Naomi's First Vacation

Naomi had a big week last week and took her first vacation alone to Nana and Grampy's!  It started last Saturday when we came into Pittsburgh for a picnic with Anne's college friends.  It was nice seeing everyone with their families.  Naomi stayed for a while and then Nana and Grampy came to pick her up to take her swimming.  Lydia had to stay with Mom and Dad and played in the grass.

We stayed at Nana and Grampy's overnight where everyone was a little silly

The next day we went to the zoo to look at a more permanent arrangement for Naomi.

We decided to keep her and had a nice day at the zoo.

We went home that day but were back in Pittsburgh on Thursday for Naomi's doctor's appointment in Pittsburgh.  They changed her feeding tube and the nutritionist told Anne that we were going above and beyond giving Naomi a healthy blended diet.  

Naomi then started her vacation!  She stayed at Nana and Grampy's while the three of us went back to Hollidaysburg.  The first night Naomi went to the boat club where my parents have a boat.  Because of all the rain, the boat was not in, but she had a great time swinging.  She went to bed like a good girl and was ready for the new day at 6:00.  That led to an early morning walk with Nana.  Notice it is still a little dark out.

She got a chance to read books and act silly.

Playing with Nana and Eeyore

And getting her hair done by Nana

Then it was back to the Zoo where Naomi always seems to have a good time.  I think she does like the animals, but she also likes to walk and have people around too.  She likes to go go go just like Nana and Grampy.

So pretty with the bow in her hair

Excited to be there - this is Nana's Hairdo...

Naomi checking out the Elephants.

And the goats with Grampy's help

After the time at the zoo, Naomi went back to the boat club and did some more swinging and lauging and playing.  Then it was time for bed with some more silly time.

The next morning Naomi was up early again to play with Nana and Grampy.  She really likes the skylights in the house!

She went swimming with Grampy and then made the drive back to Hollidaysburg to see her parents and sister.  She had a wonderful time and we had a nice rest.  Naomi is definitely looking forward to her next vacation.

Reaping

I think about death a lot.  The Grim Reaper shadows me.  I'm troubled in a way I don't think it should at this point in my life.  I have two young children.  My life should be full of life, of growth and potential, of possibility.  But one of my young children lives in the shadow of the Reaper's scythe.  It has thrown me into an early midlife crisis.  Well, somewhat early midlife crisis.  I am middle aged, uncomfortably hugging 40, after all.  I am hyper-aware of my mortality, and of that of my husband and my children.  When I look at Lydia I see a fragile life, easily snuffed out, rather than a baby full of health and possibility.  I see an old lady, withered and bent.  It all goes by so quickly.  I feel hemmed in by the certainty of death and loss.  The growth of a child and the passage of time should be bittersweet, I think.  The bitterness coming from the loss of a baby as that baby becomes a child, and the loss of a child as that child becomes an adult.  The sweetness coming from the excitement of seeing them grow and accomplish, becoming ever more confident and independent, until one day they lead lives of their own.  There's really just the bitterness with Naomi.  The last milestone she reached was learning to sit at 16 months.  And that's just if we actually sit her up.  She can't get to sitting on her own.  But that is where her development stopped, as far as the traditional milestones go.  She does continue to make cognitive developments, but as far as doing and being...she's an infant.  Lydia blew past her at five months.  When I see Naomi getting bigger I feel sad.  She'll be 5 in October.   Her life is reasonably half over.  I look at her long legs and think of how they should be pumping to make a swing go, running with her cousins in play.  I look at her pretty face and know I'll never see how she would have looked as a woman.  I look in her eyes and know they will never gaze in loving amazement at a child of her own.  There is no sweetness in the passage of time.  I grew up listening to my female relatives talk about the fear they experienced whenever they were hit with unexpected occurrence.  Husband very late returning home from work, child with a high fever, child momentarily lost in a store.  They spoke of how they would imagine the worst...death...imagine how they would respond to that loss, how they would cope, imagine the funeral, etc.  For them, though, those fears, those dramatic imaginings were quickly pushed away as soon as the husband walked through the door, the fever broke, the loud speaker announcement for Mrs. So and So to please come to the service desk echoed through the aisles.  The bullet dodged, they could chide themselves for their silly melodramas and go on with life as it should be. There's no bullet to be dodged here.  Batten's disease and death are stubbornly present.  The Grim Reaper persists in casting his shadow over us.   Go away.  Leave us alone, I think.  He doesn't budge.  Anyone who thinks life is fair is a fool.  Anyone who thinks you can ever truly be the master of your own destiny is living in a comfortably lucky self delusion.  You can do everything right and end up in the shitter.  You can do everything wrong and end up in a bed of roses.  

Naomi screams a lot these days.  It's very hard.  On all of us, Naomi included.  She doesn't like feeling whatever it is she is feeling.  That is obvious.  I feel so bad for her.  She breaks my heart every day.  Born doomed, she's never known a moment in the sun.  You reap what you sow.   Okay.  What did Naomi sow to reap this? Yes, there is no fairness in life.

Naomi with her wild morning hair.

All ready to go to a picnic with her school friends. 

Lydia wants to do whatever Naomi is doing.  This mostly annoys Naomi. 

Naomi fell asleep having a bubba with Mommy after what will hopefully be one of many more trips to DelGrossos's Amusement Park.

Naomi and Lydia on the couch watching a show with their dolls, Clementine and Arlene.

Lydia isn't really allowed to watch shows, though it does happen because Naomi watches and I don't want to rigorously segregate the children, but Daddy posed them here like this and asked me to take their picture.

Lydia...just because she's cute too.