Sunday, February 23 2014
Being a good example
Excuse me while I toot my own horn, but as the parent of a child with special needs I have realized that my thick skin is one of my best qualities. I refuse to let uneducated people ruin my day.
In my opinion, becoming upset by a rude comment from a stranger in front of my son is setting a bad example for him. I choose to move on after a rude comment because I want my son to learn as he grows up that letting other people bring you down is your own choice. I choose to use the rude comment as fuel for my fire to teach and raise awareness.
I got my first taste of ignorance last night. This man is lucky I have very thick skin. This situation could have turned ugly if the wrong person had overheard an uneducated comment like this.
We had just arrived at a restaurant for dinner. As we arrived, some of the people who enjoyed happy hour (a little too much) were leaving. I was holding Jax so he was facing away from me, because he likes to look around. I was putting his coat in the diaper bag and a couple walked by us. I have very good hearing and heard their “private” conversation as they walked by:
Woman: Look at that baby wearing glasses.
Man: Yeah, what’s up with that? Fake!
His tone implied that I was the jackass for trying to make my baby look like a hipster. I smiled, shook my head, and went on with my business. This situation reminded me of the reason why awareness is so important.
Actions Have Consequences
Understanding and being aware of the consequences of my actions is important in situations like these. Raising awareness about anything with hostility is not going to make a very good impression on anyone and it will also set a bad example for my son. Children learn by example and, although my son is not old enough to understand what happened last night, some day he will be, so it's never to early to start practicing good habits.
I could have chased after this man and punched him in the face, but what would that have done for me? Probably given me a free, one-night stay at the county jail and a sore hand. Not worth it.
I also could have approached him and lectured him about childhood eye problems and told him that he did not, in fact, know everything there is to know in this world. But I have learned that trying to get drunken people to listen to you is never easy. I also know that expecting an intoxicated person to retain the information you told them is just not very logical. So what’s the point of confrontation?
I chose option 3. I ignored this man and reminded myself of how lucky I am to have been raised in a way that taught me to be kind and non-judgmental of others. I used this situation as a reminder of why I want to teach the world about my son and other childhood eye diseases. I doubt this man would have said anything if he knew how much we have been through with our “hipster baby”.
Being thick skinned is a sign of an emotionally strong person. I understand that my happiness does not depend on what others say to me or about me. My happiness depends on how I handle the insult or criticism someone sends my way. If I let every comment, stereotypical t-shirt, or criticizing look I encounter ruin my day, I am going to spend a lot of time and energy being unhappy and in the words of Sweet Brown, “Ain’t nobody got time for that!”
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Friday, February 21 2014
I have compiled a list of some of the things my husband does that drives me up the wall. Can anyone out there relate to this, or am I alone in my struggles? I’m open to hearing any suggestions to, as Tyler puts it, “just stop being so OCD and relax.”
Before I present my list, I just want to say one thing... I’m sorry mom. I’m sorry for saying, “Why should I hang my coat up when I am just going to put it back on when I leave again in 2 hours.” I get it now.
And now, here are my sweet husband’s habits that I just can’t stand:
That being said, I love Tyler with all of my heart. I read this list to him and we laughed about it together because it is so spot on. Whether you live with your significant other, your parents, or a friend, there are always going to be habits that person has that annoy you.
Our philosophy in the Davin house is to be open about any issue you might be having, but in a respectful way. We also make it a point to be open about receiving constructive criticism. Our ability to be able to say anything to each other without worrying the other person might be offended helps us to make each other a better person.
I could make a super long list of all of the reasons why I love Tyler and all of the sweet things he does for his little family, but I don’t want to make all the ladies jealous.
Sunday, February 16 2014
In 1986, my dad was diagnosed with an inherited disease called Von Hippel-Lindau (VHL). On June 9, 2012, my dad passed away at age 48 from that disease. In September of that same year, Tyler and I found out we were expecting Mr. Jax. He was born on April 11, 2013. On April 13th, we discovered the cloudiness in his little eyes.
