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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.)

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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.

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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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And then….they just let me take her home.

25 Jan

“In three words I can sum up everything I’ve learned about life: it goes on.” -Robert Frost

Now I have answers to most of those questions.

No. She would never see her daddy’s face. But, she would see how beautiful his soul is every time he holds her close to his heart. Every time he fiercely protects his baby girl.

Her brain appeared to be normal but, they would have to do a MRI to be sure. This would not tell me anything about her cognitive function, however. I did not realize back then that the words “her brain appears to be normal structurally” did not mean she would have normal cognition. It turned out to be a blessing that I did not know that then.

Her kidneys were anatomically normal. Except for some extra fluid in them called hydronephrosis and something called vesicoureteral reflux.

What the heck is that?

Pertaining to her story, it was pretty insignificant. She ended up just having a few procedures and was required to take medication so she wouldn’t get a kidney infection. Although the procedure called a VCUG, to test for the reflux, was traumatic for her it was probably more traumatic for me. She eventually grew out of it by the age of 3.

The hearing screen result was a little hairy. The first screen they ran was normal in one ear and abnormal in the other the first time they did it.

You can imagine my reaction when the hearing screen person told us the results. I will never forget the look on her face as she tried to be as gentle as possible explaining that they would have to test her again.

She knew that Oli was blind and I could tell that she wanted nothing more than to tell me my baby would be able to hear me. She could see the look on my face as I silently pleaded with her to tell me the test was normal.

Please let her hearing be okay.

“We will have to run the test again tomorrow. This does happen sometimes. Sometimes we run the test too early after delivery and there is still fluid in the baby’s ears.” she told me as gently as possible.

She came back the next day and tested Oli again.

The results were normal.

She did hear all of my expressions of love.

She did hear me when I repeated “I am so sorry” over and over again.

She heard me when I vowed to do absolutely everything in my power to ensure she had the best life possible.

And then the nurse came in and told me I could take her home.

Just like any other baby. They told me to just take her home.

What was I supposed to do with her next?

They were going to let me just walk right out of the hospital with her?

Were they crazy?

I needed a few more days!

I need to prepare.

I needed a battle plan, an army of soldiers to protect her from the world.

I needed to erect some kind of force field around her.

Wasn’t there some sort of pamphlet they were supposed to give me providing detailed instructions?

Wasn’t someone going to tell me what the next step was?

I was absolutely terrified.

The hospital staff just assumed that I would know what to do?

Why?

Just because I was a NICU nurse?

I was not NOT a nurse at that point. I was a new mother and I needed support. I needed to know there was a path that I was supposed to follow. I wanted someone to direct me and tell me where to go.

I will let you in on a sad little secret of the special needs world. Most people do not tell us where to go for help. Nobody provides us with a list of all the services that our childrn can benefit from. The services our children are entitled to. I guess they think that when we get the diagnosis we automatically absorb this information through osmosis. By being in close proximity to other special needs parents.

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Would she ever see a sunset?

25 Jan

“Through the blur, I wondered if I was alone or if other parents felt the same way I did – that everything involving our children was painful in some way. The emotions, whether they were joy, sorrow, love or pride, were so deep and sharp that in the end they left you raw, exposed and yes, in pain. The human heart was not designed to beat outside the human body and yet, each child represented just that – a parent’s heart bared, beating forever outside it’s chest.” -Debra Ginsberg

The next day the doctors performed a few tests on Oli. One was a CT of her face to determine if she had any eyes or any abnormalities of her brain. Another was an ultrasound of her pelvis to determine if her kidneys were present and normal. And the last was a hearing screen.

It was so hard watching the nurse wheel my baby out of my room that Saturday morning. I knew in just a few hours the results of those tests would be delivered to me and would determine her life, quality of life, or her death. I couldn’t think about the outcome of those tests anymore but, I couldn’t not think about them either.

Would she be able to see her handsome daddy’s face, admire a sunrise in the mountains, or see a sunset over the ocean in her daddy’s beautiful Hawaii?

Or would she spend her life in darkness.

Was her brain normal?

Or would she spend her life confined to a bed, unable to ever care for herself and perform daily activities.

What about her kidneys?

Would they be missing or badly deformed and non-functioning?

Would she spend her life attached to a dialysis machine multiple times a week for hours at a time?

Would I be forced to administer numerous medications with harmful side effects in order to keep her alive?

Was she able to hear her sweet brothers voice when he called her his “bee-bee” and kissed her head?

Was she able to hear how many times I had whispered “I love you” into her ear?

Did she hear how many times I told her I was sorry that this had happened to her?

Did she hear me tell her that I would have offered God anything if He would allow me to trade places with her?

