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.

Delight

Naomi really likes to play in her bed.  Her bed is basically a double bed sized crib with a drop down side that is made for disabled children.  It has mattress with head and food articulation and the mattress can be raised or lowered to facilitate getting her in and out of it.  She does not need these features now, but she will eventually as her disease progresses.  For now, it is a gigantic play space.  And sleeping place, but only after the playing is done.  On Wednesday she seemed a little restless so I decided to take her up to her room and put her in her bed for some aerobic activity.  All little girls like to play in their rooms sometimes.  When she is in her bed and not sleeping she is kicking, rolling, spinning on her back and generally acting like a wild animal.  I opened all the blinds and drapes in her room, and as it was one of those rare, but glorious, bright sunny Central Pennsylvania fall afternoons, the room was so pleasant.  Naomi played for an hour, laughing and squealing and generally carrying on, in a good way, the whole time.  Pretty much the only place Naomi will roll to her belly and push up on her hands is in her bed.  Every time she does this, in order to encourage her to do it more, I make a big fuss, talking excitedly, etc.  So when she did this on Wednesday I started saying to her "Oh, you're a Bear on her belly!  Bear on a belly!  So cute!  Mommy loves a Bear on a belly!"  She thought this was great and then really started showing off, pushing up, and then burying her face in the mattress, and then pushing up again all the while deep belly laughing and so proud of herself, big, bright, shining eyes, big, wide opened  mouthed smile, face lit up with joy and happiness.  When she finally rolled onto her back after several minutes I told her "Mommy wants you to be Bear-On-A-Belly again!" and after maybe a minute, she was back on her belly, doing the same routine.  We repeated this sequence one more time, and the whole time she was just laughing and laughing, showing off, and really playing with me.  It was delightful.  While I kind of wish I had it on video, I would not want to have been distracted from enjoying the interaction and play, and anyway, it is deeply imprinted in my memory.  It's just too bad I can't share it with anyone else.
Here is a picture of her I took earlier on Wednesday.  This was her 'look' while playing in her bed.

By the way, she is supposed to be napping while I write this post and is instead up there having a grand time in her bed.  So rather than hearing the sound of silence coming from her room, I am hearing laughing, kicking, and squealing.  So ridiculous.

My Favorite Time of Day

My favorite time of day with Naomi is her bath time.  This is usually around 7:30.  I like to pick her up and take her up our front stairs.  She always giggles on the staircase, I guess because she loves her bath.  I lay her on the spare bed, and she almost immediately starts kicking and squealing with delight.  I fill her tub and talk to her, then strip her down (which she loves) and put her in the tub.  She has two main activites: kicking vigorously which leads to me getting wet and her some times opening the drain, and spinning where she pushes against the side of the tub and cranes her neck forward to rotate in the tub.  I sing her favorite songs to her and she laughs and smiles.
     After about a half hour, I wash her and then have my favorite part.  I pick her up and lay her on her towel on the floor.  I wrap her up like an ear of corn - see below

I then tell her that we need to dry her face and I cover it up and say "Where's Naomi?" 

 and wait until she hollers and say "peekaboo"

I then tell her we are going to dry her hair and tell her we are going to count to 3.  I count to three and the rumple her hair with the towel -  She loves it.

You'll notice her wild hair - so cute!

Finally I hoist her up to her delight and we go and get dressed.  That's my girl!

No Nap!

I must admit to being a little worried.  Naomi ages out of the Early Intervention program when she turns three at the end of October and moves into the  public school system.  She will be joining an IU8 preschool class that runs from 12:30 to 3pm, Tuesday, Wednesday and Thursday.  Fortuitously, or maybe not, Naomi naps from about 1 to 4pm most days!  Hm.  Naomi's naps are very important to me.  First of all, I like her to be very well rested.  She functions much better and is much easier to manage.  Secondly, and maybe just as importantly, they give me a nice, big, two to three hour break in the middle of the day.  I really, really, really need this break!  Naomi is 100% dependent for all of her care and activities...from drinking to playing to, ah, waste management, she needs not even just assistance, but full attendance, for everything.  It is, to say the least, exhausting and, yes, wearying, too.  So I am concerned about how her school schedule is going to impact her sleep and, with that, my ability to cope.  We have been visiting her classroom every Friday afternoon for the past few weeks.  Naomi has a hard time adjusting to new people and places, so I am trying to ease her through this transition.  The first two visits I took her at 3pm, waking her early from her nap to go to school.  But as I am trying to shift her naps later, I decided to take her at 1pm today.  I can't take her any earlier because there is a Head Start class in her room in the morning.  Well, she fell asleep at school, and stayed asleep when I put her in the car, for the whole ride home, and then did not even stir when I put her into her bed to finish her nap.  Or so I thought.  Naomi usually wakes up when you get her out of the car and then won't nap anymore, but seeing as how she stayed asleep, I thought, okay, GREAT, this is going to work.  Not so much.  After five minutes I heard a loud thump.  Then another 30 seconds of silence, and then thunderous kicking.  Loud delighted squealing.  Extensive laughing.  So I gave it an hour.  And for an hour, Naomi carried on in her bed, most clearly not sleeping.  Then she seemed to be settling down.  And then she called for me.  Thinking maybe she needed a fresh diaper, I went to check on her.  Diaper is fine.  I tell her she needs to nap.  I wait another half hour, during which there were long-ish stretches of silence during which I would think, finally, back to sleep...only to be followed by laughing, squealing or kicking.  So I decided to get her up.  Clearly, the idea that she would fall back asleep was completely preposterous.  When I got her, her eyes were very tired, but she was showing no interest in sleeping.  So I decided to put her in her stander to watch shows while wearing her eye patch, which was met with a big, sad face and loud, offended crying. Because while she was showing no interest in sleeping, she was also very tired, and thus, very cranky.  So I decided to have her do this instead:

Yes, that is a big, spoiled Little Bear wearing her patch and watching shows while reclining royally on the couch, draped luxuriously under a soft, pink, blanket.  What else are you supposed to do with an extremely tired, extremely emotionally precarious, but extremely cute, girl?