As you can imagine, I was already having a hard time dealing with the fact that my dad was not here for the first big milestone in my life since his passing, having my first child. Then to find out my son was not perfectly healthy was a huge blow. I began asking the question, “why me?”
Words can’t explain the feeling of finding out that the perfect moment I had been picturing in my head all these months, wasn’t so perfect after all. Instead of going home together as a family, we were transferred to the University of Iowa. When Tyler had to return to Des Moines for work, and my visitors had left for the day, I sat in my 4-pound baby’s room and cried with him in my arms.
"Why not me?"
I began to feel better when we started getting answers. I felt a lot better when we formed a plan. Then, Jaxon had his transplant and I finally felt like things were moving in the right direction. Between all of the appointments and eye drops, I accepted that our lives were never going to be “normal.”
That’s when I started posing a new question to myself. Instead of asking, “Why me?” and continuing to feel sorry for myself, I started asking, “Why not me?” Why shouldn’t I be given this child who is showing me miracles day after day?
At first we were told that Jaxon could not see more than lights and shapes. We were also told that Jaxon would be delayed in hitting his milestones. But day after day he has proven those things wrong. Day after day I get to see these miracles unfold. This kid is killin’ it!
If Jaxon would have been “normal,” guess where I would be everyday? Work. Instead, I get to stay home and witness every awesome thing that he does. I have discovered a hidden talent that I never knew I had (writing) and I get to share it with you fine people. I get to call this little boy, who has already overcome so much and inspired so many in his short life, my son. Doesn’t sound so rough after all, does it?
We All Have Chioices
I learned a lot from growing up with a terminally ill parent. I never knew how long my dad would live. He showed us all miracle after miracle. I used to call him a cat because he showed us that he had 9 lives.
My dad’s sense of humor got us through some of the worst times. When he was woken up from a medically induced coma after his first brain bleed, a nursed asked him his name, the date, and all of the other questions to test his mental state. Finally, she asked him if he knew where he was. He replied, “Yeah, a shithole.” He made us laugh to show us he was still putting up a fight. He showed me how to have a good time, even under terrible circumstances.
He also showed me that you have the choice to either cry about your misfortunes as a way to gain sympathy and attention or you can display strength and courage to overcome those misfortunes and be an inspiration to those around you. As things got worse and worse for him health wise, he and my mom displayed more and more courage to show me that things were going to be okay. I could never thank them enough for that because they gave me, not only a normal childhood, but also an amazing childhood.
With these lessons from my parents, I realized that I had a choice. I could either feel sorry for myself because my son has a medical issue or I can make the best of our situation and do everything in my power to give him a happy life. What kind of example would I be if I thought of his condition as a negative part of my life and used it to gain sympathy? I would only be showing him that it’s okay for him to do the same.
Your reaction to disappointments in life is a choice. You can let them overcome you and lead an unhappy life. Or, you can make a fool of life’s tricks by taking the things that are supposed to make you unhappy, and turning them into something that sets you apart, that makes you thrive, that pushes you forward. That is how you smile through adversity and I’m thankful my parents taught me how to do that. My goal in life is to teach others how to do the same. Especially, my Captain Jax.
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Friday, February 14 2014
First off, we would like to say thanks to everyone for all of the thoughts and prayers. All of the support we are receiving is absolutely amazing.
Unfortunately, Jaxon's cornea has been completely rejected. We also found out that his diagnosis of Peter's Anomaly is not exactly accurate. Although the two are very similar, his doctor's said what Jaxon has is called sclerocornea.
Jaxon's eyes did not develop correctly so his scleral tissue (the white part of your eye) formed over where his corneal tissue is supposed to be. Your corneal tissue does not have blood vessels and we can see vessels in that area of Jaxon's eye, that is how we know its scleral tissue and not corneal tissue. Long story short, Jaxon's body will never accept a cornea transplant. It will reject quicker each time that we try.
His pressure was also high. We are going to try a new glaucoma drop until our next appointment in 3-4 weeks. If the drops do not work we will have to surgically intervene in one way or another.
Option 1: The K-pro
Because a human donor corneal transplant is no longer an option, our only choice for creating a clear window to gain vision in Jaxon's eye would be to use an artificial cornea (called a k-pro). Although these transplants usually provide great visual results, there are a lot of complications that come along with them, especially in children.
