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Tuesday, August 31, 2010

last day to vote!

please share this with everyone you know!
IRSF is this close to winning a $250K grant from Pepsi and we need your help. We have held the 1st place spot all month and now are in 3rd.
text a vote by sending 100842 to 73774
or visit
www.refresheverything.com/rettresearchtoreality

THANK YOU!!!

Tuesday, August 24, 2010

what happens in vegas ends up my blog!




Im so lucky. 9 months ago I became a member of a "club" I never wanted to join. BUT. The people who were already IN the club turned out to be AWESOME. Nothing short of amazing. It's hard to describe.
It's even harder to describe how it felt to send out a random email to a handful of these club members to see if they maybe wanted to spend a weekend in Vegas and have almost 100% positive responses!
9 amazing mommies of even more amazing little girls made plans, got plane tickets, got sitters and got themselves to VEGAS! some for three nights and some for two. I couldnt believe how quick it came together. meant to be.
So two Fridays ago I met one of those awesome moms at SFO and got on a plane headed for sin city. We met 4 other moms (plus one sister and one sister in law) at the airport in Vegas and it wasn't weird. It was kind of weird that it WASN'T weird! I have gotten to know these moms on facebook, email and their blogs. I had already met 5 of the ladies before so that helped but still. It was just good energy. Great energy.
We got to the hotel and met up with the rest of the girls who had flown in the night before. There were 3 of us from CA, and one each from Texas, Mississippi, Alabama, Indiana, Michigan and Kentucky!
We hung by the pool, chatted, read books, drank beers and fun drinks and lots of water. We floated down the lazy river and ate burgers and fries. We people watched and had such a wonderful time. We did a lot of talking ~ even about non Rett related things! We had fantastic food, got blisters from walking every inch of the city and took lots of pictures.
I do not know how I would do this without these fabulous ladies and many others. Its such a wonderful sliver lining.
i love you ann marie, bridget, carrie, colleen, dawn, erin, kelly, maren & zenaida
"wouldn't you like to get away?"
Cannot wait to do it again!

the end of summer.....ahhhhhhhh




Its funny how the things you so cherish as a kid morph right into things you dread as you grow up. Summer is OVER. And I can honestly say I am super happy about it! Never did I think I would be dreading summer! Or Spring Break! Or government holidays! But now that Avery has been on the school district schedule I LOVE Mondays! and dread the days off.
wow, that sounds pretty awful. But its true.

First of all Avery loves school. And riding the bus. In fact BUS is the only real word she consistently says anymore. She might spontaneously combust tomorrow at 8:05 when the bus pulls up. Seriously. She also loves her teacher Diane soooo much. As do we. She is one of those very special people that just radiates very special-ness. We can see that she loves our daughter. And that means so much. Avery hasnt seen teacher Diane since June and I know she is super excited for that. I was talking to another parent today school and she said "if you have a good teacher, it really doesnt matter what the IEP says because you know they are doing what they need to do", and its so true. We are lucky to have what I think is a pretty good IEP and a fantastic teacher. What will we do next year!?

Sometimes I wish I worked. I think this would make me WANT to see my kids more often-make me not want to always get away! Why is the grass always greener? I know moms who work who would do anything to be at home with their little ones. But I guess that is where Rett syndrome throws a wrench into it all. Every day, maybe for just a minute or two, but every single day I wonder: "what fun thing we would be doing if Avery didn't have Rett?"

Im slowly but surely learning that I can make things more difficult in my head. When it actually happens that we DO go out as a family, or I do take both kids to the grocery store and it goes well I think to myself "ok I can do this!". The three of us actually have had one extremely easy trip to Target and 3 awesome grocery visits in the last week or so. So the knowledge that it can be done is slowly taking root in my brain. And it will only get easier.

But-the important thing is~summer is over~and things can go back to "normal" around here.





Wednesday, August 18, 2010

how do you do it??

