15 Things that a mom of a glasses wearing child or baby wants you to know

1. Trust me, I know my child’s glasses are dirty. I know when his glasses are dirty without even having to look at him. How? Well, they are always dirty. He is 10 months old. He doesn’t even know what I am strapping around his head, let alone that the lens needs to be clean in order to have the clearest window to look through. He thinks they are a conveniently placed chew toy. Just know that we try to keep them clean, but sometimes its not worth the struggle of putting them back on to make sure they are perfectly clean every second of the day. We aren't bad parents, we know they’re dirty.

2. You aren’t as clever as you might think you are. Personally, I am not offended when someone comes up and says, “Oh my God, it’s a tiny Harry Potter!” But I just want you to know, you are like the ten millionth person to say that. You aren’t the first person to say Austin Powers, Clark Kent, Ralphie from Christmas Story, Where’s Waldo, Dexter from Dexter’s Lab, a minion, or the grandpa from the movie Up either. Oh, and thanks for all of the Halloween costume ideas, we will be set until he's 30. (Note: Some people are offended by these comments. Be careful who you say these things to.)

3. It’s okay to ask questions. We understand that seeing a baby wearing glasses isn’t common. We also understand that you probably have questions regarding our baby’s glasses. Ask away! But please remember we came to the store for a reason. Hint: the reason is not to talk to a thousand different people for 10 minutes each about our child’s glasses. All we ask is that you keep it short and sweet. We never want to be rude to anyone who is interested in our adorable glasses wearing babies!

4. Think about your question, BEFORE you ask it. Please don’t ask me if my child’s glasses are real. I get why you might as a six year old if their glasses are real, because a six year old might tell their mom they want to wear pretend glasses. But my 3 month old did not come to me one day and say, “Mommy, I want glasses like Harry Potter.” This is the most frequently asked question to a mom with a baby in glasses. These baby frames cost around $200, they are not to make a fashion statement. Just assume they are real, because if you think about it, who in their right mind would put fake glasses on a baby every day? 

5. Be somewhat sensitive when forming a question. Don’t walk up to me and ask, “What’s wrong with him?” This implies that my child is broken or weird looking. You probably won’t get a great response from most people if you ask them this about their child. This goes for any parent with a child who looks different. Try easing into the question. Start by saying, “Your son looks adorable in those glasses!” Then, if the parent doesn’t say “thanks” as they rush to the next aisle, you can ask something like, “May I ask why your baby needs glasses?” That way, you don’t sound rude.

6. An autorefractor is a machine used to test how a person’s eye processes light. This machine measures refractive error without a person having to choose whether lens 1 or lens 2 looks clearer. This is how my baby’s ophthalmologist figured out what his prescription should be. Tell your friends. 'Nuff said.

7. I don’t know if my child likes to wear his glasses. People have asked me if my 10 month old likes to wear his glasses. I then invite them to ask him themselves if they want to know. He hasn’t opened up to me about it yet.

8. Just because a child wears glasses, doesn’t mean they have 20/20 vision. From the outside, a child with glasses may appear to be seeing fine. They can get around without bumping into things and most don’t need to use a cane to navigate either. Just be aware of what it would be like to have 20/200 corrected vision. 20/200 vision means that the child sees at 20 feet what a normal-sighted person sees at 200 feet. Remember this when you get frustrated that a visually impaired child has a hard time paying attention. You wouldn’t pay attention either if you were looking at fuzzy objects all the time. Not to mention the strain this puts on their little eyes. Put yourself in their shoes.

9. The question, “What happened to him?” is also a silly question. My first reaction would be to reply, "Uh, he was born?" Nothing stabbed him in the eye or hit him in the face. This is why you should think before you ask. Most young kids with glasses were born with eye problems. Maybe rephrase your question to say, “why does your child need glasses at such a young age?” This also applies to children who wear eye patches. An eye patch covers the child’s good eye, to force their weak eye to work to get stronger. Nothing happened to my kid. 

10. Please understand that we worry about how others will treat our kids when they are old enough to understand they are different. So, telling a mother that her baby’s eyeglasses make his eyes look big like a bug, is not going to make her laugh. It might actually make her sad or worried. Just be considerate. Would you want someone to make a joke about something that you or your child requires for his or her well-being? Nope? Well, neither do we.