If we decided to go this route, Jaxon's lens would be removed and a shunt for glaucoma would be placed, along with the k-pro being implanted. This is a lot of trauma to his little eye and any intrusive procedure like this could result in retinal detachment which would mean no vision in that eye at all, ever.
Children with K-pro's must be watched extremely closely in case of infection. Infections are devastating to these kids and, again, usually end in retinal detachment or loss of the eye. This would mean antibiotics and steroid drops up to 16 times a day on top of his glaucoma meds.
Jaxon and steroids don't mix well. Every time we start new drops he develops thrush (yeast infection in the mouth). When he has thrush he doesn't eat well because it is painful, I don't blame him. He lost two pounds from his last appointment. He weighed 12 pounds 8 ounces today. One nurse walked in and said, I forgot how small they are at 5 months, I have a 7 month old at home. I said, "Well, he is actually 10 months old." He's tiny.
Anyways, To prevent infection, Jaxon would not be able to swim in a pool or his grandpa's pond. We would have to basically put him in a bubble throughout toddlerhood and childhood to prevent trauma from falling or anything else that could compromise his eye. This is a little boy who cracks up when he is swung around upside down by his ankles, I think we might have a hard time restraining him from potential dangerous activities.
Option 2: Comfort and Normalcy
As a family, and with the input of his doctors, we decided that because we can see that Jaxon has a lot more vision in his left eye than we ever imagined he would, we opted for the following option:
This option is to do a laser treatment to treat glaucoma to make his eye comfortable and also figure out a cosmetic option for Jaxon to make his eye look as normal as possible. We will schedule this at our next appointment if his pressure is not lowered by the new drops.
Although it is unfortunate that we can't do anything right now to regain sight in his right eye, we don't want Jaxon's quality of life to be compromised. That is what is most important to us. If he got the K-pro implanted, his childhood would not be normal and we would all constantly be worried of something happening to his eye.
It's Jaxon's Happiness That Matters
It is more important for us as a family to let Jaxon be a little boy. We would much rather see him jump in the pond, ride a bike and play in the dirt than take the chance to obtain more vision for him. I asked my inner childhood self the question, if I was in 6-year-old Jaxon's shoes, would I rather be able to see other kids jumping into the pool but have to watch from the sidelines, or would I rather maybe not see them as clearly, but jump in the pool right along with them? I obviously chose to make a splash, and I think Jaxon would too. Whats so great about seeing if you can't enjoy the fun stuff that you see?
Besides his eyes, Jaxon is an otherwise healthy little boy and he is as happy as can be. Possibly obtaining more vision is not a good enough reason for us to risk his future happiness by having to hold him back from the normal stuff that kids do.
We are happy with our decision and, although this is not ideal, we are all okay. Our day to day life isn't going to change and Jaxon doesn't know that anything is different at all since he hasn't been seeing out of that eye anyways.
Being Thankful For What We Have, Not Upset About What We Don't
Every appointment at the U helps us understand how lucky we actually are. Jaxon has a normally functioning (but tiny) body. He will be able to run, read, and be whitty someday, just like his mommy. He will be able to get dirty, build fires, and play in the woods someday, just like his daddy. He will be able to play in the yard with his doodle brother and doodle sister. What more could we ask for?
There is always a bright side, no matter what situation you find yourself in. The key to being a happy person in the face of adversity is being able to see that brightness in the dark times. We know in our hearts we made the right decision for our little superhero. We were disappointed at first but as soon as we saw our little man being wheeled through that door, we knew we had to be brave for him. Sure, he might not be able to see out of that eye, but if we let every setback bring us down, he will learn to do the same.
It might seem like today would have been one of the worst days we've seen, but we finally feel some closure. We no longer have to question whether or not we should try another transplant. We no longer have to imagine what the outcome would be if we tried one thing versus another. Now we can focus on helping Jaxon grow and achieve, instead of worrying about making a decision about what to do next.
