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?

Early Morning surprise

This morning was  eventful  with Sweet Pickles.  She called for us loud and clear, with a loud aaaaaaaaaahhh!!!!,  at 6:15 in the morning.  I was beat as we'd  had friends over for a delicious pot roast dinner last night, but when General Bearious calls Reveille you have to be a good foot soldier and attend to her.  Well, she was in a delightful mood, and I took her in the spare bedroom to cozy with her for a half hour.  She was very vocal, calling out raaaaaahhhhhhh!!!! and singing to me where she basically vocalizes out loud for 30 seconds.  In the middle of this she let out a fart, but I didn't think anything about it.  After a half hour I was going to take her down to see Mommy for bubba, and I told her it was time to change her diaper.  She was wearing flannel oversuit foot pajamas and then lightweight pajamas underneath.  When I took off the oversuit I saw an ominous sign: a water mark on her belly button.  It could mean only one thing: blowout.  As I lifted her shirt, there was poop everywhere, and I don't know how she does it, but she immediately reached down and got her hand in it.  Ugh.  I took her in the bathroom and she is just smiling and loving it.  Poop all over my shirt which I have to take off - I get her pants off poop everywhere - now on her hands, the rug, the side of the tub, me.  And she is just having a grand time of it all.  We are both down to underwear - it is like a scene from Lord of the Flies.   I clean her up with about 25 wipes and dump her in the tub.  This apparently was the most awesome thing I could do for her.  She is hollering and squealing with delight the whole time while I smell like a sewer.  Even being very tired, I can help but laugh at her.  Even in a very stinky situation her unbridled happiness is infectious.  I wash her while she is trying to do her kicks and get her out and get her dressed.  She is kicking and rolling as if this is a special surprise Daddy gave her.  I love that Bear.

Sirius Satellie Radio: Naomi

If Naomi were a DJ here are the hits she would spin:

I just called to say I love you - Stevie Wonder

You can call me Al
Kodachrome
Mother and Child reunion
50 Ways to leave your lover
Diamonds on the soles of our shoes
Me and Julio down by the schoolyard  - all by paul simon

Obla Di Obla Da
Rocky raccoon (sometimes) - Beatles

White wedding - Billy Idol

Video Killed the radio star - The buggles

Dixie - traditional

Crawdad song - music traditional / lyrics by the caugheys

Moon River (Juice Bubba)  - music traditional/lyrics by the caugheys

Oh the mama and the bear - Anne Caughey

Ladybug picnic
me and my m
The alligator king - sesame street

Who is that little bad bear - Anne Caughey

Ode to my family - The Cranberries

Walk like and Egyptian - The bangles

Bohemian Rhapsody - Queen

Oh Holy Night - traditional

Auld Lang Zyne - traditional

Closer to the Heart
Fly by Night
Tom Sawyer - Rush

The topic of sadness

It has been a rough week this week for many reasons.  The biggest is the passing of a childhood and current best friend's mother.  She was the nicest person I have ever met and I spent a ton of time at her house growing up.  She was taken way too early.  I feel terrible and I can't imagine how my friend feels.

The position of having a child with a terminal illness is also horrible.  It makes it hard for friends and family to talk to us about their troubles.  Even my friend dealing with his sick mother felt the need to qualify his situation by saying it was not as bad as what we are going through.  I certainly didn't prompt this.

This has made me think about the world and peoples troubles and I think it is easy for our family to always compare our situation with others.  Objectively, obviously, what we are going through is probably worse that most things.  Anne and I talk about what would be worse or better.  E.g.  if naomi was normal and died in a car accident at the age of 17 - is that better or worse than this.  If naomi had typical battens and developed normally until now would that be better?  This persons child has this problem but it isn't terminal so it isn't as hard as naomi?  I think these questions are natural but maybe miss the point.

When I was young and playing basketball or video games at my friends house and his mother made us brownies the world seemed good and full of hope.  As I have gotten older I realize from what I have seen personally and professionally that the truth is that the world is full of random misfortune.  I stopped looking for reasons a long time ago.  There are a lot of people in pain and dealing with loss or sadness.  It is a part of the imperfect human existence.  It is not a competition to be the worst.  Trying to empathize and accepting empathy without judging is what I am trying to work on.  I can thank Naomi for making me a better person in this way.

