Sunday, November 24, 2013


These are pictures of Naomi I downloaded for a post I never finished.  I figured since I took the time to downlaod them, I may as well post them.  She was between six and seven months old in these pictures.  Such a sweetie.  I really wish we had not been given a fatal diagnosis when she was so young (a week and a half shy of 4 months old.)  It made it really hard, no impossible, to live in the moment and just enjoy her.  I tried.  Rob did much better with that during this time.  But I just cried so much.  It is very hard when you have to grieve your child while your child is living.  It is the way it is though.  Any parent in our situation can tell you the same thing.  There's just always this black cloud of doom hanging down over everything.  It was hard after the initial trip to Children's.  But hope springs eternal (I could write reams on that one) so we had pretty quickly settled in to the idea that she would have a static encephalopathy and be with us for a long long time.  We even dreamed that maybe she would learn to walk or crawl, or at least use a walker, and have some means of independent communication.  But, yes, it would have been nice if I could have just enjoyed the baby pictured below without all the grief getting in the way.  It makes me sad.  Sad for us.  Sad for her.  We missed out on so, so much.  It even has made us miss out on Lydia.  As a parent you want to do everything possible to help your child so you search, search, search for a diagnosis. But sometimes the diagnosis ends up hurting you and your child, such as when the disease that is diagnosed is untreatable and always fatal.   We would have been better off not knowing.  We couldn't do anything to help her anyway. You really want to know, until you do, and then you just want to be able to forget it.  Interestingly, I have been much more able to handle the difficulties of Naomi's situation recently.  For me, having Lydia made it easier to to enjoy knowing Naomi as she is.  When Lydia walked, it didn't hurt so much that I never saw Naomi learn to walk.  It still hurts me for Naomi's sake, but no longer for mine.  Does that make sense?  I only have to grieve for what Naomi misses now, whereas before I had to grieve both what she misses and what I missed as a mother.  For Rob, though, having Lydia has made dealing with Naomi's condition more difficult, and so he has been having a very difficult time with it all recently.  It is sad.  Always a shadow.  I've said it so many times:  I just want to walk in the sun again.  We never will, though.  That's the other thing that is hard.  Rob and I are solidly middled aged now, approaching 40 in fact, and we have both been going through midlife crisis kind of stuff.  When you are young you have your whole future spread out in front of you.  Unknown.  Exciting.  So much limitless potential.  Bright skies, wide horizons.  All that stuff.  And you are working hard to get everything all set up...get the education, get the training and experience, save, work, plan, dream.  Now, though, the future is here.  And it kind of sucks.  It's stagnant.  Naomi is stagnant.  She hasn't regressed, but she hasn't progressed either.  And we are thankful that she has not regressed, but it's kind of a shitty thing to have to be thankful for. daughter hasn't hit a new milestone since she learned to sit at 16 months old.  She's 61 months old now.  Awesome!  And it is!  Because she could have lost that skill and she hasn't.  But that sucks!  Sometimes I get tired of having to be grateful for shitty things when it comes to Naomi.  
It's not all bad, though.  Naomi and Daddy has a great day today.  They did most of their favorite things...horseback riding with Dakota, shopping, swimming.  

We had a screened porch at the last house.  We spent lots and lots of time out there.  She loved it.  We are hoping to put a porch on this house this spring.  

On the porch again. 

Trying to get her to use her hands instead of just her feet to jingle the bell.  The paper attached to the tripod has black and white checkerboard printed on it, for visual stimulation.  I had that kind of stuff everywhere for her. 

Her first eye patch.  We still patch.  She still doens't like it.

Love her little face.  Still love her little face. 

On the porch again. We had most all meals out there.  

She had learned to windshield wiper her hands over her linking letters.  

She loved it! She could finally play.  She made a lot of progress with her hands for a long time.  Well, for about a year.  Then the shit hit the fan.  

Love you.

We had nearly daily photoshoots.  Because as a first time mother I was enthralled with  my baby, and also because I had a frantic need to document her daily.  

Smiling to my voice.

She was facing her favorite big windows.  She loved them.  Sometimes I feel bad that we moved away from that house and the things in that she loved.  But it was part of Before and I had such a strong need to get away from all things from Before.

These are some of our favorite pictures from this time.  They watched all the Pens games together.  Sometimes she still  does let Daddy have the Pens game on.  Usually after her bath.  Baths put her in such a good mood, so she is more tolerant of not getting everything she most prefers.  

1 comment:

  1. We would have been better off not knowing. We couldn't do anything to help her anyway. You really want to know, until you do, and then you just want to be able to forget it.


    Sometimes I get tired of having to be grateful for shitty things when it comes to Naomi.


    Oh, what you write and the way you write it. Captures so much. Tells the truth, tells it like it is.

    Sometimes I'd like to kick the truth in the teeth.

    It isn't fair. No one has to tell you how unfair it is.

    Thank you for writing. It matters.

    xo CiM