11. We can see you giggling to your friends. I’m sure you are all just saying how cute my baby is and that is fine. I know he is cute. But instead of giggling and whispering, just come over to us and say, “Your baby looks cute in his glasses.” You will make our day and you won’t look rude. It’s a win-win.

12. If you notice your child’s eyes look off in any way at all, ask your doctor about it pronto. Early diagnosis and intervention is best. Don’t be afraid to say something just because you don’t want something to be wrong. This is a great piece of advice from all parents of glasses wearing children. It is a lot better to address a vision issue earlier, versus later. This could prevent other issues from arising as a result of the underlying issue.

13. Make it a point to teach your children about stereotypes. It is impossible to know anything about a person’s personality based on their appearance. Teach your children this simple fact. Just because a kid at school wears glasses doesn’t mean he or she is a nerd. Glasses will tell you someone has a vision issue, it doesn’t tell you anything about their study habits. Try showing your child examples of “cool” celebrities who wear glasses to prove these stereotypes wrong. This technique can be applied to any stereotype.  

14. If you see your child tease another kid about his glasses, either teach him about why people need to wear glasses, or I will. I wouldn’t want someone else to try and parent my child, but I also wouldn’t watch my kid be a brat and let him get away with it. I would never get angry with this other child, it’s not his fault he got stuck with inconsiderate parents. Just try to mold your child into a compassionate human being. What happened to teaching kids the old saying, "Treat others the way you would like to be treated"? 

15. Just be straightforward. Nothing is more awkward than catching someone stare at your child as they walk by, then seeing them 3 minutes later staring again, only this time with their friend at their side. Yes, someone at the store made the effort to go get their friend so they could show him how cute my baby is. I would much rather you just approach me with your friend and say, “I just wanted to show my friend that I saw the cutest baby on the planet.” To that I would reply, “Why, thank you.”

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I believe the first step to acceptance and equality is awareness. By raising the awareness of childhood vision issues, maybe we can reduce some of the silly questions and stares we recieve on a daily basis. If people only knew what these kids go through, they might understand how some of their comments are insensitive and rude. Maybe people will start thinking before they open their mouth. One can dream!

Disclaimer: My sarcasm might come across as rude to some. I assure you, it is not meant to be. I just believe a little humor helps things stick a little better. You aren't dumb for asking silly questions, we all just want you to think before you make comments about our kids' glasses. Humor also makes it more interesting to read something that is not important to you. I apologize for anyone who might have been offended by my sarcasm. 

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My Duty 

As the mom of a special needs kid, I feel it is my duty to bring awareness to the general public about how to act towards the family of a special needs person when you are curious. The problem is, not everyone agrees on the proper etiquette. Therefore, it is hard to give the rest of the population an idea of how to act when they encounter someone who looks different than they do.

The purpose of this post is to share my thoughts on the issue. I realize we all have different circumstances and opinions and my point is not to deem anyone else’s opinion wrong, it is just to get people thinking.

I wanted to elaborate on the topic because so many people could relate to my last post about frequently being asked if Jaxon’s glasses are real. I just want to make sure it is known that the post was written in my first language, sarcasm, and I really do welcome questions from strangers about why Jaxon wears glasses.

I honestly think it’s hilarious when someone asks me if his glasses are real because it is hilarious to imagine a person going through what we go through everyday with our glasses wearing babies, just to make a fashion statement.

It's Annoying, I know

First of all, I understand why parents get annoyed with strangers constantly asking them questions. When you are out running errands and you are trying to get home before your baby needs a new diaper, it can be frustrating to be stopped by 13 people telling you that their granddaughter got her first pair of glasses when she was 8 months old and now she is 10 and she won a spelling bee at school last week. That’s really great lady, your granddaughter will do great things.

But, if we stop and think about it, getting annoyed and being rude to these people isn’t fair to them. Why do people ask questions in the first place? It’s because they want answers. They want to understand something. I see thousands of pages on Facebook trying to raise awareness for their child’s condition. If we are rude to the people who ask us in person about what is going on with our child, isn’t that denying their awareness to the very thing we are trying to raise awareness for?

