Archive | Family RSS feed for this section

Pretending

28 Jan

“Dear today,

I spend all of you pretending I’m okay when I’m not, pretending I’m happy when I’m not, pretending about everything to everyone.” -Nina LaCour

After a few days of the earth quaking beneath my feet I think I began to absorb the shock waves that hit. I became numb. I went into what I now call, my “I’m fine mode”.

A few people were really good about calling me to see how I was doing. I would always respond with the same response. No matter how I was actually feeling.

I’m fine.

Fine really stands for:

F#$@&* Up

Insecure

Neurotic

&

Emotional

That’s exactly how I was feeling.

But I could never lower my defenses long enough for anyone to get a real glimpse inside.

I didn’t want anyone to think I was weak.

I really got into the “I am indestructible” role I played for everyone.

In reality I felt like I was falling apart.

If I would have let someone inside my head at the time this is probably the conversation they would have heard.

How are you doing Shannon?

Well, let me see. I just had a baby that has some pretty significant disabilities and my son is still only a baby himself. I am completely terrified not to mention that this really just screwed up my whole plan for my future. I just want to run away from it all but, you see I have this image I portray to the world and running away isn’t really in sync with the “pretend” me that everyone is counting on. Everyone is counting on me to be this person that knows all the answers so I just need to go along and fake my way through it. Even though I really just want to curl up and die.

Nope. I definitely could not let that craziness out of the bag.

So I just went on pretending.

Everyday I was the feature actor in my own life.

Tags: , , , , , , ,

Life…it’s not always easy

28 Jan

“Life is loving so hard you inspire and become inspired to be the next level of the person you never knew.” -Unknown

After Oli’s bath that night I gave Kekoa his bath. He was so happy that we were home and he was especially happy to have his baby home. I got the cutest pictures of him with Oli that night.

Babykoababyoli1

He was so amazed that this little doll was real. She wiggled and cried. She would grasp his chubby finger if he placed it in her hand. He just kept staring at her tiny hands and feet.

After I took some pictures we went into the bathroom and I started filling the tub with water. When it was ready Kekoa climbed in and began to play in the warm water. I was just staring at my perfect little boy.

My little boy.

I cried the day I took Kekoa home from the hospital. I had to go out to Target and I started sobbing in the passenger seat on the way there. Seth looked over at me like I was crazy.

“What’s wrong? Why are you crying?”

“I don’t know. I’m just so afraid for him. I’m afraid we’re going to get into a car accident and he’s going to get hurt. I’m afraid someone will want to look at him and accidentally sneeze on him and he will get sick.”

“I’m afraid someone will want to touch my new baby.”

“I just want to protect him from the world.” I sobbed.

I remember all those fears while I watch my son take his bath. I am overwhelmed again by my fierce instinct to protect him.

I want to protect him from this challenging and unfair life that now lays before him.

I want to protect him from the bullies at school that will tease him because his sister is different.

I don’t want him to ever see people staring at Oli. Watching his little face as he tries to comprehend why people are looking at his little baby and then turning away with pity on their faces.

Watching him try to understand the question that will inevitably come.

What is wrong with her?

I just love him so much and I want to give him everything.

I realize now, that I just wanted to give him everything that was easy.

Life is not always easy.

She gave me a new meaning to that phrase.

It no longer meant that life wasn’t easy because the money was a little tight that month. Or that it wasn’t easy because I might not be able to afford the new car I wanted or the bigger house with a bigger yard.

It used to mean that life was hard because I might not get what I want.

Now it was hard because I began to see how small and insignificant this all was.

It was hard because I now realized all that I had taken for granted and just thought I was entitled to.

It was hard because I really wanted my old life back.

I didn’t want to think about all of the challenges that now faced my family.

I wanted to remain where I was, even if it meant I would never grow.

I wanted my son’s life to be easy.

I could only look at him and cry. I just looked at him and repeated the 2 words that had become my mantra to my children.

I’m sorry.

Tags: , , , , , , , , , ,

It was blue.

27 Jan

“There is no better way to thank God for your sight than by giving a helping hand to someone in the dark.” -Helen Keller

The first night at home with Oli I did what I always do with my babies. I gave her a bath. She was so tiny and sweet. I washed her little arms and legs. Her little round head covered with blond fuzz that I was so excited about. Kekoa had been born without a single hair on his head. I washed her petite nose and her small eyes that still had not opened.

I just wanted her to open her eyes.

When they did the CT at the hospital the doctors told me that both of her eyes were extremely small. The left measured only in the 10th percentile of normal. The right was half the size of the left. We would later see that her right eye was really just an empty socket. What they saw on the CT was only a bit of underdeveloped tissue located behind her socket.

I knew that her left eye probably wouldn’t look like a normal eye but, I still needed to see it.

A mother needs to inspect every single part of her new baby.

I felt like I was being cheated out of that right as her mother.

No matter what it looked like, I needed to see it.

After her bath that night I tried to fill out the information in her baby book. A pink baby book. A book that I had spent a lot of time searching for. It had to be the perfect book because when I bought it at 8 months pregnant, I knew my daughter would love to read through it someday. Just like I still like to look through my baby book.

I started filling out the questions.

What time was she born?
How much did she weigh?
How long was she?

Then I got to a question that made my heart drop.

What color were her eyes?

My eyes filled with tears.

I don’t know.
I don’t know what color her eyes are.
Why can’t she just open her eyes?
Why can’t I do something to help her?

I still hate that book. I haven’t look at it in years. I hate it because I remember sitting in my brown rocking chair by the window. I remember reading that question and feeling incredibly small and useless.

I hate that book for making me feel like I was useless to my daughter.

She finally opened her left eye 2 days later.

It didn’t look normal. It was small and underdeveloped. It had a tiny blue iris that danced around in her head.

I knew that she couldn’t see me with it. When she opened her eye I knew that my daughter would never see me.

But, to me, it was beautiful.

I was finally going to be able to write down in her baby book what color her eyes were.

It was blue.

Tags: , , , , , , , , ,

Isolation

27 Jan

“If isolation tempers the strong, it is the stumbling-block of the uncertain.” -Paul Cezanne

When Oliana was born we lived in a town called Pahrump, an hour outside of Las Vegas. We had moved there from Vegas only 5 months before her birth. I took my baby home to a house 1500 miles away from my mom, who lived in Iowa.

I had never really felt lonely before but, that day I began to realize how alone and completely isolated I was.

I just wanted my mom.

I have always been a very independent person but, right then, I just wanted her near me. I wanted her to hug me and tell me again that I was going to get through this. And that it really wasn’t as difficult as I imagined. Even though she had never raised a child with a disability, I wanted her advice on how to walk this difficult road that now lay before me. I had no idea even where to begin.

Going back to that house in Pahrump felt like being abandoned on a sinking ship.

There was no one around that I could use as a life raft when I began to feel like I was drowning.

There were no doctors or therapists for her in Pahrump. Oli’s nearest physician would be an hour away and I still didn’t know exactly what kind of medical complications she might suffer from.

I began to realize what a terrible mistake it had been to move to there.

I didn’t know back then, what living out there in isolation was going to do to me.

Tags: , , , , , , , ,

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.

Tags: , , , , , , , , ,

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.)

Tags: , , , , , , , , , ,

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.

Tags: , , , , , , , ,

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.

Tags: , , , , , , , ,

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.

Tags: , , , , , , , , ,

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?

Tags: , , , , , , , , ,

← Older Entries
Newer Entries →