This is the story of my daughter Oliana who was born blind. To read her complete story start with the blog titled Oli's birth. You can email me at shannongardner@live.com




Wednesday, December 30, 2009

CHRISTMAS, KEKOA, AND ANOTHER BABY GIRL ON THE WAY....

I can't believe Christmas is over already and tomorrow is New Years Eve!! Santa was very generous with the kids and it was really neat to see Kekoa so excited for Santa to come and bring him presents.  He was so serious about the whole idea of Santa being able to watch him all the time and know if he was being naughty or nice.  If I even hinted that he wasn't listening to me his little face would drop and he would  become so sad.  He was very concerned about being the best little boy he could be in the days leading up to Christmas.  Seeing him try so hard was really really cute and I have to say that he was on his best behavior the whole month of December. Now... not so much.  He's always pretty good but, he's being a lot more disagreable than he was a week ago.
Oliana still did not quite grasp the meaning of Christmas and Santa Clause.  She really could care less about presents. Wanting more to eat the wrapping and tissue paper. Everybody did remember this year not to wrap her presents in their boxes. We learned our lesson last year when she got so frustruated opening box after box.  She really didn't understand that there were toys inside those boxes.  This year however, we just wrapped the toys so she got the reward right away.  It was much better.  Her favorite toys were her musical and sound making toys.  Santa brought her the drum set that's pictured on the left.  As you can see by the big smile on her face, she LOVED it.  Maybe next year she will understand a little bit more.

Kekoa is still a great big brother to her.  I still believe that there is just something special about him that makes him so much more protective and excited for her. Her little guardian angel on earth.  Here are just a few examples...
My mom took them both to the park a few months ago.  Oliana loves the merry go round.  On that particular day there were other kids also playing on it.  He sat down right next to her and promptly told the other little girls that Oli was his sister and he had to protect her.  That's just what he did too. He moved to sit behind her, let her lean on him, and put his arms around her.  He also gets very excited when she says a word that he can understand.  The other morning they were both in the living room while I was in the bathroom brushing my teeth.  Kekoa comes running in and says "Oliana said up, Oliana said up. Go pick her up!!"  I also hear him talking to her in the morning on the baby monitor.  This morning he was telling her she was a silly little girl for rolling her prostethic eye up. (An ongoing problem, hopefully to be resolved in February when she gets custom fit prostethics.) Or the time he came downstairs in the middle of the night to get her sippy cup of milk because she woke up and he thought she was thirsty.  He didn't even wake anybody up.  Just got the milk from the fridge and took it back upstairs to her.  The next morning I saw it in her bed and asked my mom if she had gotten Oli milk.  She said no. Kekoa was standing right next to me and said "No mommy, I got her milk.  She woke up and I thought she was thirsty."  Still makes me teary eyed to think about how sweet that was.  He hadn't even turned 4 yet.  I could go on and on with these stories but... you get the picture.

Most of you know, I'm expecting another baby girl in March.  We did go ahead with an amniocentesis to check to see if this baby had Oliana's deletion.  She tested negative. A huge load off our shoulders.  Also when they did my 21 week ultrasound they measured her eye sockets and they measured in the normal range.  They were also able to identify both lenses in her right and left eye.  All wonderful news but,  I won't be completely assured until she gets here, I see both eye balls and then in a few months when she starts tracking.  Honestly I probably won't really relax until she's at least a year old and meeting her milestones.  All part of this I guess.  We originally were not going to find out the sex of the baby but, a lab test identified me as an intermediate carrier for Fragile X.  It's complicated but, basically it primarily affects boys causing mental retardation. Girls usually aren't affected and my number is very low, kind of a grey area.  We found out the sex just to put our minds at ease.  It was strange finding out it was a girl because I really didn't think I cared either way.  Turns out I guess I cared more than I thought. I cried and cried and cried.  Not because I was sad but, more because I was sad for Oli.  I thought of the hair and make up and playing dress up and painting our nails pretty colors and dressing up dolls....All of the things that I'm just not sure Oliana will enjoy that much.  She might but, it just makes me very sad.  I thought if she was my only girl then I wouldn't have to worry about those things. We would just do them in our own special way. My mom brought up a good point though.  Now she'll have a sister to teach her things and show her things she might not want to ask me or want me to show her.  She'll probably be closer to a sister than she would a brother especially since they'll be almost 3 years apart. I'm sure I'll still cry when the baby comes out and I see her big beautiful eyes.  See her open them for the first time, the first time she looks at me, the first time I make a face at her and she laughs.  I remember filling out Oliana's baby book the day after I brought her home from the hospital. There is a question in there that asks what color the baby's eyes are. I just bawled and bawled and sobbed because her eyes were fused, she didn't have any and I couldn't see them.  Something as simple as that, you never know how much it means to have your baby open her eyes and look at you.  I waited a year for my baby girl to open her eyes.  Beautiful blue eyes.  She couldn't see me through them but, for just a moment I could pretend that she could.  I then went home and proudly wrote in her baby book that her eyes were blue.  Just like her Grandpa's, her uncle Michael's and her big brother's  The prospect of having another baby just makes me remember when Oliana was first born and I missed all of those things.  Then I just have to think of Oliana and all the special things that no other sighted little girl does.  The special bond that we have that reminds me that the eyes are not the windows to the soul.  I think of those things and it does quiet my heart.

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