I think it is important for parents of children with special needs to use these opportunities to teach versus getting offended and stomping away from a stranger with a question. Their question might seem rude to you, but try not to be sensitive about it and answer the question. It is important to the happiness of our children in the future that people understand their conditions and understand what they go through. Acceptance and equality starts with awareness.

What are you looking at?

Let’s think about the opposite now. Let’s say someone glances over at your child and you see them looking. The common reaction is being offended that someone is staring at your baby. You are offended that someone asks you about your child and you are offended that they look and don’t say anything at all. Well, you are better off to either leave your child at home or borrow Harry Potter’s invisibility cloak.

Now, in the case of people with glasses wearing babies, people who don’t approach us and tell us our baby is adorable are usually the ones who giggle and whisper to their friend. I guarantee they aren’t saying our babies are ugly, everyone knows that’s not true. If they know I caught them whispering, I usually just smile. Or I try to look the other way and pretend I didn’t notice.

Celeb Status

Jax and I get a lot of attention at the store, mainly because I’m so good-looking, and he just happens to be in the cart. Just kidding. They are always looking at him, and the attention is never negative. Everyone notices him and gets all surprised and excited like they just found Mickey Mouse at Disney World. It’s because it’s not everyday you see a baby wearing glasses. It is a fairly new thing. Lucky for us, the medical industry has come a long way technology wise, so they can diagnose our children much earlier than before. Let’s just be thankful our babies are being helped as early as they are!

Seeing a baby in glasses causes people to be intrigued. And obviously, miniature things are always adorable (ponies, pop cans, and labradoodles, just to name a few). That is why they ask us questions. We should be happy they ask questions and give us compliments. I know I was worried how other people would treat us because Jaxon looked different. I was scared out of my wits and didn’t even want to share photos of his adorable face because I was nervous of how people would react. Then, I made a choice to embrace his difference and open up about it so I could help other people do the same. That way, when people did ask me about his issues, I could explain it to them and feel good about raising awareness.

Your Attitude Rubs off on Your Kid!

As our children get older, and they begin to understand that people are giving them compliments, they will get a bump in self-esteem as well. If we make it known that it is welcomed for strangers to give our children compliments on their glasses, eye patches or wheel chair decorations, instead of stares, maybe more kids will feel comfortable in having to use these things that help them. To make people feel okay about addressing an eye patch on a stranger’s child, we must make them aware that it is okay! We have to make our kids proud of their differences.  

Children learn by observation. They adopt the same attitudes about things as you do. If you get offended and sensitive when you see a shirt that has a pair of glasses and says nerd on it, they are going to be sensitive about the topic as well. If you get angry when someone says your son looks like a pirate with his eye patch, your son is going to be self-conscious of his eye patch. If you get mad because someone calls your baby Harry Potter because he wears glasses, that’s silly, because Harry Potter is a wizard, and who doesn’t want to be a wizard?

Just teach your child to be open about what they’re going through. Teach them to say “argh!” if someone calls them a pirate. Teach them to associate their glasses with being intelligent and trustworthy, instead of a geek. Teach them how to stand up for themselves if a kid makes a rude comment. Teach them by your example. Always make their glasses wearing, patch wearing, or any thing that makes them different, a POSITIVE thing. Make it fun! Make it a game! Kids love that stuff!  

My Point is:

This is where I return to the annoying people at the grocery store. Yes, they slow us down, but at least they care. They will always be there whether we like it or not. If they see one baby with glasses and ask if their glasses are real, chances are, when they see another baby wearing glasses, they will just know that the baby’s mom isn’t trying to make their child Suri Cruise (the most fashionable kid on the planet). People ask dumb questions, yes, but that’s because seeing a baby in glasses is apparently like seeing a unicorn.

Think of the questions as a teaching tool. Don’t be rude to people who care, because then they turn into people who stare, and no one wants to be stared at. That is how we raise awareness and encourage strangers to ask questions, by not being rude and making them scared to ask the next person they encounter. We were given these special babies for a reason. Let’s make the effort to show others the same compassion that we want others to show our special kids.

One Final Note, I swear!

It can be extremely discouraging if someone makes a rude comment about someone you love. The only reason they are making fun of them is because they are uncomfortable, uneducated, or have no self-confidence. As hard as it may be, don’t waste your time being angry about it. Your child will see that and learn to be sensitive to these comments. Show them how to be strong in the face of adversity and how to forgive others who might not understand. Tell them that their difference is what makes them strong and brave, kind of like a superhero. Teach them to be confident in themselves.

