my dad

Most of you know that I lost my father 9 years ago this past monday. He was 63. He passed away in Virginia 2 days after christmas in 2001. I was in California. I had made the choice not to go see him in the hospital. A choice my mom thought I would surely live to regret. I don't regret that. What I do regret is that we as a family didn't fight hard enough to get him to give up drinking.

My dad was handsome, smart (wicked smart-knew all the answers to Trivial Pursuit questions smart), funny, thoughtful, caring, hard working, and successful-the strong and silent type. He could cook too! Made hollandaise from scratch!

He was also an alcoholic. I didn't know it until I was in high school.

My earliest memories of him involve my brother and I listening to the cassette tapes he would send to us from his Navy ship at sea. He was gone for months at a time and I honestly don't know how my mom did it alone. He wrote us letters that I can still see in my minds eye-his handwriting was so distinctive. He would always ask us to "take care of your momma and be good".

He spent a lot of time in the garage with his cars (a mercedes lover), he taught me to check my oil and change my tires. He also spent some time in a tux, attending opening nights of the Opera or the symphony. He always brought us wonderful trinkets back from his work trips. He was a voracious reader and I swear he knew everything about everything. He loved silly movies-physical comedy and the really bad stuff like Clash of the Titans. He served in the Navy for 28 years; first as a commander and then Captain. He retired in 1988. I think that is when he started to get really depressed...and the alcohol closed in on him.

My mom, who loved him dearly, felt emotionally abandoned and divorced him in 1996, after 29 years of marriage-in the hopes that he would stop drinking. We all hoped it would make him stop. But by then it was too late. And he was too proud to get help.

In 1993, when I was in college, I wrote him a letter pleading him to stop drinking, I didn't want to lose my father. I used the word "alcoholic" and I think I truly offended him. And he never had the tools to communicate that type of thing well. So from 1993, until he died in 2001, our relationship was strained. I tried and tried and he just retreated further.

It's all just very sad. Im so sad he never met Ryan. He never got to know any of his grandchildren. And they will never know him! Im so sad for the life he missed out on.

But he was a wonderful father. He took care of us kids when we were sick (my mom always admitted she was never good at that!), and he taught us so much. And I miss him.

I don't have many pictures of him but I do have my parents' wedding album. So here are a few shots of the two of them on their wedding day. June 3, 1967. He was 29 and she was 24.

I miss you, Dad and hope one day I get to see you again.

technical difficulties

I havent posted about Christmas 2010 yet because my digital camera is on the fritz. the lcd screen on the back is not working so I cant see what Im taking a picture of, nor can I see what the picture I took looks like. kind of like the old days I guess. but because of this I havent been using it at all. my "good" camera has also been on the fritz. On Nolan's birthday I got it out to use it and it wouldn't take pictures. this may have been due to the broken battery door (if it isn't just right it wont work) but Im not sure that was it. I got it out to use on Christmas and voila! it worked. sort of. my auto focus is stuck or something and I got many a blurry picture. But I also got some good ones. Well then, you ask, what is the issue? A few months ago I noticed that the the little metal piece on the USB cord that goes into the camera was bent. So I picked up a new one, brought it home, hooked up my camera and....nothing. I think Ill have to take it in to be looked at after all. I know it isnt the USB port. I tried everything. Its the camera.

So, until I can get the christmas pics up, the christmas 2010 post will have to wait. Let's just say Im so glad the holidays are behind us. Everything went well, but Im exhausted.

2009...oh, 2009.

(this was shortly after we put up our tree)

Christmas 2009 came just 46 days after learning that Avery had tested positive for Rett syndrome. I was still waking up in the middle of the night and immediately thinking: "Avery has Rett syndrome. Rett syndrome?" After looking back at my posts from this time last year, I can see that I was trying really hard to feel, no, to appear "normal". I was using an awful lot of exclamation points!!!!! It all comes across like "heyeverythingisokoverheresodontworryaboutusonebit!"

When in reality I was so scared and confused. Im so glad I blogged about it all because otherwise Im not sure I would remember it. It all seems a little foggy in my memory. It's because everything had changed but really it was all still the same and that's just a strange feeling to have. I had so much on my mind-trying to figure it all out, seeking out people to help, researching, making Dr.'s appointments, firing Dr.'s for doing their jobs poorly, getting new Dr.'s and going to those appointments. I think I was also doing a lot of trying really hard to make other people not feel badly for us. I didn't want to feel badly for us-so no one else should have either. That's what I was thinking. But things were different last year. See Avery holding that DVD in her left hand? She cannot do that anymore. It's not possible. And even though I knew that could (probably would) happen-that Avery would lose some if not all hand function-I still have a hard time believing it did. Im so happy she can still use her right hand pretty well for now and is picking up certain toys and can hold her fork (with lots of encouragement). Last year she wasn't taking a single medication (maybe for allergies) and now she takes 4.

(christmas morning, holding a new DVD in her left hand)

But she is still just as happy (for the most part) and even prettier-if I could just get my nice camera fixed Im sure I would get more proof. It takes a quick shutter to get a shot of her smiling when she is moving around at warp speed. And she is getting some of her words back-in fact we just heard BUGGY today several times. So no feeling badly for us now either!

