How do you "fix" a perfect baby boy?

My wife's call was expected to be like any mid-day, during the work day phone call. A request for me to get groceries on the way home from work or another "Honey do." In fact, at the moment I picked up the phone, I confess, I had forgotten that she had a routine pregnancy check-up that day. She was crying. Ambi is a very emotional person and I'd heard her cry before. I'd never heard this cry though.
She said "There's something wrong with the baby."
She was sobbing.
I said "Okay. Whats going on?"
"He has a cleft palate on both sides of his mouth and he has six fingers on each hand."
I was shocked but at these types of moments there is something in me that sort of shuts down the normal human reactions and saves them for later. Outwardly this sometimes appears like I feel nothing. I could hear that she was in the car driving home and I was worried about her driving and talking on the phone at the same time, especially in her state of mind. After a quick "are you sure?" I asked her to calm down and drive home safely.

The geneticist seemed convinced of his assessment of the situation, even though he kept saying things like "We can't know for sure without a genetic test."
 He told us that the birthrate of babies with clefts is about 1 in 1,000. He also told us that the birthrate for babies with extra fingers is about 1 in 3,000. He told us that most babies with both of these problems have a genetic disorder called Trisomy 13. Trisomy 13 babies usually pass away within days of birth. Only 10% make it through their first year. Trisomy 13 manifests in about 1 in 10,000 births. I mentioned that all those figures would mean that the chance of having a baby with these two issues and no underlying genetic disorders was about 1 in 3 Million. He concurred. He gave us a list of other defects we might expect to see when the baby was born. He told us that they usually catch these things sooner. That we could have a genetic test to find out for sure but there was a small chance it could cause "early termination" of the pregnancy. Since there was no reason to take that risk we chose the torture of waiting the remaining months not knowing whether our baby boy would live or die and the realization of the enormity of the odds against him.

Over the next couple months Ambi and I discussed things with friends and family. We held fasts and prayed a lot. I think we both excepted that we would not likely have our baby for long. For Ambi it was a very difficult time with much sorrow mixed with a little hope and lots of prayer. I tried to "hold off" on the emotions until we knew for sure. It worked some of the time. We both agreed that the cleft and the extra fingers would be a miracle and a blessing if they were the only problems.
"If all he needs is a couple routine surgeries that's much better than the alternative" I said to everyone who asked about him. "But that probably isn't the case."
I needed to say this each time. Not so they would know, but so I would.

A day before the due date the doctor informed us that we would need to have a C-Section birth. The baby was not in the right position for a normal birth. Ambi had dodged C-Sections five times and each time we knew a C-section was not right for her. This time it appeared there was no getting around it. The baby wouldn't move to his proper place in time. We went in early in the morning for the scheduled birth. Ambi received a Priesthood  blessing in which she was told she would be just fine. As for the baby, either God was silent on how he would be or I didn't hear Him. The blessing for Ambi was soon fulfilled for when the doctor did the pre-birth ultrasound it was found that the baby was in the perfect position for a normal birth.

In the birthing room labor was induced at around 7AM. My mother and Ambi's mother joined us to witness the birth. The mood was much different from our other babies's birthdays. A few hours into the labor they told Ambi that if she wanted an epidural now was the time. She had decide not to have one this time because they had only worked right once in five births. She wanted to avoid the ordeal and we informed them of her decision. They were sure that their Anesthesiologist was "one of the best" and could make it work. She changed her mind. Our mothers left the room and went to the waiting room to pray that she could at least be spared some of the physical pain of the day. When they returned they found their prayers answered. It was working perfectly.

Around 8PM our third doctor of the day (the substitute's substitute) came into the room, introduced himself and proceeded to tell us, "Ambi hasn't made any progress for hours now. It looks like we're going to need to do that C-Section after all."
I told him in so many words "No your not".
 Later I was told that at this moment I was visibly very angry. I knew, from her blessing, that she would be okay. I also knew that if she had a C-Section she wouldn't be okay. I also knew that this new guy probably had something to do that night. He told us that he would come back in an hour and if she hadn't made any progress we would need to do and emergency C-Section. We prayed for an hour straight. We stopped praying only to send out Facebook and text requests for prayers from everyone we knew. We received confirmation that dozens of people were praying with us at that moment. Ambi's mother, my mother and myself all took turns saying prayers out loud as well. When the nurse checked Ambi after an hour had passed she excitedly said "10cm! It's time!"
Then she turned to the other nurse and asked her to get the doctor there "right now, she's ready to  push!"

