Her latest post is about bullying…a topic near and dear to my heart.  Please read her story and absorb it all in.  Her words are powerful.

Sticks and stones may break my bones, but names will never hurt me.

Blind baby.

Bat.

Four eyes.

Retard.

Blind bitch.

Freak of nature.

Freak.

Freak.

The words echo in my head. Memories of the past, like flags flapping in the wind which I can hear, and which serve as reminders of various occasions. I am scarred deeply from the taunts of other children. I learned to fight back, to scream, to strike out, to tell adults, but none of it ever did any good. I was just a freak anyway. I couldn’t see where the kids were coming from half the time, but I tried to face them, and yell taunts back, telling them they were ignorant and using words far too complex for my tiny self.

The teasing started when I was three-years-old. It’s how I learned I was different from other kids. Before pre-school I had no idea that I wasn’t like other people. I learned fast. I was different and it was not a good difference.

Taunting continued through my years of school. My mother would try to soothe my worries each night, giving me ammunition to spit back at the bullies. My brother would threaten to beat the other kids up if he ever heard them teasing me, or saw them picking on me.

By junior high the teasing was so bad that every morning before school I was physically ill. My stomach would cramp violently and I would be sick. I was so different from the other kids from my blindness to my as yet undiagnosed aspergers’ syndrome. I remember running into our backyard and clamping my hands onto one of our raised flower beds, as I sat upon it, tears streaming down my face, my words pleas to stay home.

Even the teachers weren’t always nice to me. I have this perseverative behavior of tapping something on my face. I would commonly use a pen or pencil because they were available. This was calming and I would do it when I was thinking. A teacher once called me before the class and demonstrated what I did and told me it looked stupid and she better not see me do it again. I tried to keep such behavior to myself at home, where my parents allowed me to do it alone, and not in public, but sometimes I would become overwhelmed and out the behavior would come. Teachers always pointed out the dark spots on my nose from trying to write close to my face with a dark pen, or soft leaded artists pencil as well. It just added to the kids who made fun of me for basically kissing my books as I tried to hold the large print editions near my face for close inspection.

By high school I was using a long white cane for mobility. Most kids started to shun me because of it. My closest friends even acted awkward around it at first, not knowing what to expect, but they overcame it quickly and treated me normally. Only one friend never changed in how she viewed me.

High school was just more of the same though. I had few friends and the school was larger which increased the amount of bullies. I would cut class and go to the agricultural area of the campus and play with the animals, or to the library to read audio books, or just chill. I felt alone, and I began to realize that I really was a freak because I wasn’t like the other kids. When they hid my cane one day while I was busy cleaning out rabbit cages in the school’s barn, I finally cried when I went to go to my next class, unable to find my way there. I groped through the spider webs in the barn’s corners, and tripped over pieces of equipment, but I finally did find my cane, and boy was I ever mad, even through my sorrow for being a freak. I wanted to get even, but knew I couldn’t.

It was the first time in my life that I just really wanted to die. Depression over came me, but I told no one and went about my days. I didn’t reach out to anyone, because I didn’t want adults to worry, and wasn’t sure what my friends would say. I stopped going to school when I fell ill because of a kidney infection. I was very weak. When I recovered it was easier just to stay home. School was a living hell. My mother knew that I wasn’t thriving with the other kids torturing me, so she seldom forced me to go to school.

As a result, one day the truant officer came to our house. She was a neighbor of ours. My mother greeted her warmly and offered her a cup of tea. She was all serious though, and informed us that she was visiting on business. Basically everything was laid out on the line. I either had to return to school or they were going to kick me out. I didn’t care. Let them kick me out, I thought, happily.

It was decided that I would transfer to the alternative high school. It was known for having gang bangers, teen mothers, drug addicts, and kids who were in trouble with the law. I didn’t know how I’d hold up against all of them, but I did know that it was fewer hours every day, and it had an unstructured format, so I could work at my own pace and help plan some of my studies. That part of it was right up my alley.

On my first day I was terrified. My mother dropped me off and I felt like I was back at pre-school with my mom leaving me for the first time. After a few hours I started to relax. The teachers were addressed by their first names. We had time cards we had to have stamped to prove we were in class, and it was up to us to show up. Homework was a privilege we could only earn by participating in class. The more work we got done the sooner we could graduate.