!!!!!!!!!!!!!!

2008

2008 brought preschool, early intervention, a flower girl job and a baby brother! At this point Avery was delayed but making so much progress! She started walking in 2008 and her vocabulary was expanding. She had a TON of words. I made a list to try to prove to the early intervention evaluators that she was just going to "catch up". I think I was also making her out to be better than she was. We were initially denied EI services at all! I was happy and bummed at the same time. like, wait! she needs help...even though I'm pretty sure I am happy you say she doesn't need it, but...wait! We later re-applied and were accepted. duh.

She also had bangs which I realize now were not the best look for her. (thanks uncle brad)

2008 was also the year I started this blog. It got a little tiresome telling the same story over and over to everyone and wanted a place where people could come to get updates on Avery if they wanted them. You see, I used to be a big picture pusher~ I would send out regular kodak gallery albums to EVERYONE in my contacts list (well almost). And after a while I realized, its possible not everyone on this list cares, has time, or even opens these things. So the blog was born. And now all of you that do care, come here.

Christmas that year was good. She played with some toys, used her left hand to put food in her mouth and still looked at the camera and smiled. 2009 would be the year that most things changed....

2007

Christmas 2007 memories remind me to be happy with what you have at the time. Avery was 17 months old. We had fired her pediatrician by that time because he repeatedly blew us off at any mention of her delays. But all of a sudden at 15 months HE realized she was delayed (but was certain she didnt have any kind of genetic syndrome!). A lesson in mothers instinct-but I didnt want to believe what I knew in my heart. She was not walking, not crawling. She could walk behind a push toy though. That was cool. We had her in PT for about a month and she had promised us she would walk within 4-6 months (and she did!) She was barely pulling up and had very little language.

But looking through the pictures reminded me of all the things she could do at the time. She could point. She had a handle on several signs. She tore open her presents (with help, but she had interest). She could do the "elephant": she would make this cute elephant noise while raising her arm like a trunk. She could pose for pictures, looked at the camera and smiled. She could hold things in her left hand, she could play with bath toys, she could hold her other toys. She flipped pages of books and magazines like nobody's business.

We were so focused on all the things she couldnt do though, and only thinking about how much better it would be when she could walk/talk/crawl. Little did we know. Part of me is glad we didnt. But part of me wishes we had known about Rett syndrome and what it would later do to our girl. I know we would have appreciated it all much more at the time. Im still guilty of this now-not appreciating what she can do as much as I should. About 6 months after these photos were taken, we would go see genetics and have some basic genetic testing done. We sat in that office showing the Dr's how well she could roll a car across the floor trying to prove nothing was wrong. Rett syndrome was mentioned. The geneticist thought it was unlikely but that we could test for it if we wanted to. Because I knew what it was, and what it meant, I declined. I told him: "If she does have it, I dont want to know now. I want to enjoy her how she is without worrying about what she may lose". I wonder what would have changed had we found out at 22 months rather than 40 months? Its possible that it may have helped us enjoy her more, but I dont think I was quite ready for my heart to be broken by Rett.

She can still point. Ha ha, Rett, you didnt get everything!

holidays over the years

I am TOTALLY copying several of my blogging friends by doing this but I thought I would spend the next few posts showing Avery over the past 4 christmases. This year will be her 5th christmas! I can't believe it. Looking bad at the pictures was tough, as usual. But I had more smiles than sadness. The first is of course 2006. We were all so happy because at this point we thought life was still rainbows and puppies and unicorns. We had NO IDEA how our lives would change. We were, however, very aware of how chubby she was! I couldnt stick to just one photo so here are two. The first was taken on Christmas Eve 2006. The other sometime in December. Avery was 5 and a half months old. Ahhhhhh, ignorance IS bliss.

finally something!

to blog about that is. I have been struggling lately to figure out what to write about. another rett mommy pointed out to me that she just writes-and doesnt like to put too too much thought into it and I realized I might be over-thinking it a bit. and I am. I tend to do that. but i know my best posts are the ones that I really have no plan for-I can't try too hard.

So here goes.

Many of you know that we have been trying to get our little energizer bunny to slow it down-simmer down-pump the brakes a bit-so she can focus and COMMUNICATE. So we have gone the medication route. I know there are moms out there who are totally anti ANY medication beyond anything natural and I understand that and respect that. But for us, for me, for Avery-I know it is the route we must travel for now. She literally bounces off the walls and we got reminded of that this week as we pulled her off all but one of her meds.

We started her on Tenex this summer along with Prozac (sometimes Tenex can make things worse before they get better and the Prozac could help with that). We saw a change-Avery stopped doing her repetitive behaviors of tapping, opening and closing doors and drawers and her screaming was reduced. Slowly we started to increase the tenex and decrease the Prozac. Avery would fall asleep every now and then when we didnt want her to, but she would get used to it pretty quickly. Then, the Tenex wasnt really getting her as focused as we had hoped and we moved up. To Risperdal. An anti-psychotic. yikes. But we trust Avery's Rett pediatrician and she made so many phone calls and talked to so many other specialists about Avery and they all agreed this was the next step.

