Our walk through this Valley

I pray that this is the hardest decision we ever have to make; I cannot imagine ever having to make a harder one. I will explain to you all, who have fought, prayed, cried, and rejoiced with us, how the last 24hrs have come to pass. I promise to you that, as I always try to be, I will be real, and the first order of business is this sucks.

Around 10pm last night X had his first seizure, we were so relieved, and saddened by his suffering. Sleep evaded us for most of the night, resulting in 20 minute naps here and there for a total of 2 hours sleep, if we were lucky. Around 3:30am X had his second seizure, that one was stronger, and again we continued to ask for more. We all just wanted this to end soon. Around 6:30am X had a 3rd seizure; we were able to see Gods answer to so many prayers.

The Dr. who reads his brain activity (not an EEG tech) while the test are being conducted came at exactly 7am, advising us what her role was in this whole thing. She was going to monitor his brain while sending signals to the affected areas. As soon as she finished setting up 5 world class (Literally) neurologist came in to start the test. There were a total of 9 medical personnel in the room at one point, a bit overwhelming, that’s why I counted.

Brain Testing Time

X was so tired, but put up with their test. I had to keep him awake as he fought sleep, at first we counted to 20, like 100 times. They told us that the test may induce a seizure and it did, a bad one, he ended up ripping out the IV and the arterial line. They had to give him some pretty strong drugs that made him super drowsy. We were almost done, but he fell asleep, we were so close I had to start thinking of creative ways to keep him up. Chest rubs, and prodding from the doctors and mommy were not working well, he just would open his eyes and fall back asleep. I stepped back in and told him what we were going to do, never being one to want to disappoint his daddy, X rose to the occasion (only with one eye) and fought his best to stay up. I had him repeating silly things like how much he loved Spiderman, superman and others, about how great of a dad I was, I had him tell sleep to go away, and that we would get back to him as soon as the test were over. Like the incredibly amazing boy that he is he finished the test. The Dr.’s told us that he did better than older kids, and 45 year olds.

Daddy talking X through the testing

They all left to talk about his results, about 20 minutes later, it seemed more like seconds, they returned and told us what was to be expected. They told us that X has a good chance of being in that 86%, and that they had a good localized area. The thing of it is, it is up in the air on him having permanent weakness on his right hand, it may go away, or it may be forever. They told us the same applied for his face, although the likelihood of that was around 5%. I heard that and I could feel my airway tighten as my heart was trying to escape.

One of our many incredible nurses

The Dr.’s explained that his while his brain has these certain areas that are in charge of specific tasks, along the borders of these areas there are some crossovers. Being that he is so young and his brain is not yet as hard wired as ours, he was likely to recover from any cross over effect. At this point tears are streaming from my eyes, unable to control them I just stood there, motionless. I don’t even think I was breathing at this point, not until one of the neurologists who have worked with us gently touched my back and rubbed it. I took a deep breath and walked away, I had to, I was giving my all not to erupt in a classical wail fest. I stood in the corner, hanging on to their every word as they took the next minute to wrap up, they asked us what we wanted to do. I took a deep breath, and asked for 5 minutes, thinking about that now it seems ridiculous, 5 minutes. Uhhh, can I get 5 minutes, just like on TV to make a huge decision, thanks. What? They said that they would give us 30 minutes and left.

X's sweet EEG Tech.

Sarah walked over to me and I started sobbing, not crying, or small tears but deep down, empty the reservoirs, sobbing. I let it go, as Sarah and I held each other and cried. After a few minutes of this we started talking and both felt like we have been walking on this path for a reason, God has led us here, let’s pray and keep going. Everything you could imagine went through my mind, is he going to hate me for this, is it the right choice, will this stop him from being married, how will kids treat him, and so on and so on.

Then in the midst of all of this I heard a song in my head that I have not heard in YEARS.

The pathway is broken
And The signs are unclear
And I don't know the reason why You brought me here
But just because You love me the way that You do
I'm gonna walk through the valley
If You want me to

Chorus:
Cause I'm not who I was
When I took my first step
And I'm clinging to the promise You're not through with me yet
so if all of these trials bring me closer to you
Then I will walk through the fire
If You want me to

It may not be the way I would have chosen
When you lead me through a world that's not my home
But You never said it would be easy
You only said I'd never go alone

So When the whole world turns against me
And I'm all by myself
And I can't hear You answer my cries for help
I'll remember the suffering Your love put You through
And I will go through the valley If You want me to

I told Sarah, and we cried a bit more, I would point out parts of that song that mean something to me, but it all does right now. I think God was talking to me in a way he knew I would understand, at that very moment. A short time later the Dr.’s came in with Dr. Wetjen and went over all that would be involved. Dr. Wetjen would be removing an area that was not only wide, but deep, all who were there told us again and again it was the best thing for him to live a good life.

Sweet X  and his swollen eye

One of the Dr.’s (Terrance Edgar, the same one who tried to console me earlier) later pulled us aside and told us in his South African Accent “You know most people think of us as just physicians, but I have 6 children, I am a father, like a lot of us. I know how it feels to be a father. You are making the best decision for your son to have a better life than the one he would have otherwise had.” I fought back more tears (where these all come from I do not know), and said thanks. He then explained something fascinating.

He told us that had we allowed this to progress Xander would have started building Seizure super-highways. That in turn would have resulted in a next to impossible seizure operation since the brain would be set in its ways and led to more and more seizures throughout his life. He said the technical term for it is called “Kindling” referring to how one seizure sets off a chain of events leading to others. He advised that X was fortunate not to have that yet, and if it was there, it was minimal, and this operation should stop it. We were able to get a photo with Dr. Wetjen and X before they left.

X and Dr. Wetjen (His adult twin)

We were left to our thoughts and our Xander; Sarah lay in the bed next to him, resting with her firstborn. It reminded me of a lioness resting with her cub, sleeping, yet watchful for any harm that may come to pass. I wanted to lie with them, but not wanting to spoil the moment for her allowed them to rest together. A few minutes later we would be told that we had to get ready to go. They moved him to a new bed, as he moaned with pain, and we all headed to the O.R. for hopefully the last time.

Momma and her cub

Once there he was allowed to pick who he wanted to go in with him, to all of our surprise he picked me. I think it has to do with the fact that I am his protector, the one who he looks to for safety, if I say it’s okay, then it must be okay. Sarah is more of the nurturer, and that is why as time went on, and he needed more nurturing he asked for her. This time we went in and there were no problems, he was scared, I could hear his little heart beating faster and faster. I just held his hand and told him it was going to be okay. Before he went under he said in a very unsteady voice “Daddy, are you going to be here the whole time, watching me?” I told him I would be there till they kicked me out, and I would be there when he woke up.

I left him sleeping and as I walked out the door the Dr.’s said “He’ll be okay Dad, we’ll take care of him like he’s our own”. I replied “I know”. After all that was why we were here, to have the best care in the world. God has been more than faithful to us through this time, and we praise him for his love. Some may ask why this happened to X if God is so good. I do not know, maybe because we live in a fallen world, and as a result of that bad stuff happens. I really don't know, but I know that throughout this entire process he has walked with us, at times carrying us, and showing us through family and friends that he is faithful and just. 10 lifetimes of lessons have been learned due to this, and hopefully someone out therecan read this and renew their faith. That would be an incredible way our little X could be used by God.