The Epilogue – The Allison Chronicles – Part 6

After her surgery, Allison returned to the ICU and stayed there for two more weeks to recover. But she was now closer to the door, closer to coming home.

During this time, we had a meeting with the neurologist to review her condition. The doctor knew it was going to be a trying meeting for all of us, so he decided to give us the good news up front.

"We think she can see!" he says with enthusiasm.   

"What?" I blurt out.

This was my typical reaction since day one of this ordeal. Someone unexpectedly gives me horrible news that I can’t believe. In this case, the doctor thought I was doubting him.

"No, we think she can see. The nurses say her eyes are following their movements," he explained.

He then whips out her brain scan and proceeds to point out all the problems. I glance down at the image, but then raise my eyes and study his expressions. I may not be able to read a brain scan, but I can read the face of someone who must deliver horrible news to a young couple about their infant daughter.

It was all bad news. The brain damage was extensive. I learned more about the functions of the human brain that day than I ever wanted to. The vision success was the only good news, and the doctor was truly surprised by that because of the damage to Allison's optic nerve.

We brought Allison home a couple of days before Thanksgiving. It was the best Thanksgiving ever because there was so much to be thankful for.

And so, the task of raising Allison Ake began. However, if you remember, there was a promise made the day after she was born, when I was driving that strenuous half-mile to the children’s hospital to see her:

"God, if you let her live, I promise I will raise her the best that I can."

I reiterate: You should never make conditional promises to God. You should never bargain with God. Never. Period.

However, if you find yourself in a dire situation and out of desperation you spontaneously make a conditional promise to God, and if by some bizarre, even miraculous means, God fulfills his part on your bargain, then you had better keep your promise. Period.

So, I began to fulfill my part of the bargain. The doctors had us focus on Allison's mental development, probably because they believed her physical capabilities were limited. They instructed us to read to her regularly, even though she could not comprehend yet. So, I would place her near me and read my newspaper or magazine out loud to her. One time my wife yelled at me when I was reading aloud an article that had some adult content.

But then another chapter in this incredible story started to unfold. Allison began to progress much better than the doctors had told us to expect.  Allison was developing mentally at what seemed like a normal pace, and while there were physical issues, she exhibited decent mobility.  

I questioned her primary care physician about this.  He explained that when a child suffers brain damage at birth, sometimes their body is able to rewire itself and assign some functions to healthy brain cells, cells that typically would not be used for anything. The result is that although Allison has severe brain damage, as the neurologist had shown us, she has only moderate cerebral palsy. 

Raising a child with special needs is challenging. There were numerous operations (including three additional brain surgeries), physical therapy, leg braces, etc. There have been so many important decisions along the way and often these were made with limited information. And sometimes you choose wrong.

My mission was to raise her as well as I could. Allison didn't realize how much she was loved or why she was loved, but she surely knew she was loved. And I poured so much of myself into her. The result of that effort is that when my co-workers would meet my young daughter, they wouldn't say, "She's a lot like you," they would say, "She’s your clone.” However, having someone copy all your bad traits is a humbling experience.  One time when she was seven years old, we were discussing something at dinner. I commented to my wife that Allison thinks she knows everything, which resulted in the following exchange:

Allison: “Father, did you just say that I think I know everything?"

Me: “Yes, I did.” (I said sheepishly, thinking I had hurt her feelings)

Allison: “Well, I don’t think that I know everything”. I do know everything!”

I won’t go into much of her adult life in order to respect her privacy. She graduated in four years from a private college with a 3.0 GPA, while not being able to see or read that well due to an inadequate eyeglass prescription that has since been corrected. She ran track as best as she could in high school and runs, yes runs, in 5-K races today. That is difficult to do under normal conditions.  I can’t imagine how that feels with a disability.

Allison has a good job and drives to work. She is a voracious reader, (probably due to being read to so much as a baby). She reads about 60 books a year; her best year she read around 100. We’ve never tested her I.Q. but she is a very intelligent woman.

Raising Allison Ake has been by far the most difficult, challenging job I have had in my life. Being the father of a daughter who at birth was too stubborn to die when she was supposed to, is difficult enough. Throw in the special needs, high intelligence, and some emotional issues and it is frequently mentally exhausting. But raising Allison Ake also has been the most rewarding job I have ever had.

I have pushed Allison hard her entire life, part of the promise to raise her the best that I can. While the doctors had set her expectations low, I have set the expectations high. Sometimes I have pushed her too hard, just as my mother pushed me. And our relationship has suffered as a result.

But life is a trade off. You can’t have it all. And in this case, I will willingly sacrifice that relationship to ensure the advancement of my daughter. That’s the job I pleaded for. That’s the job I have done. Sure, I have made mistakes, but I have no regrets about how I did it.

With Allison, I have had to learn to appreciate what she can do and not agonize over what she can’t. With her, the glass is forever half-full, and my life is richer because of it.