We started it last Friday. A mini dose. By sunday she was already better. She was an angel that day. So sweet. On Monday, her behavioral therapist notice better hand function and more focus. Lots of smiles, giggles, loves. YAY! It's working. So we upped it. Wednesday morning I gave her .5, instead of .25, she had a good day at school and had a great behavior session too. then we gave her the afternoon dose of .5 and she was fine. At about 6:15 I noticed Avery locking one of her legs while walking. She would stop and lock the leg and stand there for a second, just laughing. Weird. Then about 15 minutes later-creepy town. She was bent over to the side walking with a wide and unsteady gait. It was like scary movie creepy. I emailed Dr. Mary. Sounded to both of us like dystonia-which can be very serious and is not to be messed around with. We spoke on the phone and decided no more meds the next day. She had a great day at school. Even pooped on the potty that afternoon! We still gave her the Clonidine that night and she took much longer to fall asleep with the Tenex out of her system. This morning she had started again opening and closing the trash can and the drawer in the kitchen.

Today, luckily, we had our appt at Katie's Clinic. We got to talk to one of the top psychiatrists in the area-who Dr Mary had consulted with on Avery. He was wonderful. He told us to go back on what we were doing before and we would add Abilify. If that doesnt work, he has a few others we can try. Cross your fingers that this will be a winner.

By the end of the clinic appt, Avery was WIRED. buzzing around. squealing. eyes like saucers. yikes.

So, here we go again. Believe me, I wish we didnt have to go this route. But if Avery is screaming and moving like the tasmanian devil she isnt going to learn or be able to communicate. And that isnt helping anyone. If meds ARENT the answer, ok, but we have to see if they are. I already know they work, its just finding the right ones in the right doses and Im confident with the professionals we have on our side.

On a more exciting note-we saw the amazing Judy at clinic-she is the communication person. She knows all about eye gaze and ipads and finding ways for our girls to speak. We got Avery on a Tobi device which uses eye gaze and/or touch screen technology. I had sent Judy the famous bus video prior to coming and she had a page set up with choices of different videos. Barney, Elmo, Dora, Backyardigans etc... and the bus video. Her eyes chose Backyardigans first-maybe b/c it was in the middle, maybe because its the only show she has seen out of all those choices, who knows? But then, she pointed at the bus! touched it. and it played. and she was thrilled. So Avery wont be an eye gazer for now. We will be working on getting her some sort of touch screen device for school to try out. Avery's fantastic teacher came to clinic with us today-on her own time-and was quite impressed with Avery. You could tell Avery was having fun with it. I got tears in my eyes. possibilities.

We saw the music therapist too and Avery was digging the guitar. She used to find this little book we had with a guitar in it and say "gu" when she found it. and anytime a new instrument was presented-she just pointed to the guitar. cute.

the best part was of course running into other parents and girls. and I got to meet one of the awesome clinic volunteers-whom I had only known via facebook. All such lovely people there. They are a safety net in this rough sea.

In other news- Nolan is SERIOUSLY 2. enough said.

uninspired

Even though it feels as though I have neglected my blog for some time, I am thinking about it constantly.

Every day something pops into my mind and I think ooohh, good blog post topic. and then it kind of slips away. I had big ideas on writing what it means to be a "grown up" and thinking about when exactly that occurs for people. But I just never expanded on it in my head.

So, Im asking for inspiration from my "followers" or whoever reads this thing. Any ideas for me? Anything you would like to read about?

Cut!

Before.....

and AFTER!

and AFTER!
I have been wanting to do this for awhile. Avery's hair is REALLY long. WEll, was. I wanted to wait till it was long enough to donate and then kept putting it off. and for some reason tonight was the night. lucky for me her hair is curly enough to not show the crookedness and still needs a little tweaking. we will see what happens in the morning.

thankful 2010

not feeling particularly thankful today...but figured I should get in print what I am thankful for. so, in no particular order:

lip balm

music that either makes me want to sing out loud or cry or both

pharmaceuticals (for me and for kids)

sunny days

family

well written TV

gym memberships

pedicures

naptime

time to read

people who are amazingly generous and thoughtful and that i get to call people like that friends

open minds

honesty

easy trips to the grocery store with both kids

drive thru pharmacies (and banks and coffee shops)

laughter

reliable and experienced babysitters

my new rett family

good memories

bad memories that made me stronger

my family-immediate, extended, and by marriage

our fantastic friends and acquaintances

dvr

blogging

people who read my blog

love

i guess that is it for now. surely i will come up with some more to add to the list after this long week of no school!

anniversary of "that day"

(taken on 11~13~09)

today is the day. one year anniversary of the official diagnosis of rett syndrome. and, it's just a plain old tuesday. a tuesday with lots of love, that is. I got some facebook love and text love and even got flowers from my awesome brother in Virginia. Avery's incredible teacher called me to check in and told me she was thinking of me today and values me and avery and that we are in her heart and mind daily. how nice is that? it was what made me cry. but just for a second.

my facebook status today was this: one year ago today we closed one book and opened another. this book has been filled with answers as well as new fears. best part of the book is the family that comes with it. we couldn't do it without them.

