Kid Quest Needs Help

There are so many aspects of our life with Rett syndrome that I hate and honestly begging for money is one of them. Yet I get so many opportunities. I will get my ranting part out of the way first, then move to the begging. On a personal note, the begging comes so hard because of the relationship that I have had with the church (meaning local people) as a result of us becoming a family with disabilities. Prior to being part of this world I never new it existed, it was neatly hidden away, somewhere else, out of sight out of mind. Truly, that is a VERY SAD statement. I know what the thinking of the people I am frustrated with is like, I at a time, felt much the same way. However, it is flawed. So to anyone reading this blog who is not a member of the disabled community, let me clue you in. As Claire's disability evolved, her needs became greater than what we could handle as a family, without support we could not keep her in our home, yes, Rett syndrome is THAT hard. As we realized this there were plenty of well intentioned people that just didn't know what to do, it was one of the most painful and awkward parts of that regression period. I never thought that I would depend on public support, but we do and we have never been so happy to pay taxes. I wish it wasn't so, that the church could give us the support that we need, but sadly the world has come to a place where that is just not how it works. So, in the void of a community that we expected to be filled by the church, we found Kid Quest. It is a house full of wonderful loving people who just hang out and have fun, which is pretty much the thing that Claire needs more than anything else. She goes on Thursday nights so that I can get a break from giving her dinner once a week. They have theater day and put on play and all sorts of wonderful shannanigns. It was through her time at Kid Quest that I learned Claire liked the Beatles, who knew? During the summer they will go to the boardwalk or bowling. it is a place that I can drop Claire off without worry. I know that they are 110% capable of meeting her needs and keeping her safe. She has gained so much confidence having a place like this to go and hang out at. In rettland we discuss the rich environment and getting the wires to fire together, certainly, Kid Quest does this so much better than most of the therapy that we go to. So you can imagine the sick feeling in my stomach as I read the email that there was a $75,000 shortfall and unless the center gets some money fast, it would be closing it's doors at the end of February. That isn't much, it really isn't. It is more than I could write a check for, so here I am begging again. Please, if you would like to help the families of the Santa Cruz area or just Claire, consider making a donation. You can visit this link, then click on the fundraising tab on the left or you can mail a check to 704 North Plymouth Street Santa Cruz, CA 95060 checks made payable to Balance 4 Kids as that is the 501c3 that runs the program. Thank you very much for your support!

Silent Angel...Not So Much!

I am sure that most of my rett friend readers have heard the term "silent angel" in reference to the girls that have been diagnosed with Rett syndrome. I imagine the term references that the girls don't use words spoken with their mouths to communicate. However, Claire is far from silent. First of all she has a voice through her computer and secondly, there is nothing quiet about Claire. Weather it is her laughing or screaming or maybe grinding her teeth, certainly none of these things make me think of silent. On Friday Claire's computer had an error that required me to call tech support. Of coarse Miss Amazing remembered roughly 30 seconds after they switched their phones off for the weekend, drat! With that as the stage, Friday afternoon and evening were pretty painful. Claire wanted to talk and she made it abundantly clear she was not happy. It was an emotional 5 year old, why are you doing this to me cry/scream that slowly ripped my heart out as it went on. We were aggressive on keeping the fun levels up over the weekend and that helped take the edge off her missing voice. Monday passed, it was long, but aren't they all? Again, I didn't call tech support in time but at least Claire's allergies were bad so between a long nap and being out of it at dinner she hardly noticed. Tuesday was my day! I got on the phone and the great tech support at PRC walked me through resetting it to factory settings, problem solved! Too bad I hadn't backed up the device since September, drat! Oh well, what's done was done, I was having a good day and wasn't going to let that set me back. I even took the time to help Claire walk to the dinner table and she did so well! Too bad Chloe tipped too far back in her chair and went crashing down with a loud thud to her head. Buckle Claire, attend to Chloe, situation back under control and tada, Claire's talker is working! Right away Claire started saying all sorts of things. Typically when she says something, she pauses and looks for a response from her audience. But she wasn't looking away at all, it was a run on, she looked stuck. I gently turned her cheek toward me and told her that it was alright to take a break from her talker, that she could just look at me and we could chat. Immediately tears welled up, her glasses steamed up and the whaling began. Chloe looked at me and said, "Claire's mad Claire's sad" what a perceptive little girl. It was an hour of the high pitched mad as hell business. She never ate her dinner and got into her pj's screaming. There is no doubt in my mind that she is a sweet little girl and that my life is better with her. She is strong, smart, funny, caring, loving and so many wonderful things. Silent, not so much.