As the baby came out I tried to prepare myself for whatever I was about to see and feel. He looked perfect to me. He had the cleft that we had been told about as well as the extra fingers. I looked for any of the other long list of visible flaws I expected to see and could find none. He was perfect. Excepting the bilateral cleft his face looked to me just like his older brother. From that moment I had some hope for him.

The baby was born weighing 9lbs 15oz. 

Below average for a West.

It took much longer than normal for the baby to make it to his mothers arms. It was torturous for her but she knew that he would have extra attention. He was poked and checked twice as many times as our other babies and by twice as many specialists. They took blood for a Trisomy 13 test as well as for the other Trisomy disorders. The news, we were told, could take several days.

The next day we got special permission to bring several family members into the baby ICU together to give him a name and a blessing. The blessing was short. It also gave us no answers. All of his blessings were things he could do in this life or the next. Once again God was either silent about our Boy's future or I didn't get His message. Meanwhile dozens of people where praying for his well being.

He had an ultrasound on his heart. The doctor found a "small defect". A hole in the top two chambers of his heart. It's called an ASD. It wasn't until the following day that a nurse explained that an ASD is very common and many people live their entire lives without knowing they have one.
"In fact the only reason you know about his is because the heart is always checked when Trisomy 13 is suspected." she explained.
 His heart had no signs of the disorder. A neurologist checked his brain.
"The brain would be smooth and not bumpy." he said. "I didn't see that on him".
His hearing was checked. It was good too.

The Trisomy 13 test came back and no one told us. While we where preparing to bring him home a couple days later we asked a nurse if there were any other tests that came back.
She said "No nothing but this Trisomy test here".
"We haven't seen that yet! Could you tell us what it says?"
She replied "Oh, I'm sorry. I thought they told you. It came back negative".
"NO! Thank you for telling us though." I said.
We rejoiced! We still didn't know what had caused his problems but that was the worst thing it could be. He was a 1 in 3 Million miracle!

We took him home the fifth day after he was born. Over the next few months we taped his face as instructed. It was a continual annoyance to him but seemed like a blessing to us. After two or three months we started to realize that he wasn't looking at anything like most babies his age would. He couldn't see us. Or anything. We took him to an eye doctor who told us he could find nothing wrong with the eyes themselves. We went to a geneticist who said they could find no genetic abnormalities. They suspected it was a genetic issue that hasn't been identified yet. We suspected it was a blessing from God. We were right. Over the next few months he started slowly looking at more and more objects and people. Later his eye problem was identified as Ocular Motor Apraxia. Another very rare condition which affects the way the brain communicates with the eyes and which usually repairs itself by the child's tenth year. We identified it as another miracle.

 His perfect face before the surgery

The days leading up to the first surgery to "fix" his lip were, we found, a very emotionally stressful and confusing time. I found myself not only accustomed to his face, but loving it also.
I embarrassingly told Ambi  "I  know he needs the surgeries to look 'normal' and to be able to eat and talk properly, but I feel like I don't want to do it."
I loved his smile too much. His face was perfect to me. Ambi told me she felt the same way. His face was a true miracle from God. An answer to our prayers. We wondered together at our weirdness. The day of the surgery we told a nurse how we felt.
She explained  "Most parents feel the way you do. Lots of people love the way their child 'smiles with his whole face.'"
It was nice that we weren't alone in our weirdness but we still didn't want him to be "fixed." We knew he needed it though and, after taking one last picture, we reluctantly sent him back to the operating room. I caught myself doubting I could ever love his face as much as I did right then.

 The last picture moments before the surgery.

We were glad he was already sleeping when we sent him back.

Looking back, I'm glad the surgeon wasn't there when we first saw him after surgery, because he was transformed and I was angry. It wasn't even close to what I had imagined. He looked so different and the lines looked so strange to me. I did my best to hide my feelings from Ambi and talked about how he looked even more like his big brother now. He, of course, was in a lot of pain. This caused much distress to Ambi and I as well.

Immediately following the surgery. 

As the next few weeks passed his face healed and his lip stretched to look closer and closer to what we imagined for him. I found myself getting accustomed to his face again and his smile began to light up the entire family every time it appeared. His next surgery, on his palate, came and went with the same troubling moans for him and distress for us, but without the visual transformation of the first one. As he began to smile again we once again thanked God for the miracle of his needing the surgeries.

His new perfect face on his first Christmas.

How do you "fix" a perfect baby boy? You don't. You take the necessary steps toward his happy future. You thank your Father in Heaven for each and every one of his "flaws," recognizing them each as a miracle. You look at his face, see him smile, and know that you'll keep loving it even more each time you see it.