Friday, November 25, 2011

working girl

Back in 2006 when it was time for me to start thinking about finding child care for Avery so I could go back to work,  I just couldn't do it.  I remember the day I started looking and just got this feeling that I should stay home with her.  Luckily, we were able to make it work out financially and that was it.  I was done with my full time job-no more paycheck, no more benefits.  After being in the work force for 10 years.  It was weird at first but I have gotten the hang of this stay at home mom thing over the past 5 years.  For a while I worked part time (from home mostly) as a grant writer for a wonderful organization for children and adults with Down syndrome.  I was pregnant with Nolan when I started that job and had to give it up once he was crawling.  But I had gotten the "bug" so to speak.  I knew I wanted to get a job again once the kids were a little older but I really had no clue what I wanted to do.

Enter Rett syndrome and Katie's Clinic.  ( you can read about our very first visit HERE.  )

Shortly after that first visit I got up the nerve to mention to a few key people there that if there was ANY job I could do for them, I would be more than willing and able to do it.  Fast forward about a year and I am asked if I would be willing to take the coordinator position once the current person (the amazing Pat!) retired.  The question hadn't even been fully asked before a resounding YES fell from my lips.  I became an official clinic volunteer shortly after that and over the past 6 months or so have gotten to know the amazing group of people at the clinic.  About two weeks ago, the position was finally posted and I applied.  On Tuesday, I got an email and I am starting next week!  It is a 24 hour a week position for now, but the plan is to increase it a bit in the future.  Ill be taking intakes for new families, scheduling clinic days and coordinating the Natural History Study in March and October.  I will likely also be doing some speaking to schools and some grant writing. 

Im so excited because I know this is a job I can do and do well.  Im nervous to learn all that need to learn in a short period of time-but I know that the team will be there for me and help me out along the way.  Life is going to change a little and I cannot wait to get into a new groove.  I just couldn't be happier-Im going to work for a fantastic clinic at a renowned hospital with incredible people doing game changing stuff for families like ours.  sounds pretty darn perfect to me.

Wednesday, November 23, 2011

i cried again while watching nolan color with crayons. he can color. with ease. and he can tell me what he is coloring: "a bounce house", "a tambourine", "that's you, mommy".  my voice cracks as i tell him how beautiful it is or what a good job he is doing. and tears well up. and its just so silly to be sitting there in awe of my 3 year old coloring.  but i know why i am in awe, why i dont (and wont) take it for granted that he can color.  it is because his sister can't. she cannot hold a crayon, let alone make a mark on paper without a lot of help.

i ask him "who are you most excited to see tomorrow" and he rattles off a seemingly random (but probably not) list of people he knows we will see for thanksgiving. then adds a little commentary like: "they are really nice to me" or "i'm going to show her my shoes and she will really like them!" while making the cutest little facial expressions. and im in awe.  because his sister can't do that. she has no words.  none.  at least none that she can speak.  i know she is thinking and has things to say-but nothing but screams and yells come out.

every once in a while i hear nolan yell "i have to go potty!" while i hear his little feet stomping across the floor on the way to the bathroom.  so easy.  and yet i still have to check Avery's diaper to know if she is dry or not.

today, after i braved the grocery store with both kids, i put avery in the car while I loaded the groceries in the back.  while i was buckling nolan in, i said to avery "can you climb in your seat?" and nolan said, without missing a beat: : "mommy, she can't! you have to put her in! she doesnt know how!" and I said, "you are right, buddy, I do need to put her in, but she does know how-she just cant."

i know this is a common theme in my posts-the fact that i live on this fine line between hating the fact that my daughter has rett syndrome and loving the perspective it gives me.  one of these times Ill be able to articulate it much better. but for now, i just feel that both of my kids are awesome in their own ways.  could it be more awesome if Avery did not have rett syndrome?  maybe...probably.  but would I know it?  probably not.

Sunday, November 20, 2011

flower girl and ring bearer!

A couple weeks ago, the kids got to be in their Uncle Charlie's wedding!  They did great-well, Avery did great-Nolan was kind of a diva but we made it through!  I walked with Avery down the aisle and Nolan went with Gramma.  

                               The bride (Kelly) and groom in the limo after the ceremony!
 Avery was pleased with her self and did so well getting her picture taken by the professional photographer.  I cannot wait to see how those turned out!
 Nolan partied all night!  Avery went home with Alexis before dinner was served-Nolan stayed with us and worked the room.  He also broke a glass and Im sure caused all kinds of havoc.  Red and I were up at the head table so we just let him loose and hoped for the best.  He was having fun with his cousins and just looking too cute in his mini suit!

