Archive | 10:38 pm

Mom…my baby is blind.

26 Jan

“I cannot forget my mother. She is my bridge. When I needed to get across, she steadied herself long enough for me to run across safely.” -Renita Weems

I think the hardest phone call I have ever had to make was the one I made to my mother, telling her that Oli was blind. I don’t even remember the details of that conversation but, I remember thinking…

I can’t believe I’m telling her this.

I can’t believe that I have to tell her that I will not be able to give her granddaughter the kind of life that she gave me.

My mom LOVES her grandchildren! ( Notice the capitalization and exclamation mark. This means that sometimes I think she loves them more than me.)

I can’t even imagine what she was thinking when I whispered those 5 words into the phone that day.

Mom, my baby is blind.

I could hardly even speak the words. I didn’t want to speak them. If I said those words to someone outside my hospital room, that would solidify it. That would make it real. I didn’t want it to be real.

I was crying uncontrollably and I just wanted my mom to do what she always does when I am hurting.

I wanted her to make it go away.

I wanted her to stand up for me, yell at someone for me, tell me how unfair this all was.

I wanted her to say that she would fix this for me.

But, she couldn’t make it go away this time.

This is the one time my mom didn’t offer to fix it for me.

She just cried with me. She told me how sorry she was that this had happened.

And then she told me that it would be hard but, I would get through it.

My mom’s heart was broken that day.

She loves me and my children like her life depends on it and I know that if she could have bargained with the devil for Oli’s eyesight she would have done it. If she could have fixed it somehow, she would have. She would have fixed it so that I didn’t have to feel this unbearable heartache.

But she didn’t offer me a lie that day.

She didn’t offer to do something that she knew she could never make happen.

Moms can’t always fix things for their children, even when their hearts are shattering to pieces before them.

My mom showed me that day how hard it really is to be a mother. I love her immensely for the things that she unknowingly taught me that day. Things that I now know are the honest gifts of a mother to a child.

She has never lied to me when she knows something is going to hurt.

Never promised me things she knew I will never have.

And she has never tried to fix something for me when it is not truly broken.

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8 things I wish I would have known when Oli was born.

26 Jan

“None of us is as smart as all of us.” Eric Schmidt

1. I am my child’s parent 1st.

I am not her therapist, or teacher. I am definitely not her drill sergeant. It’s okay to just be her mom sometimes. Of course, I still have to work with her at home. But, I no longer have that tremendous amount of guilt when I just cuddle her instead of doing physical therapy exercises. I don’t feel guilty when I carry her up the stairs once in a while instead of forcing her to walk up them when she doesn’t want to.

A woman from the Texas School for the Blind and Visually Impaired told me this when Oli was 4 years old. It was the first time anyone ever gave me permission to “just be her mom”. I will never forget that because it was the gift that I had been aching to receive since the day she was born.

2. Think about today.

Boy, does this one catch me up sometimes… I don’t need to worry about the things that Oli will or won’t do 10 years from now. (I really like to do this!) It just weighs me down when I do. I have realized that she can do what she can do today and that is just fine. I really can’t tell you what her future will look like but, for right now, what she is doing is perfect.

3. Don’t be afraid to be Donald Trump

If a doctor talks about Oli while she’s in the room like she is not even there, I fire them.

If a doctor is not compassionate and does not realize the he/she is treating my whole family and not just my little girl, I fire them.

If a doctor or therapist seems annoyed that my 2 year old is crying and my 7 year old keeps interrupting because he wants me to look at his latest accomplishment on his Nintendo DS game, I fire them.

These doctors and therapists have no idea how many times I have dragged my other children to these appointments. How many hours of their short lives have been spent in waiting rooms and in the car driving to different appointments. If they cannot respect the fact that my other children are also affected by Oli’s disabilities, we find someone who does.

4. Google is my friend.

5. Laughter is an even better friend.

6. I probably have Post Traumatic Stress

Oli’s wonderful pediatrician in Las Vegas, Dr. Hyun, told Seth and I this while we were sitting in her office one day.