...and as always, thanks for the love!

Every time Jax and I go out and about, people ask me if his glasses are real. Yes, I'm serious. Do people actually think I am going to say they are fake? It's hard for me not to give them a sarcastic answer like, "No, I just want him to look like a hipster baby." (Those that know me know sarcasm is my first language.)

But, I politely say yes because the question is always followed by them telling me how cute he is. We really do appreciate compliments and questions. I would rather someone tell me directly that they think he's cute versus giggle and whisper about it to whomever they're with. 

I don't care that he makes them smile, in fact, I kind of like it. I am just a terrible actor and feel like everyone knows I saw them whisper to their friend when I awkwardly pretend to look the other way after I see it happening. 

I also don't mind being approached with questions, IF they are short and sweet. But sometimes people want to talk to me for so long that I contemplate bringing a folding chair to the store with me. I'm not trying to complain, I guess this is how celebs feel everyday  I know when Jaxon grows up to be a kid in glasses, he won't be such a spectacle (see what I did there?). I guess I will enjoy it while it lasts! 

Any who, feel free to share Jaxon's announcement with your friends. I made it as a joke but other families who have babies with glasses know what I am talking about. This can make for a very long trip to the grocery store! 

If we can raise awareness that babies actually can be prescribed glasses, maybe less people will ask us silly questions. Click share to help us out. Maybe we can make Jax go viral. Is it okay to ask people to share your stuff? Well, I just did.

As always, thanks for the love!

Mama Hill (Superhero)

I came across a video with the title, “The woman who has as close to a superpower as we can get.” I obviously had to watch it because I have a little superhero of my own. As I watched this video, I immediately fell in love with Mama Hill and I will definitely agree that she has a very impressive super power.

Millicent “Mama” Hill is a retired schoolteacher living in one of the toughest neighborhoods of Los Angeles. She says she represents a mother figure to around 3,000 revolving children. There is only one room in her house that she can call her own because she has opened up her home to the local children as a safe haven for them to get away from a destructive home environment.

If you imagine the kids that are growing up in one of the toughest neighborhoods in LA, you probably imagine that violence, gangs, sex and drugs have affected their lives at some point. This is a very strong destructive cycle that Mama Hill is up against but she has a very strong super power to fight it. Her super power is love.

Mama Hill is genuine proof at how far loving (and I mean genuinely loving) a child can go. As she talks about these kids and teens she says, “They’re looking for family, they’re looking for somewhere to have love and to be accepted.” So this is what she has provided for them.

In the video, Mama Hill tells the reporter that she had a young girl come to her and say that while she was at school, another girl hit her. Mama Hill instructed the young girl to bring the girl that hit her to the house the next time she came over. This changed the violent girl’s life. She gives a tearful explanation of how grateful she is to Mama Hill that proves how far love and respect can go. She says:

            “When I first came, I was always fighting and arguing with people. Here I’ve been put together and saved. Me not having a mom… she’s [Mama Hill] done so much for me like, when I didn’t have clothes, she gave me clothes, food, she could have gave up on me and let me go and I would have still been a bad child, but for her to still be here and still take care of me and help me like this showed me that she really cared. She really do love me.”

Mama Hill gets it. My favorite quote from this video (and I loved pretty much every word that came out of this woman’s mouth) was, “When you love yourself, you don’t want to hurt other people.” Her goal is to stop these kids from hurting so they won’t hurt anyone else. That is a superhero.

We need more superheroes like Mama Hill in this world. She is one woman who is making a huge difference. If children have no one at home to teach them what it means to be given love and respect, they need to be given those things somewhere else. If they don’t have an example of how to show kindness and love, they can’t be expected to show kindness and love to anyone else.  That is exactly what this woman is doing, teaching kids how it feels to be loved and respected, so they can give love and respect to anyone they encounter. The world would be a much friendlier place if there were more people like Mama Hill that devoted their lives to showing kids the joy one can feel by doing something kind for another.

