Oliana's first pair of eyes and her first birthday!!

Oliana finally recieved her first pair of prosthetic eyes in May. Right before her first birthday! We were so excited. The whole trip down to L.A. I just kept trying to imagine what my baby girl would look like with eyes. What a strange concept, huh. We thought she was only going to recieve the painted eye on the right side, but suprise, our occularist Beverly decided to do the left too!

She put the one that she had made for her right eye first. It was just such a surreal experience. I just kept starring at her. Oohhing and Aahhing. She was making faces at Seth and I like, what are you two googling at? She was just so beautiful. Even though I know she doesn't see me with them, it's really nice looking into them. I find that I don't focus on her eyes as much as I do her other features to tell her expressions. I still concentrate on her eyebrows and mouth to tell what she's thinking. They do make a difference in her appearance though.

We went outside the occularist's building after Beverly put in her right eye to wait while she constructed and painted her left eye. Seth and I could not stop ourselves from just staring at her. She just looked so different to us. I didn't think it would make that big of a difference, but it did. We went back upstairs and Beverly put in the left eye. As much as a difference as having one eye in, imagine what two looked like! It was just amazing. It took a while to get used to them. We were just so used to seeing blank eyes. I only wish she could see through them. We still do think that she can see some light. She squints in the sun, which is a very good sign!! We're happy with that.

For Oli's first birthday we had a small party at our house for her with family. She had two cakes. One was a flower and one was a heart with her name brailled on it. It was so cute. We put the cake on her tray and she heard us set something down. So immediately those little hands stretched out to discover what treat we had put before her. She grabbed a huge handful and shoved it in her mouth. Her eyes lit up and she just kept shoveling it in as we quickly sang happy birthday. There was no way we could take it away from her. She loved it!!

That night Seth and I took her to the Las Vegas Philharmonic. She really enjoyed that. She listened for a whole hour. When the music started she just sat so quiet and intent and then started bobbing her head. She probably would have listened longer,but the next set was really slow and the music was integrated with a narrative. Our Oli likes loud fast music. We had a really nice day and I think she really enjoyed her first birthday.

Heaven's Special Child

It's been a long time since I've been online and many things have happened...changed...dreams are becoming a reality. Oliana continues to flourish as the perfect little girl that I have always dreamt about. Funny now as I look back, I never realized what profound, unwavering love I would be able to show my children.

Oliana is almost 1 year old. Hard to believe, I know. Much as I love having a new baby around the house I don't think there would be enough money in the world to make me go back to the first few months of Oliana's life. She is growing to be such a strong willed, smart girl and yet she has such a sweetness to her that just melts the hearts of everyone who meets her. She has touched so many lives already and has taught us the importance of patience, determination, and not being prejudice against that of which we don't understand.

Many people told us when Oliana was born that she chose us to be her parents and now more than ever, as she gets older, I find that to be true. Here is a thought from another mother who has a child with a disability. It really touched my heart. It's funny because as I read it I thought, this could have been written for me!




THE SPECIAL MOTHER by Erma Bombeck

Most women become mothers by accident, some by choice, a few by social pressures and a couple by habit. This year nearly 100,000 women will become mothers of handicapped children. Did you ever wonder how mothers of handicapped children are chosen?

Somehow I visualize God hovering over earth selecting his instruments for propagation with great care and deliberation. As He observes, He instructs His angels to make notes in a giant ledger.

"Armstrong, Beth;son. Patron saint.. give her Gerard. He's used to profanity."

"Forrest, Marjorie; daughter. Patron saint, Cecelia."

"Rutledge, Carrie; twins. Patron saint Matthew."

"Finally He passes a name to an angel and smiles. "Give her a handicapped child."

The angel is curious. "Why this one God? She's so happy."

"Exactly," smiles God. "Could I give a handicapped child to a mother who does not know laughter? That would be cruel."

"But has she patience?" asks the angel.

"I don't want her to have too much patience or she will drown in a sea of self-pity and despair. Once the shock and resentment wears off, she'll handle it."

"I watched her today. She has that feeling of self and independence that is so rare and so necessary in a mother. You see, the child I'm going to give her has her own world. She has to make her live in her world and that's not going to be easy."

"But, Lord, I don't think she even believes in you."

God smiles, "No matter, I can fix that. This one is perfect - she has just enough selfishness."

The angel gasps - "Selfishness? Is that a virtue?"

God nods. "If she can't separate herself from the child occasionally, she'll never survive. Yes, here is woman whom I will bless with a child less than perfect. She doesn't realize it yet, but she is to be envied. She will never take for granted a 'spoken word'. She will never consider a 'step' ordinary. When her child says 'Momma' for the first time, she will be present at a miracle, and will know it!"

"I will permit her to see clearly the things I see... ignorance,cruelty,prejudice..and allow her to rise above them. She will never be alone. I will be at her side every minute of the day of her life, because she is doing My work as surely as she is here by My side."

"And what about her Patron saint?" asks the angel, his pen poised in mid-air.

God smiles, "A mirror will suffice."