It could have been our red swollen eyes, lack of matching clothes,all around disheveled appearance and the “Holy shit! What just happened?” look on our faces that tipped her off.

It was the first validation I received that all the craziness in my head had a diagnosis.

7. Functional not Perfect

So many therapists would spend hours trying to get Oli to do things perfectly. She was never successful because the reality is, no child does things perfectly when they are just learning to do something. Special needs or not.

Oli’s new physical therapist, Cathrine, was working on trying to get Oli to stand up from the middle of the floor. (We had been working on this for a couple of years with different therapists.)

She told me on her first visit, “I don’t care how she does it. I just want her to be able to do it. It doesn’t have to look pretty.”

And guess what….Oli did it!

8. Special = Expensive

Having a special needs child is very very expensive. I had to claim bankruptcy when Oli was 6 months old because of the mounting medical bills, co-pays, and things our insurance didn’t cover.

Very Special = Very expensive

(It’s okay. I’ll still take very special, even though it means I’m broke all the time.)

Never going to be the same…

26 Jan

“We must be willing to let go of the life we planned so as to have the life that is waiting for us.” -Joseph Campbell

We drove baby Oli home on a warm sunny day.

I was trying my hardest to be upbeat for my son despite my inner turmoil. I was sitting in the back seat with Kekoa, listening to his favorite nursery rhyme CD.

As we were driving past the desert mountain bike trails that Seth and I used to ride, I am reminded again of another life. Another person that I’m having a harder and harder time connecting with.

I feel like I am floating away.

Leaving behind the person I was. My life, that used to make perfect sense to me, now I can no longer recognize. I am being consumed by despair of the unknown.

I look at Seth in the review mirror.

Our lives are never going to be the same.

A medieval torture tactic

26 Jan

“I liked things better when I didn’t understand them.” -Bill Waterson

So that’s what I did. I just took her home. I didn’t have a battle plan or an army and I certainly didn’t have a force field. I had the only things I could offer her at the time. I had an infinite amount of stubbornness, a heart bursting with love and two eyes that I would share with this little girl for the rest of my life.

An enormous amount of weight settled on my shoulders that day as I strapped this tiny person into her car seat. I could feel the weight threatening to suffocate me.

Before I left the hospital, my sister in law, gave me a website. It was for an organization called ican. International children’s anophthalmia and microphthalmia network. www.anophthalmia.org I did not know that this information would become a life line when I began my adventure into the unknown.

I did know that no one in that hospital had ever really seen a child born with this condition. The only person they could direct me to was a pediatric ophthalmologist.

So before I left the hospital I googled ican. It was full of people,terms and images that were so foreign to me, I had a hard time comprehending what they were saying.

I didn’t know what an Ocularist was. This was a profession? I had never heard of it. Of course, I had never heard of a baby born without eyes either.

So I googled ocularist. Apparently he was some sort of artist that made these things called conformers.

I googled conformers and was overwhelmed by what I read. An ocularist makes, and then forces these conformers into the eyes of anophthalmic and microphthalmic children in order for the eyes to stretch big enough to wear painted prosthetic eyes. At the time, this sounded like some kind of medieval torture tactic.

What? This sounds barbaric! Wasn’t there some kind of new technology for these children? Something not so painful?

We would have to do this every month for years in order for her to wear prosthetic eyes. And it might not even work. Her eyes might never stretch enough to wear prosthetic eyes.

It said that we would need to start this process as soon as possible to give her eye sockets and eye lids the best chance of stretching. Then I read on another web site that if I didn’t do this to her, her face might cave in. (Untrue, but I didn’t know that until talking with other parents.)

I had to turn off the computer. I grabbed Oli’s little pink newborn blanket, buried my face in it and just cried. I cried for myself, I cried for her, I cried for Kekoa and Seth. I cried like I have never cried before. I did not want to do this. I did not want to have to put this little baby through procedures that would hurt her.

What kind of a mother volunteers her baby for pain?

But, I didn’t want her face to be deformed either.

I cried harder.

And then I picked her up and whispered “I’m sorry” again.

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