394000815849976.post-84815341404296805002013-07-16T22:21:00.001-07:002013-07-17T07:43:54.231-07:00Starting Have you even thrown your name into a hat, without thinking about it much, figuring you won't get picked so it won't matter. I sorta did that. In late June, when I was exhausted and clearly not thinking well, I saw a post on Jon Acuff's blog, something to the effect of;
adventurers wanted, 24 people, 24 days, 1 awesome result. There was
mention of risk, passports and machete's so of coarse I sent in my info
to join, doesn't that sound like what a tired mom needs? Fast forward, I am somehow in this Start Experiment and before groups get assigned I need to pick a risk for the 24 days. I was so depleted that the only thing I could think to risk was figuring out how to restore myself. I didn't think about it long, it's what came to mind and I went with it. Ever since then I have been trying to figure out, why is that a risk? What makes restoring myself dangerous? I've come up with a few hard answers. I want to share it here because I am curious, anybody else ever feel like this? If I am completely honest, I am afraid to rest, restore, have fun because I fear that those around me will think that everything is alright. How can I possibly be rested and having fun in the same day that I hold our 7 year old limp and blue after seizures? The truth is that is my reality. I have to do just that, enjoy one moment and grieve the next, if I stay down I choose missing the good stuff and I am not willing to do that. It doesn't mean I don't need support but I fear that is how it will be taken. The other thing that holds me back is the fear of failing at whatever it is I attempt to restore myself. It happens, grief has a way of striking when I attempt to rest. Regardless, I know I need to do it. I reached a level of exhaustion last week where it no longer became an option. This needs to happen, I know it will be good for me. My favorite part about this is that it's an experiment, you can't fail at an experiment, you learn from it. So here's to what happens in the next 22 days, so far I took a bicycle ride with Chloe and got a red journal. Colleenhttp://www.blogger.com/profile/03696326541180487827noreply@blogger.com1tag:blogger.com,1999:blog-6041394000815849976.post-85999279288655195972013-07-11T10:22:00.001-07:002013-07-11T11:15:53.945-07:00Scared, the other side of tiredMuch to my delight, yesterdays half thought out post primed the pump and it appears that I am able to think in full sentences again. As the clearer thoughts trickled into my brain I realized something, not only am I tired, I am scared. I am scared because I can't figure out how to get untired. I went away to the wine country and came back just as exhausted as when I left. I feel guilty that no amount of rest seems like enough. I told Jared that I was exhausted and needed to be taken care of, nursed back to health and with the most loving and sincere eyes he looked at me, his lack of words said, if only I could. He too is depleted, empty. So we sit together, get takeout and fall into the couch at the end of the day in exhaustion, neither of us have anything to say, there is no tension that fills the space, it's empty. And so I am scared. I don't see the way out right now even though I know it is there, I know we will make it. I know that both Chloe and Claire are doing well by all measures. Claire is healthy by normal standards, which is phenomenal given her genetics. Chloe has imagination and energy that surpasses many of her peers, she lives and loves wholly. That reminds me that even in the exhaustion, we are doing a few things right, but it's not sustainable forever. I wonder, how long can we go like this, how long will this much be required? I know that right now, it is summer, the days are much longer than during the school year. I only have to make it at this insane rate until Sept. 2. I think about all the research that is happening TODAY and how hopeful that looks. If a treatment is coming, I feel like I can run on this little for a few more years, to finish strong. I would gladly finish ragged if there is a medication that Claire could take that made it so she could use her body more. I would love for her to be ready, physically and mentally strong and ready to rehab, which might actually be our reality. On the other hand the treatments that all look so promising could slide sideways, the research could take another 20 years and if that's the case, I don't think I can hang in that long. Either way, I feel better just thinking about that day, the day that there is a treatment. Lucky for me I am at delusional level of tiredness so it's isn't that hard to believe. So I continue to waver between scared, tired and hopeful and I will just tell myself that I'm not bipolar, my life is. I also drink a lot of coffee.<br />
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<br />Colleenhttp://www.blogger.com/profile/03696326541180487827noreply@blogger.com3tag:blogger.com,1999:blog-6041394000815849976.post-45404416722812512752013-07-10T16:51:00.000-07:002013-07-10T16:51:07.500-07:00It's no wonder I'm tiredI know this comes as no surprise, but I am still tired, ragged edge of sanity tired. I dropped my cup of coffee, completely full, for no reason other than I let go tired. All sorts of little things have been slipping through the cracks. I missed a deadline to file some important papers for Claire's insurance. Claire's new shoes bruised her toes and it didn't occur to me that is why she cried when she walked for three days, it was her pt that figured it out. I carried Claire down three flights of stairs to get from our car to our home only to remember that we moved in because of the elevator, that was so perfectly right next to my car. I am just not thinking well right now, I am not feeling either. It is a little scary to feel so numb, maybe this is my attempt at looking over what we've done and seeing why I am so depleted. I can't articulate well the highs and lows, so I will share a few pictures and a video clip of something that is very exciting to be working on.<br />
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We enjoyed the aquarium and ran into a favorite friend. </div>
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I parked with a nice view while Claire slept off some crazy brainstorms.</div>
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Of coarse, when she came back a few days later she was more fabulous than ever. </div>
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We enjoyed a few decadent mornings before Claire worked on her walking and standing. </div>
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We took the girls to Monsters U, which they loved.</div>
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We tried to wear Chloe out on her scooter, to no avail. </div>
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Jared and I got out for 2 hours, the first time in months! </div>
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We met up with Claire's friend from school at the aquarium, first real play date was lots of fun! </div>
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We celebrated the 4th of July with a parade and fireworks. </div>
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One of my oldest friends came up to visit. We headed up to Sonoma for a little child free space. </div>
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Chloe has started to climb trees. </div>
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And Claire has started to work on this...</div>
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There's been a lot of highs and lows, now to figure out how to get rest :-)</div>
