Saturday, September 08 2018
We brought pirate eye patches for all of the kids to wear so they could see like Jax sees. Jax got to lead them around the playground and hearing their responses about the experience was hilarious.
What a great lesson in empathy!
I love that they all got to walk in Jaxon’s shoes for a little while so they can understand why he does things a little bit different. They were all so sweet and had great questions for us about his life with one eye.
“Did he cry when he had surgery?”
I think we could all learn from the way these kids embraced this experience of seeing the world through someone else’s point of view... someone who’s a little different than them but still very much the same.
Kids are awesome like that.
Wednesday, November 01 2017
A year ago we were recovering from eye removal surgery. It was brutal for everyone involved and very painful for this rockstar!
Tuesday, January 10 2017
Jax has had his prosthetic eye for 3 weeks now. People have been pretty interested in talking about our experience thus far.
The conversations we have had typically begin on a serious note and, more often than not, they end in laughter as Tyler and I share our stories about our 3 year-old and his fake eye.
I will share some of the highlights and answers to the most asked questions we have had up to this point. If you have a question, by all means, ask it. It's not everyday you meet an almost-4-y.o. that can pop his eye out.
1. Jax's eye cost $3400 and insurance only covers the cost of the first one. 3-year-old boys give no shits about this.
2. The ocularist said it would probably take Jax a month to learn how to take his eye out himself... It took him 1 day.
3. Prosthetic eyes are small and they are not easy to find when lost, especially in a child's bedroom.
4. Carseats are not a good place to lose a prosthetic eye. They find their way into cracks and crevices.
5. According to Jax, prosthetic eyes are easily blown out of one's hand by the wind... in the car... in January... when all of the windows are up.
6. Apparently, strong box fans can blow your prosthetic eye out of your eye socket... I have yet to see this happen, but Jax said it happened.
7. Getting a slobbery eyeball spit into your hand is always fun. They have no flavor, but I guess they're fun to suck on.
8. When we ask our son, "Where is your eye!?" it is not a toddler anatomy quiz, we actually want to know where he left it.
9. If you are 3, you have a prosthetic eye, and you aren't getting the attention you want, taking your eye out 7 times in 7 minutes is a good way to get attention.
10. Eye jokes happen in our house. The shock value when people hear these eye jokes is great.
11. Sometimes, Jax comes out of his bedroom and his eyeball is upside down. A swirl motion on the outside of the eye fixes it right up.
12. When your kid has 2 normal looking eyes, nobody at the store stares at you, and their kids don't ask, "what happened to his eye?!"... I like that.
13. The fact that we never have to do eye drops again or worry about Jax needing another surgery is fantastic.
Because we had only known Jax with his cloudy eye, losing that part of him was sad and strange for us, but we are getting used to Jax with his new, normal-looking eye.
He doesn't understand how much he has been through, or that part of him is different from the other kids he encounters, but he seems proud of his new eye, and he continues to be our happy, hilarious, loving, adventurous one-eyed Jax. He's a stud.
Thursday, December 22 2016
When your kid is visibly different, you worry about how the kids at school will treat him. You worry about the moment he realizes his difference and feels the pain that come with the stares and dumb comments.
Wednesday, December 21 2016
Jax got his new eye!
It's very strange seeing him without his big blue eye, and it going to take some getting used to, but there will be no more surgeries, no more glaucoma and no more eye drops.
We think he looks so great
Tuesday, December 20 2016
Today was the first of 2 full days of eye appointments to get Jax's prosthetic eye made. This marks the end of an emotional stage for us within Jax's journey with Peter's Anomaly.
At the mall, during a 3 hour break in between appointments, we found a little bag labeled "finders keepers" on the seat of one of the kiddie rides by the food court.
It's funny how little reminders of all we have to be thankful for pop up when we need them most. The end of our journey with Jax's "sick" eye marks the beginning of a new one with our sweet boy. That means more Christmases, birthdays, and memories.
The family that left this little bag with one of our little man's favorite toys inside doesn't get to start a new chapter with their little man. They're starting a different journey now after their son's battle with cancer. I pray they somehow find peace during their first Christmas season without Brooks.
Wednesday, December 14 2016
I read this quote in a book today and it took me back to the day we found out Jax was born blind. All I remember feeling was fear and devastation. I told myself over and over that it wasn't supposed to be this way.
3.5 years ago, I would have tried to convince myself that this quote was true, but deep down, I wouldn't have truly believed it.