Brene Brown: The power of vulnerability | Video on TED.com

Brene Brown: The power of vulnerability | Video on TED.com


This is a really great 20 minute video from Ted. I so appreciate all of you that are on this journey with me, those close and far away. The connection that we share online really truly helps as I continue on this path that Rett Syndrome has led me down.

The Rett Clinic, not what I expected

Last Friday we made the brave journey all the way to Oakland to Katie's Clinic for Rett Syndrome. So maybe it wasn't that harrowing of a drive, but I really don't like roads with more than two lanes and this trip involved lots of freeways. For this journey I was blessed to have Kat come with us. I love Kat for a lot of reasons, I might at some point just blog about that, but for now, here is a short list. 1. She accidentally taught Chloe to say 'dude' just by modeling it. 2. She wears jeans a t-shirt and either vans or cons, just like me. 3. If she were to be a character from a book it would be Amelia Bedelia 4. She has no other affiliation with the special needs world other than Claire, but she loves her and treats her like the normal little girl she is. 5. It is impossible not to have fun when she is around. And yes, that is the short list. Anyway, we got there and I got right to embarrassing myself. While Claire and Katie (as in Katie's clinic, she is such a cool girl!) hung out I went up to the desk to ask if I needed to fill out forms, sign something and offer insurance cards. Turns out the lady sitting there was the neurologist, not the receptionist, oopsie! I honestly don't remember much of what was said during our appointment with her, she started with how old were you when you had Claire and my brain went numb from there on. I do know that we are looking into booking ourselves a lovely suite at LPCH for a long EEG and hope to get the activity on the monitor before any decisions are made. As soon as we were done with the neurologist we split and went to Fenton's to meet up with Erica and Nolan. Really and truly, this was the absolute highlight of the day. No, it wasn't the highlight because the ice cream was so good, although, it was very good. It was a simple text and a small thing that made it. I have known that Erica is a great friend, then as we planned this a week before she offered to get there early and save a table so we wouldn't have to wait. As we drove there, yes, again I was running late, she texted me and asked if she could order food for the girls. I know it sounds really cheesy, but it was then that I thought to myself just how great my life is. I have the BEST friends. We got there and again, I was humbled by a small thing, Kat sat between the girls. Restaurant etiquette states that the point man be strategically seated between the two children and the wing man on the end. With Kat running the show, I was not only able to chat with Erica, I even got to eat while my food was hot, amazing! Chloe and Nolan did there typical super cute kid stuff, Claire ate an entire bowl of ice cream and we shared a lot of laughs, it was great!!! We went back late, but with such such a lightness in my heart, it was great! The second half of the appointments was about 4 hours. We saw a lot of people who all seemed to share the same opinion, Claire is doing great! I guess my work with her is not done for now, rather keep it up, but we just have to maintain. While that really is a best case scenario, it feels like I am being asked to drive across the country at the exact same speed with no cruise control to keep the bomb from going off. Keep it up, for longer, um, I think I can, I think I can... but with friends like this, it really isn't a question, I know that they will be with me for the drive and if I swerve off the road or the bomb blows up, they will be there with me through that too. All that to say, the doctors, not all that exciting, but I have some really great friends and I am very grateful for.

Silly Monkey

I know that I talk a lot more about Claire on this blog than I do about Chloe, mainly because if it was just fun little Chloe I wouldn't need a blog to sort through all the mess of my head, she is easy! I never understood why people would want to have such large families after having Claire because just the one was so exhausting. But now with the perspective that Chloe offers, I get it. Chloe gives, she gives joy, she gives life, she offers freely. While it might just be my incredibly biased opinion, I think that Chloe is very special. For starters, she is smart! Yes, I am a proud momma. At first I tried not to think about it much. I didn't look at developmentally where she was supposed to be because I have found those charts to just be depressing. In the last few weeks her language has exploded and several people have told me how advanced she is, I have to say this is something new to me and I like it. Tonight, as Claire surprised us be standing completely on her own for 15 seconds Chloe exclaimed "AMAZING!", it was so sweet. Not only is she sweet, she is so compassionate and caring. When Claire gets upset Chloe will look at me and say "Claire is sad." then walk up to Claire who is normally bright red from screaming and crying and will kiss her forehead and tells her that she loves her, as I think to myself, AMAZING! When we walk away from people she says, "bye, take care" and also greets people with a "s'up dude!" and some sort of silly expression. Not only is she smart and a sweet spirit, Chloe is a girly girl! How has this happened to me twice? I am not sure, but Chloe looks to outpace Claire with her love for princesses, tutus, jewelry and makeup. She is our silly monkey, such a special little girl that I am so grateful for. I just love getting to spend the days with her and all that she is teaching me about laughter, fun and general silliness.

