Sunday, July 28, 2013

firsts...with my second.

when we received averys diagnosis, i knew there were going to be "firsts" we would miss out on with her. and I thought we had already met them through Nolan for the most part. and then last week I took him to his first swim lesson. i wasnt prepared for it to be such a huge moment for me.

our neighbor has a grandson who is about Nolan's age and he was going to be visiting for the last two weeks or so of July.  his grandma asked me if Nolan might like to take a few swim lessons while he was in town and I thought sure-that would be great.  She was willing to take them both (because I would be at work) and I was pumped about it. the price was right and we went to visit and I was impressed. Nice new place, clean, all lessons.  sign me up.

So last saturday we headed out.  we get there early and wait for them to be called. lots of swim lessons are going on at all levels. it is packed.  the kids are so excited. so they get called and head off to their lane.  the grown ups are allowed to go in the pool area but most stay behind the glass and watch from afar. Red was home with Avery and he wanted some pictures and videos.  I wasnt happy with the videos I was getting from so far away so I went in to get closer. 

I sat in the plastic chair and pointed my phone towards their lane.  I took a few photos and a couple videos and it just hit me. this swell of pride and the tears popped into my eyes. they just popped there! and I thought "this is one of those moments. the ones that erase all the crap and the stress and the irritation of young kids" I was so proud. it was awesome to see him in there, following the directions so easily, so athletic. seeing how easy it is for him and how his brain just works. and instead of feeling shitty about never having that experience with Avery it just felt good.  I knew this moment was one of those moments that Ill never forget. It felt so amazing.

then it was over and he rinsed off and got dressed and went to the front desk to retrieve his ribbon.  We said goodbye to the neighbors and got in the car.  I asked him "Nolan what should we do with your ribbon?  It is your first one!" and you know what he said?  He said:  "I want to cut it in half and give half to sissy b/c she couldn't come to swim lessons". 

He will never ever know how he made that day even better with that comment. It all just came full circle. this theme of "getting easier". I am so fully aware that we never would have had that moment if Avery wasn't Avery.
nolan on the left.

Sunday, July 14, 2013


I had grand plans to meet up with our friends and take the kids to the Santa Cruz Beach Boardwalk sort of as a birthday present to goose. So we headed down Saturday morning and met with Colleen, Jared Claire and Chloe at their new place.  We got the tour and had a delicious lunch. Then we followed them to the Boardwalk.  As soon as we got there I was a little worried.  It was jammed. Traffic. Im looking around and realizing that this Boardwalk place is quite the event and a lot bigger than I had expected.  Nolan is pointing out rides and saying "im going on that!" and "Im NOT going on that!".

Colleen and Jared are just ahead of us and we are texting: no idea it would be like this-that parking lot just closed-sorry-etc,  Then Colleen calls me and says "so, this is nuts and I was wondering if you guys might want to go get ice cream?"

Heck yes. Take us to the ice cream place!

Nolan was super bummed.  Avery seemed pretty happy.  We apologized profusely.  Mom and Dad blew it by trying to hit the boardwalk at 2pm on a saturday.  Now we know.  Next time we will do it right.

We get to the ice cream place, order and find a great seat outside.  Avery was so sweet in her stroller-so happy to be fed chocolate sorbet with roasted home made marshmallow on top in the sun. We left there for the skate shop, the surf shop then a walk to the ocean.

it was breathtaking and breath making. Claire and Avery watched the surfers from up above and Nolanand Chloe went down the waves to see it up close.  The tide was in and we got sprayed a little.  Surfers everywhere. Nothing but blue skies. We had to head back but first a stop at the famous Verve for a coffee and some treats.  Can't tell you how cool it was to see Claire and Avery just hanging in their shades-with people that know Claire coming up and saying hi.  Nolan eating a huge brownie cookie-sharing with his sissy and my tiny delicious cappuccino.

We said our goodbyes and got back on the road and I felt good.  Like I could breathe.  Like life was just the way it was supposed to be.

Monday, July 8, 2013

its getting easier

Tomorrow Avery will be seven.
every year (since her diagnosis) at her birthday I get nervous and sad and unsure.  unsure about what to do about a party, unsure about what to give her for presents  and sad about the fact that she will be one year older and still in diapers.
at four-i lost it. at five, we had a great huge pool party and she loved it. so did we. but I still cried.
at six, we were in tahoe-low key with some family-the pool all day then ice cream cake and a couple presents and it was close to perfect. but i was left with some guilt for not giving her a party.

this morning we took the kids to the zoo.  it was great.  we have recently inherited a Convaid
EZ Rider special needs stroller and it made such a huge difference. Avery loved it!  she was quiet and smiling with calm hands. then tonight we celebrated with close family at our house.  Avery had a great cake with purple flowers and butterflies on it and she was super excited to eat it.  I asked her if she wanted more cake or to open presents using my hands and she pointed to the "cake" hand!  Too funny.  We opened her great gifts: Nolan gave her a "special sister" bracelet and she got a "special daughter" bracelet from mom and dad along with a musical hello kitty jewelry box. She got loads of cute outfits too. I think she liked it all but really just wanted more cake. and feeding it to her didnt make me sad

as they say: the pain never really goes away, but it does get easier. 

her cake.

getting ready to blow out the candles

at the zoo!

Tuesday, July 2, 2013

this is the place...

i just spent five days surrounded by people who get it. 
it was fantastic, of course. it always is. always.
im back home and im left with so many feelings.
hope and gratitude top the list 
im grateful.
for the moms and the dads that traveled from far and wide (England, Canada, Alabama, California, Wisconsin) to attend conference to lean on others and to be leaned on
for the staff and volunteers at IRSF for dedicating days and weeks and months planning our sessions and our days and nights
for the researchers, nurses, geneticists, neurologists and therapists who CHOSE this as their path in life (rett fell in our laps against our will and they actually sought it out)
for the many new families that bravely showed up with a smile on their face trying to hide that subtle fear behind their eyes that seems so familiar
for the moms I have bonded with like no other
for the dads, the grandparents, the aunts and uncles
for the siblings that shared their deepest thoughts
but mostly for the girls (and boys) who smile and arent afraid and fight everyday.

and so we fight. we stand tall, we learn, we take notes, we share stories, we laugh and we cry
we can finally breathe and relax and share knowing smiles and "me too"'s and "i know what you mean!"'s.
and we go back home on planes and in cars and through delays and airport mishaps
but we do it with hope


for a day that our girls can move their bodies with ease
for the moment when a scream becomes a word
when the seizures wane
when the breathing becomes regular
when they can taste their favorite food

we are so close because of all of this.
this is the place for hope.