Night and Day

 I'm blind.... So what?? Being blind is normal to me. I don't want people to be sad for me. Being blind doesn't describe who I am. Blindness is just one small part of me. I love my life. And not being able to see does not slow me down. I can still hear, feel, and taste the world around me. But I don't want to get into the present part of my life just yet.  I would like to talk about a certain day when I was a 1yr old.
I had an appointment in California. It was so they could figure out just how much I was able to see, or not see. We waited for this day for a long time. And it was finally here. My mom packed my bags, her bags, my dad's bags, everything we needed. And we were on our way. My nana even came with us. It was a really long drive, but I never made a peep. I love riding in vehicles.
Before we left, my mother and father were told to be careful when they got to California. Because if they turned down the wrong block, or street, or anything, that they could be shot!! Yeah it put a big scare in them. At that time, they didn't have any kind of navigation system or anything fancy like that. They went off of a map.
We finally get into California right? And they are going off of this map and trying to find where it is we need to be going. Well my dad turns down this road which was the way we needed to go I think. But as they kept driving they got a lot of dirty stares.  People were walking and looking at us, looking at us through their windows, or stepping outside look at us.  I guess everyone was just staring. My dad was driving really slow too. Everyone in the car was completely silent. It was so quiet. Eery too at the same time.
My dad comes to a red light. He has no choice but to stop. There is one other car stopped as well but coming the opposite direction. There was also people standing on the corner staring at us too. My parents and my nana just wanted the light to hurry and turn green. It seemed like forever waiting for it. Finally the light turned green. My dad pushed on the gas to go and than we all hear a very loud BOOM!! My mom, dad, and nana FREAK out. GUN SHOT!!! My dad, mom, and nana are ducking and scared to death!! We are all going to die any second right!!!  Well, the next thing I hear is my dad. He say's a really really bad word. Wait. He YELLED a really really bad word. And after the bad word he said......."That car backfired! It wasn't a gun!"
 (remember the car I told you about that was stopped at the light too? Yeeeeah.....it was that one. It backfired!)
  And my mom, dad, and nana, thought they were being shot at!  Now that's FUNNY!!!!!!! I was laughing at all of them the whole time and they didn't even know it. Maybe because they were all laughing loud too.
But finally after thinking they were getting shot at, my dad found the place. Here we go. We get in there, and the doctor asked my mom to sit down on the black chair and hold me in her lap.
Great!! This isn't going to be bad after all! ......That's what I told myself anyway. I hear the doctor tell my mom that he was just going to shine a bright light in my eyes. I think to myself...."okay. cool"
Okay can I ask you a question?? Will you put yourself in the worst situation possible including having your worst fear so close to your face that its touching your nose? Something that would just terrify you to the extreme?? Put yourself there and try to imagine your reaction?? Because that's the only way I can describe how I felt when the Dr. put this light in front of my face. I heard him click it on. And as soon as he did, what I saw terrified me. It scared me SO much I screamed at the top of my lungs. It was such a fearful cry that the Dr. turned it off right away. My mom was holding me so tight. And I didn't want her to let me go. I can't tell you what I saw exactly. But I do know it really really scared me. But because I reacted in that way, the Dr. told my mom and dad that I do have light perception. How much??? He doesn't know. Can I see shadows too?? He doesn't know. No one will ever be able to know what I can or can't see unless I am able to tell them myself.  I wish I could tell my parents or the doctors what I can or can't see. But I can't.
I believe in God. And I believe that everyone has a purpose. There is a reason I’m blind even if I haven’t figured it out yet. Maybe some day they will come up with a cure. If they do then that's wonderful. If they don’t then I’m not going to spend the rest of my life feeling sorry for myself. And I don't want anyone else to either.  I have a life to live and I’m not going to let blindness or anything else stop me.
My mother I know still has her moments. She doesn't feel sorry for me. But I always hear her say that she wishes I could have at least one day to see. She has these pity party moments that make it hard for her to breathe. Christmas trees, fireworks,  snow, rainbows, flowers, stars, clouds, just MOTHER NATURE. And Holidays. I don't know what I'm missing out on. Or I'm not even sure if I'm missing out on anything at all. But, for some reason she gets really emotional. She has to swallow back the huge lump in her throat and blink back the tears. But please don't feel sorry for her or for my parents Because I'm not. And neither are them. These bad days my mom has are very few and far between, but they are still there on occasion.
In some ways, I think my blindness is a blessing. It helps to teach my parents, my siblings, and the rest of my loved ones patience, tolerance, and to understand that it's OKAY to be different. If everyone was the same it would be REALLY boring right??
The picture below is on my 1st birthday.
I TORE that cake up!!!
LIKE A BOSS :)