And thats really how I feel. We just stepped off the path of the unknown and onto the Rett path. Who could have guessed it would have been lined with such fantastic people. And I know that seems cliche (all silver lining and blah blah blah) and maybe it is, but these people are my life line and they ARE fantastic. Being on the Rett path or in the Rett book, or the crappy club-whatever you want to call it-STINKS. It's unfair and frustrating and sad and makes me so angry. And we have it pretty easy so far. But we have all these hands surrounding us from our family to friends to our Rett family and none of them will let us fall.

I know it could seem like a cop out to say that getting the diagnosis was a relief but it was. But with that relief there were crushed dreams. It also put a big fat period on the end of a sentence, so to speak. We had always hoped Avery would "grow out of" her delays. Getting a diagosis of Rett meant that was no longer a possibility. But we have new hopes-the hope for Avery to maintain her skills, the hope of a CURE. I have dreams of Avery on the first day of her freshman year in college. She is in the common area of her dorm floor sitting in a circle with all her dorm-mates and the RA. They are going around introducing themselves and saying one interesting thing about them. Avery says: "Im Avery Robertson, Im from CA and when I was little I had a disorder called Rett syndrome. It caused all kinds of problems. Scientists found the cure for it in 2016 when I was 10."

How cool would that be?

A lot has happened in this past year. Some very proud moments and some not so much. I lose my patience more often than I care to admit. Thoughts cross my mind that no parent should ever think. But the good moments definitely stand out in the crowd. Every day I wonder "how the hell did we get here?" or "why is this our life?" and I realize it's a pretty darn good life. Even though I feel like crying through most of it! Where do I get the 'most likely to not cry because its not socially acceptable in most situations' award?

So here is to all of you. you all know who you are. you are thoughtful and sweet and giving and generous and let me cry when I need to and make me laugh when I want to cry. Slowly but surely I am becoming a better person, wife and mom. and Avery thanks you for that.

A wonderfully wise woman, who is also the mother of one of my oldest friends posted the following in response to my latest post about clarity. It is from Khalil Gibrans The Prophet. Enjoy. I did.

Your joy is your sorrow unmasked.
And the selfsame well from which your laughter rises was oftentimes filled with your tears.
And how else can it be?
The deeper that sorrow carves into your being, the more joy you can contain.
Is not the cup that holds your wine the very cup that was burned in the potter's oven?
And is not the lute that soothes your spirit, the very wood that was hollowed with knives?
When you are joyous, look deep into your heart and you shall find it is only that which has given you sorrow that is giving you joy.
When you are sorrowful look again in your heart, and you shall see that in truth you are weeping for that which has been your delight.

Thanks Regina for being there for me when my own mom cannot. xxoo

halloween

clarity-not always a good thing

so my good friend colleen got me into Mumford and Sons (an awesome English band). I had already heard one of their songs on the radio and loved it, but after she saw them live I had to buy the album for my ipod. one of the songs, thistle and weeds, is really good. here are the lyrics:

Spare me your judgements and spare me your dreams
Cause recently mine have been tearing my seams
I sit alone in this winter clarity which clouds my mind
Alone in the wind and the rain you left me
It's getting dark darling, too dark to see
And I'm on my knees, and your faith in shreds, it seems

Corrupted by the simple sniff of riches blown
I know you have felt much more love than you've shown
And I'm on my knees and the water creeps to my chest

But plant your hope with good seeds
Don't cover yourself with thistle and weeds
Rain down, rain down on me
Look over your hills and be still
The sky above us shoots to kill
Rain down, rain down on me

But I will hold on
I will hold on hope

I begged you to hear me, there's more than flesh and bones
Let the dead bury the dead, they will come out in droves
But take the spade from my hands and fill in the holes you've made

But plant your hope with good seeds
Don't cover yourself with thistle and weeds
Rain down, rain down on me

its a great song. just the right mix of melancholy and hope.

the line that caught my attention was "i sit alone in this winter, clarity which clouds my mind".

now i know that we all have different interpretations of music and I am still trying to figure out exactly what this one means but it definitely got me thinking. Clarity. I think we all strive for it.We want to be able to see the the important things in life. We want to be clear about what it is that makes us happy, what is important. But I think that sometimes you can have too much clarity and it can mess you up. cloud your mind.

I discussed this with some other rett moms on friday night. I didnt articulate it very well and Im not so sure that I will here either-but I feel like I might be too clear. in some ways this is good like when I dont take for granted even the smallest milestone that Nolan reaches or when I see Avery achieve something she has worked so hard for. But clarity also means seeing children Avery's age (or younger) and being reminded of just what she is missing out on. Knowing all the things she could and should be doing-really seeing those dreams and hopes dashed. Im real clear on that. Too clear.

I dont want this to turn into a negative nelly post. Not at all. But it's true that life is like this-you can't get the good without the bad. The same holds true for having perspective-the perspective that comes with having a child with special needs. Because I can appreciate the beauty in the little things more than I could before, I am also susceptible to being hit harder with the harsh realities of it.

