As I just stared out on those majestic mountains, my thoughts quietly turned on Alex. I was remembering being in the doctors office when we learned that his first surgery had failed. He was 5 months old and had his first surgery at 9 weeks. The "kasai" surgery was a very invasive 8 hour long surgery. They had to take out his spleen and gallbladder because they both were damaged and then they scraped out all of the scared part of his liver and then attached part of his small intestine to his liver to make a pathway for the bile to escape out of his liver. This was the best chance we had of preserving his liver and his odds looked really good for a few months. All of us, family, friends, doctors were so encouraged by his recovery and liver counts and his jaundice had completely cleared. For two months it looked like it was working. I felt so blessed and humbled that my boy might actually have a chance at a decent "normal life." But those hopes faded as I noticed changes and signs of the surgery failing. When we met with his liver doctor and surgeon it was confirmed that the kasai had failed. Of course our hearts were broken, and the doctor simply said, "all is well, we have mountains to climb, but we are all ready to climb as high as we can go." With that he said that Alex fell into a rare catagory that suggested a repeat kasai might work. So they would go back in, scrape out all the scarring and reattach the small intestine. Cliff and I were so torn on what to do. How could we put him through that again, and if it failed he would need a liver transplant anyway, and if we didn't do it then he would go straight on the liver transplant list. I was just about to turn 24, how in the heck was I supposed to make such a huge decision?
Cliff and I prayed, cried, sought counsel, opinions, anything to help make this decision easier. We ultimately decided we would give the repeat a try. It was our last ditch effort to save his liver. 5 months went by and all looked so well. The surgery was a success!!! BUT now another problem presented itself. His liver was actually functioning extremely well and liver counts were awesome, but his portal vein apparently never grew which was causing all kids if problems with fluid back ups and other issues. Basically his liver was failing but not in a way that would get him any points toward a transplant. The doctor bluntly said, he is probably one of the sickest liver babies, but due to technecalities he won't be listed very high. So we needed another way out. He was listed in November and come January we knew time was of the essence. Of course the doctors wanted his to get a liver while he was still "healthy" because they wanted him as strong as possible. The doctors and liver coordinators tried to plead his case to move him up but it was to no avail. He did not "meet" their terms. Such a stupid game. But I digress. So the doctors approached me about donating part of my liver. Wow! That was a call I never expected. Why in the world was I put in yet another "no win" situation? Donating part of your liver is actually pretty serious and not without major risk. Cliff and I were so torn again! Cliff was against it, because he was afraid for my health and recovery and it was still a pretty new procedure that Primary Children's, at that time had only performed a handful. I, on the other hand, as Alex's mother could not live with myself if I didn't at least try.
Our Bishop came over to counsel with us and give me a blessing, and in his blessing, he said The Lord was pleased with our efforts and he knows we have done all we could physically due for Alex and that Alex was now in the lords hands, the decision has already been made for us.
I felt so much peace knowing The Lord already had Alex's life planned out. Of course at the time we didn't know how things would end, but for that night I felt peace. The next day we headed to Salt Lake City (3 hour drive) where Alex would get some testing to decide if he was even a candidate and then I would get testing done as well. I was so nervous. There was a part of me that wanted the results to come back that I couldn't donate because the risks vs success were so unmatched. But the mother in me knew that I was going to do whatever The Lord wanted me to do and what would give my precious baby the best chance at life. When we got to the hospital and met with the doctors Cliff and I were taken back when Alex's liver doctor basically told us that we should not do it. WHAT! He was the one who called me personally to tell me that was Alex's best chance. We were in agony for weeks trying to feel at peace with this decision and now he back tracks. I could not believe it. He had just looked at me and Cliff, two young, newly married, new parents and said he can't tell us what to do, but only that he didn't feel good about it.
We decided to have Alex tested anyway just to see what our options were, and it was found that Alex was not a candidate to receive a live donor liver. Honeslty to this day I wonder if that was really true, or if that doctor just told us that. But one thing was clear Dr. Guthrie was against my donation. So back on the list Alex went, and we were headed back home. But sadly it was 2 days after that appointment when Alex started his crazy fits and too much ammonia got into his brain. Apparently based on his labs from that hospital visit he should have not been released. Can I say that if we had stayed and been admitted would Alex's outcome be any different? I don't know. But, I can say he was able to go home one last time, and he was able to hug me one last time, and I was able to bathe him one last time, and Cliff was able to cut his hair for the first time, and capture one last video and one last picture!
The Lord knew all along! This was Alex's path. The decision had been made and the mountains were climbed. I heard a wonderful quote from Elder Erying (leader of my church) own talk "Mountains to Climb" "if the foundation of faith is not embedded in our hearts our power to endure will crumble" I believe this can explain how I was able to stand when my legs would not hold me, or why my knees would bend when all they wanted to do was lay down.
i can't ever convey the pain I feel everyday of having lost Alex, or the lasting mental affect it has on me. I am not going to lie, it's hard to live with the after affects of a death. Even 8 years later it seems like yesterday, but also seems like forever, a different life I lived. Whenever anyone gets sick I automatically think they are going to die or have an illness that willl be long lasting. I can't escape those fears or worries. I sometimes think God is punishing me, or picking on me, cursing me, or just has left me. But when I start to think of all of those thoughts, fears, sadness, my different life, I look out at those mountains, and I try to focus on the highest peak I can see, and I envision me and Alex standing on it together. Then I remember that I am still climbing my mountains, I am much slower than Alex but he is so patiently waiting and for me to get to the top.
Moving to CO has been such an eye opening experience because I have understood so much more about myself and my relationship with my Savior. I have faced some pretty hard challenges and I haven't always felt like I was really being looked after. But after having some personal experiences I can say without a doubt I am not alone, and that my mountain climbing skills are being refined each and everyday so that I can in fact make it to the top without crumbling. The Lord wants me at the top with Alex as much, if not more, as I do.
I hope that each of you can find your mountain and never give up on the climb because I can only imagine what kind of view that can be seen from up top. I am thankful that I can look out at those mountains and connect with what matters most in my life everyday that I am blessed to live here.
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