A fellow rett mommy and blogger asked me to guest post on her blog! My post was published on Sunday the 15th and now Im going to share it with all 34 of my faithful followers!
She asked us to write about how we cope with whatever trial we have in our lives. Shocker, I chose Rett syndrome to be our trial-as it truly is our only one at the moment, and I hope the only one ever. So here is how "we deal":

The paint color on Avery’s bedroom walls got me thinking. We wanted something neutral because we didn’t know “boy” or “girl”. We chose green, something like the inside of a perfectly ripe avocado. Delicious. It’s a little brighter than that but we didn’t want to do it over so it stayed. Thinking of that took me back. Back to the trip to Home Depot to pick it out. Back to painting the room with Red even though I wasn’t supposed to be painting while pregnant. Back to directing him and my mother-in-law as they put together the crib. Back to being ignorant about what it meant to be a parent.


I wish it was as easy as paint colors and cute bedding and the crib from a fancy kid’s store. I wish a lot of things.


But that is not what this is about. This is about how we deal. How we cope. How we do this: how we handle this life with Rett Syndrome that is now our own.


The quick answer? No idea. I don’t really know. We just DO. But that would be a pretty boring post. So I have been thinking of a longer answer to that question that is asked of us repeatedly. “How do you do it?”


A lot of people want to tell me that I am so strong and brave and they couldn’t do what I do. And I always tell them, “Yes you could and you would because it’s your kid.” What am I supposed to do, curl up in the fetal position and cry instead of getting out of bed? (Don’t get me wrong, I have done my fair share of that.) You just have to get up every day and fight.


I have always been the type of person that wants to figure things out on my own and then ask for help-maybe. I don’t know what it is but even in the grocery store while looking for ant traps I will wander the store three times or more before finally acquiescing and tracking someone down to help me. I could walk into a clothing store fully knowing what I want and if the salesperson asks “Can I help you find anything?” I’ll say “no thanks I’m just looking”-liar. So it was no different when we received Avery’s diagnosis almost 9 months ago that I immersed myself in all things Rett. I joined sites and emailed parents and ordered books. I had to get the basics before I could go out and really ask for HELP. I’m getting better at this, even though the ant trap story is true and very recent.


With the diagnosis came a lot of support. It came from all over: from my own home to another Rett mom all the way in Indiana. It came from the Director of Family Support at the International Rett Syndrome Foundation who happens to live about 15 minutes away. It came from a parent of a young woman with Rett whose case I had managed in my previous life as a service coordinator. The support came from all over and I had to take it in. I had to accept it and ask questions and let myself be vulnerable. I felt such love in those first few weeks. Such warmth and lift; and a realization that we really mattered to other people. This has only gotten stronger.


The parents I have met that have blazed the Rett trail before us have been such gifts to us. Shoulders to cry on. New friends to laugh with. Our bonds are unbreakable even before we meet in person. We are connected and always will be. It’s a difficult thing to describe, but I know I couldn’t do any of this without each and every one of them.


I’m a big fan of email vs. telephone for most any communication and it was via email that we notified our friends and far away family about Avery. I’ll never forget the responses we got and I was so thankful that email existed because I’m not sure how I would have handled all the calls that would have flooded the line. I also realized something even more important: this was not the worst thing that could have happened to Avery or to us. I remember thinking “Wait! She didn’t DIE! She just has Rett syndrome!” as I read some of the responses we got. Everyone offered to do what they could to help – bring food, watch the kids, get groceries – and that is when it clicked: it could be a lot worse. Avery is a bubbly, happy, giggle monster who has a zest for life. She isn’t ill at the moment or requiring special medical care to keep her comfortable. We can do this!


The night we got the news, I called my husband to let him know. He was almost home from work and his response was pure shock. Denial. No way, it can’t be. “It is,” I told him. We embraced as soon as he walked in the door and we both cried. I told him it was going to be ok. We can do this, together. We had already had many conversations about our divorce chances being something like 80%, that this kind of thing can really drive a wedge in a relationship. We had vowed to never let that happen – we needed to be a united front and help each other so that we could help Avery. As soon as he walked in that night and we hugged, I knew it really would be ok. We were in this together. He was going to have to hold me up and I would do the same. Our marriage isn’t perfect – is anyone’s? But I can say that it has only gotten better since diagnosis. It honestly has. My husband has been such an amazing support to me even if he doesn’t know it. I’m beyond grateful to be walking this road hand-in-hand with him.


