I'm sorry if this photo grosses you out, but today, Jaxon's doctor showed me the picture on the left. That photo was taken when he was 3 days old. This is why we thought Jaxon would be blind. It is a picture of his left eye, his GOOD eye! The picture on the right side is his left eye today. As Jax is growing, the cloudiness is getting thinner and thinner and he is gaining more and more vision. I am absolutely blown away at how amazing this is. It truly is a miracle in our eyes (or Jaxon's eyes -- pun intended). Although it breaks my heart to see that first photo, it is a reminder of how far he has come. It's amazing how far faith, support, and positivity can get you. I wish I could have seen a photo like this when I first found out my son had these eye issues, it would have given me a lot of hope and comfort for his future.

Jax had a pretty good appointment today. Not too eventful, and that's how we like it!  His pressure is at 22, which is lower than it was before surgery, so that's good! It's been 6 weeks so we are done with our post-op eye drop regimen and are back to our normal 5 drops a day (for glaucoma and dilating).  To check pressure, they have this little tool that they hold up to his eye for a few seconds, they do this 5 or 6 times. Jax just sat there and let them do it. I was in shock. He did so well!  Jaxon's glasses prescription was lowered today too! That's always a good thing! We are going to buy some sunglasses for this summer so if anyone has any suggestions on brands, let us know!  If you have followed Jaxon's story, you know we dilate his pupil in his left eye everyday. Today we were reminded of a procedure called a pupillopalsty. It's a surgical procedure to permanently dilate the pupil. Although it means no more drops/ side effects of those drops, there are other risks involved. 
Pressure is dropping and his acuity is improving! We have nothing to complain about and are pretty content with where we are now compared to where we started! Jaxon is a tough little man with no fear despite having a visual impairment. The specialists that visit the house are beyond happy with his visual progress and his development!   There's no stopping Captain Jax!

16 Things that have helped me as the parent of a child with special medical needs

1. Writing down any question about my child's health so I can remember them at his next appointment.

2. Seeking out groups of parents who have children going through the same issues for support and to ask for advice.

3. Being mentally prepared for the worst news. This not only helps me stay composed when we receive bad news, but it makes the unexpected good news even better.

4. Researching every treatment option, including future options and treatments that are being developed, in order to make an educated decision about the best treatment path to take for my child.  

5. Knowing the risks and side effects involved with every treatment option so I understand how every option will effect my child’s quality of life. Practicing this and wanting to make sure I choose the best option for my child also stops me from making hasty decisions.

• For example, my son was born with corneal clouding. When his first transplant failed we were given the option of giving him a k-pro (a prosthetic cornea) or just leaving his eye the way it was because he had some vision out of his other eye. At first we wanted our child to have the most vision possible and considered the k-pro but when we realized he would not be able to swim or do anything that might risk infection of the transplant, we chose leaving his eye alone. Jax having a normal childhood was the most important thing to us, even if it meant less vision for him.

6. Researching the medical jargon that is associated with my child’s medical issues to better understand the medical professionals at his appointments.

7. Learning about the technology that is available to help my child be independent now and in the future.

8. Trusting my instincts when it comes to my child’s health care. If I see something his doctors might have missed, or have an idea they didn’t consider, I speak up about it.

9. Getting a second opinion made me more confident in the information I had already received from my child’s doctors and, because both teams of doctors agreed on the best plan of treatment for my child, I was very comfortable with our choice of where to take him to be seen. Confidence and trust in my child’s doctors put my mind at ease during appointments and procedures.  

10.  Talking with my family and making sure we were all on the same page with what exactly we want for our child now and in the future was very important in making a decision for care that everyone supported. 

11. Researching side effects of all medication and being prepared to deal with them.

12. Accepting my child as he is. Once I got passed the disappointment of finding out that not everything was perfect, I was able to enjoy my new baby like I was supposed to.

13.  Celebrating every accomplishment and milestone my child hits, no matter how small it is brings excitement and hope. It encourages me to do what I can to help my child reach the next milestone.

14. Reading stories of others with similar issues succeeding in life decreases my worries for my child’s future.

15. Instead of dwelling on the bad things, I have turned my focus on the good things happening in my child’s life. I tell myself that it could always be much, much worse. When I am upset about the things that go wrong, I forget to soak up each moment of my child’s development. They grow up so fast and I don’t want to regret the time I wasted by being negative.

16. Being open about my child’s story by starting a Facebook page and blog has really helped me to accept our situation. It has brought me peace and has connected me to people who are going through the same thing. These people have helped me and I have helped them. I also feel comfort in knowing that I am teaching others about the amazing things about having a child who is different or has special medical needs. I love showing others that there is always something bright in the darkest days. 

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20 Ways my mom prepared me for the real world

The “mean” things my mom did that I’m thankful for now.