Oliana and the Baby Food

Oliana has made huge accomplishments these past few months. Eating baby food was just one small feat for her. It may seem small for most people, but for a blind baby it was huge!! Not only can she not see her food or the spoon coming to her mouth, but she doesn't see other people eating and doesn't know that that's what everyone else around her is doing. For the first week that we tried she would just clamp her little mouth shut and wouldn't open for anything. Then after that she would push her tongue out and want you to put the food on the tip of her tongue, which, needless to say, didn't work very well. Finally, Seth just started prying her mouth open and shoving the food in her mouth. He would pry it open and say "open your mouth Oli" and put the food in. It sounds harsh, but it worked. After about a week of that she finally got it and all we had to do was tap her mouth with the spoon and say "open your mouth Oli" and she would. Now she loves her baby food! Good thing she catches on quick. She even grabs the spoon with her hands and puts it in her mouth to try to feed herself now too. She reaches her hands out to find my hands and when she finds them she finds the spoon and then takes over. Its quite neat to watch her figure it all out. She also has learned that I put the bowl of food on the tray. She puts her hands on the tray and finds it and has great fun playing in her food.

We started reading braille books to her. I read them and guide her hands across the braille as I read. At least I do sometimes. Sometimes she does it herself. I sit her in my lap and put the book on her lap so her arms and hands are free to roam the pages and she wishes. I put her hands on the pages so she knows right away that we are going to be reading a braille book and you should see her. Her little hand just starts waving back and forth back and forth across the page. Its the neatest thing. We only have a few braille books, but I would say that they are definitely her favorite.

Our latest trip to LA was exciting too. She got a flat conformer, or one without a peg in her right eye this time. So she's got flat ones in both eyes now. So nothing sticking out of her eyes anymore. They look really good. Her right eye is so much bigger now. It's almost the same size as the left. Our ocularist, Beverly, said that she should get her prosthetic eyes at about a year of age so only 5-6 more months to go!!!!! YEAH!!!! She's going to get green I think. Just like her Daddy.

One more piece of exciting news. She's just about sitting up. She can sit for about 10-15 seconds before she falls forward. Almost though. I'll keep working with her. Kekoa said her name for the first time today. He called her O-ee. How cute!! He's shown much more interest in her now that she's doing a lot more. He's always giving her his toys or his blanket (and he doesn't ever share his blanket with anyone). He still likes to kiss her and hug her. He's always very nice to her. I'm sure that will change once she starts taking his toys!! I'll hear "Mom O-ee won't share" HA HA!!

"Fixing" Oliana

I've recently been involved in a conversation about "fixing" Oliana. It seems strange to me that most people I encounter what to fix her. I don't consider her broken, but everyone else wants to change her. They ask me about eye transplants and assure me that in the future she will be able to see. I think the real problem is accepting something that is out of the norm. This world was created for sighted people and people who can see just can't imagine what it would be like not to. Anything that is different for us is very scary. It's alright to be scared and to worry about her and want the best for her, but she will have every opportunity available to her. While I appreciate people's concern we don't really need to be concerned about changing her. Everybody is born with imperfections. Oliana's is just more visible.

I am getting tired of having to defend her and her blindness. I constantly am having to reassure people that she is okay and it is okay that she's blind. I don't think she'll ever be able to see and there really is nothing wrong with that. I don't want her to grow up with people insisting that she will be sighted one day. Not only to give her false hopes, but I don't want her to think of herself as a "broken" person. She is who she is and she will always be.

Right now she is telling me to get off the computer because my typing is keeping her up. Even though she is in the other room!! She keeps grunting and groaning when I type, so farewell. Sleeping beauty needs her sleep!! Thanks for listening.

KEKOA

Ten years ago if someone would have told me I would have two kids I never would have believed them. I couldn't picture myself having ANY kids at that point. Now, to have two perfect little people in my life...Two people I've known such a short while, but who have changed me forever. I don't think I can begin to put into words the love I have for them.

Kekoa is growing up so quickly. That first year seemed to last a lifetime (not the easiest baby) and now he's almost two. He's talking a ton and is a very opinionated little boy. He sure lets us know what he wants and what he doesn't. I think he's going to be a very knowing and compassionate person. Sometimes when I look into his eyes it feels as if he knows everything that I'm thinking and feeling. I get a sense that his soul is much older than he is. There is something very special about him. He's proven that to us with Oliana.

I picture him in the future as a power house. Always driving forward trying to accomplish his dreams, not letting anything get in his way. It brings tears to my eyes thinking about how he's going to help his little sister. Not by doing things for her, but just by being who he is. I spent a lot of time in the beginning feeling sorry for him. Sorry that much of my attention would be focused on Oli. Sorry that he was going to have to witness humanity at it's meanest at such a young age. I'm now starting to feel that this will give him opportunities and life lessons that he may not have gotten had he had the "normal" family. Lessons I may not have taught him otherwise. Lessons I may have overlooked.

He'll learn to love himself and others for qualities not visible on the outside and that the "eyes" are not always the windows to the soul. He'll learn that beauty is not always in the eye of the beholder but rather in the heart. He will learn to appreciate the world through other senses to identify with his sister. He has already started to do this by closing his eyes and feeling his way through the house. Most importantly, he will learn that he can achieve anything he wants in life and not make excuses for what he doesn't have. I hope he'll be confident and never feel sorry for himself or his sister. I hope he learns that without grief in our lives we never fully appreciate happiness. Most of all I hope he knows how much I love him and how proud of him I already am.