It's okay to get angry at God. He can handle it

First Diagnosis: ONH
Here we are.....at home......in silence. My mother won't put me down. She keeps crying. My father isn't saying much either. She's in the room with me and he's in another.
After a long while my father comes into the room. He sits down right by my mom. And they just sit  together in silence.
Throughout the day that's how it was. Just quiet.  Eventually the silence stopped....And than I my mom said "I'm angry at God"..................that' all I heard her say. My dad didn't reply back to her. And rather than talking about it, she held it in until she no longer could. After that, all the hurt and anger just exploded out of her.  Like a coke can being shaken up, or a volcano. She just exploded..... She hated the world..... And my dad was her target. She took all her emotions out on him....... ...
 My mothers anger eventually went away but she still would cry. Was she still angry with God??..... I don't know....... I never heard her talk about it again. But I tried my hardest to make her laugh, or even smile.
I'm thinking, "Mom, look at me. I am okay! I am happy! I have nothing but smiles to give you! I don't know what being blind is, but whatever it is, it can't be all that bad. I don't feel anything different"

She couldn't hear me I know, but, I hoped that somehow God allowed her to hear me in his way. Because after about a week later my mother would laugh more than she would cry. She was finally able to talk about my blindness without breaking down every time. And she started singing to me again.  My mother was back! And she sang the same song to me every single day. "Dreams to Dream- By Linda Ronstadt. I fell asleep every single time too. ...

Between me and you..(whispering).....I think God and my mother had a very long talk. And that she wasn't mad at him anymore. <3

Hope, Faith, Love

Optimistic -  Hopeful and confident about the future.
Hope -  A feeling of expectation and desire for a certain thing to happen.
Faith -  Complete trust and confidence in God.
Love- The most spectacular, indescribable feeling
 

  These 4 words are powerful you know. I think people should use them everyday. No matter what. Sometimes it's hard I know. When you aren't able to, that's when another powerful word comes in......prayer. Because God will feel your soul with those words. God is amazing. 
  Optimism, hope, and faith, were what my mom and dad were feeling that day. Their hearts were filled with it. 
  Yes this is the day. The day I go back to the eye doctor. It's finally here! I am six months old. My mom and dad couldn't wait to prove everyone wrong. To call everyone and give them good news. And say. "His eyes are fine.".... But that wasn't the case. 
Did you know that it just takes a second for your world to come crumbling down? Seconds. Just like that.
  When we walked in the room my mom was holding me waiting for the Dr. to come in. Was my mom and dad nervous?? Of course. But they still hung on to the hope. Hung on to their faith, that everything was going to be okay. 
The eye doctor finally walked in. Right away my mom and dad stood up. He smiled and said hello to my parents. My dad said hello and my mom smiled. The eye doctor and my mother made this eye contact. Not just any eye contact, but the kind where his eyes were talking to her eyes. I think she knew something at that moment because I felt her heart start to beat really fast and she started to breathe faster. The room was nothing but complete silence for a few seconds.
The eye doctor said "Your son has ONH"
"What's that?" My mom asked. 
The eye doctor said. "I'm sorry. But your son is blind in both eyes"

And just like that,....my mom and dad's world was broken
I don't remember my dad's expression. But my mom. ....She could barely breathe. She didn't move. She didn't flinch, blink, nothing. She didn't even cry. She didn't say one word to nobody. She stood so still and  just kept staring at the Dr.  It was like her body was there but her soul wasn't. 
She just turned around and walked right out to the car. With this blank stare on here face. 
The whole car ride back was nothing but silence. I was even quiet. When we got home my mom took me straight to her bed and laid down by me. But there was still no emotion that came out of her. She just laid there with me in silence. 
That's as far as I can go now. I don't remember anything else after that. 
But I would love to

explain my first diagnosis with you. 

