Sunday, July 06 2014
July 4th, 2014 was spent at my brother and sister-in-law’s house in Hills, Iowa. We spent some time with friends and family, ate some great food, had a few drinks, and watched an excellent fireworks display.
Because I’m an awesome wife, I told Tyler to spend the night with his brother in Hills and that I would take Jax and the doodles home to bed.
The four of us began our 40-minute drive at around 11:30 PM. About five minutes into our trip, both dogs and Jax were sound asleep. I found myself alone with my thoughts, reflecting on this Fourth of July compared to last.
As I thanked God for making today absolutely stress free, I felt a tiny lump in my throat accompanied by a burn in my eyes. I realized that today was what a holiday was supposed to feel like, and as a family of 3 (+ 2 doodles), it was the first time I had nothing weighing on my mind, other than why I had eaten so many pieces of cake.
Jaxon’s first ever exam under anesthesia (EUA) was on July 5th, 2013. Last Fourth of July, we did exactly what we did today, only Jax was just under 3 months old and we were under the impression that he would be blind. We had no idea what we could do to help our baby and none of our questions had been answered yet.
I remember sitting in a fold out chair in the driveway that night, watching the fireworks with a trembling doodle in my lap, wondering if my son would ever enjoy fireworks as much as I do. As I heard the other kids exclaim, “Whoa mom, did you see that one?” I couldn’t help but be a little jealous because I didn’t know if my son would ever say those words to me.
I laid in bed that night and tried my hardest to fall asleep. The results from this first EUA would indicate whether we could go ahead with a cornea transplant or not, so you can only imagine how hard it was to turn off my brain to go to sleep.
4:45 AM came way too soon, but after 3 months of waiting, we were ready for some answers.
We found out some crucial information after that first EUA. Jaxon’s lens and cornea were not attached and he was a good candidate for a cornea transplant. This was the information we prayed to hear and thus, the roller coaster left the gate and the yearlong ride began.
I’m not going to go into detail of the ups, downs, curves and loops we’ve encountered on this ride, but today I finally felt as though our first thrill ride was over.
After the transplant itself, all of the post-transplant care and appointments, the numerous EUA’s, developing glaucoma, having glaucoma surgery, and the ultimate failure of the transplant, we made the decision to hop on the ski lift, instead of the next roller coaster.
We decided as a family that the best thing for Jaxon (and us) right now is to deal with the glaucoma, but let everything else be. We wanted the security of knowing that this ride would be free of the unexpected ups, downs and loops, so we chose the ride with a more predictable path. We know that sometimes the ski lift gets stuck, and a little maintenance is required to get it going again, but those little bumps are a walk in the park for us now compared to what we went through last year.
At first, vision was the most important thing to us. We would have done anything to help this kid see, because seeing was what we thought was normal. We were scared because blindness is nothing we had ever experienced before. We didn’t know how to treat blind people, we didn’t know how to raise a blind child, and at first, we definitely weren’t thinking that there might be something positive that could come out of this.
But as time went on, something changed and quality of vision became less important to us. As we saw Jaxon’s personality develop and eye drops and baby glasses became our norm, we started to understand that this little boy is as normal as he can be and we decided we didn’t want to effect his quality of life just "Because of what society as deems normal."
Jaxon is doing just fine with the limited vision that he has in his other eye, and we have been blessed with a miracle that the cloudiness in that eye is only getting clearer. He is a curious, fearless, and silly little kid, just like any “normal” 1-year-old boy. Visually impaired is our normal now, and he has led us to discover so much about our strength as individuals and as a family.
Today I didn’t worry about Jaxon’s next appointment or his next EUA, I worried about his little knees as he crawled around the driveway and garage exploring every inch of the place.
Today I felt blessed that I got to see my son see. I got excited when I carried him towards his puppies and he got a huge grin on his face and said, “Addie” from 5-feet away. This happens everyday, but it is something that never gets old for us.
Today I sat on a blanket with my son in my lap and I watched him turn his head to the side and watch the fireworks, because that is the best way that he can see them. He might have only watched them for a total of 5 minutes before wanting to crawl around and explore some more, but that’s okay, because I know that in a couple of years it will be my son that says, “Whoa mom, did you see that one? It was awesome!”