On Saturday night while enjoying a wonderful evening with great friends, I locked eyes with the cutest little 9 or 10 month old baby girl. She was at the next table in her high chair, bow on her head and the sweetest smile on her face. It reminded me so much of Avery when she was that age. Except she was waving. Looking right at me, with her sparkly eyes and darling smile-WAVING. It was all I could do to not cry.

That morning was particularly difficult with Avery. Lots of tears from her-and me too. some days are just like that. I went out to the city with puffy eyes to meet our good friends for a fun night out on the town. And it was just that. We had a blast. I needed it.

Then it was Halloween. We stretched out our night away as long as possible then went to get the kiddos. And as usual, we see Avery and she is sweet and calm. But, within minutes of my arrival she is back to her old self. Anxious, irritated, frustrated, screaming. It is hard not to take it personally. But I know she is picking up on my impatience and my guilt and frustration.

I was really anxious for the Halloween party we had that evening. My thoughts vacillating between wanting to bring her and try it out and wanting to let her stay with gramma. It all came to a head when she was crying for waht seemed like no reason and I lost it. I went in my room and screamed and cried and punched my pillows. hard. And old fashioned tantrum. sometimes that helps.

I couldnt bear to not bring her so we did. Gramma graciously offered to be a back up plan in case things didnt go well. We had her Step by Step recorded with "trick or treat" and took her to the party. she did well for the first 30-45 minutes but then wouldnt eat her dinner and started with the screaming and knocking things over. Before it escalated (and well before trick or treating) I quietly took her to grammas.

our friends are all so awesome and totally embrace her and her quirks. they talk to her like they talk to their own kids. they have been there since she was born and long before that too. so that helps. but i cant tell you how hard it is to not be able to take your first born child trick or treating at age 4. We took Nolan and he loved it. He carried his treat bag the whole way and said trick or treat and thank you at every house. He even went inside some houses. All the kids were so cute, so excited, so sweet and I loved being there to see it. But it also made me ache inside. my heart ACHES for it to be that way for my daughter. for our family. But it is not. and that is clear. There is that damn clarity again.

I guess what Im trying to say is that while I have all this wonderful perspective that I am thankful for, it can get clouded by the clarity of the big picture. does this even make sense? who knows.

Avery's Story of Rett syndrome

Avery was born via C-section on 07.08.06 after 41 weeks and 3 days-She wasn't

ready to come out! But we were so ready to meet her. I'll never forget my husband

telling me: "it's a girl!" We were so overwhelmed-with love and anxiety but she was

an easy baby. She rarely cried and was very independent from the beginning.

Because we were first time parents it wasn't until Avery was about 8-9 months when

we first noticed she wasn't meeting her developmental milestones. Her pediatrician

told us she was fine. We weren't really ready to accept anything was wrong at the

time so we didn't get her started with Physical Therapy until she was 16 months.

After 4 months she was walking. She had inserts in her shoes for ankle stability and now wears arch support orthotics. We had some basic genetic testing that came back normal in spring of 2008. Rett was mentioned but she didn't seem to "fit" in that category so we put the test off. She was evaluated by Early Intervention at the Regional Center of the East Bay (ironically where I used to work!) in June 2008 and was denied.

We got her re-evaluated in November of 2008 and she qualified. She received Physical Therapy, Occupational Therapy and Speech through EI from Jan 2009-June 2009 and now receives these services through our school district. Avery's favorite part is the school bus!! From the age of 2-3 she would have meltdowns out of nowhere-inconsolable crying, screaming and crying in the middle of the night. We had no idea what it was-hunger, pain? It was Rett syndrome taking her away from us. Just prior to her starting school, right around her third birthday we noticed her repetitive hand movements. Deep down I thought it was Rett syndrome-but I ignored it. Chalked it up to a sensory thing. Our neurologist felt differently and suggested it might be time to test for Rett. I was devastated. We didn’t want to know. From what I knew about Rett, she was going to end up severely disabled. I think I cried for 2 days straight and we hadn't even done the blood work!

On November 9th, 2009, after I had convinced myself the test would be negative our whole world changed as we received the news that she had tested positive for Rett Syndrome. We were shocked and sad but mostly relieved. Even though it is extremely difficult, we now know what we are up against and are going to fight it every step of the way. We have a large group of amazing and supportive friends and family who all care about our special little girl as much as we do. This journey with her has given us a new perspective on life and the importance of things most take for granted. Avery has a determined spirit and tries so hard. She has made incredible progress with walking and continues to improve (can walk up two stairs without holding on! climbs into the tub with a little help!). She also tries so hard to communicate-at one point she had 25-30 words/word approximations but they are all gone now due to her continuing regression. She loves to be in the pool, push her baby stroller, look at magazines, eat anything and everything, dance, be with her friends at school, ride the bus and torment her little brother! She has the best giggle, gives great hugs and has an amazing dimpled smile that melts our heart about a hundred times a day.