Part of me feels like I should always be “on”, always in “rett mode”, thinking of PT, OT, ST, ABA and IEPs. I quickly realized that, while all necessary, it’s easy to get bogged down in all the “stuff” that comes along with a disability. There is a lot to learn, to do, to think about, to plan. But, not at the expense of my sanity. I recently told someone I think I might be missing the I-feel-guilty-when-I-leave-my-kids part of my brain. Because I rarely feel that way. Maybe I should feel guilty for that?Probably. I go to the gym 4-5 days a week and it’s my saving grace. I have monthly girls’ nights, book clubs and random dinners with friends. I indulge in pedicures, hair appointments and as many date nights as possible. We take weekend trips as much as our wallets will allow with friends or just the two of us. It is so important to “recharge”. We have to take care of ourselves if we are going to have any chance of taking care of the kids.


My blog (and my fellow blogging Rett mamas) has been an amazing support system. Being able to put my feelings out there – to write them down – helps me process and makes it easier to accept the love and support I am receiving from all over. It keeps me from having to tell the same story over and over. It has connected me to other moms all over the world – no seriously – the world. It has connected me to me and this life and my feelings about it good and bad. I often get comments referring to my blog such as “you are so candid” or “I love how honest you are” and it feels good. I think it’s a difficult thing to be a parent and be honest about your struggles, let alone a parent of a child with a disability.I’m not doing a newly diagnosed parent any favors by sugar coating it. I remember hearing new moms talk about the experience of bringing their new babies home and I rarely heard the words scared, overwhelmed, depressed, anxious, or panicked. All you ever hear is that it’s amazing, and joyful and full of so much love and beauty. And it wasn’t like that for me and I have always felt it wasn’t totally like that for most moms either. It still isn’t. Not totally. Of course I do have a front row seat to two of the most amazing miracles on a daily basis. Because we have been dealt this brutal blow, I get to really truly see my kids progress no matter how small. And that is PRECIOUS.


So, I’m not sure that I have answered my question any better than “I don’t know” but I do know that it isn’t just one thing. It is a lot of little things that end up being really amazing when they all come crashing together.Kind of like a smoothie. Or guacamole. Delicious.


Monday, August 16, 2010

Thursday, August 12, 2010

so many feelings

Im packing for a trip I shouldn't have to go on. A trip I got organized with a bunch of awesome moms. Moms who also have a daughter with Rett. We should never have met. We wouldn't have. But we did. Some of them I have met in person. Some I have only met online. They are all amazing and inspirational and will be my friends forever because of our common denominator. I can't wait to have all of us together but at the same time have such a lump in my throat thinking of the reason why we are taking this trip.
Being a parent is REALLY HARD. For anyone. But when you have a child with special needs (or more than one child with special needs as a couple moms in this group do) it is a ton harder. Sure we have all kinds of "perspective" and can feel such highs because we feel such lows-but you know what? I'd rather be ignorant to all of this. I'd rather have Avery's MECP2 gene have all its parts.
It's hard to tell how I should feel about the trip to Vegas. I cannot wait to get back there. I havent been since my bachelorette party-such a different occasion. Do I want to forget that we all have a daughter with Rett? Do I want to just have fun with these fabulous ladies? Or do I want to lean on them and share with them and cry with them and just feel "normal"? I guess I will have to do both.
Today was just one of those days where it was smacking me in the face nearly every hour that my kid was different. I just long to know what our lives would have been like. So, Im in a weird place. But grateful to be going on this trip-even though I shouldn't need it. But I do! So Vegas here I come-WATCH OUT!!

