Monday, December 30, 2013

Christmas 2013

While it is still the Christmas season for another seven days, the big Santa extravaganza has come and gone.  Like every year, I had high hopes for Naomi and Christmas this year.  I don't know why.  Because I can't learn?  Who knows.  Doesn't matter.  Anyway.  We decked our halls all out again this year, even more so than last year.  Having Lydia does make things better.  We know at least one child might like some of the new things Santa leaves under the tree.  So we added more decorations.  And I tried extra hard to keep the house tidy and neat, so as not to ruin the festiveness with messiness.  Housekeeping is not my strong suit, and I don't care.  I live by the motto that no one on their death bed ever says they wish they had spent more time cleaning their house and less time being with the people they love and doing the things they love.  But, a few times a year I do make a special effort and the yuletide is one of those times.  We always decorate the weekend after Thanksgiving and leave our decorations up until Epiphany.  I am of the mind that it I am going to go through all the effort decorating takes, I want to enjoy my efforts for as long as reasonably possible.  Some day I may be one of those people that leaves the tree up until February.  It's a possibility.  So.  Below is a picture of our TV room. 

 We put a small tree in there that Lydia can not reach so we could have her in the main part of the house without having to constantly monitor her relationship with the tree.  And there are the our stockings.  I needledpointed the three for Rob and the girls.  My mother made mine when I was a child.  I wanted that room to look extra nice because Naomi and Lydia spend their mornings in there.  Naomi watches shows in there while she gets ready for school and Lydia toodles around doing her thing.  Also, I wanted it to look nice because we did not put a tree in the playroom like we normally do, due to Lydia's reach-y fingers.  See picture of Lydia ready to get in to something below.  

Here is one of Lydia reading a book. She loves books, just like Naomi.

And she now imitates Naomi by putting her face down on the pages she especially likes.  Sigh. 

Normally Naomi loves school and has mostly great days.  Her last day of school before break she had a terrible day and has been miserable ever since.  We can't find any reason why she has been so cranky.  She even wakes up fussing and whining in the morning and has been having at least one screaming tantrum before we even get to breakfast, which is not like her at all.  She's an early bird and usually wakes up just delightful and happy to start the day.  It's always made it nice.  Unfortunately, she is screaming right now while I finish this post. I have a headache and my ears are ringing because I tried for 20 minutes to soothe and comfort her.  Nothing works.  Finally I just put her on the couch and walked away.  She's still screaming.  The only difference from 20 minutes ago is that now the screaming is hoarse.  I don't think you can imagine how difficult day to day life with Naomi really is unless you are in a similar situation.  Or how wearying and wearing it is.  I am pretty sure I am suffering from traumatic stress on a daily basis.  I wonder how it will affect Lydia.  It makes me sad that she doesn't know life doesn't have to be this way.  I don't even know how to express how sad it makes me for Naomi.  

Moving on. 

Here Naomi is napping on the couch with her new kitty Marie.  She really likes Marie.  And at least she is pleasant when she is napping.  

Here are some pictures of Daddy and the girls reading together the weekend before Christmas.  Naomi as not a huge fan of this joint activity.  Probably because  Lydia doesn't sit still and tries to turn the pages before Naomi is ready.  

You can see her exasperation. 

We went in to Pittsburgh a few days before Christmas to see Rob's brother Jon, his wife Heather and Naomi's new cousin, Ryan.  And Nana and Grampy of course as well.   Naomi wore her festive casual Christmas outfit.

We got a quick picture of the three cousins before someone wanted to get down

She was in a so so mood.  We went for a walk, which she really liked, and then she fell asleep on the floor.  We let her nap for longer than we normally do so everyone could enjoy having dinner and exchanging gifts without  Naomi yelling.  She is afraid of wrapping paper and there was, of course, a lot of that.  It didn't feel good to us to do that.  It is sad when your child is better off missing out on things that most other people find fun.  

We came home the same day and got ready for Christmas here.  We always go to Grandma and Poppa's house for Christmas Eve after we attend the Children's Mass at their church.  It is a very small church and if (when) Naomi fusses, cries, or, better, yelps with delight over whatever show we put on for her in church to stop her from screaming/crying people tend to be more tolerant.  

Lydia wore the same dress Naomi wore when she was one.   Auntie Laura said she looked like Mrs. Santa Claus' helper.  

Naomi fell asleep right after her pre church bath. 

Which was good, because she is more likely to be pleasant for the evening if she has a nap, but bad beause she fell asleep later than we would have liked and we had to wake her up after less than an hour.  Not good. See below.  

Of course once again Mommy worked very hard to make Naomi a beautiful Christmas dress and once again, Naomi did not really enjoy it.  The truth is, she hates fancy clothes, so really they are for me.  Unfortunately, we were unable to get a good picture of her wearing it.  She did look really pretty in it.  Maybe some day when she is in a very good mood I will put it on her again and take her picture. 

Below is a picture of Naomi at church.  

Naomi was not bad at church.  Lydia was terrible, but in that delightfully annoying way that toddlers are terrible in church.  Of course it irritated me at the time, but that kind of irritation is so much better than Naomi's screaming.  Which is still going on, by the way. We are at 25 minutes now. 

