Wednesday, December 29, 2010

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.

Monday, December 20, 2010

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!


Saturday, December 18, 2010


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....

Wednesday, December 15, 2010


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!

Monday, December 13, 2010

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.

Friday, December 10, 2010

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.

Wednesday, December 8, 2010


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?