Colleenhttp://www.blogger.com/profile/03696326541180487827noreply@blogger.com0tag:blogger.com,1999:blog-6041394000815849976.post-74815665918962826222013-06-18T09:51:00.000-07:002013-06-18T09:51:40.044-07:00My thoughts on awkwardnessI remember what it was like, I can recall not knowing what to do or say when I was faced with something different. It doesn't have to be awkward. You don't have to pity me. Sure it might be obvious that I am beyond exhausted as I struggle to smile in line at the coffee shop. While I sit and spoon feed my 7 year old daughter you might see how different she is and maybe feel bad about that, perhaps you feel a slight twinge of guilt about the small things you take for granted. There is another option, aside from the fanged pity smile you fake as you try not to look. You could smile confidently at me like you do the other moms out with their children. If your kids have a question, let them ask, it is normal to wonder about things that are different and I have a lot of good answers for you. If you feel like you are staring, compliment my daughter on her cool wheel chair or her fancy shoes. Remember that just because our life is obviously difficult, it doesn't mean that we aren't trying to make the most of it.Colleenhttp://www.blogger.com/profile/03696326541180487827noreply@blogger.com0tag:blogger.com,1999:blog-6041394000815849976.post-82391416748817545142013-06-15T22:15:00.002-07:002013-06-15T22:15:18.699-07:00FatherhoodI was thrilled that when I asked Captain Awesome to write a guest post for Father's Day he gladly accepted. He writes often but I rarely get to read his thoughts, so this is pretty special. It's a big task to write something with a vague sense of a theme of father, have an hour and a half to do it and get an overtired 4 year old to sleep at the same time, but he did it, hence why we call him Captain Awesome. So here are his thoughts, I hope that you enjoy them.<br />
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Father: Noun. 1. A man in relation to his natural child or children; 2. an important figure in the origin and early history of something; 3.a man who gives care and protection<br /><br />Fatherhood. It’s one of the most important things I’ll do with the years that I have on this Earth. If I’m honest, it’s the thing I was least prepared for when I became one. In fact, if I’m really being honest, (and I feel I should be because this is Colleen’s blog and that’s what she is) it challenges me on a daily basis to the core of who I am as a person and as a man. Oxford defines a father in three distinct parts. The first part is obvious and easy. Claire and Chloe are my ‘offspring’ and it does provide a physical, tangible connection between them and me. I believe that all too often in today’s culture, that is where it stops. Father’s have become a sort of jester in the family that exists solely for the purpose of being the pseudo-bread-winner and live-in fix-it guy that gives comic relief from their complete ineptness at anything relational. This greatly damages the perception of fathers. This perception keeps the substance of fatherhood at a superficial level, that the first part of the definition refers to.<br /><br />But fatherhood is more than that.<br /><br />The second part of the definition states that we are “an important figure in the origin and early history of something”. Although I have a feeling the editors were referring to something other than our roles as fathers to our children, this can also be applied to the role of fatherhood as aptly as the first part of the definition. What is more important than the origin and early history of another human being? At least once a year I read a book called ‘Strong Fathers, Strong Daughters’ by Meg Meeker. I read it because it scares the hell out of me. The impact that I, Jared English, have on the outcome of the rest of another life is almost impossible to quantify. The gravity of it is so sobering that there are times that I feel that I can’t possibly ever have enough to give. My short time with Claire and Chloe will have a profound impact on almost every facet of the rest of their lives, and that’s worth remembering as I relate to them on a <strike>daily</strike> <strike>hourly</strike> minute-by-minute basis.<br /><br />The last part of the definition is the one I think I struggle with most, especially with Claire.You see, Claire is very special and there is NOTHING I can do to protect her from the thing that ravages her body on a daily basis. As she turns blue from lack of oxygen and passes out only to come-to with a full-blown seizure, I AM POWERLESS. As men it’s true that we do have an inclination to want to fix things, but I can’t fix this. <br /><br />While each part of this definition of father is true, I don’t believe it is complete. These are merely aspects of our role that we tend to get caught-up on. The reality of the situation is that I, along with all fathers, are not called specifically just to be a good influence or focus on care and protection, because we can’t all the time.<br /><br />We are called to love well. Not influence. Not protect. Not fix. LOVE.<br /><br />And loving well is something that I know I can do, broken as I am.<br /><br />My own path in fatherhood has been a gnarly one and challenging beyond what I could have possibly imagined. If we as father’s can love our children well then we will be able to truly be the father’s we are called to be and what our families need us to be.<br />
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Jared I am so proud of you, the girls are lucky to have you and since we are being honest, so am I. We love you.</div>
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<br />Colleenhttp://www.blogger.com/profile/03696326541180487827noreply@blogger.com1tag:blogger.com,1999:blog-6041394000815849976.post-71062443136152166232013-06-12T11:19:00.001-07:002013-06-13T21:12:21.490-07:00Summertime BluesToday is the last day of school, the last day Claire will be in 1st grade. There is a buzz in the air. For a while now I have been hearing people say how glad they are to have the school year over with and how ready everyone is for summer. I am not. I have been dreading this day. It's a pretty horrible feeling, as a stay at home mom, to not be looking forward to summer, particularly when so many view it with such anticipation. I am still tired from the last week, month, summer, year or seven for that matter. The thing is, Claire's needs don't change with summer, it just means that I get to do more of it. I get feed her more, take her to the bathroom more, hold her when she's purple more. I know that with that I also get great quality time with her, I will get more of those beautiful smiles that I get to keep just to myself. I do love our special mom daughter time but you can't do that every day. Claire needs to play like a 7 year old girl plays and the bad news is, I am not a 7 year old girl, I don't really have any idea what they do nor do I really want to try and pretend. I am sure I can fill up a lot of the time with painting nails, combing her hair and reading, we might watch some movies go to a bunch of doctor and therapy appointments. We will eat at Verve and take walks along the cliffs and I know that I won't hate every moment of it, hopefully Claire will enjoy it a little. It's just one of those seasons when our life is more blatantly different, as if you had noticed yet ;-) I won't be sending Claire to camp or listening to her read to herself in her bed. She won't be sleeping in and lounging around because she has to get up and get her seizure meds in so she continues to breathe. I know that this isn't all that summer has in store, our days are often filled with things unexpected and sometimes that works out wonderfully. Take today for example, we are going out to lunch with some of Claire's first grade friends after school, she could have a seizure from excitement or we could have the best time ever and I will cry watching her laugh with her friends. I know that the summer will have ups and down, I'm just a little down today, looking at the enormity of what lays ahead but I am not hell bent on staying down, trying to stay open, going with whatever way life blows us. <br />