Whittling Down

I often wonder what our lives would be like of none of these things had happened to us.  My sisters are doing things in their kitchens with their children, canning and preserving food, etc.  I could try to do that, but it isn't something Naomi could participate in and enjoy like my nieces and nephews can.  So for me to do it, I'd either have to ignore her for hours at a time, which is unacceptable and does not meet my standards, or use the little free time I have while she naps or is with Joanna.   My free time is precious to me, as it is to all parents of young children, but especially so because it is also my only chance to regroup and refresh myself to get back to meeting all of Naomi's needs.  So I prefer to use my free time to either vegetate, if it has been a bad couple of days, or do what I really, really, really love, which is sew.  See, I really can't do anything while she is awake.  I can take maybe 10 minutes here or there, but that is about as long as she can go without needing something from me.  Her needs are incessant.  She truly can not do anything for herself.  But canning and such takes hours of time and I just don't have that.  Even if I did try to do it while she napped, what would I do if I wasn't done when she woke up?  So I am not even going to try.  There is a lot one has to give up to live a life like this one.  I have found myself whittling down my interests and activities to only those most loved and essential, and least likely to cause me stress, hurt and heartache.  It may be a rich life in someways, but it is a narrow one in so many others.  And when it gets right down to it, I'd rather have spent the day in mundane attendance to her needs and entertainment, than not have spent the day with her at all.  I love home made food as much as the next person, but I love Naomi more.  At the end of their lives, people don't say things like 'I wish I'd have spent more time cleaning my house' and the like.  No, they say they wish they'd spent more time with their families and doing the things they truly loved.  So, yes, I have been whittled down to a sliver of my former self, but that sliver is the best part.  And when it comes right down to it, that, and store bought canned goods, are good enough for me.  Because in the end, to paraphrase the Pauline Harris character in PBS's Anne of Avonlea miniseries, Naomi needs me, and it's good to be needed.  

Here is a picture of Naomi in her new Pony walker we are trying out.  She has not tried to take any steps in it, but at least she does not hate it like she does her Rifton Pacer walker.   I love her Pony, I think because it looks like a ride on toy, which is something we have never gotten to enjoy with Naomi.  I hope she learns to use it, but even if she doesn't, I am enjoying seeing her in it.   

Family Picnic

I'ts Rob writing again.  My family has a picnic at their boat club every year.   I have been going since they joined when I was two.  It is a Labor day tradition.  We have been taking Naomi since she was born.  This year it was hot!  94 or so.  We got there around noon and went for a nice boat ride on the Allegheny river.  Naomi drank her Splash bubba and fell right asleep.

Unfortunately she only sleep for a half hour.  She was a good girl and participated in the activities for the kids as best she could.  There was a horse that we sat her on.  

But boy was it hot.   She was getting flushed, so we filled her baby pool up with water that couldn't have been more than 70 degrees.  At first she cried, but then she splashed and loved it.  Every time she would kick, the sprayed water would feel like daggers in our skin it was so cold.  Maybe Naomi should go out for the polar bears!

At 5:00 we had dinner - it is always the same.  Kielbasa, hot dogs, corn, sauerkraut.  Delicious.  We left Pittsburgh and were home by 8:00 - every one exhausted.

Morning Routine

I thoroughly enjoy our morning routine with Naomi.  The only significant changes were at 6 months when she started sleeping in her crib in her own room and at 16 months when she went from breastfeeding to bottle feeding.  Otherwise, it is the same pattern.  Because Naomi can't get out of bed and come find us when she wakes up, we still keep the baby monitor on.  Most mornings we hear her getting awake, usually around 6:30am, harrumphing around in her bed.  Sometimes she wakes up with an explosion of kicks (sounds like thunder) and laughter.  But regardless, we wait to get her until she calls for us.  Sometimes she likes a little personal time in the morning.  When she is ready to for us to get her, she calls out "Ah. Aaahhhh."  Rob goes and gets her out of her bed, changes her diaper, and brings her to me in our bed.  Then he goes to get her morning bottle, or bubba. as we say.  Naomi and I snuggle in bed for 20 minutes to an hour, drinking bubba, singing songs, and playing.  Naomi prefers to drink her bubbas while I sing to her and she has a specific catalog of songs she likes,  such as Oh, Holy Night, Auld Lang Syne, Moon River (with made up lyrics), Hush Little Baby and some songs I made up.  She also knows which song she wants to hear, and if I am singing the wrong one she will holler out an emphatic 'Ah!' repeatedly until I get to the right one.  It is a little ridiculous.  I do most of the singing, but sometimes Naomi sings to me, which I love.  Her singing is mostly vowel sounds that she brings up and down in pitch and it is really cute and really funny.  Naomi is definitely a morning person and is at her happiest and most charming when she first wakes up.  I am not a morning person, at all, but she is so utterly delightful in the morning that I now look forward to her waking up and starting us on our day.