Every seemingly terrible circumstance has the potential to teach. Jaxon's condition has taught us a lot about our strengths as individuals and as a family. We have learned from everyone out there that our boy has the ability to inspire. He has definitely inspired us to want to make a difference in this world. So once again, we thank you all for the support you have shown us and we can't wait to show everyone the leaps and bounds Captain Jax is making as he continues his fight for sight!
Thursday, February 13 2014
I Have a Confession to Make
I have never thought of myself as having an addictive personality. I always wondered how someone could let something consume their life the way drugs do. But, I recently realized I was addicted to something else. I know I am not alone in my addiction. I have some friends who are addicts and its quite possible that you are an addict too.
If I were to go to a support meeting for my addiction, this is what my introduction would sound like:
“Hi, my name is Alyssa, and I am addicted to ‘likes.’”
This is where everyone says, in unison, “Hi Alyssa.”
I started a Facebook page for my son Jaxon, mainly to keep my family and friends updated on his journey with Peter’s Anomaly, a rare eye disorder. Very quickly I realized we were getting a lot more followers than I had ever imagined we would. What can I say, my 9 month old in glasses is adorable, and who wouldn’t want to see pictures of that sweet face?
As the number of followers approached one thousand, I found myself getting a rush. “Oh my God babe! We just got 200 more ‘likes’!” was a common exclamation in our house. I found myself refreshing the page every five minutes just to see the number go up. It didn’t take long and I was hooked. I have never done heroine, but I imagine how a heroine addict feels when they find their next high. I was receiving dopamine to my brain, my heart would beat a little faster and a smile would appear on my face. People think my baby is cute! This is fun!
Then, I started doing things I wouldn’t normally do, just to feed my addiction. I started getting messages from other Facebook pages asking to participate in “share for shares” and yeah, I will admit, I ate it all up. I even sent messages to people asking them to share my page. Like a junkie, I wanted more, more, more.
This sounds pathetic, but if there was a day when our new “likes” were down, I had to find a way to get those babies flowin’ in again. I would search through my computer to find the most precious picture of my baby to entice new followers. It would work and I would feel a little better.
I know everyone knows someone out there who posts a selfie everyday and it appears their self-esteem hinges on how many “likes” they receive for each post. How about those people that post the very vague status that is clearly begging for attention? I never want to be seen as an attention-seeker, especially one who uses my child for attention.
I know I have said to my mom, “OMG, did you see how many likes I got on that last post?” I have also seen pictures of people that have huge followings and I think to myself, “I don’t understand how she got so many ‘likes’ on that picture. It isn’t even that cute.” Now I’m thinking to myself, “Really Alyssa, you sound like a jealous high school biotch.”
It’s embarrassing for me to admit this, but you know what they say, admitting your problem is the first step to overcoming it. Luckily for me, I caught myself early. One day, after I had checked my kid’s page for the thousandth time, I realized I hadn’t showered in 3 days, my son was missing, and I had been feeding my dog in the high chair instead of my kid.
Okay, that was an exaggeration, but I realized I was forgetting the reason I started the page in the first place because I got too caught up in the number of “likes” I was getting. I can’t live a life revolved around Facebook “likes.” I mean for Pete’s sake, I would be sitting at my computer on Facebook then accidentaly pick up my phone and check my Facebook.
My point is, I don’t want my self-worth measured by the number of followers I have. What if I miss my son’s first steps or the first time he says mama? Okay, another exaggeration. But, it seriously became an issue for me.
When I stepped back and realized how silly I was being, I asked myself, what could I do with this ability to reach thousands of people? I could inspire, make people’s day, and teach others. This isn’t about me, this is about finding a way to teach the world about my baby so his life, and the lives of children like him, will be better. I will gladly accept the followers I earn because they like the message I am trying to spread, but I am not going to beg for them.
I don't want to miss one precious moment with my little guy due to the fact that I was too busy finding ways to get new "likes." Afterall, my Jaxon is my superhero. He is, and always will by, my true addiction.
Monday, February 10 2014
15 Things that a mom of a glasses wearing child or baby wants you to know
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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Friday, February 07 2014
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.
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!
Friday, February 07 2014
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.)