Sunday, January 27, 2013

Sleeping troubles, Hunger Strike, and Dinosaurs

It has been an uneven couple of weeks for us here. Some days are like this:
And other days are like this:


Naomi has been running off and on low grade fevers up to 100.1.  Last time this happened she had a UTI and was put on Bactrim.  So we put her on it again for a week.  This, in addition to us letting her nap more because she seemed tired lead to some serious sleep problems:


Early naps: and even worse she was up at 5:30 for most of the week.  


Then in the middle of the week she stopped eating solid foods again.  Just like in the past, clamping shut, sticking her lower lip under her upper lip and refusing to swallow.  Every time it happens we wonder: is this the beginning of the end?  Will she start to decline?  It is so stressful.  She did sleep in to 7:30 this morning so maybe things will start to turn around.  We are keeping her on liquids for a week.

Not sleeping, activating toy with head
Today we did something different.  The Dinosaurs came to Altoona.  Discover the dinosaurs is a roving "zoo" with different dinosaurs set up in exhibits.  We decided to take the kids.
The line wasn't too bad, but there were a lot of kids there.  Initially Naomi did okay in line.
She was acting like her silly self

Unfortunately, it was loud and dark and had a lot of flashing lights and Naomi started to cry.  She did not enjoy the exhibits at first.  There were maybe 10 life sized dinosaurs that moved and roared set up like a zoo We ended up going through pretty fast:  Even the little one was alarmed.



Example of dinosaur -were they really blue?

Naomi needed to be comforted by Dad


Naomi required much comforting in the beginning.


We made her participate however

Naomi getting eaten by Allosaurus

This led to the stop hand - it works on dinosaurs too

Naomi had a lunch bubba infusion and we went down to the bottom level which consisted of a gift shop, a ride on a triceratops and some fancy dinosaur bouncy castles.  There was also face painting

Things perking up
We decided to put Naomi on the triceratops ride.  It was about 10 feet off of the ground.  As you can see it didn't go over great.  Although I think if we did it again she would like it.






After the triceratops ride Naomi and Daddy had some play time.  She really got in a good mood and we went back up and looked at all the exhibits again without any crying.





Lydia about to get devoured by T-rex

Look out!


All in all an uneven week, but really par for the course.  Hopefully Naomi will sleep well tonight and start to return to her old self that we love.



Wednesday, January 9, 2013

Children Like Your Own

Lydia is two months old today.  She seems to do everything that she should be doing, and she certainly does things that Naomi did not do.  She smiles back at me if I smile at her, she engages in reciprocal cooing, she rolls over from her belly to her back, she holds her head steady, she can stand if I hold on to only her hands, she makes sustained eye contact we me, she stares at my face.  These are all things Naomi did not do. Some of these things Naomi still does not do.  Some of these are things she never will.  All of these are things  that Naomi will someday not be able to do again.  I have longed desperately for so long to have a baby who develops as she should.  I have craved it.  I have coveted it.  Lydia is a wish granted, a dream come to life.  And I am reveling in her.  But I am also grieving anew.  When Lydia and I lock eyes and chat there is a very vocal part of my heart wishing it were Naomi, or rather, that it had been Naomi.  I don't know if I can ever find the words to describe or explain how deeply I wish, wish, wish that Naomi did not have Batten's disease. I think sometimes that I will go mad with longing for her health and well being.  It is a wound that just does not, will not, heal.  And I know about wishing.  As my grandmother was fond of saying, wish in one hand, shit in the other.  As quickly as I wish it, I strike the thought from my mind and force myself to think more practically.  That I love the Naomi that I have; I love every bit and piece of her.  I love her and who and what she is.  I love each and every one of her ways.  I am proud of her.  And I am cognizant of the fact that Batten's diesase makes her, well, her.  But that doesn't stop my heart from feeling differently.  It doesn't stop my heart from wishing that it didn't have to be so.  I have often said, I don't want to change the past, I just want to change the future, that I want tomorrow to be the first day of her getting better.  Of her being cured.   I say that, and I feel that, because I don't want to lose the child that I have had in order to gain the one that I wish I had had.  And I understand that those feelings mean that when her life ends I will not want to change one single day.  But my heart wishes otherwise.  My heart is wise enough to know that if she'd never had batten's disease in the first place, if Rob hadn't given her a sporadic fatal mutation on the same gene where I carry a fatal mutation, that I wouldn't be in this position of both wanting the child that I have and  wanting the child that she would have been had this ugly disease not gotten in the way.  Here's the thing about batten's disease.  It's a serial killer.  It's a murderer. It's a drunk driver.  It's a pointless war.  And it has taken from Naomi and each and every one of its victims their potential and their futures.  Go to  http://www.bdsra.org/what-is-batten-disease/faces-of-batten/ and look at face after precious face of batten's victims and think, know, really try to understand, that all were children like your own, much loved, much wanted.  It makes me sad that Lydia now too, like Naomi, causes both joy and sorrow.  

Naomi turned two months old three days before Christmas.  Her early infancy was much like an Edgar Allen Poe story, a blissfully happy time with an a weak undercurrent of disaster growing ever stronger and stronger until it washed the foundation of our lives right out from under us, a soft tapping on my consciousness gradually turning  into a jackhammer of fear and doubt.  At two months old, Naomi was still young enough, and had been born early enough, that we could ignore the sounds of moving water and boring doubt. But the awareness was there and growing.  In my moments of weakness, I wish for a lot of things.  One of the things that I wish for is that I could go back and relive her early years again, that I had then the sang froid I have now, that I didn't have to go through the grieving process during those same, precious, early months.  I just don't think there is any way around that, that when your child is diagnosed with a horrible illness you have to both grieve her life and enjoy her life at the same time.  It's very hard. 




Naomi at two months old.

Naomi at 4 years, two and a half months old.