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Update: I just wanted to add to this post that lunch went great. It was about as average as our life gets, Claire was bored for a few but also laughed and played with her friends. Chloe was awkward and shy around everyone because they were strangers to her. Much to my surprise and delight, none of us cried. Today also went well. Claire and I had a great time in the sunshine while Chloe was at school. We wrapped up the day with bubbles on the porch before dinner. It was an incredible gift to have two days with nothing traumatic. Maybe summer won't be so bad after all.<br />
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<br />Colleenhttp://www.blogger.com/profile/03696326541180487827noreply@blogger.com2tag:blogger.com,1999:blog-6041394000815849976.post-85801357213911483172013-06-11T10:48:00.000-07:002013-06-11T16:04:59.955-07:00Paddle to Normal IslandI have been feeling better lately. There has been a slight edge taken off the tension that I feel as I go through the days. The shift happened a few weeks ago when we packed our little family into the car at 3:30 in the morning and went on what would prove to be an epic adventure, we were headed to normal island. Jared was going to participate in the Paddle for Sorel and we were going for the party. We were going to be with our tribe, where everyone is like us. The event was starting at a beach that was about 4 and a half hours from our home so we got an early start to the day. With a big jar full of iced coffee and some loud music on my headphones we made great time, it helped that Claire didn't stop breathing (last time we did this I couldn't say that, so it's a big deal, you can read about that <a href="http://colleenenglish.blogspot.com/2011/12/miss-amazing-does-novermber.html" target="_blank">here</a>) and everyone slept the first few hours. The rest of the day is a bit of a blur. Since we got there early we went to our friends house where we met up with our other friends who had a long journey to get there...from England, with twin 3 year olds, it was like Christmas, seeing family that we had longed to be with, I was giddy with excitement. With the boys all ready to paddle we headed to the beach to send them off.<br />
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There was this strange, dramatic sense of awesomenss watching all of the paddlers take off from the beach, they were all so pumped to be doing this for the girls, there was so much love, so much passion, it took my breath away. Once they were out of sight we headed over to the other beach to meet up with the other families and wait for the arrival of all of the paddlers. I sat in the sand with Claire and our new little friend Olive who I was so excited to spend time with as I have fallen in love with her reading her <a href="http://www.olivebeaumontfoundation.co.uk/blog/" target="_blank">blog</a>. Chloe somehow got soaked head to toe in her clothes so she ended up running around in a tshirt which she thought was the fanciest dress ever. After more fun in the sun than could be imagined the party continued to the house of the friends we were staying with. There was so much chaos and crazy but it was so fun and calm, it really was like heaven. Slowly people left and we were down to our family, our lovely host friends and another <a href="http://www.lifelesstypical.com/2013/05/its-big-deal.html" target="_blank">family</a> that we love dearly that was in town for the paddle too. All added, there were 3 four year olds, 3 seven year olds with Rett syndrome and 6 parents who were had questionable amounts of sanity. It sounds like a recipe for disaster but it was magical, the sibling playing, the girls hanging out and the parents unwinding. We slowly got up, hit the pool for a bit and eventually had to head home. It was only 36 hours but it felt like so much more. We crammed more laughing, crying, hugging and chaos into it than most experience in a month. As we headed home that feeling of isolation was gone, we weren't wandering around in crazyland by ourselves, there are so many out there on the journey with us. So when Chloe puked all over me in the middle of the gas station on our way home it really didn't phase me, I just took my shirt off and put a new one on, because that's what you do when you are covered in puke, you change your shirt. Lesson learned, when you are feeling alone, head to normal island, it's out there.<br />
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Colleenhttp://www.blogger.com/profile/03696326541180487827noreply@blogger.com1tag:blogger.com,1999:blog-6041394000815849976.post-81808117272152490332013-06-02T18:16:00.001-07:002013-06-02T18:26:50.431-07:00RegretsI don't remember much from when Claire was a baby. It was a pretty chaotic period in my life. If I strain to think I remember her giggles when she naked crawled lightening fast after a bath. I know that she used her hands, we have pictures of her drinking from a cup on her own. I remember a few things but not much. I know that I was sick and Jared and I were in separate states for a long period during the last few months of her 'typically developing' time and that is what I remember the most. Laying on the couch with a fever, watching her play with her toys. As the story goes, slowly that all changed. I have a lot of regrets about that time, I wish that I had been more present and that I had made choices that spread me less thin but there is no going back. Fast forward to last week. The highs were so high, the lows so low. Claire slipped into a scary cycle of seizures and sadness that left my mind reeling. Was this the new normal? Can she sense something about her body that I can't tell? Is she alright? Will she loose her ability to chew and need a tube? Will she wake up in the morning? After two long days in that world, on Friday morning she woke up and was back to her lovely, wonderful self. I lingered at the drop off for school, I kept talking to her, watching for her to smile appropriately and raise her eyebrows to express her annoyance with me not leaving. Of coarse she did, but I hesitated, it was hard to leave. I worried that I would come back to pick her up and she would be asleep, unable to hold her head up after a bout of seizures. Since then she has continued to be herself and I have tried to soak it in as much as I can. I caught myself taking a ridiculous number of pictures of her today as she smiled that smile that said so clearly that everything was right in the world. She's fast, it's hard to catch with a camera but will knock you off your feet if you are with her. I wanted to get a picture of it so badly because I didn't know when or if I would see it again. I am self aware enough to know that this ins't good thinking, that and the chest pains I had were a sure fire indicator that stress levels were too high. I called a friend who is on the other side, she knows what it is like to not be able to see that smile again. Her sons life was taken too soon from brain cancer. I told her of my fear, how I try to my the most out of every good moment, how I don't want to miss a thing. Her response was perfect, it set me free. The short version of what she explained is that if Claire dies I will be so torn that it won't matter, there's nothing that can be done today that can ease the pain and that I am doing a good job today. It was such a good reminder, today is all that I have. I know that Claire wants to be average more than anything, which might even mean her mom forgetting stuff and missing some details because that is what life is made of, not just the big smiles at the beach. There is no amount of extra hugs or special moments that will change that reality if that day ever comes. The best that I can do is to simply be, happy, sad or indifferent, it isn't time wasted, it's time spent honestly.<br />
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<br />Colleenhttp://www.blogger.com/profile/03696326541180487827noreply@blogger.com1tag:blogger.com,1999:blog-6041394000815849976.post-6934561164337757492013-05-30T14:09:00.002-07:002013-05-30T14:09:25.062-07:00Made a Wish<br />