Superheroes come in many sizes, shapes, ages, and forms. Don’t let your circumstances prevent you from being a superhero. 

http://www.upworthy.com/the-woman-who-has-as-close-to-a-super-power-as-we-can-get-2

I am a first time mom and only nine months in and I realize it’s normal to worry about how you are going to teach your child to be confident, independent and respectful, but Jax is a little different than “normal” kids. Because he is visually impaired, and his eye looks a little different, he will face different struggles than the other kids his age. It would be easier for me to just do things for him when he gets down or frustrated because of his differences, but I learned from my mom that this will not help him in the long run. Confidence is important for a child to be independent, and I hope I can give Jax all the confidence he needs to succeed and be happy.

I got permission from my mom to share this letter that I wrote for her. I am sharing it because her method of parenting taught me to have respect for her, respect for others, and respect for myself. My mom gave me the confidence that I needed to be independent as a child, adolescent and now as an adult. I gained independence because she allowed me to do things on my own, make mistakes, and learn from them. Excuses weren’t allowed in our house.

In this letter, I am actually thanking my mom for being “mean.” I am not giving parenting advice by any means; my kid is only nine months old. I’m not underestimating the task that I face either. I am only sharing what worked for my parents in raising me, and that I will try to do the same things for my child. I see a lot of criticism floating around the Internet about ungrateful kids who become adults that feel entitled to everything because their parents gave them everything that they wanted and didn’t know how to tell their kids no. That is the reason I wanted to share the positive perspective from a kid (who is now an adult and a parent) that thought her mom was mean and strict growing up because her mom knew the word no and wasn’t afraid to use it. This kid, who happens to be me, only describes her childhood as happy and perfect, and now knows that her mom was not mean at all, she was preparing her daughter for life and her daughter couldn’t be more grateful.

Dear Mom,

Thank you for being “mean” to me, while I was growing up. I put the word “mean” into quotations because, thinking back, I now realize you weren’t being mean at all. You were showing me how much you loved me. You were showing me that you cared about how I would turn out.

I wish I could go back in time to tell my younger self that those “mean” things you did were all serving a very important purpose. Those “mean” things were actually preparing me for the real world. I would have listened more, argued less, and focused more on the things that would help me be successful. I would tell myself, moms really do know best!

You not only prepared me for the real world, you taught me how to be a good parent as well. I am so blessed that I have you as an example. You have given me the confidence that I need to be a loving, nurturing and dedicated mother.   

Becoming a parent has taught me, that it’s not about me anymore. Until I became a mom, I didn’t understand, or even think about, all of the things you and dad gave up for me. You made sacrifices to make my life better, and that is what being a good parent is all about.

After becoming a parent myself, I am starting to understand how much you have actually sacrificed for me. I am only nine months in and the hours of sleep I have sacrificed are adding up quick. There are also those late nights out, vacations, clothes, a clean house, and so many more things that you gave up, because you wanted to see me happy. Not every parent knows how to be selfless and put their child’s needs first, so I want to say thank you for doing that for me.

When I was young, I often complained about being bored. Your response to my complaints was always the same, you would say, “Go outside and find something to do” or “go knock on the neighbor’s door.” You didn’t let me sit inside and play video games, you gave me the chance to exercise my imagination. I was, in no way, addicted to the screen. I could go outside and make a fort in the woods or pretend the back shed was my house. I could entertain myself for hours or find a friend to play with. Thank you for teaching me to be creative and learn to entertain myself. Even if it was a way to get me out of your hair for a little while, it taught me independence.

The ability to be independent, which you started teaching me at a young age, is something I hope to teach my kids. You always trusted me enough to let me try things on my own. Your confidence in my ability to figure things out helped me to build confidence in myself. If I needed you, you were always there to push me in the right direction. As my self-confidence grew, so did my independence. I figured out early that if I wanted something done, I shouldn’t expect you or anyone else to do it for me, I should do it myself. This saved me from a lot of letdowns in the real world and taught me to be grateful when someone did help me out.

As an adult, I know I am not entitled to anything. Growing up, you made it a point that I would have to earn the things that I wanted, because this is how the real world works. You and dad earned the money, so if I wanted to buy a toy, I’d have to earn the money from you in order to do so. This made it clear to me that no one owes me anything. You showed me the importance of hard work and that hard work does pay off. I might have been angry then, when you wouldn’t buy me that toy, but I am thankful now that I didn’t get everything that I ever wanted. It taught me to be grateful for gifts and that there are benefits to working hard.