Rett syndrome is caused by a mutation or deletion on the MeCP2 gene and is mainly only found in girls (it is X chromosome linked) although there are a handful of boys out there. Avery has a deletion at the “end” of the gene and that makes her symptoms less “typical” but it still causes a host of issues. Many girls are not able to walk or speak at all. Many have uncontrolled seizures, feeding issues and other health problems. Avery is prone to having seizures but luckily we haven’t had to deal with that yet. She is also prone to developing a heart condition that can cause her to die suddenly. Avery will have EEG’s and EKG’s every year to check on these issues. She is constantly moving her hands together in a repetitive motion. She screams a lot and cries for reasons we have yet to figure out. We were so lucky to have had her call us mommy and daddy but she no longer able to say them. The only word she says now is BUS. She is 4 years old and still in diapers. I spoon feed her all her meals as she is now unable to feed herself. It is so hard for us to be around children her age-to realize all that she cannot do and will not do unless a cure is found. All of our dreams for her have been crushed. She will never drive, fall in love or get married.

However, there is a lot of hope! Researchers have reversed symptoms of Rett in mice! They are working diligently to figure this out as we speak and when they do it will open doors to a host of other disorders such as autism and Parkinson's. I recently chaired an event called a “Strollathon” to benefit the International Rett Syndrome Foundation and Katie’s Clinic for Rett Syndrome at Children’s in Oakland. The one mile stroll will took place at Arrowhead Marsh in Oakland from 1-4 on 10.03.10. Over 350 people came out to walk and stroll with us and we raised over $71,000!

We have felt so much love and support from the Rett community and are determined to raise awareness and money to fight this devastating disorder. We hate Rett syndrome but love our new Rett family!

If you would like to read more about Avery check out our blog:

www.therobertsonstoday.blogspot.com

and more about the strollathon:

www.firstgiving.com/norcalstroll

the anniversary of "that" day and other surreal moments

this picture was taken almost exactly one year ago.

it's coming up. the anniversary of "that" day. the diagnosis day. this time last year i had pretty much convinced myself that Avery was going to test negative for Rett syndrome. anyone i talked to about it was convinced as well. she couldn't have it. no way. but on november 9th we got the call. she had tested positive. i've been trying not to think too much about it. it's amazing what your mind can do to protect the spirit.

had a little iep meeting today. we needed to change avery's eligibility code from "mental retardation/intellectual disability" to "orthopedic impairment". it's the correct code because no one can prove that she is in fact disabled intellectually-plus, this opens her up for more funding making it a lot easier to get equipment and other things for her sensory needs etc. which is great. in order to change it, they needed a copy of her genetic test results. so I sent one in. and there was a moment in the meeting that I picked that piece of paper up and looked at it. and it felt like i was looking at some other person's life. not mine. not Avery's-and I said "it's all still so weird" and her teacher said "what is?" and I said, "that Avery has Rett syndrome". i mean i still really cannot believe it. it was like an out of body experience sitting there in that room.

prior to the meeting i went and observed avery in her classroom setting. i didnt cry watching my little girl needing a special chair on the potty or needing full hand over hand assistance to complete her art project gluing a construction paper monster or while she sat in an ugly chair with a bib on and a special bowl to eat her applesauce. i didnt cry when it took her three tries to throw away a paper towel or when she had to communicate using cards with icons on them attached to a binder with velcro. i was so proud of her for doing all that. but so sad too. why does she have to work so hard? why are we sitting in this class? why isnt she in a typical preschool and having play dates and sleepovers and going to disney on ice? why is this our life?

it's surreal.

in the meeting, after i said it's still all so weird, i reminded her teacher that it hasnt even been a year. that it will be a year on 11.09.10. and she said "i imagine that must be a big day for you" and i said yes, it is. but, i added-im not sure how im going to feel that day because yes, everything changed -but really for the better. her diagnosis gave us a reason. we finally had a direction and a road to walk down. with lots of help along the way. so i smiled about that. im hoping to be smiling on the 9th too.

phew!

it's over! we did it! we had a busy weekend with Avery's study appt on Saturday and the Strollathon on Sunday! (Saturday was Nolan's 2nd birthday - we will celebrate that on the 10th)

I was really looking forward to Avery's study appt with Dr. Skinner and the team. Avery was enrolled in the study as soon as we got our diagnosis and our first visit was back in March. I met several families that weekend but it was all so new. Such a surreal experience. This time it was so different. So comfortable. So many faces I recognized from prior meetings and even from facebook. We ran into the Layton's, whom we had met in March and we feel so close to now. Leah and Avery had fun taking turns eating fruit and being silly. It was strange to sit with Maren and think we have only know each other for 6 months? And we have gone to Vegas already? wow.