<a href="http://1.bp.blogspot.com/-W-NY72gXirw/UaeteoGWKNI/AAAAAAAACGs/lnu_EdUE_6I/s1600/IMG_0537.jpg" imageanchor="1" style="clear: left; float: left; margin-bottom: 1em; margin-right: 1em;"><img border="0" height="320" src="http://1.bp.blogspot.com/-W-NY72gXirw/UaeteoGWKNI/AAAAAAAACGs/lnu_EdUE_6I/s320/IMG_0537.jpg" width="240" /></a>Claire had a pretty hard time being 4. Just as her sister started to do all of the things that she had lost, the trial for her eye gaze computer ended and she lost her voice for the 4+ months that it took to get insurance approval. Our doctor suggested it was a good time for a Make A Wish to get Claire through so that is what we did. Claire wished to meet Ariel, her kindred spirit that can't speak and has wobbly legs. You can read about that adventure <a href="http://colleenenglish.blogspot.com/2010/03/disneyland-full-story.html" target="_blank">here</a>. Fast forward a few years, Chloe is super into the princesses and loves to look at the pictures of her sister with them. She has heard us tell people about Claire's wish and the fun she had meeting Ariel. So I shouldn't have been surprised when Chloe announced that she was ready for her Make A Wish trip. I explained that it was only for kids who had to go to the doctors a lot to which she replied, "I go to the doctors a lot." I couldn't argue with that logic. I explained that mommy and daddy would have to pay for her trip so it would take us a while to save up. For months she asked every day if we had saved enough money yet. When we were out and she wanted things she constantly heard that she couldn't have it because we were saving for Disneyland. So I wasn't really shocked to her response when we finally told her it was time to go. "You have enough money! Hooray!" Like most things on the typical side of our life it was all pretty amazing. Chloe anxiously gathered up everything she needed; her Belle dress, her blankie and an Ariel doll. The drive down was easy thanks to the ipad and some Tinker Bell movies.<br />
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We arrived shortly after my parents and headed out to Downtown Disney for a little shopping. Chloe thought she was in heaven. It was obvious we don't get out much as she was star stuck as the shopping center alone. Both the girls were in heaven in the huge Disney store, if I had known that I wouldn't have bothered with admission to the park. </div>
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After shopping we celebrated Chloe's 4th birthday at Goofy's Kitchen, it was so much fun. Chloe wasn't super excited about the 'creepy' characters but she was pumped for the peanut butter and jelly pizza and copious amounts of fresh fruit. </div>
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Somehow Chloe had a hard time falling asleep after all the excitement so we let her sneak out of bed to watch the fireworks with us from the balcony. As great as the fireworks were it was breathtaking to watch her enjoy them, to remark about the colors and shapes and see her jump out of her skin when she saw Tinker Bell fly around the castle. That's the stuff that can't be taken for granted and Jared and I soaked up each minute of it. </div>
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This was one of my favorite moments. It was 8am on Mother's Day and I had two smiling, happy children that were excited for a day of fun. Not going to lie, it was a huge stroke to my ego ;-)</div>
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The first order of business in the wish making process was to go see the fairy godmother in training.</div>
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Then all that was left to do was enjoy the magic and watch her soak it in for the first time. </div>
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It sure helped that Claire was having a blast too. She loved all the fun and extra loving she got from her daddy. </div>
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Pixie Hollow was pretty much a dream come true for Chloe, she was star struck by Tink.</div>
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Claire and I almost went on Splash Mountain but she got so excited she stopped breathing as we got in line, as she recovered Chloe was there being the compassionate little superhuman that she is.</div>
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While Claire slept off the crazy we managed to have fun waiting for the parade.</div>
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Chloe was beyond excited, she named off every character as they danced by us, the anticipation as the princesses got closer was almost more that she could handle. </div>
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After all the fun she was eager to get back to the hotel and so were we, all that was exhausting. </div>
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Day two we did California Adventures with our friends, friends that we had never met before, that's normal right? I met Laurie in New Orleans when I crashed dinner that some of our mutual friends were at. We discovered that our little seemed a lot alike and I have dreamed of getting them together ever since then. So glad we did, it was so much fun and Chloe and Claire have new friends for life. </div>
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While we waited for them to arrive Jared and I took turns going on California Screamin' the fast roller coaster. Yes, at 9 am I made my children wait in the shade while we rode the roller coaster and it was the best decision. It was eerie how relaxing it was to be thrust upside down, a good reminder at how crazy my world is, I have to go upside really fast to come down from the stress of my life, that might be something I work on in the future. <br />
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All of the girls had fun with the princesses at Ariel's Grotto and we enjoyed being inside and having food served. </div>
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Once it cooled down we went for a few rides and had a ton of fun with our new friends. </div>
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That night the girls cuddled up under the magical fireworks on the wall and quickly drifted off to dream land. Mission accomplished, we had made Chloe's wish come true.</div>
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Before we left we managed to get a little swimming in and by swimming I mean jumping. </div>
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We had breakfast with some friends, Chloe made a great cup of tea for Claire and the Mad Hatter.<br />
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Like that it was time to go. So glad we went, it was exhausting but worth it! </div>
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But it was also good to be home.</div>