Did she hear me tell her that I wished it had been me that had been born blind and not her?

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I didn’t want to pick her up.

24 Jan

“I may not have gone where I intended to go, but I think I have ended up where I needed to be.” -Douglas Adams, The Long Dark Tea-Time of the Soul

I, however, was not so willing to accept my destiny. I wanted to fight it, change it, punish it, scream at it, plead with it, bargain with it….Anything but, accept it.

I was left alone at the hospital with Oli when Seth had to go and drop Kekoa off back with his Grandma. She was sleeping peacefully in her little clear plastic bassinet beside my bed. I turned on the TV for a little distraction. This turned out to be a very bad idea.

I started watching the new mommy/baby show that is on the hospital channel. I guess I felt like torturing myself for a little while. Watching all those cute babies and learning about their development. They were smiling and cooing at the camera. Their big eyes filled with the wonderment of the new world they’ve just been introduced to.

Would my daughter ever smile at a camera and coo like a normal baby?

Would she even live long enough to achieve this level of development?

These were the earth shattering questions that I felt the need to ponder at this moment. Watching all those beautiful babies I started looking at my own beautiful tiny baby girl. Beautiful but, different.

And then I was afraid of her.

This little 6 pound peanut. I was suddenly afraid of her. How could I possibly take her home and care for her? How could I teach her? I had never even met a blind person before.
I looked back up at the television monitor and wished with all of my heart that I could just reach through that screen and grab one of those babies. I wanted to replace her with one of them. One I wasn’t afraid of. I looked at her again.

I didn’t want to pick her up.

But, then I did pick her up. Because that’s what mothers do. We pick up our children and love them. Even when they don’t fit into our perfect little box of what we thought we wanted. We pick them up and love them because they are our babies.

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Destiny

24 Jan

“Character cannot be developed in ease and quiet. Only through experience of trial and suffering can the soul be strengthened, ambition inspired and success achieved.” -Helen Keller

Destiny is a funny thing. There are times in my life where I have hated it and refused to believe in it and there are times that I have witnessed it’s amazing power. Destiny is a strong word. I do not say this lightly when I tell you that Kekoa was destined to be Oliana’s big brother.

This is the story about my 1st miracle. What better way for a miracle to arrive than in the form of a little, 18 month old boy named Kekoa.

The day that the doctor gave us the awful news about Oliana’s eyes was no doubt one of the most painful experiences of my life. It was absolutely devastating to my husband and I as well as our families. It was devastating to everyone except one little boy. One little bright light that happened to come to visit me that day to meet his new baby sister.

I had just finished telling Seth that our baby was going to be blind. Kekoa was wandering around the hospital room playing with his favorite cars and periodically watching the cartoons I had on the TV. After the tears were dried up and Seth and I had composed ourselves, I ask Kekoa if he wants to meet his new sister. We had been practicing for months with a tiny toy doll and he was very excited to show us just exactly how gentle he could be.

Seth picks him up so he can have a better view of her lying in the bassinet. He asks Kekoa if he wants to give her a kiss. He slowly nods his head yes and says “bee-bee”. Seth leans down and Kekoa gives his sister the sweetest little kiss on the top of her head. He then asks to be put down on the floor. Seth puts him down on the ground and…..

He starts walking around the room with his eyes closed and his little chubby baby hands out in front of him.

He is pretending to be blind.

Somehow this little boy, a baby really, has this whole thing figured out in 20 minutes. Tears that had been dry just a few minutes ago immediately race down my cheeks. How does he know?

He then opens his eyes, turns around and looks at his 2 astonished parents. He just looks at us like, “Yeah. So she’s blind. See I can do it. It’s no big deal.”

I will forever love my son for the millions of gifts he has given me as his mother. However, the memory of him walking that room with his eyes closed with be forever imprinted in my mind as one of the things I love the most. It was the moment I realized that Kekoa was more than willing to accept his destiny.

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Laughter

23 Jan

“The most wasted of all days is one without laughter.” -E.E. Cummings

So I couldn’t help but write a little note about my husband’s reaction to my last few posts. And then our subsequent laughter. Proving once again, you really can laugh at terribly sad things.

Seth was out when I wrote and published the last post. I couldn’t wait for him to get home so he could read it. This one even made me tear up. I’m not a big crier so I was shocked when I re-read the post and felt tears pooling in my eyes.

(How silly considering I wrote the thing!)

I was curious to see his reaction. He is a crier so I knew he probably would. (Sorry honey but, you know you are.) But I was surprised at our reaction afterwards. This is how it goes…

Seth reads the post. I am sitting there staring at his face as he reads it. I am trying not to be obvious about it so I am pretending to clean up the kitchen.

