Monday, May 27, 2013

Busy Days


Lots and lots of busy times around the Caughey house these days.  Lydia is six months old now.  She is army crawling, eating cereal and squash and is utterly fascinated by Naomi.  She crawls over to where Naomi is and tries to touch her.  Naomi is still not sure about that and sometimes cries as though Lydia has touched her with hands made of acid or something.  On the other hand,  Naomi tells me with her cards that she loves Lydia and likes having her live here at our house with us and she would be sad if Lydia went to live with Grandma and Poppa or Auntie Sarah.  She also wants Lydia to go horseback riding on Dakota with her, though she does not want Lydia to go with her on her sleep overs at her grandparent's house.  That's her special vacation time.  School is almost finished for the year.  Naomi and I went fishing with her class two weeks ago and on Tuesday she has her end of the year performance.  Thursday of next week will be her last day of school.  I can't believe the school year is over. Time really does fly.  That is hard, because I know our time with her is limited.  In other news, I decided I'm ready for Naomi to no longer have Batten's disease or mitochondrial disease and instead to be a healthy, typical four year old.

In honor of Lydia being six months old and to help you all get to know Naomi better, I've compiled a photographic retrospective of Naomi at six months.


Around six months we started to see happy smiles fairly regularly.
This was also the age she started playing with her hands, a lot.  So much so that she ended up being tested for Rett's Disease, which she does not have.  She still does it, and now she mouths her hands a lot too, which means she also smells like slobber a lot.  I try very hard to keep her fresh and pleasant, so her hands get washed frequently.  She does the hand play for the feedback, or stimulation, it gives her.  I think it is also how she fights boredom, considering that she is pretty normal on the inside, but her body is very non-functional, and she's visually impaired as well.  She's close to what's called "locked in", which must be pretty miserable (hence the screaming?) The only, I don't even know which word to use here, blessing?? is that she has never known anything different so she has no memory of what it is like to be fully functional, so she is still a very happy little girl most of the time.


I posed her this way.  She has never been able to pull herself up.  Her arms and hands are probably the least functional part of her body.  They have always been an issue for her.  For example, part of her Early Intervention program the first year was infant massage.  Naomi loved it very much, except for having her arms and hands massaged.  When I got to her hands and arms she would scream and pull them tight to her body.  I tried very very hard to desensitise her arms and hands and get her used to moving them and having them moved and manipulated but made very little progress.  It's kind of a big deal when you can't or for some reason won't use your arms and hands.  So much development is tied to their use.  Crawling, for example, is spurred on by the desire to reach for things.  But if you can't see very well and you are very hand and arm adverse?  No reach, no crawling, and developmental progress becomes very difficult.

Why is a baby in jeans so over the top cute?  

Naomi has loved to snuggle since she was a little baby.  She still loves to snuggle.  Sometimes when she cries and screams seemingly out of the blue for no reason it is because she wants to be held.  I try to hold her as much as I can, and have other people hold her and maintain physical contact with her as much as possible.  Body contact is very important to her sense of well being.

Sometimes it was so hard to be happy in the moment with her.  I wish I did not have to grieve her and her illness at the same time that I have her with me.   

And sometimes it was very easy.  This was part of a little game and song I made up that we played.  She really started to respond to play at this age.  




Even then she was joyful most of the time.  It was sometimes hard to see that at the time because her way of relating is so atypical.  It took time to learn to read her cues.  I know all parents wish their child had come with a handbook, but it would have been extra useful with Naomi.  It wasn't like we could google something and find explanations or answers.  She's a one of a kind. 
This is one of my favorite pictures of Naomi.  

She has always been a Daddy's girl.  I put this mirror on the floor both to try to encourage her to look at herself  and so that we could see what she was doing while we did her physical therapy exercises.  It was like having a second set of eyes when we practiced alone.


Daddy helping Naomi look out her favorite window.  I still feel bad that we took her away from it when we moved a year later.  I just had to get out of that house, though.  I had a strong need to get rid of and away from everything from what I call Before.  Before is when we didn't know our child would be profoundly disabled from a terminal illness.  All the things from Before seemed to mock me, like, oh, and what made YOU think you'd get a happy ending?  So we sold the house and moved and I gave away all most all of our possessions...furniture, knick knacks, housewares, etc on Facebook as part of my Sale...Where the Price of Everything is Free.  I even gave away my piano.  I had imagined her taking piano lessons and practicing on it and I just couldn't bear to look at it knowing that would never happen.


Another posed picture.  


Dying Easter eggs on her first Easter.  Margot helped.  
As did Grace, Uncle Brent and Auntie Sarah.  We did this first thing Saturday morning when we woke up. 



I love this picture.  She's not looking at me but was rather drawn to the camera flash .  I loved it, and all of the ones like it,  to this day, because it lets me see what it would be like if she ever looked me straight in the eye.  She never does, at least not at any distance.  Sometimes we do lock eyes when we have our foreheads pressed together.  Pressing foreheads together is one of the ways Naomi connects with another person. 

Her first Easter basket.  The candy was for me.   The bunny is in her bed with her as I write this. 



Easter egg hunt Easter morning in our front yard.


She fell asleep getting ready for church.

Naomi started eating cereal at six months.  She liked it and took to eating by spoon readily.  She progressed through all of the stages of baby food on time and did well until about 11 months, when we went through our first feeding strike.  In retrospect, it was a mini strike.  If only they had all been that minimally painful.  





Happy after a good meal. 

Here Daddy is taking a turn feeding her.  It was really fun.  We used to fight over who got to feed her.  Then later on we would fight over who had to feed her.  That made us sad when we realized the change and resolved to try to find joy in all of our interactions with her, no matter how mundane or tiring or trying.  Easy to resolve, hard to do.  We try. I do have to say, after so many miserable feeding strikes and the placement of a feeding tube I really honestly do revel in each bite of food she takes and swallows.
She used to fall asleep eating all the time.  




Daddy's Best Friend.
He loves her so much.

A series of silly faces. I was singing to her.  



On our way to cousin Grant's first birthday party.  Naomi spent a lot of time with Auntie Jane at that party and  had a good time.  Auntie Jane has always been good with Naomi.  


Naomi has also always loved her baths.  She loves water in general.   We had a gas log fireplace at that house and always bathed her in front of it.  It was cozy.  We also had a screened in porch.  In warm weather she had her baths, and her meals, on the porch.  She loved it out there.  We need to put a porch on this house for her.  Hopefully by next year she will have a porch and a porch swing here.

So there it is.  Naomi at six months old.  

1 comment:

  1. Hi I'm Heather! Please email me when you get a chance, I have a question about your blog! LifesABanquet1(at)gmail.com

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