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<br />Colleenhttp://www.blogger.com/profile/03696326541180487827noreply@blogger.com4tag:blogger.com,1999:blog-6041394000815849976.post-89891615479037776772013-05-24T09:54:00.001-07:002013-05-24T09:54:19.052-07:00Her voice I have been afraid. I have been avoiding something fairly important because I was afraid and this week I was forced to look at it head on. I have known that Claire's brain often becomes overwhelmed when she gets the chance to use her talker, it's a lot physically, mentally and emotionally and often after getting to speak her mind her brain lights up a brainstrom that sends her muscles twitching and takes her breath away. It's such a high price to pay and I have really struggled to know when is it worth the risk but this weekend it all came to a head. Claire screamed, crocodile tears streamed from her face. She wasn't overstimutlated or tired, she was sad and mad and she made it clear it was pretty much our fault. Jared was trying to feed her but she wouldn't open, not even her favorite food would help. It occurred to me that she wanted to talk about it so I asked if she wanted her talker to which I got the 'it's about time you had a good idea' look. As soon as it was up she made it clear, she wanted to talk. She told us how she wanted to smile and suggested 'let's eat dad' We joked about how he didn't taste good and she remarked how she liked being funny. That is when we locked eyes and one of those Nemo and Marlin moments. She looked at me as to say, I can do it mom. I thought about the fear of the storm that was brewing inside her head but couldn't deny her, she wants her voice. I told her I was sorry, sorry for not being better about turning her talker on when we are home. She said sorry to us for her screaming, I was overwhelmed by her charachter, the courage and coordination it took for her to say that melted my heart. I told her that it would change today and she repeated, today. Jared and I talked about the barriers to getting the talker on and realized that when we moved we chose to put the stand to a place that was hard to get to and use. The arm of the couch high and limited her from talking when she sat on it so we decided that the couch had to be replaced. Lucky for me the local furniture store was having a going out of business sale so I was able to find a great deal on a lovely couch that met all of our needs. Last night Jared brought it home and this morning we had her talker ready to go when she got up. What did she say, "love awesome being" I have to admit I love that she's awesome too. It feels like I am doing the scariest thing in the world, giving her greater access to something that could make or break the world but I've heard that often the best things happen when you step into what feels the hardest.<div>
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Colleenhttp://www.blogger.com/profile/03696326541180487827noreply@blogger.com3tag:blogger.com,1999:blog-6041394000815849976.post-61278777437103217502013-05-21T09:42:00.000-07:002013-05-21T11:40:31.535-07:00Why I write<a href="http://2.bp.blogspot.com/-Q_nAJAkXib0/UZu844g0tJI/AAAAAAAACBY/GqSselWdcco/s1600/photo.JPG" imageanchor="1" style="clear: left; float: left; margin-bottom: 1em; margin-right: 1em;"><img border="0" height="150" src="http://2.bp.blogspot.com/-Q_nAJAkXib0/UZu844g0tJI/AAAAAAAACBY/GqSselWdcco/s200/photo.JPG" width="200" /></a>With the whirlwind that has been life I haven't been reading and writing as much as I like to. Yesterday I had to really fight for it, fight for the energy, fight through the fear that I was being too much of a downer and whiny and I am really glad I did. For whatever reason, yesterday's process was so therapeutic, so healing, it was the perfect reminder. As I sat in the coffee shop staring at my screen <br />
another writer saw what I was writing and remarked that the whole world should read it and that I really deserved a much bigger audience. Not going to lie, I really liked hearing that as I am pretty insecure in my writing. Once I posted the blog I got two message from people that I have had the pleasure of meeting but only because we had met in the blogosphere. I was reminded that I wasn't alone in this, that there are many on this path and that through the magic of the Internet we don't have to feel so alone. So thank you, to those who leave messages on the blog or Facebook, for those that message me and to those of you that write and share your stories, thank you. Things get overwhelming and scary more often than not and I was reminded yesterday of the gift that I can share those hurts and fears and be surrounded with good company. I was reminded of the benefit of the process, so we will see, perhaps you will be seeing more from me in the next few weeks, months, I really hope so.Colleenhttp://www.blogger.com/profile/03696326541180487827noreply@blogger.com2tag:blogger.com,1999:blog-6041394000815849976.post-87999210150925688352013-05-20T10:36:00.000-07:002013-05-20T10:36:17.423-07:00Too muchIf I think back far enough I can remember wanting to do nothing more than being a stay at home mom. I dreamed of the stories I would read with my kids, the time we would spend laughing on the floor and how I would make the best lunchbox snacks. Nowhere in the dream did I imagine that I would be so lonely when I was home with my kids. Never did I imagine that afternoons would be filled with therapy appointments instead of trips to the park or the library. It didn't occur to me that I would eventually become so exhausted that I would stop feeling, stop caring and become little more than a mother robot, going through the motions of life with so little meaning. It wasn't the dream, but that is what life has come to. I fight it but on some level, when your afternoons consist of holding your 7 year old on your lap as she passes out after a seizure and your 4 year old turns the oxygen on and insists that she needs it for her seizure there is little choice, it's just too much to feel on this little energy. Honestly, that day I wanted nothing more than to just turn off, completely and for a little while I did and it wasn't good. There was no hope, there was no joy, no relief, just emptiness and now that I am a little further from that I can see that is not what I want for my days. The struggle is, how do I turn on, just a little. I want to see the kind person at the checkout who lets me go ahead when the girls are getting restless. I want to see the love that Jared has for the girls after a long hard day at work. I want to see Chloe's sweet intentions when she climbs up and sits on Claire to give her a hug and a kiss. But I don't want to risk the pain, the heartache of epic porortions that comes with the stuff that fills my days. Right now I am too tired, too exhausted to be able to deal with that. I suppose that's where the tension in my head is coming from right now, trying to find a balance, feeling and seeing a little, trying to find the balance in what is enough.<br />
<br />Colleenhttp://www.blogger.com/profile/03696326541180487827noreply@blogger.com3tag:blogger.com,1999:blog-6041394000815849976.post-50783818085225006072013-05-03T16:21:00.001-07:002013-05-03T16:21:47.203-07:00The Downside RiskYou might not have guessed, but before I was a tree hugging hippie in Santa Cruz I was a yuppie banker in Scottsdale, my life was far from organic. I don't think much about those times as I really do like my life now. However yesterday I was reminded of a concept that I learned from my life long ago and that is the term, downside risk. Here is one definition that I found for it: "<b>Downside risk</b> is the <a href="http://en.wikipedia.org/wiki/Financial_risk" title="Financial risk">financial risk</a>
associated with losses. That is, the risk of difference between the
actual return and the expected return (when the actual return is less),
or the uncertainty of that return.<span style="color: black;"><span style="background-color: rgba(255, 255, 255, 0);">" </span></span><span style="color: black;"><span style="background-color: rgba(255, 255, 255, 0);"><span style="color: black;"><span style="background-color: rgba(255, 255, 255, 0);">I
have to admit that I think about this more than I would like, not with
our retirement accounts or investments but with something far more
valuable, Claire. </span></span>It stands to reason that with therapy you can work toward gaining skill and getting stronger. With Rett Syndrome...not so much. The actual return is often far from that that was expected. Our most recent experience with this was with the power chair. It's a pretty big deal. I had honestly never thought about independent mobility for Claire outside of walking. So when her pt put her in a power chair and she did well with it at the first crack I was blown away. Suddenly there was possibility that I had never even dreamed of. Yesterday, at physical therapy </span></span><span style="color: black;"><span style="background-color: rgba(255, 255, 255, 0);">Claire was enjoying the freedom of rolling herself around with a demo
powerchair for the third time. She was focused, peaceful and so happy.