When we see, light through the outside world enters the eye. It passes through the eye and enters the Optic Nerve. The Optic Nerve transmits the light from the eyes to the brain. It is our brain that processes the light that enters our eyes from the outside world and interprets it as images. This is what happens when we see. The Optic Nerve, in a real sense, is the telephone line that allows the eyes to communicate with the brain.
ONH is the underdevelopment of the Optic Nerve during pregnancy. For people with Optic Nerve Hypoplasia (ONH), the Optic Nerve is either nonexistent or did not develop properly. Many people with ONH also have malformation or absence of other structures of the midline of the brain that are physically near the Optic Nerve. 

 

Leave me alone. I'm okay

I was my mother's first baby. So she was still learning a lot. Well remember the car ride I told you about??? How it calmed me down? Well here is another ball I'll throw at ya.
Okay so I had cradle cap right. My mom was getting me ready to wash my hair. She took off my pajamas and wrapped me up in a towel. I was mad and uncomfortable. I started to cry in hopes that she would take me for another car ride..... Didn't work that time. :)
Anyway, so I hear the water coming up and I'm thinking I'm just going to get another bath. I had no idea what my mom was doing. I just wanted my pajamas back on, wrapped up in my blanket, and sleeping. I'm frustrated at this point and still crying. Next thing I know the water is just falling on my head. It was kinda like a massage. It felt so good that I stopped crying. My eyes were wide open and I was loving this feeling. As I was enjoying this moment, I was in deep thought about how cool it was that I not only have a nice car ride to go on if I get fussy but now I also have this water thing going on. heh heh heh, my mom is in for it now. :) 
While my mom was letting the water run down my head, she had a visitor that was standing right next to her. They were just chatting back and fourth about how adorable I was. Because I am you know. Than my mom's friend tells her that my eyes were moving weird. My mom looked at me and said "His eyes are fine. He's a baby.".......The subject was dropped after that.
A few days later my parent's and I went to my mother's house. My nani. I know more people were there I just don't remember who. The one that does pop into my mind though was my mom's Tia Bernadine. Why??? Because when she was holding me, she brought up my eyes too. She said that they shouldn't be moving around that much.
After getting two opinions about my eyes, my mom just wished everyone would just stop talking about my eyes. Because she said I was fine. There was nothing wrong with my eyes. But the more she thought about it,  she called and made me an appointment just to be safe.
The eye doctor told my mom it could be because I was a preemie. That they had to come back when I was six months old to find out what is going on and to see if I had more control over my eye movement.
Those 4 months went by so slow for my parents. It felt like years to them.
My mother kept telling me everyday that my eyes were fine.

That they were going to be fine.
That everything was going to be..........just.............fine.

Something wasn't right

The first couple weeks went by great for me at home.  The only thing that I didn't like was that my  mom tried her hardest to keep cooking me her delicious food but I guess her oven broke. I had to start drinking this nasty stuff that didn't taste as sweet. I took well to it though I think. .....I mean, ....I had to eat right? I still liked the home cooked stuff better though. Other than that, everything was going great!!
My mom bragged to everyone about how good of a baby I was. Because I never cried. I maybe wined here and there but never really cried. That was until this one particular night.
My mom's cousin Melissa invited my parents over to go hang out. Melissa loved babies and wanted one of her own one day. So she spoiled me pretty bad. I liked it though. She was even so nervous about me sleeping and "rolling over" that she surrounded me with pillows! It was like a complete circle around me.  I thought it was funny because what she didn't know was that I was still too little to even roll over. But that's okay. She took very good care of me. She kinda like stole me from my mom and took over. I didn't mind it though. I let her have her fun.
Later as it got darker I finally woke up and everyone wanted to go to dinner. But I started to get fussy right away.  My mom said she was going to feed me first,  and change my diaper, and than they would go. But my fussiness later led to full blown crying. I mean not just a normal baby cry. But a high pitched scream painful cry!  Like I was in this awful pain. My mom was scared. She didn't know what was wrong. I have never done it before. I was fed, my diaper was changed and wrapped up in my blanket the way I liked it. So she thought maybe I was hot. So the blanket comes off of me and she picks me up. I'm still screaming. She takes off everything except my diaper..... still nothing....I'm still screaming.
My mom tried everything that she knew relaxed me. Singing to me, my pacifier, rubbing my head, etc.......nothing. I was still screaming and it kept getting worse. At this point my mom and dad decided to take me to the hospital. They didn't know what was wrong. My mom was really scared. She was shaking. So she got me dressed and put me in my car seat. They hurried to the car and buckled me in.
I'm still screaming at this point....  They got into the car and my dad started to drive. As SOON as the car moved.............silence........... I stopped crying.  I was awake, I was calm, I was relaxed.......I was fine.
My mom and dad couldn't wrap their head around what just happened. But neither could I. As far as my parents knew and could figure out at that time is that , I just liked being in the car.
 The drive was relaxing and I enjoyed it. Finally we got back to the house.
I was happy and comfortable.
I was finally back home.

