Tuesday, March 20, 2012

tightrope walking

So the big weekend has come and gone.  Clinic all day Friday-we saw 5 girls plus had a few visitors that were in town for the Study.  It was a long but awesome day with great families.  Almost all the girls we saw had been born in the same year and at one point during some down time, the parents sat the girls in a circle-it was a special thing to witness. Once we said goodbye to the last family, we got busy setting up for the study the next morning-I left at 8pm in the pouring rain and treated myself to a delicious meal of McDonalds.  I was already tired.  You know you are done when you break down and head to McDonalds. 

The next day was kind of a blur...the main thing I remember was the strange feeling that exactly two years ago we were checking in at our first study appointment.  We knew a few families and had done lots of our own research and reaching out and felt pretty solid-but the feeling you get in that situation is so odd.  It's like this: this is so cool that all these families are here together for the same reason and they all get it and they all seem to be doing just fine and WHAT THE HELL AM I DOING HERE? IM NOT SUPPOSED TO BE HERE! THIS IS NOT MY LIFE!

There was a new family there Saturday morning.  New to the study and only 6 months since diagnosis. With a little one.  Younger than Avery was when we were pulled into this life.  I couldn't stop thinking about them-about how I saw so much of myself in the mom.  We spoke for a few minutes before they were called back and in just minutes we were crying.  It's the tightrope you walk as a special needs parent-always putting on a brave face while always trying not to cry. 

The day went by smoothly and at the end I got such a treat-I got to go to dinner with Paige (the founder of Katie's Clinic), Dr Jones (our medical director) and the research teams!  That means I got to sit at the same table with some of the finest minds in Rett research.  It was intensely cool to just chit chat with these people about anything and everything-except Rett syndrome.  I also got to try sweetbreads which I have never wanted to try but kind of loved. And I had a Basil Gimlet. YUM.

Sunday was less hectic and we had a lot of laughs.  There were some tears as well. The kind of tears when something just blows you away it is so awesome-like: Dr Jones's son has asked that all of his wedding gifts instead be donations to Katie's Clinic.  I mean....come on.  So amazing.  I looked around as we were cleaning up at all the volunteers that come out year after year-at the Nues family who made this all happen (and have done this TWELVE times already)-at the research teams that travel 8 weekends out of the year to do this study-at the security guards who were so affected by our girls-at the clinic staff who work so hard for all of us-and realize how phenomenal it all is.  I wanted to smile and cry at the same time.  tightrope.

I drove home that evening and just cried.  Sobbed.  Because I was exhausted.  But I was grateful, too.  I was inspired, hopeful and sad all at the same time. I was feeling equally a little guilty and lucky for Avery's abilities. I was also really proud of what we do at clinic and how far we have come as a family.  It's that constant push/pull of opposing feelings that keeps you from falling, I suppose.  It keeps you upright.  But still on that tightrope.

Wednesday, March 7, 2012

feeling the need

im feeling the need to blog...but don't have much-or maybe have too much.  so Ill just give you a run down of the top things going on lately.

shortly after my last post, both kids got sick.  again.  they had just had tummy bugs and then-bam-a week later, they had it again. then Avery had a fever and I could just tell her ears hurt.  I touched her ear and she jumped about 40 feet.  So the next day both kids went to the doctor.  separate doctors. Avery is on her own insurance plan due to her disability which is great-but makes it hard for going to the doctor when both kids need to go.  I took Nolan in the morning and because I HAD to go into work, Red graciously took Avery to see hers-with Nolan in tow.  what a champ.  it was funny when I got home from work that day, he was chopping apples in the kitchen-it was such a role reversal and it was really cool.  It was extremely tricky trying to get coverage for the kids who both missed an entire week of school, but it worked out.

So, both kids had ear infections.  Nolan in one ear, Avery in both.  I was happy that it was something that was treatable with antibiotics and also happy that it was the first time for both kids having ear infections! 

Before and in between all the sickness we:
  • Hadd dinner with some old friends on a Wednesday and new friends on Thursday. 
  • Went to go to a fun engagement party for some good friends with good friends-it was fun to get dressed up and just relax.  
  • I went to go to a baby shower-which morphed into drinks and then dinner and then bowling.  so much fun.  
  • I went on a walk with a new friend. 
  • I got a manicure/pedicure.  And my hair cut and colored. 
  • Went to a fun dinner party with old friends and new friends.
  • Met up with a great friend for dinner and did a little shopping which got me featured on her blog here (toot toot).
  • worked out a lot and worked as much as I possibly could.
Speaking of work-it has been busy.  Im prepping for the Natural History Study which happens on March 17th and 18th.  It is a little confusing because the Study is through the NIH, funded by IRSF and hosted by Katie's Clinic.  So, as the program coordinator for Katie's Clinic, I am the site coordinator for the Study.  This entails keeping track of about 100 families and scheduling many of them in March and then again in October.  Some come twice a year, some once.  I set the schedule and have to communicate it to each family either by email or phone.  I also have to keep open communication with the research teams and connect them with hotels and restaurants and keep them abreast of the schedule. I have to get volunteers and food covered.  I have to work an entire weekend! It is a daunting task. But I did it.  I just hope nothing goes awry.  And while I am nervous, the closer it gets the better I feel.  And Im actually excited.  And proud of myself.  Two years ago exactly, we showed up at our first study appointment, just about a month after being seen at Katie's Clinic.  Now I work there and am the study coordinator for Oakland.  Its pretty surreal.  The best part is that I have been invited to join the research teams for dinner one of the nights and I am giddy over it.  Giddy.  I will get to sit at the same table as some of the brightest minds in Rett syndrome.  Sure, I wish Rett syndrome wasnt in my vocabulary and that I was going to be out celebrating St. Patty's day at a bar in the city-but I really do feel lucky to have this opportunity.  But enough about Rett.

Today something cool happened.  I took both kids to the dentist and unfortunately screwed up with Avery's insurance and she couldnt be seen. But, Nolan went back as planned and did so great.  He went with the hygienist alone and did everything she said.  The dentist came and took a look and he was totally chill. No cavities! Then it was time for him to get his prize.  He disappeared behind a wall and came back towards me-the hygienist is saying "just one prize buddy", because he had two balls, one in each hand.  He walked straight toward Avery and said "I got one for you, sissy".