She had been going backward and in circles. She stopped, her hand subtly
shook as she tried to get her arm to push the joystick forward, her
physical therapist gave me the silent look that said, "look at that,
look how purposeful, that's amazing" then it hit. She froze, rather,
seized. She stopped breathing and slowly all of the muscles in her body
tightened, we held her hands and reassured her that she was going to be
alright, but it felt like a lie. After the fireworks I transferred her
to the car and as she fell off to sleep she smiled. It was so obvious
that she really wanted to be able to go forward, she was putting the
pieces together, purposeful hand movement was but a moment away. Part of me never wanted to try it again, not if THAT is what would happen. It left me thinking, which is the greater risk. On one hand to learn things she has to seize and with that we risk aspirating and a number of other complications, it's playing with fire. If we don't push her, we risk depression, anxiety and that she will slowly slip farther away from us. Neither really seems like a good option. Then I step back, take a breath and realize that those are just the downside risks. While they are very much a part of reality I have to remember to look at the potential too. Claire has already made the world around her a better place. People who get to spend time with her often share stories of how she impacted them, changed their thinking or encouraged and inspired them in some way. Claire has already accomplished things that I was told she never would. I am still struggling to figure out how, but I have got to keep looking at that side of the picture. I have to keep choosing to look for the opportunity and remembering that with higher risk comes higher rewards. I'd like to think that someday that reward would be her telling me, "Thank you for not giving up on me even when it was hard." Of coarse at that time she won't be needing me for much more than help with her injections since the treatment that was discovered for Rett Syndrome was so wildly successful. I think I will choose to end my story there.</span></span>Colleenhttp://www.blogger.com/profile/03696326541180487827noreply@blogger.com0tag:blogger.com,1999:blog-6041394000815849976.post-20956641709880243962013-04-23T18:48:00.002-07:002013-04-23T18:48:29.572-07:00LatelyThe last few weeks have been exhausting, I am absolutely spent. It's been hard to realize that things are so much harder than I ever imagined. It is obvious that I might loose it when Claire has multiple seizures in one day after just learning that a girl the same age with the same diagnosis had just died from that very thing. In the past I have learned to give myself grace on those days as grief seems like an obvious response. Lately, I was caught of guard by the good days, letting myself enjoy her when she is being herself has been much more difficult. Maybe it is the fear that at any moment things are about to turn or perhaps I don't want to realize just how great she is in an effort to protect myself when someday she is gone. Either way I feel terrible, not enjoying those precious moments when she is able to be herself, I never expected to have to deal with that. Similarly, I had prepared myself for when Chloe acts out because her sister gets more attention, I was ready for that. I was not ready for when she told me that Claire didn't walk just like the man that Jesus healed and asked how we could see him so that Claire could walk too. I knew that the stress of crisis could crush a marriage and we worked to protect ourselves from that. I didn't know that once things got easier we would be left so tired and empty that things would fall apart. I am left shaking my head, it is hard to tell what is real and what is just perceived. Amongst it all I have figured one thing out, I like to ferment food and Claire loves to eat it. Maybe if variety is the spice of life, stress is the good bacteria that grows when you pound the hell out of the nice healthy vegetables, because that's what it's felt like.<br />
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<br />Colleenhttp://www.blogger.com/profile/03696326541180487827noreply@blogger.com0tag:blogger.com,1999:blog-6041394000815849976.post-68746412772549497592013-04-01T15:57:00.001-07:002013-04-01T15:57:28.961-07:00Dizzy<div class="separator" style="clear: both; text-align: center;">
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I'm a little less mad today than when I last wrote, now I'm just exhausted. We had a holiday weekend with nothing as exciting as seizures and vomiting at night, which I expected, so that was nice. I got some time with Claire, she was
feeling good, her body allowed her to come out and be herself and I soaked up every minute of it. Yet still, I am exhausted, absolutely out of energy and it is the first day of spring break. On some level, it feels like I fell off the roller coaster of highs and lows. I didn't try to get off, I just couldn't hold on any more, so I let go, fell off and got bruised up in the process. Here I sit on the side, my body aches, my head is spinning and with the little energy I have, I am watching the roller coaster of life, some friends slowly going up the big climb, others in the free fall waiting for the swing up before a crash into the ground and all I can think about is how to get back on. I know I need the rest. I know I can't stay on a ride like that forever. I know that there is lots of goodness to be had with my feet on the ground or on the slow spin of a merry-go-round. I know that sooner or later it will be my turn again and I will be back into the troughs of the chaos of the ups and downs at warp speed. I know that all I have right now is today, so I am working on it. Rather, working on enjoying it, even if I am a dizzy.Colleenhttp://www.blogger.com/profile/03696326541180487827noreply@blogger.com2tag:blogger.com,1999:blog-6041394000815849976.post-45840118830774037932013-03-26T22:58:00.000-07:002013-03-26T23:26:35.273-07:00Awesomeness and expletives<div class="separator" style="clear: both; text-align: center;">
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I've been thinking a lot lately about the contrast between light and dark. I see it in the comedy and tragedy masks that hang on the wall. I see how the sun lights up a tree that was once in a shadow only to reveal amazing detail and life. Darkness and light need each other, they give each other context. Much like joy and pain work in some sort of bizarre harmony to create moments that inspire and are full of awe, like how compassionate Chloe is as she holds the oxygen mask on her sisters face and gently wipes her hair away from her eyes. I tell myself that it is those moments that life is at it's purest and have been trying to convince myself that those are moments of beauty, but I can't. I am angry, so mad that all I want to do is swear. Perhaps somebody walking by watching me just swear out into space would think that I have Tourette's, oh the irony. Can I back up and tell you why I am so over the top filled with rage? Over the course of the previous week Claire had made some very big gains in her physical therapy. It was in that excitement that I realized that I had in fact given up hope that she would walk on her own one day and while the progress was promising, I doubted. On top of that, Saturday night, while I was on duty, Claire puked all over herself and I didn't hear it and run to her aide. Then Sunday morning she had a huge seizure and there was nothing that I could do other than hold her while she lay catatonic. All of it worked together to throw me into a spiraling depression on Monday. By the end of the day I knew that I had to fight it, that I couldn't give in, that things would ease. So I told the girls we could have a dance party. My heart filled with joy as I watched Chloe twirl Claire around the room, both of them smiling and giggling. I was back, I had fight, Claire's smile reminded me of the thousand reasons why we don't give up. We all sat together to watch the video and that's when it happened, again. Before I could ask for help Chloe ran for the oxygen tank, Claire turned a deep shade of purple and my heart plunged. I grieved the rest of the day and hoped that somehow, Tuesday would be better and sure enough, it was. I spent time in the sunshine, took care of some business and picked up a happy and very regulated Claire who went on to do more amazing things at physical therapy. However, before we were two minutes out of the parking lot, the brain storms hit again, I flew into the gas station and started to help her breathe once more and as I type this, she is still laying still, recovering. There are so many things to be mad about it is hard to pick what I hate the most, the part that she has Rett Syndrome, the part that we are still working on walking or the part that these blasted brainstorms are something she needs. I've learned enough to know that this is how she learns, how she grows. I know in my head that she is making new connections that will serve her well, I know that this is a sign that she is growing and getting stronger both mentally and physically and who wouldn't want that for there kid? Maybe me? I know I don't have the choice, but I wonder if it is worth it. If learning new things means playing with fire in the form of brianstorms that shake her and rob her of the ability to breathe, is it worth it? I don't know and it doesn't matter much what I think, Claire wants it. She wants to learn, she longs to walk on her own, she loves to learn in school and she knows the price that is paid for fun and learning. The reality is that this is our life, Claire will continue to surprise us with her success and scare us with her vulnerability often in the same moments. Hopefully I won't be this angry through it all, I am sure I will cycle through the other stages of grief with some sort of regularity. If you happen to bump into me somewhere and ask how I am doing, don't be surprised when my answer is "Fucking awesome" I'm not trying to be a jerk, it's just the only thing I can come up with to describe my truly wonderful and screwed-up-beyond-belief life.<br />