The best part, was from the moment I set foot on campus the other kids were welcoming. They didn’t ask questions about my blindness. It was a given that I couldn’t see. It was just another difference, like they had differences, and I was respected for it. The other kids talked to me about other subjects, normal subjects, and I felt like I was part of the whole.

A year after I had been at the alternative high school a new student started attending classes. He stepped in front of me one day, my cane making contact with him. He opened his mouth and started to chastise me for hitting him with my cane, even though he had purposefully stepped in front of me, and in a flash he was surrounded by a group of guys. They told him that no one made fun of me. They laid it down like a rule and threatened to mess him up if he tried it again. He got really scared, and started spouting apologies.

That was the only teasing I ever faced at that school.

I made friends with pot heads, teen mothers, kids who were on probation, a guy who was openly gay and sometimes cross dressed, and kids who were in a gang outside of school. Who would have thought I would have earned respect from a bunch of misfits. Who would have thought the teasing had ended. I felt less and less like a freak.

I went on to graduate first in my class, and went to college. I never would have done it without the support from those teachers and students. At the same time, I’d not be who I am today without the bullying. All of it combined has made me the person I am today.

While sticks and stones won’t break my bones, names will certainly hurt me. I have deep scars from being called horrible things in my formative years. It was hard to develop a sense of self in my teen years when I was so conflicted between what I knew what was true of myself, and what others were calling me. Now that I know who I am, I just look back on it like another chapter in my life. I am stronger for what I was made to endure.

Given the information I have now about stem cell research, and what they’re doing in China (or other countries such as Mexico and Ecuador), I’m pretty sure I wouldn’t take her to any other country to receive stem cells.  Emma’s neuro-opthalmologist, Dr. Borchert in L.A., has very strong opinions on the stem cell therapy going on in China.  I’ve asked him about stem cell therapy in China, as I was just curious.  He says that stem cell therapy is the most promising form of therapy for ONH, however it is not even close to be used in humans yet.  He promises that it is coming, though.  What they’re doing in China, basically experimenting on humans, is considered unethical in the United States.  You can read more about his statement on stem cell therapy here. There’s another good story on stem cell therapy in China here.

Something interesting to keep in mind about ONH. Vision cannot get worse with ONH.  In fact, more often then not, vision can improve during childhood years.  And Emma is living proof of this.  At her last appointment, she went from seeing solid objects with her “bad” eye, to being able to see which direction the E is facing on a wall 15 feet away.  We have no answers as to why this happens.  But with good news like this, I don’t really need a reason!

Watch this story on stem cells from 60 Minutes and let me know what you think.  I am very open to a respectful discussion on the subject.  Feel free to leave a comment or post on my Facebook page, Jumping Waves.

On a lighter note, if they had stem cell therapy for mood swings, possessed children, or ADHD, I might consider it.

To switch gears and give some background, Emma sees Dr. Borchert in Los Angeles every year.  We are SO blessed to have an amazing physician who knows SO MUCH about Optic Nerve Hypoplasia (ONH) so close to home.  We always take the opportunity to create a little girls getaway, just me and Emma, and this year we’re headed out there in November!!  You can read more about our visits with Dr. Borchert here and here.  He is extremely talented and knowledgable in the field of ONH and really opened our eyes (no pun intended) to what ONH was all about.  He is currently conducting an on-going study to try to find the cause(s) of ONH.  It’s still a mystery, but surprisingly the number 1 cause of blindness in children (someone please correct me if I’m wrong on that…statistics may have changed).  Every few months (quarterly? semi-annually?) he releases his findings on different things pertaining to ONH.  This is his latest release.  It pertains to the transplantation of stem cells being done in China.