Home

Two whole weeks in the Hospital and I can FINALLY go home!!!! My parents were waiting for this day to come. Now it's here!!
My mom and dad were excited and getting everything packed and ready to go. The nurses told my dad he needed to bring my car seat into the nursery because they needed to see how well I was able to breathe while I was in it. I am happy to say, I did well. :) The nurses were really sad and they cried that I was leaving but happy that I was doing so good and able to finally go home!!
I wish I could say that I was also able to leave my oxygen behind. But I wasn't. I had to bring it home with me. They gave me a tiny little tank for my mom to pull around while she carried me.
So I'm packed up, in my car seat and ready to go!! I could hear my mom and talking about the oxygen tank. My mom was really scared to be driving with it in the car. My dad had to drive his work truck home while I rode with my mom in the car.
My mom was So nervous!!! She wanted to get me home safely. The oxygen tank didn't make it any easier either.  She was going so slow that I'm pretty sure a turtle could have beat her home. 
Seriously........
Finally,..... a year later we made it home. Just kidding not a year but it sure did feel like it. My mom was afraid to lay me down in my bassinet  cause of my oxygen, so she held me a lot.  Which was okay with me. I even got to sleep with her when night came! I slept like a baby. Literally.....
The next morning my mom had to run errands. She was afraid to take me in the car again so she called my nana and asked her if she could watch me while she was gone.  My mom refused to take me anywhere really while I was on oxygen unless she had to because she was so scared something would happen. So me and my mom stayed home a lot until I was able to get off my oxygen.
After being home for a week I was oxygen free!!! I was doing everything on my own!! My nana even took me and my mom to get my pictures taken. I wore some preemie clothes my mom bought me, but on one of the pictures I was an angel. The clothes swallowed me!! But I still made a pretty adorable angel!!! Cause that is exactly what my mom said I was. An angel!!! <3

Waiting to go home....

    It's been over a week and I'm still in the hospital. I am still on oxygen and still trying to finish my 4oz bottle. I am however, able to drink more than half now. I am getting so much better! And getting stronger by the minute. I hope I can get rid of this oxygen soon too. But I'm only on a bubble. So it won't be long for that either. I just want to go home already. It's so boring here. All I do is sleep, eat, and make surprises in my diaper for my mom. Home has to be funner than this!
    Days go by again, and I am still trying my hardest to finish my bottle. I was drinking more than half now. I was getting excited! And so were my parents. We knew it was only a matter of time.
     It's been 2 weeks now and time for my feeding. I'm drinking drinking drinking drinking. Than about halfway I get sleepy. I'm tired and start to fall asleep. My mom says "No no no, don't fall asleep. You have to finish."
      But I just ignore her and close my eyes. Than next thing I know, she is unwrapping me. WHAT!!! NO!!! I was SO comfortable. Now what??? I start to move a little bit and here comes the bottle. ugh. Ok mom. I'll eat a little bit more. I take a few more drinks and than zzzzzzz. Than I feel my mom kissing me all over my face. Really mom?? I am TIRED! Next thing I know she is taking off my pajamas and my socks!!! What is she doing??? I don't have a messy diaper! But she changes me anyway. I'm telling you, my mother is weird!! Than she says "Your almost done"
Almost done with what?? I'm thinking SHE needs to be done so I can sleep!!! Oh well, I'll manage I guess. without my pajamas on OR a blanket. I will still fall asleep. And so I close my eyes........
BRRRRR!!!  What is she doing now!! I'm freezing!! She is rubbing that cold thing on me again. She already did that today!! At this point I'm crying because I want to be cuddled up in my clothes and blanket and sleeping! Ok mom......I'm awake now. Thanks a lot. Now give me at least a blanket please. She put my pajamas back on but didn't wrap me back up. I guess it's better than nothing. ok mom. Are you finished now? Can I please go back to sleep?!?
          NOPE! Here comes my food again. So....I'm drinking, drinking, drinking, drinking, drinking.
Next thing I know there is nothing coming out.
Ladies and Gentlemen,
I FINISHED my bottle!!!!!! WHOOP WHOOP!!! I'm going home!!!!
.....Your keeping the bottle mom?? Really?? mmmmmmmk