Because you provided me with a roof over my head, food to eat, and the cool clothes that I had to have, I was expected to help around the house. I had to help rake the yard, shovel the snow, mow the yard, vacuum, unload the dishwasher, do my own laundry, and anything else you asked me to do. I had to get these things done before I could hang out with my friends, and I had to get them done right. You set cleaning standards for me and I was expected to meet them. I remember times when my bathroom didn’t pass your inspection, and instead of fixing my job for me, you were “mean” and made me do it myself. It not only taught me how to make a toilet sparkle, but it taught me that if you have a responsibility, you better do it the way its supposed to be done.

Your high standards taught me to take care of my domain and be proud of what I have. You taught me the importance of an organized home and the stress that clutter can bring. I now take pride in the appearance of my things and I can confidently take care of my own home as an adult. I can now mow an extremely straight line into my lawn because of all the practice I had, and it might sound stilly but I am proud of that, because it looks awesome. Thank you for showing me how great it feels to take pride in what I have and to be proud of my accomplishments, even if it is just a snow free driveway or a really straight line on my lawn.

When I did a good job at something because I did my best, you always gave me praise. You knew when I didn’t try my hardest and knew when I could do better. You criticized me, but only constructively, because you wanted me to learn to do my best and to be the best that I could be. You were always honest with me, which taught me to benefit from criticism, not cry over it. 

You taught me by example, the importance of setting goals and having expectations of myself. You showed me that if I am unhappy, only I have the power to change that. I saw that you had a dream to own your own business, and I watched you make it happen. You took the time to do what you needed to do, to be where you wanted to be. You worked full time while you got your business degree, I saw you feeling the pressure, and I watched you work your butt off to get through it. You wanted more, you wanted a change, so YOU made it happen. This taught me that if I want something bad enough, only I can make it happen.

I used to say I was scared of you, but it wasn’t fear, it was respect. Thank you for teaching me to be respectful. To have respect for you, respect for others, and most importantly, respect for myself. I respected you because you showed me that being respectful was the key to my freedom. If I respected you, you respected me. If I didn’t respect you, I was punished. If I was grounded for two weeks, I was grounded for two weeks, not one and a half. I knew there were consequences for my actions and I was free to make mistakes, but you taught me how to learn from them. 

Thank you for setting boundaries and limits for me. I learned quickly what your limits were and I was afraid to cross them. I knew I couldn’t get anything passed you, so I rarely tried. If I did something wrong or was late for my curfew, there were no acceptable excuses. “If you knew it was snowing, you should have left the party earlier, so you could have made it home on time.” You made me own up to any poor decision that I made. I quickly learned the importance of understanding the consequences of something before I did it, because I didn’t want to disappoint you.

Thank you for showing me that a good parent listens to their child. A good parent knows when something is wrong because they pay attention and care about what their child is feeling. You showed me how to be present as a parent, but to also give the space that every child needs in order to gain their independence. Although you taught me to be tough, you were there to comfort me when I needed it. You didn’t sugar coat things or coddle me, because the real world isn’t sugar coated. You always tell me like it is. This is the best thing you did to prepare me for the real world.

You helped me understand that life isn’t always fair, and I had to learn to deal with that. Thank you for teaching me that disappointment and adversity is inevitable throughout life. If you had given me everything that I had ever wanted and I had always gotten my way, the real world would have hit me like a ton of bricks.

When I became a parent, I was scared. It’s hard not to be when you see kids on the news killing their classmates and committing suicide because they were bullied so much. But then I realized that I would never do any of those things because my mom was “mean” and taught me what respect was. She had expectations for me and praised me when I met them. She gave me responsibilities that I was required to take care of. She trusted me to make my own decisions because she knew I understood the concept of consequence. She gave me confidence.

So I thought, maybe if I do for my child, what my mom did for me, he won’t do those things either. I will give him chores and responsibility to teach him to be confident in his own abilities. I will let him make mistakes and learn from them so his confidence in the choices he makes will grow. I won’t give him a chance to feel entitled so he will be grateful for gifts he receives. You showed me that it was okay to say no, because if your child respects you and doesn’t feel entitled, they will just let it go. You also showed me it’s okay for your child to be mad at you, because their love and respect for you will never diminish, if you always show love and respect to them.