“We are aware of the Stem Cells China program; however, we have not yet reached the state of knowledge with which stem cell treatment for ONH in humans can be done in the US or Europe. Research with stem cells for this and other optic nerve conditions is being done on laboratory animals. Stem cells research is the most promising form of therapy for ONH in the future; unfortunately, it is far from ready for use in humans. We have not yet even achieved success in treating mice with stem cells. There are considerable risks to this treatment as it is purportedly being administered in China, and the benefits are presently unknown. In the US and Europe, experimental research exposing children to potential serious risks and no known benefits, is considered unethical. The testimony of previous recipients that stem cell therapy resulted in improved vision bears little scientific merit as many children with ONH enjoy late, spontaneous improvement in vision. Based on this information, we are unable to recommend the Stem Cells China program as a safe and effective treatment of ONH”

I am here to give you my thoughts on the subject.  And while I have a very defined opinion of it, I do not intend to offend anyone who may be thinking of going to China, or has already taken their child to China.  I am coming from a mother with a child who has SOD/ONH among other disabilities.  My child is very blessed to have unilateral ONH, meaning only one eye is affected.  She is legally blind in her right eye, while her left eye is near perfect.  I say that because I fully acknowledge that my opinion could be different if she had bilateral ONH that left her completely blind.

My good friend, Marshelle, and I talk about this often.  And we share the same philosophy.  Emma has so many other issues that I would love for her to be cured of.  Her seizure disorder is nasty.  And she even has very mild and minimal seizures.  They are seizures, nonetheless, and they are scary.  Her imbalance of hormones is tricky, especially when she’s sick.  I’d love for her to be rid of that.  But even that’s not that bad.  I think mostly, I’d love for her to not have any behavioral issues (ADHD, mood disorder, whatever you want to label it).  I don’t think I could take my child to China, where their medical standards are not the same as ours, for a procedure that may or may not work.  Nothing is guaranteed.  I have read that many children do experience improvement in their vision, but I have not heard of any cases where the vision is completely restored.  To boot, this trip is also very costly.  If I remember correctly, the total is around $25,000 just for the treatment.  In my opinion, that’s a lot of money to spend on a therapy that may or may not work.  In China.

Again, this is strictly my opinion.  I don’t have any more knowledge of it than the average ONH-experienced person.  I am most definitely open to starting a healthy and respectful discussion on the topic of stem cell transplants done in China.  And I’m happy to answer any questions that anyone may have!  What I do know is that we all want the best for our children.  There’s not one parent who goes to China for this treatment that doesn’t want the best for their child.  And this is where we agree to disagree!

The Matterhorn, probably Emma's second-favorite ride.

Emma was so excited to get through those Disneyland gates!  I think I was just as excited.  In fact, Monday morning, I woke up first and was dressed and ready to go before she even stirred! (granted, a lot of that sleeping has to do with her ADHD medication, but still)  I asked her which ride she wanted to go on first.  If you know my girl, you know her answer was Thunder Mountain.

First, we stopped at City Hall.  I had a chat with one of the cast members there and explained a bit about her disabilities.  They handed me a guest assistance pass, which to me was like paper gold.  If a ride had fast pass, we went directly to that line.  If the ride didn’t have fast pass, we went through the exit to get on the ride.  This cut down or eliminated waiting in line for Emma.   oh.my.gosh.  Hello…why hadn’t I tried this before? The longest we waited for a ride was probably 15 minutes.  And that was for Space Mountain; a ride we won’t be going on again anytime soon.

And, I might add that using the guest assistance passed probably allowed me to walk at least 2 miles more. (note to self: get a pedometer before next trip to DL)  Anyhoo.

So our two days in Disneyland were awesome.  Granted it rained the second day.  A lot.  As in, we were both drenched when we got to the hotel.  But she didn’t want to leave!  In fact, that day during the rain, we went on Thunder Mountain 4 times in a row, 7 times total. A personal record. You can see the evidence of humidity in her hair.  Wish I had those curls!

So excited to meet Tinker Bell!

Only it wasn't Tinker Bell, but two of her friends. Who, I might add, didn't look overly-enthusiastic about being there.

One of Daddy's favorite rides!

Emma loves her some Winnie The Pooh!

And finally, life can go on after that re-opened Tea Cups! It was too rainy most of the day.

I’m ready to go back already.  I seriously can’t get enough of that place!  And Emma’s taking after me.  Never once did she want to stop or slow down.  Even when we grabbed a bite of food, she was always wanting to go! Even though I will gladly head to Disneyland with anyone, this fall trip will always be “our thing”.

So I can’t help but wonder what, if any, obstacles will come our way.  I won’t be naive to think that she will get everything she needs without any struggles from the team.  I always go into these with a firm stance on what I believe she needs as a student.  I’m not sure whether the team sees it as a benefit or not, but I think that it’s lucky for me (and Emma) that I used to teach.  I am able to see both sides of the table.  This also means I’m no fool and you won’t be able to pull the wool over my eyes.  I think a lot of parents are like that.  They know me better then that, now.  I am here to fight for what Emma needs, and no one will stand in my way.  Got that?