So, we take Avery back to be weighed and measured first. And by measured I mean MEASURED. Not just her height but her bones! She hates this part. lots of screaming and kicking. I was surprised to find out she had grown about 2 inches but didnt gain much weight so her BMI had dropped a little. It is just over 14%. Once girls with Rett go below 13%, alternative feeding methods are discussed. So Im thinking of trying dairy with Avery again. We took her off b/c she was getting eczema. So i gave her yogurt tonight and we will see. Next we got to see Dr. Skinner who is a geneticist from SC. He is fantastic. So sweet with our girls. And just a great man, so smart but still able to relate to parents. we invited another mom (who was visiting from St Louis and planning to open a Rett clinic there) in to our appt with us. A woman I had JUST met. But that's what this family is like. Instant connection. We also got to meet with an orthopedic surgeon from Alabama. He told us that Avery had great muscle tone and that we didnt really need the inserts in her shoes. He loved the way her feet looked and was not concerned about her minor pronation. So we might try to take them out and see what happens. Then we got to go talk to Judy the communication specialist! She offered Avery a chance to use an eye gaze computer but unfortunately Avery was ready to leave. She was done. And I dont blame her. But I got lots of great ideas and feedback from Judy. More on that later! So we left. And as we were leaving we saw all of our favorite people-but off we went. We knew we would see them all the next day-at the much anticipated STROLLATHON!

that little goose at the Study

We showed up to set up with a packed car-I literally had tables millimeters from my head. the weather was WEIRD. clouds and sun and wind and sun again. but we made it.

we didnt know what to expect. we had 140 or so registered online. and we had 360 people! that count included children and babies, but STILL! 360? Wow! I counted 18 girls and women with Rett. Amazing.

im so thankful for all the help we had from some wonderful rett parents and siblings. we had incredible volunteers and committee members. we just couldnt have done any of it without each and every person we had. we had tons of food and drink and awesome faeries who face painted, music, fun crafts and temporary tattoos!

As 2pm approached I knew it was time for me to say a few words. this is not my favorite thing to do. i honestly would feel more comfortable getting a root canal than speak in public. so butterflies were making their way around my tummy. but I had to go. so up on the stairs i went and looked out to so many people all looking up at me. as luck would have it-we had no microphone and it was windy so Im certain only about 7 people heard what I said. that made it easier. and i didnt cry. i dont remember what I said as it was not at all what I had prepared but I did it without my voice even wavering. Im really proud of myself for that. I made Paige and Red stand up there with me. Im such a chicken.

Then we took some pictures and got ready to Stroll. I almost lost it at that point. Seeing all the friends and family that had come and and were wearing our team little goose hats (in orange and black for our Giants!) really blew me away. they were all standing with us in our fight. with us. it was too much. but i pulled myself together and walked. and we talked and laughed and met people and introduced friends to family and vice versa.

Our stroll was a "down and back" style stroll so when we made the turn we were walking back the way we started and the rest of the group was still coming...high fives...smiles....waves. so much love. and the sun had come out.

team little goose was nearly 50 adults strong. We had 8 people with fundraising pages and as of today the team as a whole has raised $16,293.89. Another team, Avery's Fan Club raised $5475.00. thats a ton of money. it gets us much much closer to a cure.

team little goose. pure love.

*pictures by Debbie Lee*

for more pics, go here:

http://picasaweb.google.com/debbie9727/RettSStrollathon10310?authkey=Gv1sRgCJL2me2B8ZDitAE&feat=directlink#

quick update before the busiest weekend of my life!

I have barely had a second to think lately b/c my brain is in its normal protection shut down mode by not allowing me to think about ANYTHING because I have so much going on! that doesnt even make sense but Im sure you know what I mean, right?

This weekend is going to be absolutely nuts. Its crazier and more packed than my wedding weekend!

Friday night dinner with friends.

Saturday morning Avery has her study appt. which we are really looking forward to! We will get to see Dr Skinner who is awesome and it will be interesting to hear his thoughts on how Avery has changed since March. Plus we get to see our Rett family who in just 11 months we have gotten to know so well.

Saturday night another dinner with friends. A huge dinner party of 24. Im making butternut squash soup shots! The theme of the dinner party is a local organic harvest dinner. When I will will get to the farmers market Im not sure.

Sunday is the Strollathon. We have been planning for months and here it is. I think we have it all taken care of and that everything will go smoothly. I am warning any friends and family that will be joining us-I might cry when I see you or cry the whole day. Actually Ill definitely cry when I see you. Its highly possible Ill cry a lot. It's overwhelming to think of the support we have gotten and all the people that will physically be there representing Team Little Goose. I hope I have enough hats! It should be a really fun day. We have already surpassed $61,000 in fundraising-so Im REALLY happy with that. Team Little Goose has over 13K!

So anyway. We are up to our eyeballs in behavior therapy! PECS and puzzles and new toys and lots of hard work (and candy). Avery has been doing amazingly well. This week is the first real "work" week with her awesome therapist. She definitely is adjusting and there has been a lot of fighting and screaming but today went very well. Avery started the day by going pee on the potty! then when she got home from school she peed on the potty again! (we are taking her every half hour or so) and the next time she went she pooped! Its pretty exciting and the Starbursts dont hurt!

We had a visit from the AAC specialist from the district today too. She gave me some great ideas for using Avery's Step by Step in the community and for other situations than just back and forth to school and home.

i feel like now we have a better connection to what is going on at school and can do some of those things at home. Her new OT and PT seem wonderful and have been communicating with me so well. Her ST is the same and is still awesome. Of course-teacher Diane is the best as usual!

So still working out a few kinks with Avery, lots to learn and try and make part of a new routine...

