I apologize it’s taken me so long to write this. Life has been busy. I’ve been working on a feature film project, and it has eaten up all my free time. Life goes on, even when challenges don’t subside.
I wanted to thank everyone for your warm thoughts and well wishes for Max, it means a lot. For those of you who missed my first blog post about my son Maxwell, you can read it here: A Story Twist With Blepharophimosis.
Surgery is no fun no matter how you dice it. Especially when you are laying your 4-month old on the table to be anesthetized and sliced, it can be a bit of a stomach wrenching experience.
Fortunately, for us, Dr. Patel at Primary Children’s Hospital – Moran Eye Center, was equally comforting as he was qualified. He has phenomenal bedside manners, and is an extremely kind human being. Nothing about our experience with him made us feel like he was in a routine, or that he’d seen this a thousand times, he treated us as friends, and as if he was bearing this burden with us.
Max Doesn’t Even Know
I was surprisingly calm and trusted things would work out.
Maxwell had been recipient of two priesthood blessings (for those of you who don’t know what those are, read here) that I had the privilege of giving him – along side family and close friends. In those sacred experiences, I felt a peace that all would work out and that this congenital disease would not hindered Maxwell from accomplishing his work in life, but that this condition was indicative of something unique about him as an individual, and that in time that unique nature would make itself manifest to us, and at some level he would be healed.
The road to getting to this realization was an arduous spiritual journey for me, and I have been taught many vital lessons since Max’s birth. One such lesson is that our mortal time is so brief, and that which we deem to be “so disastrous” is really “quite glorious.” I know that sounds contradictory, but here is what I mean…
From our weak and often selfish perspective we interpret life challenges so drastically different from heaven’s perspective. The mortal blows to our comfort – delivered by circumstance – are really divine diagrams making themselves manifest in our lives, positioning us for maximum growth if we do not shrink from them.
Max doesn’t even know he has a problem. Never has since he was born. At this particular time, I believe this challenge has been for us, well, mostly me. But there will come a time when I’m sure this will be a challenge for him at some level.
Max’s condition has exposed me to how much value I sometimes place on the vanities of this life – looks, fitting in, looking acceptable. All those thoughts of what Max will face with cruel kids in elementary school and junior high begin to surface. Memories of all my young insecurities multiplied by Max’s condition create a compounded equation in my head I fear he’ll have to face. All because he’ll look a bit different. This has re-opened my eyes to the reality that “the Lord seeth not as man seeth; for man looketh on the outward appearance, but the Lord looketh on the heart” (1 Samuel 16:7). This world values too much that which matters least. I have indeed felt that Max’s heart and character is unique.
As a parent, I sometimes unconsciously want to remove the very obstacles that may craft the kind of character my children need, or I need for that matter. I think too often we want to wish away heaven’s curriculum in favor of our own – I know I do. I mean, sure, I wish Maxwell’s eyes were just like our girls, and if I had it my way they probably would be. But what lessons would I be missing?
Some may say that these genetic mishaps are just a random part of mortality, but I am of the belief that divine design is far from random, especially when it comes to the condition in which God’s children arrive to earth. These conditions to us mere mortals may feel so eternal, which is why we react so harshly to their arrival, but in heaven’s view they are very temperamental and are mere means to an end – that end being a more refined soul in us.
Ok, I’m done philosophizing, something I need for self-therapy – so I can make meaning of my life experiences, so thanks for bearing with my soap box indulgences.
Now, back to Maxwell’s surgery…
Primary Children’s hospital was extremely busy that day, people coming and going, patients in and out, and there were children all around us with far worse conditions than Max’s BPES.
We had to wait about 4 hours before his surgery, so it was an all day event after all was said and done. It was a hard thing to hand him over to the anesthesiologist and watch him walk back with him into the darkly lit hallway that lead to the surgery room. As he left, our hearts sank, I’m sure more so for my wife.
The surgery only took about 4o minutes. A nurse soon came in and told us that Max was in the recovery area and would be waking up soon, and invited Mindy to walk back with her and stand by Max so that he would wake up to a familiar face. The staff only allowed Mindy to go back with him, so I stayed in the waiting room with my parents.
It was so nice to have my parents there, I know how difficult it was for my in-laws to not be there as they are currently serving a voluntary LDS mission in Missouri. Having family around during these close-to-the-heart situations eases the anxiety and brings peace.
When Mindy first saw Max she was a bit horrified. It was hard for her. She actually snapped some photos but was hesitant to text them to me, so she waited until I was able to come back and see him in person. Good thing she did, because it was hard to see.
Here are some photos of what Max looked like right after the surgery (click them to enlarge):
Max was up and alert the next day, as if nothing had happened, and he was looking all over the place as if a whole new world had opened up to him:
For the first few weeks Max basically slept with his eyes opened and it was a bit weird at first, then it just became kind of funny – sometimes his eyes would follow you while he was sleeping and he would smile at you in a hazy way, he would be totally asleep, almost like his sleep and dreams would incorporate what he was seeing with his eyes.
Here is Max the same day after the surgery, already looking better – he healed amazingly fast! I wish I had cells that regenerated that quickly:
Here is Max the day after surgery:
Here is Max three days after the surgery:
Dr. Patel was kind enough to send us these before and after photos (sorry for the poor quality, it was a scan of a printout):
Here is max today:
That’s our update on Max.
His next surgery won’t be for a few more years, so we’ll keep you posted on any changes that happen to occur before then.
For those of you that have a child with Blepharophimosis, and are just learning about it, please, just know that all will be well, and that it’s not as bad as it seems. Hang in there, and just enjoy your baby!