<br />Colleenhttp://www.blogger.com/profile/03696326541180487827noreply@blogger.com4tag:blogger.com,1999:blog-6041394000815849976.post-33184920672616668292013-03-04T12:14:00.002-08:002013-03-08T16:42:43.446-08:00The Power of Friends<div class="separator" style="clear: both; text-align: center;">
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For a while I tried to avoid contact with little girls Claire's age at all cost, it was just too painful. As time went on it was clear that Claire wanted nothing more than to be around that very demographic. It was always awkaward. All of the parents over on the side talking, me the only adult in the mix of small girls, trying not to cry as I struggled to help Claire to play with her peers. Over time we attempted a few birthday parties that she was invited to. The only party we attended last year resulted in Claire silently sobbing as we left, it was then that I realized that she was more of a classroom pet than a peer. This year seems different. I get positive reports from her aide about the fun she has with her friends. We attempted one birthday party and the kids did say hi to Claire but I didn't know how to involve her. She kindly faked going to sleep and we left early, it felt like we were going in the right direction. A few days later Claire got yet another invitation to a birthday party and from what I could gather, this was one of the girls that Claire enjoyed the most. After our <a href="http://colleenenglish.blogspot.com/2013/03/what-im-not-giving-up.html">amazing time at the beach</a> and our run up the stairs we went to the store to pick out a gift. Claire was so excited as we settled on some nail polish and lip gloss colors that she briefly stopped breathing and stiffened, an unfortunate side effect of joy. We quickly left and I didn't mention the party any more for fear of hyping it up too much. Saturday was fairly calm until Claire finally got all of the excitement out in the form of a fairly gnarly, dark purple skin sorta seizure. Jared and I were nervous as she got up on Sunday, she looked alright, we so badly wanted her to get to go to her friend's party. We took the morning easy, had lunch, a nap, then a bath to get ready and just as we were about to leave she puked up everything that she had eaten that day. My heart sank. It is hard to tell what it just nerves and what is legit sickness on occasions like this. She looked a little out of it, we debated what to do. We settled that we would drive down to the party and worst case keep driving and park by the beach if she wasn't feeling well. Am I ever glad that we tried! Not only was Claire raring to go by the time we got there, but the other kids were so happy to have her there. Before I knew what was going on (my name is Colleen and I have social anxiety) the birthday girl had picked a cat out for Claire and another friend had her hands up in a field of two to help Claire select colors. Claire was in her element, so comfortable and happy, it was pure joy to see. After the painting was done the kids went into a little hideout to watch a movie. There was a small hole in the wall, Claire couldn't see the screen from her chair. Just as I realized that I needed to prepare to fight back the tears one of the friends climbed out and asked if I needed help getting Claire through the hole. So with the help of two 6 year olds I got Claire sitting against the wall and she gave me "the look", the one that said I was no longer needed. <a href="http://1.bp.blogspot.com/-4r__un89Hfw/UTTCxdnZHuI/AAAAAAAABaE/xsqq5SEVGBM/s1600/IMG_1730.jpg" imageanchor="1" style="clear: right; float: right; margin-bottom: 1em; margin-left: 1em;"><img border="0" src="http://1.bp.blogspot.com/-4r__un89Hfw/UTTCxdnZHuI/AAAAAAAABaE/xsqq5SEVGBM/s320/IMG_1730.jpg" height="320" width="240" /></a>Just as I thought about actually walking away because she seemed fine her friend piped up, "we've got her" and so I walked away and chatted with the other mothers. This changed everything, EVERTHNG! No longer did I have to spite the little girls for being so cute and using their hands, these girls used theirs to help their friend. No longer did I have to resent the other moms for not realizing what they had, these people were really nice and lets face it, they are raising amazing little girls who are kind and compassionate on top of being fun and all the other stuff that comes with little girls. Eventually Claire got wheeled by one friend to the place of honor, sitting next to the birthday girl for cake time and when that was over one of the girls asked Claire if she wanted to go play with the kids, waited for her clear response of yes and then pushed her over to the group on her own, it was AMAZING! It was everything that I had dreamed of for Claire before I knew that she would be speechless in a wheelchair at the age of 7. It was normal life, it IS normal life. Somebody pinch me, I have a daughter who is 7, has a fantastic sense of humor and adventure and friends to play with. This sense of normalcy is so far from that sense of isolation in those first few months after our diagnosis. We focused on trying to preserve hand use and developing her strength to walk so much that I lost sight of the outside world. Somehow, in the midst of all the work, people, truly amazing people have come alongside us and brought us back. It hasn't cured rett syndrome but it sure has made it seem like a lot less of a problem.Colleenhttp://www.blogger.com/profile/03696326541180487827noreply@blogger.com2tag:blogger.com,1999:blog-6041394000815849976.post-25506212358785430692013-03-03T17:23:00.002-08:002013-03-03T17:23:27.489-08:00What I'm Not Giving Up<br />
There are a million cliches out there; what doesn't kill you makes you stronger, it's always darkest before the dawn and so on. I hate those kind of sayings. I don't think they do the process of riding the roller coaster of life justice. Feb. started out rough, really rough. I don't think I have ever been so close to the reality that Claire might be leaving us sooner than later. It was horrible. Even after the seizures and vomiting subsided a bit she wasn't back. There was no smile, no sound and the look in her eyes was more distant than piercing. We went through the days just faking it and trying to do what we could. By Valentines Day she was better but I was fearful. Holidays, birthdays, anything special with extra excitement seems to bring extra brain activity and the last time we rode in an ambulance it was on Valentines Day. Somehow, in the spirit of you never get what you expect, Claire had a great day. I picked up my smiling, bright eyed girl from school and was relieved when she continued to shine at physical therapy. Since we had time to kill before we had to pick Chloe up from school Claire and I headed down to our favorite little stretch of sand to take in some waves. There is something about the beach that transcends language and abilities and Claire comes to life there. It was magical, like it always is. Eventually we had to go and that involved me carrying her up these stairs.<br />