I have a cute video of Nolan to post soon too-have to get it off Red's phone first!

thats all for now...more after the 3rd!

so much going on

there has been a lot going on here. mainly me trying not to think about the stress that is the Strollathon! I'm actually really NOT stressed about it, but that is making me stressed. Im pretty confident that its all going to work out very nicely. plus we have over 54K raised! not too shabby. Im completely blown away by the amount of generosity in the world. team little goose is going to be at least 40 people strong. I might just sob through the entire thing!

A few highlights of the last week or so:

Went to an awesome couples baby shower for some good friends on the 11th. I thought it started at 7. We got there at about 7:45 and on the way there I realized I wasnt so sure about the 7 start time. Called the sitter to ask her to look at the invite. It started at 6. I was mortified. Luckily it was mostly really close friends and they were very gracious about it! it was a lovely party!

I got monday night off and went to dinner with two very lovely ladies and had three very delicious margaritas. It was a fabulous night.

Had a Stroll meeting with Paige, without whom this Stroll would be a complete disaster. Watched the Giants take first place in the NL West by beating the Dodgers.

Took Nolan back for another semester of Music Together.

The Buccaneers went 2-0. For the first time in FIVE YEARS.

Went to the lafayette art and wine festival. with the kids. Wait this is supposed to be about the highlights....

played nine holes and shot a 63. Thats REALLY good. for me.

ate delicious home cooked burgers at Gramma's.

Signed the docs (again) for our refi. Pretty sure thats over.

Saw Willie Nelson with fantastic friends at a beautiful venue.

And mixed in between it all-Avery went pee pee on the potty at home SEVERAL times. and pooped on it at school! She is saying mommy, daddy, and buggy again! Her medication seems to be working. she is no longer doing all the opening and closing of drawers and doors over and over. she has been trying to play with toys. she has been sitting with her books. she isnt drooling. this week marks the beginning of some behavioral therapy-we have been gradually doing some and using a new PECS book. She uses them at school so she is familiar-but Im so impressed with how she is using her book independently! next week the AAC specialist from the school district will be coming to observe her at our home and we are moving towards getting some sort of speech generating device!

MediCal was finally approved! IHSS is coming for a home visit tomorrow. If we qualify for IHSS, that will mean that I can be reimbursed for certain things I have to do to take care of Avery-basically things that a typical 4 year old would be able to do on their own. We will see. Here are some pics!

they made me do the beer bong!
cozies!

a pretty good day

Sissy and Poppa leaving the club!

Every so often we get brave and we go meet poppa at the club for breakfast. Ok, not THAT brave because they know us pretty well there and usually there aren't many people dining at 9am in the clubhouse so its pretty safe for us. Baby steps!!

It has been a while since we have been and I was nervous to go with both kids-its always a difficult juggling act trying to get food into mouths and not on the floor and eat your own food at the same time! The kids love to see Poppa anytime and they were both really happy to see him there.

I have gotten smart and I order the kids food as soon as we sit down so they don't have to wait too long. Avery and Nolan both used booster seats today-first time out of the restaurant high chair for Nolan! He dug it. And he was really good-and not too gross. Besides the time he dipped his bacon in the butter dish.

I bet you can guess what happened with Avery-- NOTHING! She was awesome. She was QUIET. She didnt drop a morsel of food on the floor. She didnt throw any plates or utensils. She didnt SCREAM. It was wonderful.

And later we went to Target and she was GREAT. if not for the arm brace, the constant tapping of the cart handle and the weird things she says (gy-yung gung! bung-ge-dung!) she seems like a regular old kid! We even ran into some friends and she was totally calm during my stop and chat with them. All in all, a good day. yay for that.

Make photo slide shows at www.OneTrueMedia.com

Three in a row?

It's really true. Avery has been amazing for the past three days. Amazing. I haven't once lost my patience. And that is a straight up miracle. It started on Sunday when we at the last minute decided to take the kids to the zoo. She was great in the car. Even though we stopped on the way and took forever getting there. she held our hands and walked the whole time we were there. She didnt scream once. We saw the alligators, the bats, the reptiles, the tortoises, the monkeys and the tigers! She tried to drop to the ground once while waiting for the train ride but we got through that without incident. She got a teensy bit antsy while waiting for the merry go round. But we got on and she waited patiently. She rode so nicely and then we headed back to the car. She giggled in the car home. Red and I kept looking at each other like "what"? We felt like a regular old family. It was awesome.

What is the difference? Is it school being back in session? Is it the medication? Is it just Rett syndrome letting up a bit?

What else is awesome? She is saying DADDY all the time again! And a few MOMMY's too! Lots more giggling. Lots of hugging Nolan. Lots of eye contact.

The behaviorist is getting to work with our new "behavior tutor" and brought us a new PECS book today with actual photos that I took of Avery's stuff. She used it already tonight to request goldfish and her sippy. And the bus-we will have to make sure that isnt always a choice! Im excited for this and excited to have someone to keep me on task and keep me honest about actually doing what Im supposed to do!

Im hoping for lots of more positivity!

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!!!

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.

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.