Today, after all we have been through these past few years and all of the lessons we have learned along the way, my heart knows that I needed Jax in my life just the way he is. I didn't expect this wild journey that he has taken us on, but he's showing us the joy life can bring when you accept it as it is and learn to see how perfect all of life's imperfections truly are.
Friday, November 04 2016
"I get a new eye. There was a bubble on it! That's okay!"
3-year-old Jax-man just said this in his room. His innocence is adorable.
My new motto is this: Whatever is, could not have been otherwise. It has helped me accept Jax just the way he is and believe that the way he was born and all that he has been through could not have been any other way.
When he was born blind, I cried about what "should" have been and I worried about his future. Now I believe he is perfect just the way he is and all of this serves the purpose of teaching, not only him and I, but everyone who meets Jax.
There is no event, person, place, thing or circumstance on this Earth that stands alone, unaffected by anything else. Everything that is here was meant to be, and once we accept what is and that it was created by a higher order that is beyond our control, we can move forward, learn, and grow as humans instead of dwelling on the past and worrying about the future. We can truly enjoy and Be in the moment that we find ourselves in right now.
I was given this tiny human for a reason, and he teaches me things everyday. I once thought that as his mom, it was my job to teach him how to live. Now I follow in his tiny footsteps and understand that he was put in my life to show me what it means to truly be alive. We can learn so much from our children if we let ourselves.
I literally played in a pile of leaves for 3 hours straight today, and it was truly incredible. I felt like a kid again.
Sunday, October 30 2016
One week ago tomorrow, our tough Jax-man had emergency surgery to remove his right eye. His cornea was so thin that a bubble started filling with fluid on the surface of his eye like a water balloon. It was an emotional decision, but we felt removal was the best option for him.
Last Thursday, the night before surgery, we had a last minute "eye going away" party to celebrate the end of our journey with his right eye and to welcome his new eye. We wanted it to be a happy experience for him so we can start building his confidence right away. Jax's friends, family, neighbors and even his teacher came over to help us say goodbye to his eye that just wasn't working right. (He proudly announced to his class that morning, "I'm getting a new eye!") It was overwhelming seeing all of the support for our boy I get choked up even thinking about it.
It was sad and strange losing a part of our little man that we worked so hard to save these past 3 years, but we were ready to say goodbye and start this new journey. I am so thankful for everything our journey has taught us about ourselves and about the strength of our little man thus far. He will probably never understand the impact he has had on my growth as a mom and a human being. Words can't even begin to describe what raising this resilient little person has forced me to learn and understand about the world around me. I'm happier and more whole because of him.
As most of you know, mommy is a die hard Cubs fan and is very thankful that they started winning against the Dodgers the day Jax lost his eye [if I believed in a goat, I might say his eye was it ].
As strange as it sounds, it made the process less stressful because mommy has been waiting for her cubbies to get to the World Series for, well, her WHOLE ENTIRE LIFE.
Jax had throat swelling from the breathing tube and a lot of pain in his eye, so after 6 days I am happy to say that he is back to his normal, happy self! We even worked on a awesome song in the bath tonight. He's got a nice shiner, but doc said today he is healing up nicely!
We are hoping we will get to show off his brand new eye in 7-8 weeks!
I whole-heartedly appreciate all of the support over the past week. We are forever grateful for every single person who stands behind our superhero, Captain Jax!
Friday, June 03 2016
On Tuesday this little man had an appointment in Iowa city as a follow-up to our last eye appointment, you know, that shit-tastic appointment where we saw via ultrasound that Jax's retina was detaching.
As the ultrasound tech did her thing, I sat in the chair with my angel of a child on my lap (yes, I actually mean it, he didn't even budge as she did this when he normally has to be put under anesthesia for this procedure) waiting for her to reaffirm the prognosis that retinal detachment was imminent.
I waited and waited and she searched and searched. Finally she piped up and said, "well they normally don't reattach themselves." By the grace of God, she couldn't find the detachment. Dr. came in later only to confirm that it was no where to be seen.
After this amazing news we also found out that his pressure was still normal and we got to take one drop off of our daily routine (which is awesome).
I couldn't stop the water works when I got in the car to head home. I was smiling like an idiot as I drove down the interstate, I still can't believe it. We are so incredibly blessed to have so many people rooting for our little man.
I just wanted to say thanks for all of the thoughts and prayers, I truly believe they worked. I'm also pretty sure my old man put in a good word with the big man!