Enough?

How much is enough? How many hours of PT and OT? How much respit? How much equipment? When we got the diagnosis this in one of the things that was right in the front of my mind. I wanted to go as long as we could before having to advocate and fight. At that time, the idea of a severely disabled child seemed so far off, and in some ways it still feels that way, in others it doesn't. Claire is doing very well right now. By very well I mean that she wakes up alive in the morning and is present throughout the day. Sure there is a lot of screaming and crying and she isn't doing any brand new things that are mind blowing (like standing up and walking away) but she is doing small things that I had forgotten to hope for. With that said, it doesn't seem all that broken. But then we talk to other families, learn what is working for them and a mean little voice creeps into my head, maybe we should be doing that too? Why is it that being content with this is so hard?!?!?!? It is certainly guilt and fear driven, what if there is something that I could have done more of that would have made a difference? Well, I guess we will just never know. I am mentally psyching myself up, today we go over the hill and through the city to Children's Hospital Oakland, to Katie's Clinic for Rett Syndrome. I had hoped to not go this year, but with the creepy seizure or neurological craziness that is going on, I called and they were able to get us in. These people are the experts, they see lots of girls and know all the stuff to recommend. They know what kind of equipment might help, what type of therapy to do and other stuff that I wouldn't know. We normally get a report a few weeks later with a short list of things to do. But honestly, I don't want a list, I would like to be done please. I would like to hear that I have done all that is humanly possible and that I can just enjoy Claire the way she is and not worry about the future. Is that too much to ask? I know that won't happen, at the minimum I see a long EEG in our future, maybe some seizure medication. Perhaps somethings for scoliosis and advice on getting BMI up. So here goes, off I go to walk that fine line, advocating and getting what Claire needs, but not getting greedy and trying to get things for her just because we can, enjoying her for all the joy that she is while grieving that we are going to a hospital because her body doesn't work right, and of coarse getting some ice cream along the way.

Play time?!?!

It isn't much of a secret, I am much better at working than I am playing and honestly, it makes me a little sad sometimes. I know how to slow down, relax, soak things in, but play or have fun, not so much. I really gave it a good try when Claire was born. I tried so hard to not be the sum of the tasks involved in taking care of a baby. For a while, I was really doing well. Then life got a little crazy. But I was convinced to get back on the wagon and keep trying to have fun when we moved to Santa Cruz. If there was ever a place to blow life off and play, it's Santa Cruz. We didn't know it at the time, but Claire's regression had just started as we unpacked the boxes and tried to get to our new, and fulfilled groove in Santa Cruz. The best that I can explain my relationship to Rett syndrome is to that of an alcoholic working in a bar because somebody is holding a gun to their head. I've always loved to work. I had a full time job as a salaried banker lined up 4 weeks before I graduated from high school. I was blessed with a situation where my parents begged me to just go to college and enjoy being young. But no, I chose to work instead of have fun. So with that as the context, I had a very playfully productive week last week!!!! I am so proud of myself that I just had to share it with you all. Please note that I wish all of you would come join us for some fun, as I am figuring out, it is something that is much needed if you are going to survive the rett roller coaster. So here is the week in pics, Monday we went for a walk and it was so nice we decided to go for a walk again on Tuesday, these are pictures from two different days if you can imagine.
Wednesday Claire had ABA at home, but her screaming and having other people in our house didn't stop Chloe and I from having our first (and I doubt last) princess dress up fashion show.I don't have a picture for Thursday, we went to Music Together and it was really depressing, despite Chloe being undeniably adorable. I am sure it will be a blog in the future, maybe once class starts and I get through one without crying, but for the record, I attempted to have fun. Friday was a surefire fun day! We started at the beach with some friends, then went to horse therapy, which I know is technically work, but our insurance pays for it and we pay the rest privately, so it seems more like a fun thing than a state granted therapy that you have to meet goals for. Captain Awesome joined us, he is always good for a big dose of fun!