1. She didn’t always provide entertainment for me, she made me figure out ways to entertain myself (“Go outside and find something to do”)

2. She didn’t do everything for me when I was young, even when it would have been easier/quicker for her to do it herself (like make a sandwich or pack a lunch)

3. She never rewarded me for what was expected of me (like doing what she said).

4. She knew I wasn’t a perfect angel and she made me take responsibilities for my actions.

5. She made me do things I didn’t want to do and complaining was not allowed.

6. If I committed to something then changed my mind, she made me finish what I started.

7. She didn’t sugarcoat things because the real world isn’t sugarcoated.

8. She allowed me to experience disappointment so I could learn how to handle it.

9. She never let me off of a punishment for good behavior.

10.  I respected my possessions because she made me earn them.

11. Disrespectful remarks and talking back was not tolerated. Period.

12.  I had to make my bed every morning or there would be consequences.

13. She set high standards and helped me appreciate doing things right and doing my best so I didn’t have to do them again.

14. She made me get a job when I was young and helped me open a bank account so I knew what it felt like to earn/ manage my own money.

15. She didn’t fight my battles, she gave me advice but let me solve my own problems.

16. If I lost her trust, I lost my freedoms.

17. If she was outside doing yard work or shoveling snow, I was outside helping, because I lived there too.

18.  She made me eat what she made for dinner, I didn’t get a special meal just because I was a kid.

19. Her favorite response when I didn’t get my way was, “Well, life’s not fair” and made me understand that I just had to move on.

And the last and most important “mean” thing my mom did was:

20. She frequently told me, “No” and didn’t care if I got mad at her for it because she knew I respected and loved her and she knew I’d get over it and thank her for it one day… and she was right.

​

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People have asked me how I have stayed positive through all of the adversity that I have faced in my life. I think the only way to answer this question is to share my thought process and how the experiences I had growing up shaped my way of thinking. 

Most people would see growing up with a terminally ill parent as a negative thing to endure. Although it wasn't easy seeing my dad battle his disease, it is the reason I am who I am today and I would not change that for the world.      

"It is what it is"

Whenever something unpleasant happens in my life, I try not to dwell on the bad event itself. I focus on the outcome or the solution to the problem I am faced with. Sometimes the solution is just finding a way to cope with what has happened. The gist of what I tell myself is this:

“It is what it is, it’s done, it has happened. If you can change the situation, find a way to do so. If it’s something you cannot change, take the time you need to mourn, then find a way to make it easier to accept.”

In short, I always tell myself to deal with it. Maybe this sounds insensitive but I am a practical person. I don't like to waste my time doing things I don't want to do, like being unhappy, especially when I know my time is limited.  

Having a dad who was terminally ill gave me a tool that most young people don’t have. That tool is the awareness that there is always a chance for unexpected disappointment in life. Because I know that disappointment is inevitable, I am mentally prepared to overcome things that many people have a hard time bouncing back from. I don't like to let things that I cannot change bring me down.  

Uncertainty  

My dad passed away from a genetic disease (VHL) on June 9^th, 2012. His disease caused tumors to grow in his brain, on his spinal cord, in his eyes and in his kidneys. VHL has no cure and it is a “treat it as it comes” sort of thing. He was diagnosed before I was born, so him being sick was all I ever knew.

A lot of uncertainty comes with VHL. We never knew when a tumor would grow large enough to require treatment, we never knew what side effects from medication or surgery he would experience, and we never knew how much time we had left with my dad.

I don’t like uncertainty but I quickly realized that it was a major part of my life because of my dad’s illness. It was a part of my life that I could not change. I realized that I had a choice to make. I could either spend my life fretting over what I would have to watch my dad go through next, or I could accept that the uncertainty was always going to be there and I could live my life using my awareness of that uncertainty to my advantage.

Uncertainty isn't all that bad

Because we were uncertain of how long my dad would be around, we went on vacation every single year. Instead of worrying about the money, my parents made it a point to live life and they helped me create amazing memories with my dad that I could cherish forever.

Because I was uncertain of how much time I had left with my dad, I was given the opportunity to remind myself to appreciate the moments I spent with him. It would have been a lot easier to take the little things for granted had I not known my time with him was limited. That is something that the majority of people regret when they lose a loved one unexpectedly, the moments they took for granted. 

My dad loved music and one of his favorite hobbies was singing in weddings. It has always been my dream to hear my dad sing in my own wedding. Because he was uncertain of how long he would be around, he recorded a song to play in my wedding, just in case he couldn’t be there to sing it.

Tyler and I are getting married in the Church this May. If we hadn’t known that there was a chance my dad wouldn’t live long enough to see my wedding day, he wouldn’t have had a back up plan so my dream of hearing him sing at my wedding could come true.

It's okay to mourn, but don't let it consume you

For this reason, it’s hard for me to be upset about what has happened in my life. Of course I miss my dad, I miss him every single day, but if he had been healthy, I would not be the strong, positive thinking person that I am today. I would not understand how precious our time with our loved ones really is.

