Sunday, December 30, 2012

christmas eve (aka feliz navidad at the robertsons)

For the past several years we have hosted christmas eve at our tiny house.  Growing up my parents always hosted christmas eve and it is one tradition that I would love to keep going for my family.  So even with a small house and an ever expanding family (there are 5 grandkids now!) we still host.  I love it. It is such a special night to me, being surrounded by family and all the festive decor.  This year we had the usual group of Red's family which adds up to 10 adults and 3 kids! Plus me, Red and our kids.  Then we invited our closest friends Brian and Lee Ann, who have two kids.  Then Lee Ann's parents decided to visit from Boston-and her sister! Then Barb asked if her nephew could come too and I said why not!??  The more the merrier of course. This was when I decided that I would do the least work possible and get mexican food, serve margaritas and ask people to bring sides.  It was perfect. We moved some furniture, borrowed a huge table from Red's brother and his wife and made it work.  We sat 18 adults at 2 tables.  The kids had their own table but they thought it was more fun to make a fort with the tablecloth than actually eat. Barb and I had a guac-off.  We tied.  We had so many appetizers and so much food!  Before we sat down for dinner we got a huge surprise.  Santa stopped by!  His sleigh had broken down and he needed a battery!  He came in and gave the kids some candy and little gifts, talked to Nolan about Ulysses our Elf and then took his battery and was off.  Santa was played perfectly by Red's brother MT.  It was one of the many highlights of the night. The kids were just in awe.  Nolan thinks he "saved christmas" and will tell anyone who asks. 

We had a great dinner, then did our "yankee swap" with gifts under $15-they could be funny, inappropriate, useful anything really.  The first gift that was opened was the Richard Simmons sweating to the oldies DVD.  I picked batteries, but they got stolen and I ended up with a Hello Kitty Chia pet.  So much fun.  Nolan ended up with a bank shaped like a poop.  too much.  Then we played "left right enter" a dice game played with dollar bills.  Nolan won the first round ($54!) and we all chanted "put it in the poop!" which was hilarious but I guess you had to be there. 
I loved having my house full of people-all of whom I consider to be my family.  I just wish I had taken more pictures.  Christmas morning I heard Nolan run out to the tree and then run into our room where he exclaimed "santa didnt come!" Then he climbed in bed with us and went back to sleep. 
After we did presents at home we headed to Red's moms place and had more gifts there...along with a delicious breakfast.  The dinner at Kevin and Marthas with Reds cousins and other extended family. It was a wonderful couple of days.  And now it is over-just like that.  I swear it just goes by faster and faster. 

Feliz Navidad!

Nolan and his skateboard from Santa

Avery was having fun too on christmas morning!

one of the tables on christmas eve...see the mini sombreros?
our pretty tree with all the gifts ready

the other table...

fine, i like it.

Yeah I like running a little now.  Well maybe not actually the running part-but the challenge and the way it makes me feel. And the connections it has brought me. And the cool things it has allowed me to do.

Its kind of like rett syndrome.  No, really it is.  Because of Rett syndrome I am stronger, I have met amazing people who will be my friends for life and I have had the privilege to be a part of so many amazing things.

I once was really scared of rett syndrome and didnt want it to be part of my life.  Rett is hard.  Every day.  But, it challenges me in ways I never thought possible.  It forces me to be a better person, a different person than the one that I expected to be. I have to face it-every day-even on days when I think I just cant take any more rett, I have to take it. Some days I take it better than others and I am able to push farther and harder.  Other days I quit, crumble, complain. It is much the same with running.

Im not an athlete, or a joiner.  I never thought I would like running and I never thought I would like running with people.  When I decided to train for the marathon I thought I would do it on my own.  Learn it on my own. I now know that I cannot, and do not want to do that.  It is easier to run with someone. The other person sort of carries you, and you carry them without even knowing it.  I've gotten to the point now where I am able to sort of talk easily through a run and it makes it much more enjoyable.  Same with Rett syndrome.

Doing almost anything with a friend is better than without.  And I know I couldn't get through Rett syndrome or marathon training without my friends, all of you.