There are still some obstacles for her to overcome. But she is making progress at her pace, not the world’s. This concludes the Allison Chronicles, but her story continues ….

I Will Fear No Evil – The Allison Chronicles – Part 5

In Review: My two-week-old daughter is in critical condition after suffering a brain hemorrhage at birth. She needed a reading of 300 mg/dL on a vital test in order to receive a lifesaving operation. The last test had registered a reading of 690 which meant there was no time to get down to 300 before she would die. I had been praying for a test result of 300, and my wife has just called to inform me the next test has come in exactly at 300.

The important thing to note is that I am not uniquely blessed here. If I were, I wouldn’t have been in this situation to begin with. Nor do I possess any type of special faith. This is evident when my wife tells me the reading is 300. My first reaction, my very first reaction, is to ask, “Did the doctor say how that happened?” The question perturbs my wife. “No, they didn’t say anything”, she snaps back.

Because she doesn’t care how it happened, it’s just wonderful news. And the

doctor doesn’t care how it happened, he just knows he has been given the opportunity to save a life that he thought was lost. 

But my wife had not been praying specifically for 300, and the doctor had not been expecting 300. I had been the one praying for 300, and I had been the one who knew that achieving 300 was not possible because it was impossible for the reading to drop from 690 to 300 in two days. Oh, I needed to know how this happened.

I must conclude that the laws of physical nature have been superseded, and I guess, that might be a different way of defining a miracle. Given the information, I do not believe the thick fluid started draining out of her brain at an increased rate. This means the fluid did not gradually dilute from 690 mg/dL to 300 over two days; it had to have changed in an instant. And there are examples in The Book dealing with the instant transformation of fluids, including water into wine, and the cleansing of a woman with an “issue of blood”, which interestingly occurs is the Jarius narrative mentioned in Part 1.

Now, if you doubt my conclusion, you are forced to come up with various physical explanations of how the test could now be at 300 when it was at 690 two days ago. And that’s fine, go right ahead, I will not argue with you. However, do realize that it takes as much faith to believe in whatever explanation you devise as it does to believe that God interceded. And just be careful about what you choose to put your faith in.

I had prayed specifically for 300, and now I am dealing with a result of 300. Consider that it is not 290. It is not 310. It is exactly 300. It is as a precise answer to prayer as you are ever going to get. And again, it is not the result of any great amount of faith. It is literally amazing grace. As some of you have already realized, I made a massive error in my prayer. I should have been praying for a blood thickness of 200 mg/dL, giving the operation a high chance of success, instead of the 300 that I not have, and putting the outcome in doubt.

Now you might think someone who received such a direct answer to prayer would run up and down the street proclaiming the news. Maybe shout it from the rooftops. But I respond to encountering the presence of God, more like Isiah, who declares in The Book “Woe is me. I am doomed”. So I took a step or two back and kept these details secret until now. Regardless, I had no time to proclaim anything because there was emergency surgery scheduled for tomorrow.   

Early Wednesday morning, my wife and I meet with the doctor to discuss the operation. It is delicate; it is risky. Eighteen days ago, I could not even conceive of sitting in that hospital waiting while doctors perform brain surgery on my infant daughter. Yes, I’m nervous. Yes, I’m anxious. And yes, it is physically and mentally draining. But there is one emotion missing now that had been engulfing me this entire time.

Yea, though I walk through the valley of the shadow of death, I will fear no evil.

The shadow of death is still there. The evil is still there. But the fear is gone.

You see the keyword in that passage is not death, nor fear, nor evil. The only word that means anything here is through. The statement of faith David is making is that he is going to make it through this. This is going to be a brutal walk. There is going to be incredible pain. Evil is present everywhere. But he is walking through it. No matter what happens in that valley, he is expecting to climb out of it on the other side.  

And this is a process. When you enter this dark valley, you are more afraid than you have ever been in your life. But at some point, in this perilous walk, you are forced to stare the evil in the face. And then you have a choice, you can either cower in fear or choose to walk on by faith. Faith may really be the opposite of fear. You emerge from the valley of the shadow of death a much different person than when you entered.

I matured as a man more in those eighteen days that in any other time in my life. It is literally a defining moment, in that I was shaped – defined, if you will. It determined how I view life, how I respond to crises, how I interact with people. Those eighteen days changed who I am forever.

The operation was a complete success, without any near-term complications. I was confident it would be, because Allison had beaten the long odds so many times, I had come to expect it.

And yet the prize for making it over the first three hurdles is this:

#4. If she makes it through all that, she will live with extensive brain damage.

There is no escaping the fact that Allison has significant brain damage, which typically results in severe cerebral palsy.

“Sometime I think it’s a sin. When I feel like I’m winning when I’m losing again.” (Gordon Lightfoot).

Next Time: Beating The Long Odds One More Time – The Epilogue (Part 6).