I know parenting will be difficult at times, but with the confidence you gave me by allowing me to be independent, and the example you set as my own mother, I trust myself with the responsibility of raising a child. Some say you can’t be your child’s parent and their best friend, I don’t think that’s true at all. A best friend is defined as someone you know well and regard with affection and trust. I think that fits us perfectly.

As I continue on this journey called parenthood, I am so blessed to have someone to turn to for advice. I know I won’t be perfect, no one is, but I am confident that I can be “mean” like you were. I want my son to have respect for me, respect for others, and, most importantly, respect for himself. I worry because he is visually impaired, it would be easier for me to do everything for him, but I now know that that will only make his future harder and his independence weaker. You let me learn things by experiencing failure and making mistakes. You made me work for the things that I wanted. You let me feel disappointed by not giving me my way. I am a stronger, more independent person because of that, and I thank you. I hope I can do the same for my son. 

Love,

Your Daughter/ #1 Fan 

Hello to all of you Patch Pals fans and followers! My name is Alyssa and I wanted to start out by saying how excited I am to join the Patch Pals team! I am going to use this first post to tell you a little bit about my family and myself. Hopefully it will give you an idea of how and why I learned to think the way that I do.

One of my goals is to inspire others to have a positive attitude toward any obstacle that they may face. Although I am only 24 years old, I have encountered some difficult times in my life. When I say I have encountered difficult times, I don’t mean that I have had a terrible life by any means. In fact, I would say just the opposite; I have had an amazing life so far. For that, I have my parents to thank. They taught me the importance of a positive attitude, which allowed me to use every obstacle I have encountered as an opportunity to learn. It takes practice, but once you’ve learned to see the glass half full, and allow yourself to move forward from devastating events, you will become an all around happier person.

So without further ado, here is my story.

In ’86, my dad was diagnosed with a rare genetic disease called Von Hippel-Lindau (VHL). My parents had just started dating when my dad was first diagnosed.  My dad encouraged my mom to leave because he knew what his future battle with this disease might look like, but she stuck by his side anyways. They were married in ‘87 and I was born in ’89.

In short, VHL is an inherited disorder that causes tumors to form in various parts of the body such as the brain, spinal cord, kidneys, and eyes to name a few. These tumors are typically benign, but their location in the body can cause life-threatening complications. 

My dad had his first brain surgery in May of 1986, he had his last brain surgery in November of 2011. He had a countless number of surgeries in between. Some of these surgeries are more engrained in my memory than others.

Over the years, my dad’s kidneys were slowly being removed because of tumor growth and renal cell carcinoma (kidney cancer). After losing the last part of his remaining kidney, he was placed on dialysis. This was a terrible time for my dad; he was battling the negative side effects of the dialysis as well as depression. The combination of kidney failure and everything else going on in my dad’s body caused him to get a very rare skin disease. He was one of the very few cases in the US to be diagnosed with this disease. It was slowly hardening his organs from the outside in, starting with his skin. He was in extreme pain all of the time.

In 2002, my mom was able to donate one of her kidneys to my dad. It was a miracle that they were such a perfect match. It was amazing how quickly he began to feel better. This transplant reversed the skin disease and saved my dad’s life. Without it, he would have died a slow, agonizing death. My mom has always shown me how to be a giving person, but this was the biggest example of generosity and love I had ever seen. I am so thankful to her for giving my dad 10 more years of life.

This is just one example of the scary things I had to watch my dad overcome while I was growing up.

I got to spend my 16^th birthday in Florida, but as great as that may sound to anyone from the Midwest with a March birthday, it was because of some very scary circumstances. A few days before my birthday, on the morning we were supposed to be heading home from our vacation, my mom woke my friend and I up and I will never forget what she said, “Alyssa, don’t freak out, but I just called an ambulance for your dad.” Minutes later, EMT’s rushed into our hotel room, they placed my dad on a gurney, and within minutes, both of my parents were in the back of an ambulance heading to the hospital. The hotel then called my friend and I a cab and we were on our way too. The cab driver barely spoke English and we had no idea what hospital we were going to. To this day, I’m not really sure how we ended up in the right place.