The Boston Marathon is quickly approaching.  I officially started on my training plan on 12/5 and have logged over 49 miles--plus some cross training (biking mostly totaling about 16 miles) in between.  It hasn't been easy.  It is cold and wet out there and we have been busy with the holidays.  But no excuses, it has to be done. Kind of like facing Rett every day.

My good friend Lee Ann who is joining me in Boston and is running for Avery surprised me with a Boston Marathon/Team Rett version of "the night before Christmas" when I received this in my inbox the other day.  Thank you Lee Ann!

'Twas the Day After Christmas...
And all through the place,
Our kids played with new toys- dolls dressed in lace.
I in my running gear, sitting on my duff,
Looking at all the piles of open gifts and stuff.

My thoughts were quite simple, they usually are.
I dreamed that Rett research will go really far.
We run for the girls, for the families with Rett.
For the hope that someday a cure will be met.

For the Robertson family- Red, Erica, Nolan and Avery-
For whom a a cure would be delicious and savory.
We run for these girls- some who can't walk
These silent angels, many can't talk

Red & Erica's daughter Aves with a big smile
Whom relatives want to hear talk once in a while
We know she in in there, intelligent, bright.
For Avery we run, for Avery we fight.

On Daniel, on Zenaida in the dark and snow.
Run like you can, run like you know.
On Erica, Kelly, Maren and more
Over Boston's Heartbreak Hill we will soar.

If Aves could talk, "Momma, Daddy" she'd share-
"Thanks for all the hugs, patience and care"
She'd also say "Wow Momma look at you run far!
Of you I'm so proud, most people'd need a car"

Our Garmins are poised, our music ready
Now comes the tough part- the training gets steady!
The training hurts a lot, it won't be easy.
Some days its raining, some days breezy.

We run because they can't, we run because we can.
We'll run Boston in April in front of many a fan.
These girls need our help to spread the word.
That with a cure they'd fly free like a bird.

We'll never give up trying- we'll find a way.
We will uncover a cure for Rett someday.
So we run from a place deep inside our heart.
It's in Hopkington, Mass that we will start.

On Daniel, on Zenaida in the dark and snow.
Run like you can, run like you know.
On Erica, Kelly, Maren and more
Over Boston's Heartbreak hill we will soar.

how cool is that?  

Tuesday, December 11, 2012

Tonight is one of those nights when the tears just come.  There is so much heartbreak in life. And when I stop and realize that there is so much more than my own, it is sometimes too much to take.  Im used to mine.  It is sort of getting comfortable here in my lap-- this living with rett syndrome--this life as a special needs mom that I never expected.

I realized today that my two favorite moments of the day are waking Avery up and watching her fall asleep.  Typically she wakes us up with her yelling but every now and then, like today, I have to rouse her from her quiet and calm sleep.  I hate to do it, knowing Im waking up all the stuff that drives us nuts-the teeth grinding, the hand wringing, the yelling.  But for those first few moments, before her brain switches into overdrive, she is smiling and sweet and quiet and there. This morning I couldn't help but just get in under her covers with her for that brief moment and whisper to her how much I love her. I do the same as the clonidine starts to take effect at night.  I brush her teeth while she lays in bed and let her chew on her toothbrush instead of grinding her teeth and watch her eyes get heavy and her hands stop moving.  It is so precious to see her still.  To see the girl she is supposed to be.  The one she would be without those 23 nucleotides missing on her damn mecp2 gene. I imagine the conversations we might have and I miss my daughter.

But she is here.  She is healthy.  She is alive and living it up.  She yells when she feels like it.  She trots around when she is happy and she laughs like no one I know.  It is the best laugh-hands down.  She faces what must be the most frustrating way to live with a smile nearly 100% of the time. Really.

We have lost too many girls this year to Rett and the complications that come along with it. Too many.
One just today.  A 30 year old woman who lived nearby.  I never met her or her family, but I didnt have to. I know them. I read the news and cried at my desk.  A month ago a 5 year old in Maryland passed away from Rett complications.  In September, an even younger little girl passed away after a tough battle in the hospital.    In August,  another.  Karly, whose blog you can read here-inspires me still-reminding me that my goose  is in there.  So in there.

It is hard and it is sad.  But she is here.  And she is happy and Im working on trying to be more like her.