(Shhh. I’m sneaky like that.)

He finishes. Looks up at me with tears rolling down his face and says, “That’s horrible!”

For a second I’m offended. What? Then I realize he’s talking about that time in our life, not my writing.

I look at him with tears in my own eyes as that memory breaks the surface again and tries to taunt me. Reminding me of how incredibly sad and helpless I felt then.

It only stays for a moment though and then retreats back into the cave where I have sentenced it to live in the back of my mind. Those memories of complete sadness are not allowed out very often.

Then I look back up at Seth and our eyes meet. We both burst into uncontrollable laughter.

ME- “That sucked!”

SETH- “It did suck didn’t it!”

And then we laugh some more. Because that’s what we can do now. I never want to go back to that place of grief but, sometimes it’s a good reminder of how sweet the laughter can be.

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Mother’s Day Weekend

23 Jan

“Life shrinks or expands in proportion to one’s courage.” -Anais Nin

After the doctor left my hospital room that day I felt pain like I have never felt pain before. I started questioning things that I have never questioned before and I began to ask the obvious question, “What the hell just happened to me?”

In a mere 10 minutes my entire life had changed.

The worst thing was, I had to be the one to tell my husband. He didn’t even know yet. I had to tell this poor guy, who wanted nothing more than to give his children anything and everything in this life, that there were going to be things he wouldn’t be able to give his daughter.

I was going to have to break his heart like it had never been broken before. Damn that doctor for leaving me with this responsibility!!

As it was, though, I couldn’t really think of anyone else who should tell him. I surely didn’t want that doctor to come back in here with his emotionless tone and his slightly bored attitude. I didn’t want that guy telling him that all his wonderful dreams of showing his daughter the beauties of Desert Mountains and Hawaiian sunsets were never going to happen.

I had to be strong for him.

I had to pretend that I knew we were going to get through this. And I was going to have to do it soon because he had just walked through the hospital room door. He walked in holding my beautiful baby boy and an armful of balloons and flowers.

Because…it was Mother’s Day weekend.

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What did he just tell me?

22 Jan

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Seth left the next afternoon to go pick up my son Kekoa (he was 18 months old) from his Grandma’s house where he had been staying. The pediatrician, who was supposed to come and look at Oli in the morning, still had not shown up. A little while after Seth left, the doctor walked through the door.

“I’m just here to take a look at your baby.”

I sit up in the hospital bed anxiously awaiting his assurance that everything is fine. “Ok. I’m kind of worried about her eyes because she hasn’t opened them yet. I think they’re just swollen, you know because I had been in pre term labor awhile and I’m sure that stressed her out and probably caused some swelling, but I’m sure she’ll open them soon. Maybe later today or tomorrow. Do you think? I’m sure there’s nothing wrong. They’re just swollen. Right?”

He just looks at me like he’s mildly bored and somewhat irritated because I am rambling at this point. I tend to ramble and talk really fast when I’m nervous.

“Are you going to look at her eyes?” I ask. I am quickly losing patience with his non-committal attitude.

He is looking everywhere else besides her eyes. Her feet, legs, tummy, arms, nose, mouth. Taking his sweet time at it too, I must say. I just wanted to scream at him “TELL ME NOTHING IS WRONG WITH HER EYES YOU BIG JERK!!”

Finally he tries to open her eyes. Oli starts screaming her head off like he is trying to rip her eyelids apart. Which is essentially exactly what he was doing because they were literally fused together. After trying this for a minute he puts the blanket back over her, straightens up, looks at me and says,

“Well, I think she has either really small eyes, or no eyes at all and she will be completely blind. Microphthalmia is what it is called. Do you have any questions?”

My mouth is now gaping open, tears are pooling in my eyes, and I’m looking back at him with a mixture of astonishment and offence. Do I have any questions? Well let me see… I guess I have two. Where did you get your medical license and where do you live so I can come rip your heart out while you are sleeping. Like you just ripped out mine.

Did I have any questions? What a dumb question. Of course I had questions but, at that point I couldn’t even remember my own name let alone think of a way to put together a question out of the millions of thoughts racing through my head.

“I don’t know. Have you ever seen this before?”

“Once. 15 years ago. A little boy that had Fraisers Syndrome. We’ll have to check her kidneys. She might not have any kidneys.” He answers with a blank, emotionless expression.

Again I am staring at him with my mouth open. Did he just say what I think he said? No kidneys? That means death right? I mean, I am a nurse and I’m pretty sure no kidneys means death. Did he just tell me she might die?

“Ok then. I’ll order some tests and we’ll let you know.”

With that he promptly walked out of my hospital room leaving me alone with my new baby that I now thought might die.

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