Upon arriving at the hospital, we were sent to the ER to find my mom. As I was given a chair to sit in outside of my dads “room” with curtains for walls, I overheard the doctor talking to my mom, neither of them knew that I had arrived. What I heard the doctor say was something no one, especially a 16 year old, would ever want to hear about his or her father, “…by then, it may be too late.”

The rest of the details are a bit of a blur, but my dad was rushed into emergency brain surgery. They did a ventriculostomy, which means they drilled a hole into his head to drain the blood that was putting pressure on his brain. My mom later told me that the ER doctor had told her when they arrived at the hospital that my dad would not live through the day. He was on a ventilator and in a medically induced coma for five days. I remember wondering if my dad would ever be the same person that he was before all of this happened.

When he was stable enough, Dad was flown by medical jet into Iowa City. There he began rehabilitation to relearn to walk, talk, eat and everything else it takes to function in day-to-day life. Watching someone you love go through this is not easy, especially when it’s your 40-year-old father. My mom did extremely well at keeping my life as normal as possible while all of this was going on. I am so thankful for that.

On November 28^th, 2011, my dad would have his final surgery to remove a brain tumor. The tumor had grown so he started seeing double from the pressure on his brain stem. That morning, I met him at the hospital at 6am. I hung out with him in his pre-op room, as I always did, before the anesthesia team took him back to the OR. While we waited, we joked around and talked like it was just another day. As the years went by and the surgeries added up, I had become desensitized to this process. I just assumed that when my dad came out of surgery, he would head to recovery, and he would be just fine. So when it was time to wheel him back, I kissed him on the forehead, told him I loved him and he replied, “see ya on the other side.”

When dad was finally out of surgery, a nurse came in to tell us that everything had gone well and he was on his way to recovery. I was very relieved to hear this. As we waited for the green light to head back to his room in the surgery ICU to see him, I caught a glimpse of his surgeon walking into the waiting room. My heart sank when I saw him.

He sat down and calmly told us that although they had thought everything had gone well, when they woke my dad up, he was paralyzed on his left side. He had suffered a stroke. I was devastated.

My dad fought so hard to regain his strength. He fought for about 7 months. I watched him try to relearn to walk, talk and eat again, for the second time in my life. Shortly before he died, we were told his brain tumor had grown back and he would have to undergo numerous surgeries that would last three days. He opted not to do this because he knew he would not survive it. He knew it was his time and as he put it, he was ready to go home.

On June 9^th, 2012, my 48-year-old father died peacefully at his parents’ house with his entire family by his side. It was so hard, but I wouldn’t have wanted it to happen any other way. His last words to me were, “You are so beautiful, I love you.” As I said my final goodbyes, I held his hand and told him that he was the most amazing father I could have ever asked for. I let him know it was okay for him to let go, I didn’t want to see him suffer anymore.

There isn’t a day that goes by that I don’t think of my dad. I still have some of his texts and voicemails saved on my phone. Some days are harder than others, but I always remember what he taught me throughout the years. He taught me to always have faith. I use my faith to see a brighter future whenever I encounter an obstacle. I know that he is always watching over my little family and I and I know what he would expect from me, even though he’s gone. He taught me to be positive and hopeful and to never give up. He taught me the importance of being strong for my son, as he was for his daughter. Even though I know there were times that he wanted to give up, he always put me first, which motivated him to keep moving forward. He taught me to have compassion for others and to help those in need. By his example, he taught me to be a good person.

My son was born on April 11^th, 2013. With the positive attitude I learned from both of my parents as I grew up, I am confident I can teach my son to accept that he may have to face more challenges and adversity than most kids his age. My ultimate goal is to give him the confidence he needs in himself to overcome that adversity and not let anything, especially his “disability,” hold him back. I want him to understand that he is in control of his own future and he has the choice to either, let his eye issues hold him back or push forward and overcome them. My parents taught me that being unhappy is no one’s fault but your own. You have the choice to let hardships defeat you, or you can learn from them and become a better person because of them. 

We are excited to introduce Alyssa to our Patch Pals team.  She is a new mom of an adorable little guy named Jaxon. Alyssa and her husband Tyler have had a very challenging beginning to parenthood, however they have faced these difficult challenges with a proactive and positive attitude.  We are confident that you will enjoy Alyssa's blog posts and we encourage you to check in often to see what new things she has discovered while on the journey to help her son "Captain Jax" and his fight for sight.