Phew.

If anyone has gone through the IEP process, it can be grueling, draining, and a battle.  One thing I highly recommend is hiring an advocate.  I have hired a wonderful advocate, Chris. He has been wonderful in supporting Emma’s needs, and ours.  What I like about Chris is that he has quite the education to back up his expertise.  But more than the education, he’s got the experience.  See, he’s got ONH as well.  So his input comes from a place of book smarts, as well as personal experience.  Can’t beat that combo.  He’s been a tremendous help with Emma.  And while he’s in Ohio, we just conference him in on telephone!

We have this IEP in 2 weeks.  I’m nervous…not gonna lie.  I don’t typically like meetings, and I definitely don’t like confrontation (though it’s never really gotten to that point).  I will definitely let you know how it all turns out!

If you’ve been through an IEP, what were your experiences?

Remember my post about Emma’s diagnosis and how we came to that?  You can refresh your memory here.  I thought about that post a few days later.  I’m sure it left a lot of question marks and I’m surprised no one asked!  But, given these diagnoses, what did that mean for Emma?  How did it change her life?  And so now I’ll answer those questions.  I’ll break it down and give more medical answers.  It might be lengthy.  Bear with me!

Emma was originally diagnosed with Optic Nerve Hypoplasia (ONH) at the age of 4 months.  What did that mean?  To us, not much.  I remember hearing the description to mean that she had limited vision in her right eye, and because of that, it appeared “lazy”.  After seeing 2 of the best pediatric ophthalmologists in area, I was surprised they didn’t fill us in.  ONH is where the optic nerve is malformed or not formed.  Because of that, vision can be severely limited, and in most cases, there is no vision at all.  Emma is a lucky. She has it in one eye only (about 80% of the time, ONH occurs in both eyes).  And the eye that is affected does have usable vision.  Here’s a quick little anatomy lesson.  The optic nerve contains about a million strands or fibers.  Emma contains about 300,000 so that means her vision is only about 30% of what it should be.  But she can still use what she has!  Another cool fact is that vision in the affected eye(s) can sometimes improve!  Even better is that Emma’s eye is improving!  We have since switched pediatric ophthalmologists and now see the #1 guy (in our opinion) who is in L.A.  We consider ourselves to be very lucky that we’re able to travel every year to have her be seen by Dr. Borchert!

Before Dr. Borchert, we tried patching her good eye in order to strengthen her weak eye.  Oh, that was SO trying on everyone involved, especially her.  She hated that patch.  I can’t blame her!  She withdrew from us, and it was horrible to see.  There was a point in time where she was wearing that patch 6 hours a day!  That’s a LONG time for a toddler…she was probably around 18 months old by then.  This was, of course, pre-Dr. Borchert.  Once we saw him, he explained it very clearly to us.  Emma did have usable vision in her right eye.  However, it wasn’t enough usable vision to benefit from a patch.  The vision (if any) she gained from patching wasn’t enough to outweigh the information she’d be receiving from her good eye, if that makes sense.  She’d be missing out on so much more by covering up her strong eye (which, by the way, is about 20/25).  Does that make sense?  Hearing that from Dr. Borchert was music to our ears…no more patching!

She started wearing glasses at 18 months.  We had baby steps with the glasses…but I was surprised that it really didn’t take her long to get used to them.  I really felt like she realized how much better she could see…even at that young age!  I’ll tell you what, I have always made sure, though, that her glasses are nothing short of adorable.  If my girl has to have an accessory on 24/7, it’s gonna be cute, right?  Right now our glasses are purple!  We have some pink ones that need to be fixed (another issue with a kid who wears glasses…we’ve probably gone through 10 pairs since her first!  That’s just how it is!

At the age of 22 months, she had surgery to correct strabismus in both eyes.  That’s the fancy word for lazy eye.  Because her right eye didn’t work very well, it went “lazy” on us.  You can see that in this first picture.  We decided to have the surgery for 2 reasons.  First, we thought that if the eyes were “set” correctly, that would help her poor eye work with her strong eye.  Secondly, we did it for aesthetic purposes.  Forming a child’s self-esteem starts young, and we didn’t want her to feel poorly about her eyes when they couldn’t see straight.  We had already encountered comments by people who just weren’t very tactful.  The surgery was a success.  Even to this day, her eyes don’t really cross unless she’s really tired.  And with her glasses on, they cross even less.