And then we arrived at Grandma and Poppa's.  She needed a show pretty quickly, which allowed us to enjoy eating the meal they prepared for the holiday.  Lydia joined in a little too, but she was more interested in ham, fudge, and other Christmas treats.  

This is actually Naomi being cheerful and silly.  Which was nice. 

Then we moved in to the living room to exchange presents.  Naomi joined us in her wheelchair with her show player. 

 She was pleasant for a little while, and then moved in to mega meltdown.  I got her out of the fancy dress and in to her new Christmas pajamas (I have learned some things over the years) and tried to give her a juice bubba to soothe her but she would have none of it.  She was arching and flailing and starting to ramp up the screaming.  It is not easy to hold a five year old body acting that way, especially considering that Naomi has no ability to adjust her position or stop herself from falling or getting hurt.  So Poppa swooped in and carted Naomi off to the family room.  They listened to their music together and Naomi had a grand time.  See below a picture of Naomi being sweet and charming with Poppa.  

Meanwhile, Lydia was busy eating more fudge, stealing the candles out of the windows and doing her best to tear apart the tree.  

So we went home and Santa came while the girls were asleep.  He brought Naomi a new platform swing for in her playroom.  Her other swing is what is supposed to be the formal living room, but which has been the swing room since we moved here.  She can't swing in it while Lydia is napping, which has been difficult because Lydia's naps tend to coincide with when Naomi gets cranky in the afternoon noon and needs a swing to soothe her.  So Santa thought this new swing would be a great idea.  

We put the tree we normally put in the playroom in the swing room this year.  That room has a door on it, so we can protect it from Lydia.  Which has been good, because she is very interested in destroying our tree too.  We keep telling her,  "Just look." but she doesn't listen. 

We left out some cookies and milk for Santa.

Naomi's presents other than the new swing were a pillow to recline against when she is on the floor (it has Dakotas, ie ponies, on it) and a new desk and corner chair to help her play with toys.  She can sit by herself on the floor, but she has gotten so tall that the toys are too low when sitting on the floor.  So this elevates the toys to where she can see and enjoy them more. 

The girls woke up at about their customary times.  It was still dark out.  Naomi woke up really grouchy.  We tried to get her in a good mood with some shows, and some juice bubbas and snuggles with Mommy, Daddy, and Daddy and Lydia.  None of it worked, though the pictures below are cute. 

Eventually we decided to just give Christmas a try.  Naomi screamed, cried, raged, whined, fussed.  We tried to sit her against her new pillow.  No postive response.  

Meanwhile, Lydia was curious about everything, exploring her new toys and Rob and I were missing it because we were both trying to comfort Naomi.  At some point I just said, "This is dumb.  We've waited all these years to have a child who would enjoy Christmas and now we are missing Lydia too."  So we put Naomi in the TV room with her shows by herself and went back to just focus on Lydia.  Which was the right thing to do.  See Lydia enjoying new toys below.  That is probably her favorite toy. 

Let me tell you how it felt to put Naomi away in another room all by herself.  It felt really bad.  It felt like we abandoned Naomi.  There was, of course, no point in keeping her in there.  She didn't like it and wasn't having fun and she settled pretty quickly once we got her back in her usual spot for morning TV.  But it still felt really bad.  It felt really bad because we love Naomi and we want her to be part of our family and all of our celebrations.  Honestly, how would you feel if your five year old was missing for Christmas? So after we settled we brought her back in to the Swing Room with us and the  presents from Santa and the tree.  We put her off to the side and got her shows set up.  She enjoyed the pony pillow.  

And we proceeded with Christmas.

It kind of sucked, though.  There were me, Rob and Lydia over by the tree being together, and Naomi all by herself off to the side. 


She has continued to be mostly miserable since Christmas too.  It really isn't like her.  She goes through phases for sure, and she is miserable for some part of mostly every day.  She screams every day too.  But the ratio of miserable to pleasant has been way off.  It is hard.  It kind of took the wind out of my sails about Christmas.  I haven't been trying quite so hard to keep the house nice and tidy.  Rob hasn't made nearly as many fires in the fireplace. Not that I'm depressed.  I really just want Naomi to have fun, like other children do.  I tire of everything being so hard for her, and so hard on her.  And us.  I know everyone has stories of this or that child having a bad Christmas.  Naomi always has a hard time on Christmas.  Because I am weak, I, too often, fantasize about what it would be like if tomorrow, somehow, there would be a cure for Naomi and she would all the sudden be able to develop and learn to walk and talk and run and play.  For me, it is nice to imagine an alternate world.  It's an escape for the daily trauma.    However, I realized recently that at age 5 half of her childhood is over.  Half of her childhood when children play imaginatively and creatively, that is, is over.  So even if, somehow, my dreams did come true, it would still be sad.  Here's how it is.  We only get one go through in this life.  There are no dress rehearsals.  There are no do-overs.  It's not like next time Naomi might be born healthy.  There is only this one time.  Naomi has had five years of life and they have been five hard years.  She's still screaming by the way.  We are at 30 minutes.  I am going to try all of my means to comfort her again.  God, please, make it stop.

1 comment:

  1. I remember the screaming, the relegating to a different room, the guilt. Occasions put everything into stark perspective.