In August, Anderson had an eye visit with Dr.Cogen and we learned that he is officially done with patching FOREVER. These were obviously pretty life-changing words. For 8 years I anticipated what I would say in a blog post when we were finally done to capture the excitement, the celebration, the relief. When the day finally arrived and I reflected back on our journey, I realized I was just not in the place to feel those emotions. Thinking about where we were when we started patching and then where we are now honestly made sad & disappointed. Jack was not here to celebrate with us-yet another milestone that my kids were robbed of from losing their JPa. And, relief? Well, I am not sure I will ever have that feeling again because now I know that things are never settled, complete or finally ok. Losing Levi in June altered all established feelings and the new me is still constantly trying to adjust to emotions on a daily basis. I just did not really feel celebratory in August and did not have it in me to do a blog post about this.
Now, it is January and I still am reeling over what has changed in the last 9 years, but it is only fitting that I reflect on this journey that has defined our lives in so many ways.
I am truly grateful for this part of our lives; this cataract journey has taught me more about parenting and perseverance than anything else in my life. Very early in our patching lifetime, I talked to another cataract mom on the phone. Her son was 10 & she told me, now that her patching time was over, she would do it all again. I remember crying (the phone was muted) as I tried to figure out WHY on earth she would choose this added challenge to the already difficult job of parenting and now I understand. The last 9 years-the worry, the struggle, the challenges, the hard-earned victories, the perspective, the planning, the support from so many-have shaped our family and I would not change who we are now.
I look at Anderson and SO much more makes sense to me. I want to go back in time and tell me of 9 years ago a few things about Anderson:
1. He does NOT need sleep. Quit reading the books and the articles and listening to other moms with kids who actually need sleep. Right now you are trying to lock him in his room at night and do a million things to make him tired because you are so confused WHY he has to patch EVERY waking hour and he somehow has MORE waking hours than every other kid his age. Quit fighting it and accept your fate. This kid does not need sleep. And, it will pay off one day. His intensity and never-ending energy will earn him MVP trophies and an invite to the "Gifted & Talented" group at school. He will be curious and interested in everything because he will have lived twice as many hours as other kids his age. When he is 4, he will be upset that superheroes don't wear glasses and you will get the chance to teach him about the truest superhero of all-Harry. Even though you would choose the sleep, there is a purpose for this madness. Keep drinking the coffee.
2. Noni & GG will make this ok. Noni will make patching fun and rescue you on days when you cannot keep the patch going. Her ability to persevere through challenges is in your blood and you will make it. GG will show up with toys & de-skunking tricks (also, do not let Gabbi out of her leash the day you leave for his surgery) and extra patches.
3. Order thousands of more patches than you think you will actually need. There will be ONE day over the years that he keeps the same one on an entire day. You will never forget that day.
4. There are so many worse things that can happen. Drowning happens in seconds. This is the one thing I want to SCREAM when I see any picture prior to June 10.
I have 54 blog posts dedicated to his cataract. I am recapping a few of the milestones here:
First patch ever.
This was before we knew how to put it on, what kind to use, how to prevent irritation by drying milk of magnesia on his skin first, how to take it off (from the inside out) and how many we would go through over the years.
After his surgery in Birmingham.
Our family lived in Birmingham during all of our visits; Hughes was LITERALLY in the OR during his surgery; Sherri got us in with the best doctor; we really have had so many things in our favor.
First pic in glasses.
Unlike the patch, the glasses were never really a problem. I think he realized he could see better with them on, so he did not fight them. We still have that first pair of glasses & hang them on our Christmas tree every year.
Hiding from me to avoid being patched.
THIS sums up the last 9 years more than anything. He HATED wearing his patch. We had to fight him to keep it on all of the time. I shudder thinking about patching a toddler. NOTHING else on this parenting journey has been as challenging as that.
He put his patch on by himself.
This was rare, but I remember being SO proud of him.
FOUR HOURS OFF!
This appointment was, without a doubt, the turning point. We gradually went from zero minutes off to FOUR HOURS off. Tears were definitely shed at this appointment (all appointments, really.) Even with taking out the minutes for bathtime, the minutes between the patch being ripped off and a new one applied and the minutes before he fell asleep at night left, 4 hours off gave us time to PLAY and LIVE without stressing over seconds. Patching still consumed our lives because 12 hours of patching is still A LOT, but this was a game changer to surviving the journey. (Also, shout out to Jack Brimer!)
Self Portrait from school.
I was on the verge of tears when I saw this at pre-school a few years ago. When your tiny kid wears glasses, you worry about how he will be viewed by others, if they will define him and whether or not he will be made fun of or teased. Seeing this made me realize his eye DOES define him and he realizes that, too and this is a GOOD thing. I still have this in a frame.
Getting ready for one of his interviews.
Success looks like a lot of things, but it FOR SURE looks like being asked to represent pediatric patients in UAB videos.
Football.
At his first appointment, when he is one year old, Dr. Cogen told us that he cannot play tackle football past middle school. We blew it off because that was so trivial; he will probably not even like football, we thought! HA HA HA HA HA. Anderson is more obsessed with football than any person I have ever met &, in some ironic twist, he actually excels at it. Stay tuned as we see how this plays out.
Now, on to the last visit:
His appointment was in August and I could not take off, so Brandon drove him there and FACETIMEd me in for the visit.
I am always SO, SO nervous during the checking part. Dr. Cogen is so smooth and never makes any kind of indication of what he sees.
Right here....my service cut out. I missed the part where he said "DONE PATCHING FOREVER!" Knowing Dr. Cogen, he probably did not scream it like that, but I sure did when I heard!
I bought some balloons in the colors of West Point to celebrate!
And, Brandon immediately made a crossbow to pop all of them. Good times.
A screen shot of the moment.
We are not "done" with his eye journey. He still has an implant lens, chances for all kind of issues with his vision and visits to Dr. Cogen. He will most likely not be able to play the sport he loves for much longer; he will NEVER have perfect vision, even with glasses or contacts. His eyes will always be 2 different colors, which is something he loves. We will always be so proud and so thankful for this journey that shaped our family. I will also always flinch a little when I hear the word "patch."