Drum roll.... on Saturday I went for a message, not because my back was so bad that I couldn't move. More because I wanted to, I knew it would help to keep me from that place where I get stuck in bed for days on end and I could, so I did. Because I am a crazy person, I requested to listen to Mumford and Sons which was really, different, but yes, fun! Now I am leaving, just before dinner, to go have a cappuccino at Verve and play on our new iPad and try to figure out what it does. Huge thanks to Captain Awesome for making each of these fun days possible and for helping me remember how to laugh.

Of Course I Can

A few weeks ago we took a quick trip down to the Monterey Bay Aquarium (MBA). We decided to go late in the afternoon instead of first thing. With this change in schedule we were able to see the otter feeding, something that in my delusional mind, would be fun for the girls. Claire and I went up a few minutes early to get a good spot to see the show. As people crowded around, she got overwhelmed and just as the feeding started, totally lost it, so we retreated. As soon as she had some space she was fine, so we opted to watch on the video screen below. The trainer was telling the crowd how the feeding wasn't just a play time, rather it was also a period of a rich environment that the otters learn important skills they need, and with that I stopped breathing. That sounded so familiar! Here all sorts of people were gathered around and so interested in the rehab of these otters, as they stared at Claire as she rolled around the exhibits wringing her hands. Don't they get it, she needs a rich environment too! With that, we went home, me with a pretty heavy heart. Fast forward a few weeks, the Layton family was hanging around in the area and we were able to meet up with them at the MBA. I love being around Maren and Leah and couldn't think of a better way to try my hand at being in public again. We showed them all of the highlights including the hot pink flamingos exhibit. At the end of it, is a display about changes everyone can make to help, Maren found the picture that said it all and it was then that I knew this would be my theme for the year.
It was a good thing that Maren's husband Ryan was there, he watched all three girls while we had our picture taken, which I have to say I was very impressed with. I just loved the expression on the lady in the picture, because regardless of what I look like, that is how I am feeling almost all of the time. Five days have now passed since our fabulous play date with the Layton family. Today I found myself having to wake Chloe up to go get Claire, we were already 10 minutes late when I went to get her only to find that her shirt had obviously been used to wipe off her hands after having them in her poopy diaper. With no time to spare I took her little poop cover self and strapped her in the car to get Claire. Once we were home, the first order of business was to change Chloe. Of coarse I got her completely naked before remembering that the diapers were still in the car. So I put her down to run around while I fly down the stairs, but before I go out the door I see that Claire had fallen asleep on the couch. I knew that if I left her there she would certainly end up with a finger in her eye or a naked butt on her face, so I quickly laid her down on our bed. I then again started to make my way for the car when I saw Chloe, standing on the carpet in the hall, peeing, sigh. Went down got the diapers and got Chloe dressed. By that point I was laughing, in a crying sorta way. Then I got a message on my phone and saw the picture "OF COURSE I CAN" it's my new background, a much needed reminder. I really wanted to have a giant pity party and sit in the corner and eat my weight in sugar, but Claire was waking up so there was no time for that. So I did the next best thing, I ate sugar with the girls. I think that a large part of the pity party and my frustration in general is that we are no longer in crisis and I am not sure what to do with that really. Aside from the creepy neurological activity that has been pretty random, Claire is doing GREAT!!! At school today she used her talker to get popcorn that her aide was having as his snack, she is calming down pretty quickly, standing better, getting more confident with her walking and learning a bunch of academic type stuff too. So other than the fact that she has Rett syndrome, life is actually normal right now and is scares the daylights out of me. For years I advocated like hell, pushed insurance companies and had IEP's every month or two. But I don't have to be doing that right now, it is all working like a fairly recently oiled machine. So without the need to work on sitting, standing, hand use or anything else, we made brownies. When I first had the thought it seemed so logical, Of coarse I can. And you won't believe it, I did! It was my first cooking demo with both girls and it was great! We then watched Beauty and the Beast while they baked and following that had a dance party to veggie tales while I folder little link clothes. For the icing on the cake, after dinner, Claire pooped on the potty, for the third night in a row!!!!!!! All that to say that I am not entirely convinced, but I will keep saying it out loud until I believe it, OF COURSE I CAN.