     

Three Days Old

December, 20, 2001.
Yes. God did come and visit me on this day. Or maybe he came to me the night before while I was sleeping? hmmm. But either way, he visited.
I was breathing by myself  SO good that I only had to be on a bubble of oxygen. Not much at all!!!!  My mommy and daddy were finally able to hold me!!!  The feeling of my mommy and daddy holding me was indescribable!!  And guess what else?!? God also helped me to get this sucking thing down so I could drink that yummy stuff like a big boy! I was SO proud of myself! I couldn't wait to show mom and dad what I finally learned to do!
 My mom and dad were VERY VERY happy when they found out. When they watched me, I felt like a super hero who just got a new power. Kinda like the Peter Parker/Spiderman story. Except a spider wasn't the cause.  God was.
 I was finally able to do this perfectly. But it didn't end there. I now had a challenge. The nurses said that  I needed to be able to drink 4oz from a preemie bottle before I was able to go home. Grrrreat! How was I suppose to do this. It was too much for me. And all I really wanted to do was sleep. But I had to do it, or at least try if I wanted to get stronger and go HOME!!
I remember my mom was filling  up the fridge with my yummy food. I mean she made me a lot. She is a really good cook!!  My mom made so much that the nurses joked with her and told her that she was a Jersey. My mom laughed back at them pretending she knew what they were talking about. But she really didn't.  Actually,  I don't think my mom found out what it meant until the next day. But when she did, she laughed and laughed.
 My mom, dad, and nurses were always rooting me on to drink the whole 4oz bottle. But I never could. Not even half. Every day I tried and tried. I tried my hardest. But I always ended up falling asleep.  But I wasn't going to give up.
The days flew by and still no progress. Christmas Eve came and my mommy and daddy left me for a little bit to go see my dad's mom. My nana. I missed them and I know they missed me but my dad told my mom that she needed to get out for a while. Finally she agreed. While they were gone someone came and visited me. It was Santa Clause! I wanted my mom and dad to see me with him, but they weren't there. So they took a picture to show them when they got back.  It was so cool! He was very nice.
 Not too long after Santa left, my mom and dad were back. I was sleeping and exhausted from visiting Santa. My mom and dad loved the picture though!! I knew they would. For me, it was a great day!
 Christmas morning came and the nurse that had me in her care that day was so cool!!! She put a Santa hat on me. Dressed me up in all red and put striped green and red socks on me. I looked like a little elf. My mom and dad walked into the room and saw me. They loved what I was dressed in. My mom picked me up and said "Merry Christmas handsome man" Than I heard my dad say "Merry Christmas buddy". Than it was time for my feeding.  I finished the WHOLE bottle!!! ..............just kidding. gotcha!
After I was done eating my mom asked my dad if he wanted to change my diaper. I'm just going to put it this way. It is his fault that he didn't throw a wipe over me. And no it wasn't just pee. I gotta say though, I'm a pretty good aim!! hahaha! That's funny! I don't care who you are! Merry Christmas to you dad!
It was yet again a great day!

My first day.

