BFF's

Fall break this week so time to hang out at home with Z.  Watching movies is one of her favorites pass times.  Yesterday we were watching "The Sisterhood of the Traveling Pants" and I found my self teary-eyed.  She has always liked movies with "real people" rather than cartoon characters, which is fine with me.  I used to fall asleep immediately when I went to cartoon movies with Christina.

I was struck when we were watching "Sisterhood" that I have friends and family that I know would drop everything and come if I needed help. I have friends and a sister and a husband that I can call and tell them I need them and they would come, no questions asked.  And I would do the same for them.  Z and all her friends that have disabilities don't have that experience of having a friend that you know would do anything for you.  There are many reasons why she will never experience a "sisterhood" and it seems sad to me.  She is probably not aware, can you miss something you don't understand?  But it's another life experience that will pass her by.

Beside feeling sad for her, I realized that it's another instance where Z depends on us to make sure there will always be someone to take care of her.  And we will.

Random and Miscellaneous

I promised myself that I would start writing again when Z started school.  This is the first time ever that she has asked about school during the summer, she was excited to go back to the Deaf School.  Residential treatment is done, no traveling back and forth, just a normal start to the school year.  There was a new teacher but still a great start!  But just a month into the year, a teacher change!  I swear Z is a magnetic for things to go crazy at a school.  Z handled the second change well and I'm sure it will be fine but another teacher, really!

A week after school started Dave and I left on vacation.  We went to Vancouver, Victoria and Seattle.  It was a great trip with our long time friends.  We saw the sights, ate too much, walked until our feet hurt and for me it was too many boats.  Butchart Gardens is amazing and downtown Seattle was very fun.  I made them all go to the Chihuly Glass exhibit near the Space Needle and it was a so gorgeous, we all loved it!  But Dave and I decided that our next trip is back to Maui!

We were back one day and Z, O and I were off to the White Mountains for the Hands and Voices Family Retreat.  We were "chicken" about staying in the "dorm like" accommodations at the the camp so we got a hotel room.  Z had positive experiences in the kids activities and loved the "go carting" with O.  I did not appreciate the memento I got on the way home, a speeding ticket.  Z did not handle the car ride well and while she was tantruming in the backseat, I got caught by a speed camera. Of course, it would never have happened if she had been her sweet, happy self, right?

Home for a couple weeks and then again Z, O and I are off again.  This time to Dallas, TX for Z to have more GI testing that isn't done in AZ.  We couldn't have done it without O.  She loves Z, handle behavior automatically and Z relies on her for signing.  Bad behavior again on the plane, go figure?  But O and I agreed, it was a "piece of cake", only a two hour flight compared to the five hour flight from Florida.  Everything is relative!  It was good to get the testing done and the doctor did find some issues and still waiting for more results.  It was not fun for any of us.  Poor Z had to have a "clean out" before the testing so we had "poo" flowing freely.  O was a good sport, a great help and we all came home sleep deprived for sure.

In the mean time, Dave had two trips.  His mom had shoulder surgery so he headed off to Madison to be with her.  Home for one day and he's off to Denver for a work training.  Dave in Denver, Z and I in TX and both our cars parked at the airport!

We are all home now and not wanting to leave.  It's amazing how all three of us are looking forward to our routine at home.  School for Z, work for Dave, and what for me, not too sure?

Happiness and Joy

I think all parents would say they " just want their kids to be happy" in their lives.  We're no different.  Dave and I have often talked about how to tell if Z is really happy or if she's manic?  She can get very excited and hyper about her favorite things, going on a trip, eating out, Christina visiting.  Sure, she's happy but there's always this "manic" quality about it.  I've often wondered if that's the best it will be for Z?  I wonder too, if her medications have "dampened" her emotions?

Many times she can be truly excited about something small and it's very genuine.   You get a huge hug and kiss if you get her favorite snack at the grocery store or if you pick up a new shirt at Target or she gets a card in the mail from Grandma with a dollar in it.  It's an innocent, genuine thank you.

Recently, we have seen more and more of her truly joyful side.  There's no doubt it's real happiness and not just the manic side of her mental illness.  It's both sad and hopeful.  Sad that it doesn't happen very often and sad that it's a relatively recent experience. Hopeful, that there is joy for Z.

I first got a glimpse of her genuine, happy side on some of our last passes when she was in residential care.  I tried to capture it with some pictures because it's hard to even describe, we just expect young kids to be happy.  On one of our passes we were having lunch at a hamburger place that Grandpa Archie liked in the Midwest. The restaurant has these silly paper hats and Z really "hammed " it up for me with the hat.  She was so cute and funny and she has this very genuine giggle and laugh!  That laugh is so different from the stressed, forced manic laugh.  You have to know her well to really understand the difference.

This weekend was Fiesta Skate, the largest figure skating competition in AZ.  I've been involved in it for 25 years.  The last few years our Special skaters have participated in the competition.  Some years Z has been in the event and others she wasn't able to skate due to her mental illness.  This year she has been waiting for weeks for the competition, following how her dress was coming along and practicing every week. She would ask each morning if it was the day of the "skating show"?  Saturday was finally the day.  Z was so happy and she continued that genuine joy for the entire morning through getting ready at home and waiting for the events to start at the rink.  She greeted people at the rink and responded to others with a smile and excitement and giggles.  It's hard to explain the significance of this unless you understand how difficult it is for someone with bipolar disorder to maintain their mood and children have rapid cycles. She smiled through her entire skating program.  She was thrilled with the stuffed animals thrown on the ice after she was done.  She stayed around where all the skaters were gathered waiting their turn and was obviously enjoying the moment with her friends.  She knew that awards and pictures came next and was very good waiting her turn. 

After several hours I could see that she was getting tired and was struggling to maintain her emotions and behavior.  But I had this heart warming, rewarding morning and felt privileged to be a part of what seems to have been the longest period of genuine joy that Z has yet to experience.  I hope that she will have many, many more.  She deserves hours, days and years of joy!