Tuesday, August 10, 2010

whirlwind



Today was one of those days that passed by so quickly I cant even believe it. Part of it was the deliciousness of sleeping till 8am. glorious. And it wasnt Avery screaming that woke me up. It was my phone ringing. I ignored the call and listened for Avery. She was up but quiet. ahhhhhh. I let that soak in for a few minutes and then the "buuuuuuuuuuusssssssssss" yells started. So up I got. As soon as I entered the kitchen the "mommy" calls start from Nolan. breakfast. get dressed. play outside. Babysitter came at 11-I ran out to Michael's for supplies (for a Vegas related surprise), went to the gym, picked up sandwiches and came home to meet Maren and Leah for a pool date!
I know it's old news but it's so great to hang with a mom who gets it and a girl who is so similar to Avery. So we ate our sandwiches in the back yard with my vulture children begging for bites. Nolan went down (unwillingly) for a nap and our fantastic sitter stayed with him. And two moms went with two girls to the pool (and both moms forgot their cameras).
We must be a sight. Our two gorgeous girls with their long flowing hair and their matching Safe.t.seal swim vests. Not to mention their repetitive hand movements! So into the pool we go. Cute girls. They had a few swim races which were all won by Leah. We tried to cheat but got caught every time. :)
Then Avery became too too loud and we had to go anyway to relive the sitter. But we all had fun. Im getting better with the tough moments-like today when Avery approached a woman who was eating chips and the woman said: "she signs SO WELL!" And I said-"oh she's not signing, she has rett syndrome and she has repetitive hand movements that she cant control" like it was no big deal. And at that moment it wasn't. Maybe it was because there was another little girl a few steps away doing something similar. Im sure the woman thought it was Tourette's. Especially with Avery's yelling outbursts. That kind of makes me laugh.
So we came back here and the girls kind of walked around each other and smiled. Then I got my camera and we got a few cute shots. The first was the best and totally sums them up. Its blurry b/c they are always moving so quick and both girls have one hand to their mouth.



Thanks for coming!!

those fleeting moments of "normal"


at the zoo on Sunday and luckily I had my camera ready for this

Sunday, August 8, 2010

dinner


Most of you know that for the past several months I have been feeding Avery all her meals because she has a hard time with utensils and her hands are all over the place. If I let her do it, it ends up on the floor, on her lap or just about anywhere but her mouth. She is hand mouthing so bad that if she does get a bite in there she will knock it right out.
So tonight I give her a bite and she spits it out. maybe its too hot? try again, spits it out. Ok maybe she doesnt like it. I make something else. I give her a bite and she spits it out. She points to Nolan. ah ha! You want to do it like Nolan is doing it, by yourself! So I put the plate down with the fork and she takes a bite (using her hand). Then she starts to point at me. You want me to leave you alone huh? yep. I went to the kitchen and when I got back she had cleaned her plate. she seemed pretty happy about it too. hmmm. maybe mom doesn't always know what's best!

Saturday, August 7, 2010

looks can be deceiving

Yep, looks can be deceiving. From the looks of this picture I have two totally typically developing kids. But, I dont.
Today was one of those days when I was constantly reminded of this fact. Lately it seems as though every day I am realizing for the first time that my daughter has an incurable devastating neurological disorder. I keep getting punched in the stomach, reliving a nightmare, having dreams shattered. I guess Im stuck between #2 (pain/guilt), #3 (anger/bargaining) and #4 (reflection/loneliness) stages of grief. Im super angry. I feel guilty for being angry. Im in pain-for Avery especially, it hurts to see her struggle so. Seeing her try to open a board book that she loves and she cant and she is four. And she could do it easily at two. Im bargaining-why me? why her? why us? why ANYONE? I hope for a time machine to go back and start over and never have Rett enter our lives. I am reliving memories of when she could do "fill in the blank" and feeling isolated because of it. Even though I know of too many families who have faced or are facing the same thing as we speak.
It just doesn't make any sense. This cannot be how my life is supposed to be-can it? I don't believe that she was "given to me because Im so special and would be the best parent for her". Im more science than spiritual and it was just one of those accidents. Did it happen for a reason?? I suppose there are all sorts of lessons and silver linings and blah blah blah. But at this moment all I want is my girl back. The girl I thought I had-the girl who is still in there-in a body that wont cooperate with her perfectly "normal" brain. I'd give ANYTHING. There I go bargaining again.
Well now that I have gotten all depressing, (which was never the intent of this blog! I wanted it to be inspirational and smart and witty-oh well) Ill share that I ventured to Target with both kids today. Avery held my hand the entire time (she usually wants to ride in the basket) and didn't scream once. We had a list and were on a mission so it was a pretty quick trip-plus I had fruit snacks to dole out. I was so proud of her-and told her so in the checkout line. She did such a great job. Tomorrow its off to soccer-Avery is on a VIP team (for kids with special needs), they are the Dolphins. And Im the team manager. We have our shin guards and team snacks ready to go... At least Nolan is excited. :)