coming soon

hi we have been really busy this week but Naomi as started school and Halloween.  We will post more soon.

Birthday!!!

Today was Naomi's third birthday and we had a grand time.  She gave everyone a present, Hobbit style, by sleeping in until 7:15.  Anne frantically finished her dress (see below) while I fed her and cleaned the house a bit. At 10:00 am the brunch/lunch party started.  In attendance in addition to us were, Nana and Grampy (my parents),  Papa and Grandma (Anne's parents), Uncle Brent and Aunt Sarah with Cousins Grace and Margot, and Aunt Laura with Cousin Grant.  Naomi was the belle of the ball in the beautiful dress that Anne made.  We had coffee and Naomi played and watched shows.  At 11:30 lunch was served.  Pulled pork sandwiches, beef brisket, mac and cheese, coleslaw and baked beans from Mel's, a local bbq joint.  It was delicious.  Then we opened presents with Naomi.  From mom and dad, some books including the brand new That's not my Elephant book (thanks Usbourne)  to complete the series, and a light up lantern.  From Papa and Grandma some christmas music (hopefully naomi will like one song).  From Nana and Grampy some wobble toys and a snowsuit and other clothes (which we dressed her in and then she threw up on it 5 seconds later).  From Auntie Laura and Uncle Jimmy an adopted grizzly bear (her name sake) and from the Anderson crew a Matruska Doll (sp?).   We had lady bug cake and ice cream and Naomi proceeded to not like icing.  After more swinging and shows, Naomi busted up the party by trying to fall asleep.  A splendid time was had by all!  Thanks!

Isolation

     Having a child that is profoundly disabled, having a child with a terminal illness, is a profoundly isolating experience.  There are just not that many people who truly know anything about what it is like to live this life...waking up every morning to the knowledge that Batten's disease and mitochondrial disease are still true, to the knowledge that, yes, Naomi is still suffering from diseases that will take away her life;  to the grinding care for a child who needs aid and assistance for every minute of every waking hour, to play, to eat, to drink, to move from place to place; to the knowledge that the gradual independence other children achieve day by day as they learn to crawl, then walk, then express their needs, then do for themselves, is something that Naomi will never achieve, that she doesn't get more capable every day, she just gets bigger and heavier.  When parents talk about being frustrated that their toddler keeps ripping apart their kitchen cabinets, or being sad that their children are growing up, I just can't relate.  I  can logically and intellectually understand the sentiments being expressed, but those things are far outside the realm of my experience, and those kinds of experiences are something I desire so savagely I think I might be blown to bits by the force of my longing.  When I speak of isolation, I do not speak of loneliness.  I am not lonely.  I do not crave company or entertainment or distraction.  What I crave is for Naomi to be well, to be healthy and whole, to have a future that is limitless, bounded by nothing but the scope of her imagination and the force of her talent.  And that is isolation.

     Many people, when they go through a life shattering experience will ask "Why not me?"  Why shouldn't I be the one with the disabled child, the inoperable brain tumor, the husband paralyzed from the neck down.  I also ask "Why not me?"  Why shouldn't I be the one with the healthy child, the child with a future, the easy, take-for-granted happiness that most people habituate to upon the birth and maturation of their children.  They are really the same question, though.  What that question really is, is one of deserving.  And the answer to that question is, I did not deserve to have a sick child, no one does.  However, the flip side of that answer is equally true.  No one deserves to have a healthy child either, including me.  But having a healthy child is an ordinary, inclusive, common experience.  Having a sick one?  Isolating

I took this photograph of Rob and Naomi on June 30, 2010, the day we received her definitive diagnosis of CLN5 type Batten's disease.

Quick things

Hi,

We haven't made many posts...  I have been on call which is busy, and Naomi has been getting up at 5:30am so Anne is tired.  Couple of quick things...  We took Naomi swimming at the Hollidaysburg YMCA again today.  They have a warm water (85 degree I think) pool for old people to exercise in, but Naomi just loves it.  Today we had her on her back kicking and squealing and she was trying to do her bath exercises where she spins as well (of course she doesn't realize that she would drown if did them).  She enjoyed jumping and spinning and when we were done and were showering off by the pool she capped the experience by peeing on Daddy.

Also Naomi starts school in 2 weeks when she turns 3.   Early intervention stops then.  It will be sad to see her therapists go... they are almost like members of the family.  I got a chance to visit her school.  Her classroom is cute and we will have to take pictures.  In preparation, Anne has been making outfits for her so here is Naomi's school fashion show...

The black shirt and pants are Naomi's SPIO compression suit.  She has trouble knowing where her body is in space and the suit, by virtue of being very tight fitting, provides constant feedback to help her figure that out.  She has gloves too, which she is not wearing in these pictures.