Thank you Kelly and Charlie for having the kids in your special day!

Wednesday, November 9, 2011

two years.

Just about this very moment two years ago, I was outside with the kids when my phone rang.  I didnt recognize the number at first, but then did once I missed the call.  The neurologist.  My stomach did a couple flips. I called back and just like that-everything was different-but also everything was just the same. 

It is strange that prior to that call-the one that made me cry so hard I could barely ask all the questions I had-it was just a regular evening and then after the call, we had Rett syndrome.

In a matter of minutes.

And now two years have passed just like that.  And it also feels like it has been closer to 5 years because our lives have become so full.  True, I hate everything that Rett has taken from us and all the other families dealing with it-the dreams that have been shattered, the daily heartaches, the struggles- all of it.  But I have to say it has given us much more than it has taken away. 

No, I have not come to a place of full acceptance yet, I don't know that I ever will.  And I still get mad-really mad- about it all.  And I would trade it all if it meant Avery could have a "normal" life-whatever that is exactly.  But....AMAZING things have happened as a direct result of Avery having Rett syndrome.  Donations from all over are the most obvious of the amazing things.  But there are many many other things that happen-wonderful people who would have never crossed our paths are now as close as family members.  Family members are even closer than they were before.  Old friends have stuck by us and have gone above and beyond.  The list just goes on and on.

yesterday this was my facebook status (it got 45 "likes" and 20 comments) :

two years ago tonight, I had no idea how ours lives would change the next day. tomorrow is diagnosis day and we will celebrate-celebrate the triumphs, the friends, the lessons, the awareness, the funds raised, the research and all the goodness that has come out of this ugly thing called rett syndrome. we will celebrate. ♥

So take that Rett syndrome! 

Tuesday, November 1, 2011


Im sort of afraid to jinx it, but I feel we very well could be turning something of a corner with Avery these days.  It might be that Im still recovering from a very relaxing weekend in Vegas with great friends-but I think she is really a little different.  Maybe she is tired.  I hope it lasts whatever it is.

Yesterday was one of those days that I was dreading.  I had to be at two Halloween parades within 30 minutes of each other and get treats to both Nolan and Avery's classrooms.  I stayed at nolan's school and waited till the parade started.  I watched him in his little pizza costume the class made and then waited to get some pictures at the end.  It was almost 10 and I was so afraid I would miss Avery in her parade. I made it over to her school at around 10:08 and just as I got to the upper playground, I heard her class being called out.  I did get to see her parading with her aide.  She didnt see me though but I think it was better that way because she might have gotten upset.  I fugured out where her class was sitting and made my way over there.  This parade was intense.  Like 100% participation.  Even the teachers went all out.  One dude was on stilts!

I got to meet Avery's wonderful aide and heard that Avery had been having a great day.  She was tolerating her batgirl mask and everything.  I got to join the class after the parade for some treats and see some of the classroom action.  Avery has her own little spot in the classroom with a fantastic chair that was ordered just for her.  I saw her working on some things and she was getting it all right! Then I heard she used the potty in the morning!  Then I saw her use her step by step button to talk to her friends.  It was awesome. 

But I was still a little nervous for the Halloween party we were planning to go to.  Last year, we had to take Avery to gramma's after it became clear she was not going to last at the party long enough to trick or treat. She was screaming a lot and hitting little kids trying to get their food/candy.  I didn't even blog about it.  I posted pictures but had nothing to say. 

We get together with the same people every year but rotate houses-this year there would be some new families that we didnt know and a ton of kids.  I was sure it would send Avery over the edge.  But she was good.  She was awesome.  She was quiet.  She ate her food and didnt knock any thing over.  She smiled and giggled.  She got excited when we said it was time to trick or treat.  She loved trick or treating.  She held my hand and laughed and more than once put her head IN the candy bowl.  I felt like a "typical" mom.  It was magical.  Nolan was running up ahead taking as much candy as he could from every house.  He loved it but we need to work on his manners for sure!  It was a great time.  I kept leaning down to tell Avery "Im so proud of you, sissy.  You are doing so great!" and she would just smile and march on down the road.  We got back to our friends house, had a few bites of candy and went home.  As I was putting her to bed-waterworks.  I couldnt help it.  She was so good and made me feel so much like a regular mom.  And I just lost it.  Those are the best kinds of cries.  I was so happy for her, and for us. 
Today has been a pretty great day too.  And Ill leave it at that...with some photos.
 nolan at school parade.  his class went as pizza!
 Avery as batgirl at her school
 Avery and some of her friends just before trick or treating!
 Nolan pre trick or treating. I know I need a better camera.
 Can we get a move on?