Losing a loved one is never easy. It’s like a hole you can never fill and I think it’s very important to mourn that loss and expel those feelings. It’s a difficult thing for me to know that the only time I get to see my dad is on those rare nights he visits me in my dreams. I think it always will be difficult for me. But I know that my dad wouldn’t want me to waste my life missing him and I know he would only want to see me happy, that is how I cope. 

My dad would want me to cherish every moment that I have with my loved ones that are still with me, especially my son. He wouldn't want me to waste my time crying or dwelling on the fact that he is gone. I was fortunate to have him as an example of using the uncertainty of life for good, instead of being afraid or letting worries hinder your experience here on Earth.

Cherish every moment  

I have learned so much from having a terminally ill father. I have learned that if I let the hardships and disappointments in life bring me down, I will miss out on all of the good things going on around me. I have learned to cherish every moment because I am aware of the uncertainty of life.  

Time is a precious thing and I have been blessed with a rare understanding of how precious it is and that is why my attitude has not faltered. I would never change my past because it prepared me to be a mommy in ways that I never could have imagined. It has helped me realize that mourning Jax’s disability and feeling sorry for myself about something I cannot change was only keeping me from enjoying every minute with him.  

Most people don’t understand how important the little things are until it’s too late, and only then do they wish they could go back to cherish every moment. My hope in writing this is to help others realize the importance of spending your time being happy and not wasting time worrying about the things that you cannot change.

So, I leave you all with this important thing to be mindful of: Time is a precious thing and every moment full of worry or heartache is a moment wasted, one you cannot get back. Remember, disappointments in life are inevitable and you can either dwell on the disappointment itself or you can find the blessing hidden within that disappointment. Only you can decide how you see the circumstances you find yourself in.  

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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.   

The Situation

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?

Emotional Strength

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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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: 

1. He pulls his clothes off of the hanger in a way that makes the hangers all stick out at strange angles. It makes our closet look really nice and organized. Not.

2. He leaves his socks in the living room. He knows I hate feet and dirty socks are just gross looking in general. Especially his old, tall white Hanes socks with the grey toe and heel. It’s the classic dirty sock image. He wears them so his army boots don’t rub on his skin, I get it, but I still despise having to pick them up.

3. He thinks that if a piece of clothing touches your skin, it’s dirty. Or is he just pretending that’s the case because rehanging it is just too much work. I’m on to him.

4. He blows his nose in the shower. Do I even have to elaborate on this? It makes me gag.

5. He has approximately 5 boxes of “memories” in the basement that he won’t sort through to throw crap away. I have looked through these boxes and I’m not sure why anyone would want to remember a cable bill from 7 years ago. It looks more like a hoarding problem to me.

6. He has periods of loud breathing. This is one of those sounds that I can’t stand. Unfortunately for the both of us, all of the dust he inhaled overseas has jacked up his nose. I try to remember that he can’t help it when I am hearing his squeaky nose. When I call him out he does his best to correct it. I love that. 

7. He would make a tower of garbage or recycling instead of just taking it out to the bins in the garage. Maybe he thinks there is a garbage fairy that comes in and empties them. I’m sure he would definitely do it if he knew it has been me taking care of it all along.  

8. He leaves cups scattered throughout the house. I find cups in the shower, in his office, under the couch pillows, and even in my car. Sometimes there is even a nice ring of chunky milk stuck to the bottom. Those are my favorite.

9. He leaves doors and cupboards cracked open. This is just another one of those things that I can’t stand. I feel like I live with a poltergeist. 

10. He can’t find anything. I think everything is invisible to him until I touch it. I can tell him exactly where an item is and he can be staring at it but he can’t see it until I pick it up and show him.

11. If he tries to throw something away and misses the garbage can, he just leaves it on the floor. I don’t think he gets that the saying, “it’s the thought that counts” does not apply to throwing garbage away. It’s like when he misses he just shrugs his shoulders and walks away saying, “I tried my best.”

12. He drops his clothes in the laundry without emptying his pockets or removing his belt. I can’t tell you how many paper towels I have washed and dried. I’m not really sure why he carries paper towels around in the first place. I am also very tempted to just wash his pants with his belt on them.

13. He always leaves pots and pans in the sink. When I call him on it, he claims they are “soaking.” I know this is just a way to put off actually washing the pot or pan. If it “soaks” long enough, he knows I will stop waiting for him wash it myself. I know… I’m an enabler.

14. If anything that is no longer important to him at that exact moment falls on the floor, he doesn’t bother picking it up. My favorite is when he drops an ice cube and leaves it on the floor to melt, and then I walk through the kitchen and step in a puddle with my socks on. Wet socks are also annoying.

15. He picks at his toenails. How disgusting is it to get up off the couch with someone else’s toenail clipping stuck to your leg? If it has never happened to you, I will tell you, it is really disgusting. You don’t know where that toenail’s been.

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.

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"Why me?"

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 13^th, 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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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!   

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.

https://www.facebook.com/CaptainJaxFFS?ref=hl