I think that brings us up to speed as far as her vision’s concerned!  So now that I’ve given you a short novel to read, I think I’ll save the other “big” diagnosis, Septo-Optic Dysplasia, or SOD, for tomorrow.  I don’t want to bore or confuse anyone!  But I do want to encourage comments or questions…let’s get some feedback!!

By the way, have you ever seen a cuter little girl with pink glasses?  I didn’t think so!

Emma with her patch on

Emma was born on February 17th, 2004. She came at 41 weeks of pregnancy, 18 hours of labor, and an emergency C-Section. She did not want to come out! But once she did, she was a beautiful and happy baby weighing in at 6 lbs, 11 ozs, and 19 inches long. She had no hair, and big blue eyes. She was perfect in every way!

We didn’t know about Emma’s diagnosis of Septo-Optic Dysplasia until she was just over 2 years old. She had gotten the diagnosis of Optic Nerve Hypoplasia when she was 4 months old, however the two ophthalmologists we saw neglected to tell us that 80% of kids with ONH also have hormone deficiencies.

On March 23rd, 2006, we took Emma to the ER because she was dehydrated from a flu bug. When we got to the ER, we found out her blood sugar was 11 (a healthy level is anywhere from 80-110) and her sodium was also dangerously low. They hydrated her and got her blood sugar and sodium back up. The problem was that once they stopped, it would drop again. At that point, she went through numerous tests, including a spinal tap (which came back clean). We spent the night in the hospital because they couldn’t find out what was wrong with her. It was a terrifying ordeal. During the night, she had a few seizures, which we later found out were mini-strokes. In the morning, they decided to transport her to Phoenix Children’s Hospital because they couldn’t find any answers. I was thinking that she must be in pretty bad shape to be transported to PCH…that’s where the really sick kids go. Not only were we at PCH, but we were in the Pediatric Intensive Care Unit (PICU).

We stayed in the PICU for 5 agonizing days. They did so many tests on Emma, I lost count. I don’t even remember what they tested for, but I do remember some of the tests being sent to places like California and Texas. It would take days to receive the results of those. Emma had so many tubes and cords coming out of her little body. She had messy hair from a couple of EEG’s. She had bruised arms and legs from attempts at getting a good vein for IV’s. After a few days, Emma woke up more, she was able to eat again, sit up again, and eventually start playing.

I can’t speak for my husband, but I felt like I was in a daze. The days ran together and everything seemed blurry. It’s worth mentioning that I was 7 months pregnant at the time, which might account for the lapse in clear thinking and memory! Brett was a champ. He stayed with Emma every night at the hospital. I went home because we decided that since I am a very light sleeper, it was best I sleep in my own bed. After all, we had another child that I was caring for.

On March 30th, we finally got an answer. After the neurologist, endocrinologist, ophthalmologist, and pediatrician met, they all agreed Emma had septo-optic dysplasia. Of course neither of us had ever heard of it…it was completely foreign to us. To find out that Emma would need oral medicine 3 times a day, let alone a shot every night, was completely daunting to us. It was hard to comprehend. We learned how to give her the shots in the hospital, and how to take her blood sugar, as we’d do that a couple of times a day for the next 2-3 weeks. We learned all about adrenal crisis, and the signs of it. We learned about stress dosing and quick sugars! We learned it all from a wonderful nurse, Fran, whom I still email and call regularly to ask questions and get advice.

I know my head was spinning when we got home. But we did it…I got myself completely organized with a system for her medications. I got her emergency medications in a diaper bag, as well as an emergency kit for the car, stocked with quick sugars, snacks, and other necessary items.

It’s been 2 years since Emma’s diagnosis. And every day I thank God that Emma is still with us. I didn’t realize, at the time, how close we were to losing her. She is a happy and healthy little girl with a mild (in my opinion) case of SOD. Brett and I think of her condition as a life sentence, not a death sentence. God gave us this special little girl to teach us something, and she had done just that. She’s taught us love, patience, faith, trust, and how to give shots, and we are so blessed to have the privilege of being her parents!

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