December 17, 2001...
    Before I tell you about my birth. Let me start with how I got my name.
You see my dad had a beautiful daughter named Kirstyn. And when I was in my mom's belly cooking, my mom and dad made a deal that he would pick the name if I was a boy and my mom would pick the name if I was a girl. Well when they found out I was going to be a boy, my moms only rule was that the name had to to sound like my sisters. Kinda like rhyming with it. Yeah, that's my mom for you. She is so silly!!!  But my dad did a good job picking one. Kirstyn, Preston. Has a good ring to it don't you think??
Okay so back to the story. My mom's water broke while playing cards at my nana and papa's house.  I was on my way and there was no stopping me!
When my mom and dad showed up at the hospital, my mom was 4cm dilated. The whole room was filling up with family. My dad was there, my nani, my nana, my papa's, my aunt's, my uncle's, my second aunt's, my second uncle's, second cousins, whew!! I felt SO loved!!!  All of them were there too meet me!
    Before you knew it, I was flying like superman!! My mom and I were ready to do some teamwork. My mom made all the men except my dad leave the room. I seriously don't know why!! Why would she let all the girls stay and make all of the men leave?!? I didn't think that was very nice. You should treat people fair. I think it's because she thought they would give me cooties because they were boys.
    Okay so back to teamwork. My mom was in labor with me for an hour and 1/2. I was born 6 weeks early at 9:43 P.M. I weighed 4lbs11oz.  Preston Micheal Holm. Everyone said I looked exactly like my dad. They were right. Everything from head to toe!! He was  proud! But my dad did have trouble cutting the umbilical cord. When he finally cut it something squirted at the doctor. I thought that was so funny!!
    After I got cleaned off they wrapped me up in this really warm blanket. It was a nice soft feeling.  Very comfortable too. I was than being carried and than put into someones arms.
    I heard "Hi". It was my mother. I knew that voice. It talked and sang to me everyday. As she was holding me, I felt her heartbeat, I felt her breath as it hit my little tiny face. And her loving touch.
"sigh" We finally got to meet. She kissed me and rubbed my head. . it was a short visit. The nurse came and took me away. I didn't want to leave. My mom didn't want me to leave either. But I wasn't breathing really good on my own and I was really really small. They took me back to the nursery to take care of me so I could get big and strong.
I was put into an incubator and also had to be on oxygen. My dad took my mom into the nursery so she could see me. She cried when she saw me on oxygen.  I felt her fingers gently rub my leg. She than put her finger on my little hand, and I squeezed her finger as hard as I could. I just wanted to let her know that it was going to be okay and not to cry. She couldn't hold me yet either....and that made her sad too. But she never left my side
   I could never figure out the whole "sucking" thing. It was so confusing. I was trying to get it down though. But since I didn't learn yet I had to get tube feedings. My mom and dad didn't like that too much.
In the picture below is me with my buddy bear. We even had matching glasses!! I think I was getting a tan.  My nani bought me that bear. He hung out with me a lot. And I still have him to this day!
But those first two days went by so slow. It felt like forever. But the 3rd day......Let's just say that
God visited and gave me a little boost.

The beginnging of my incredible life.

I want to share my life from the beginning. My mom was 19 and my dad was 23 when they found out God created me. She was so excited that she had to take THREE pregnancy tests to believe it. She even started wearing maternity clothes when she wasn't even showing yet! Now that is funny.
My dad was excited too. I already had an older sister who was 5 years old when I was created. So my dad really wanted a little boy. My mom didn't care though. She was just happy that God finally gave her a baby. She was even happy when she had morning sickness and everything else that came along with pregnancy.  She was still glowing and smiling!! Who does that???
My mom and I  kept each other up all night poking each other. I'd give her a diving elbow or a good side kick and she would always poke me back. It was really fun. But when she rubbed her belly it always made me calm down. I was always relaxed. She always sang to me too. I would always kick her to let her know I was listening. There were even times when she would drive somewhere and crank up the radio. It was SO loud. And it was always classical. Yeah my mom can be silly sometimes. But she heard it made babies smart. That's why she did it. I think that's why I like classical music now. But than again my dad always listened to his music loud and he listened to Heavy Metal. I guess that's why I like heavy metal too. When my parents found out if I was going to be a boy or a girl they were both excited. Especially my dad!! He was SO happy!! He said he couldn't wait to teach me to play football and baseball. And my mom just couldn't wait to meet me.
That's me in the picture!  Looks like I'm looking right at you right!! Aren't I just adorable!!
I didn't want them to wait to much longer though, so December 17, 2001 I decided to come into the world. But I was 6 weeks early.