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As we reached the top a couple remarked to me that I wouldn't be able to carry her all that way too much longer. Perhaps it wasn't the most sensitive remark that they could have made but in some weird way it was exactly what I needed to hear. In the process of all of the crazy I was giving into to my sugar addiction too much, I was tired and not making good choices with what I ate and did to take care of myself. As I struggled to get Claire into her chair she glowed, her smile and eyes told me over and over how much she loved our time in the sand. In that moment, at the top of the stairs I vowed to myself that I would do whatever it takes to be able to continue this activity for as long as possible. I can get stronger, eat better and Lord willing, I believe that Claire will get stronger and contribute to the process too. Fast forward two weeks. Claire had been doing well and it freed me up to focus. I've been eating a plant based diet with no refined sugar and I feel amazing! With a clearer head I relate to others better, I remember more details and have less frustration, it is amazing. Still, eating well and stretching doesn't take all the pain out of life. I was a little down as we had to visit the neurologist to discuss upping the seizure meds. When I picked Claire up from school later that day it was 77 degrees and we had a few hours before Chloe needed to be picked up. We brainstormed but couldn't think of anything better to do than go down to our favorite beach and get our fill of sun and sand, but this time it was different. When the time came to leave, Claire did an amazing job clearing the first 13 stairs on her own. I was so pumped and proud of her that once she fatigued I picked her up and ran up the rest of the way and it felt easy! It was such a good reminder of why I need to take care of myself. All I needed was somebody to tell me that I couldn't to be reminded that I am a fighter and I will be fighting for life, much like Claire does every day.<br />
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<br />Colleenhttp://www.blogger.com/profile/03696326541180487827noreply@blogger.com3tag:blogger.com,1999:blog-6041394000815849976.post-60871847647653484842013-02-07T15:31:00.000-08:002013-02-07T17:21:02.868-08:00The Cure that we DO haveIt's been a long few days. Claire has been up and down and up and down. The days have been filled with seizures. Chloe is getting good at bringing the oxygen to me when Claire needs it, too good at it. This morning, Claire was on the couch as Jared held the mask over her face, Chloe pushed her way through us (we try to not let her see it, even though it bothers her less than it does us) with what she claimed Claire needed. As she draped her beloved blankie over Claire she told us that it would make her better. The truth is, it does. Things like that are what we do have to cope with Rett Syndrome. It was a reminder to me that while I can't take away the seizures or get Claire to talk there is so much that can be done. Today I am preparing to head up to Oakland tomorrow for Katie's Clinic. I believe that treatment in the form of some medication is in our future. I want all of the children affected by it to be ready for bodies that work better, not behind in school because nobody believed in them. The cure that we have today is to live and to live well. For Claire that includes a school that includes her with her peers and teaches her all the stuff that kids her age learn. It also includes time at the beach with friends, indoor skateboarding and our new favorite, wheelchair ballroom dancing. So for now, we press on, working to do what we can because I truly believe that some day soon, there will be a help for her body and you better believe we will be ready for it.<br />
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<br />Colleenhttp://www.blogger.com/profile/03696326541180487827noreply@blogger.com3tag:blogger.com,1999:blog-6041394000815849976.post-3692266646326050142013-02-05T17:10:00.001-08:002013-02-05T18:36:47.781-08:00Sunshine and ambulancesLast Friday I woke up feeling amazing. The house was clean, I felt great, Claire had a banner week and Chloe was happy and compliant. After taking the girls to school I enjoyed coffee, met with a friend and sat in the warm sunshine on the beach. I was on my way to pick Chloe up when I got "the" call. One of the calls that you would hope to not get, Claire was choking and the school had to call 911. The responders were already there and I had to convince them to wait for me to get there before they transported her to the hospital. It is a strange conversation to have, a medic, trained with a protocol, not understanding what is and is not an emergency. You see, they were called for the choking, as they arrived on scene Claire had a seizure. A small one by our standards, nothing exciting. They were ready to administer rescue meds and whisk her off to the ER. Thankfully, Claire has an aide that risked it all to correct the medics, in front of the principal and everyone else. She knew Claire's baseline, that she was alright and how a trip to the ER could be unsettling to her. She got them on the phone with me and I got to have one of the most odd conversations. The medic must have thought I was crazy after he heard the relief in my voice when he told me that she had one short seizure. I had to explain that the doctors at the hospital they were going to go to wouldn't be too helpful and that if she was alright, it would be better for me to take her to the hospital we typically go to. They agreed to wait for me at the school. By the time I got there Claire was coming coming back to her smiley self, the medics were happy to let me take her AMA and commended me for being such a great advocate. I hugged her aid and thanked her for saving Claire's life, had she not done the Heimlich I don't know what would have happened. It was surreal to see how much the people at the school love Claire, they were emotionally exhausted. As we said goodbye, there were a lot of hugs and no dry eyes. I thought about the last time that 911 was called for Claire, I dialed it from her school on Valentine's Day two years ago. <a href="http://colleenenglish.blogspot.com/2011/02/my-valentines-heartattack.html">I thought that was crazy</a>. When I look back, I can see that slowly our normal has been getting crazier and crazier, seizures, dystonia, a limp purple body have become common. Honestly, I still don't know what to do with that, other than sitting on a beach and soaking in the sun on the good days and smashing something with my hammer on the bad ones. What comforts me is that by what I can only assume is miracles and grace, the days are still good, just like they were two years ago.<br />
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So here is the end of this story, we got home, rested, watched a movie with dinner and the girls went to sleep. From 9pm-2:30am Claire was tortured by seizures and vomiting, before eventually falling into a deep restful sleep. Saturday we got her on antibiotics, if she didn't aspirate when she choked she did that night. Jared and I stumbled through the motions of the weekend with the help of coffee. By Sunday night Claire was back to herself, Monday she had a fantastic day at school and we finished it off with an amazing horse pt session. So we are back to normal life, enjoying the days, but, Claire still has Rett Syndrome. <br />
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<br />Colleenhttp://www.blogger.com/profile/03696326541180487827noreply@blogger.com1tag:blogger.com,1999:blog-6041394000815849976.post-24038854111105565592013-01-28T11:29:00.002-08:002013-01-30T16:16:45.664-08:00My thoughts on awesomenss <div class="separator" style="clear: both; text-align: center;">
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I am just going to go out there and say it now, while I am in a good space and believe it. I am awesome. Fact of the matter is, so are you. I don't know why, but it just feels so wrong to say that. Why? Who doesn't want to be awesome? Life is amazing, isn't it? Regardless of where you are and what your circumstances are, life is remarkable, beautiful, ugly, messy, rewarding and we were designed for it. I don't know why it is in the forefront of my mind right now. Perhaps it is because I have had a few different conversations with friends who are all incredible and struggle to accept that they are good and the world is better because they are in it, the way they are right now. I am not saying I am perfect or even working on being perfect because honestly I quit trying a while ago. Today I feel strong enough to know what I have to give and I am not going to try to do much beyond that. I accept that there are things that I don't have the energy to change. At the same time there are things that I can do and right now I am enjoying that. It is good, really good to be able to have a clear enough head to know that. I am moving slow enough to remember it. Being present in the moment and enjoying what I can so that I have a little bit more for the moments that are harder to get through. I wish that we weren't all inundated with all the messages about what we should be doing, eating better, parenting better, being more resourceful or whatever it is. I wish we lived in a world where we all go around commending each other for what we are doing well and supporting each other when things aren't going as smoothly. Honestly, there is a lot of that were I live here in hippieville. People are very excepting and encouraging, I think it's because fewer people have cable and magazine subscriptions. It is oddly uncomfortable to be around people who are so alright with themselves after a lifetime of trying to be smarter, prettier or more successful. I am starting to relax into it and will admit that it most likely seems strange to everyone else. But I don't care because I am awesome and so are you. Colleenhttp://www.blogger.com/profile/03696326541180487827noreply@blogger.com0