"Sit, be with them, love them, share in their emotions."

There have been several occasions where I've attempted to sit down and write a blog, but to be honest, there has been so many little details and information thrown around the past few days that I was exhausted. It was a big weekend for Conley, and while I was very excited to see him extubated and awake, I was also very nervous about what that would bring.

I know I've talked before about making sure Conley's comfort was the priority through all of this, and there have been recent times that he has been inconsolable and in distress, leading us to worry that something more serious was wrong again. There are so many things happening in his body right now, making it really difficult to pinpoint what the symptoms represent. Therefore, as a result, when symptoms present, such as inconsolable crying and abdominal distress, there are several tests done to see if he has something more serious occuring. For example, on Monday, while it was a very exciting day for everybody to come back to work and see Conley awake and smiling, he also presented with several symptoms that made us worried he was bleeding in his belly again. But not many people knew this. It was hard for me to wrap my head around all the people coming in so excited to see him off the breathing tube and awake while in the back of my head knowing that he might eventually be bleeding again. He had to do an x-ray, echocardiogram, and an ultrasound, in addition to tons of blood work, only to find out that he was just having severe gas. Talk about trauma. The presentation that my son had when he was bleeding out and needed emergency surgery looked the same as having gas?! If we were at home, I wouldn't be able to do all of these tests by myself to know if he is having gas or if he was bleeding. Most mothers would never think "oh, my son is bleeding in his belly" when actually they just have gas. Sigh. It sure was a rollercoaster. And while it seems easy to know it was gas in hindsight, even the doctors were terrified, which helped comfort my concern that I wasn't just crazy! Of course, I was so excited for everybody to see him awake and smiling, and breathing on his own, but I also had to worry about heading down the same path that we did just one week prior to this occasion.

There have been many positive steps for Conley these past few days. Obviously, the breathing tube came out and he's showing a range of affect again. He has also been switched back to his regular feeding regimen and off TPN (which is replacement nutrition if someone is unable to eat). He is back on regular hemodialysis instead of continuous CRT. He has started physical therapy and occupational therapy to help stimulate his muscles again. These are all huge steps for Conley. However, he continues to present with conflicting issues that are having specialists make decisions based on a risk/benefit scale. No decision is free of potential complications.

As I wrote before, after finding out about a potential clot obstructing blood flow to and from the heart, Conley was started on aggressive anticoagulants to not only help reduce the size of the clot, but also to prevent him from forming additional clots. Obviously, that led to serious internal bleeding and emergency surgery, almost costing him his life. During all this chaos, some genetic screening was done and it was found that Conley is a carrier for what is called Factor V Leiden Thrombiphilia, which is a genetic disorder of blood clotting. Basically, if put in situations such as surgery or blood transfusions (which he does often!), he has an increased propensity to clot, blocking blood flow to certain organs. This is a big deal since Conley is frequently on heparin during hemodialysis, which is a blood thinner/anticoagulant, so he does not clot when attempting to perform adequate dialysis. While it seems only necessary for him to be a medication in order to prevent clotting, the last time a more aggressive approach was used, he bled excessively. Given all the updated information, the hemotologist recommended that we use a continuous heparin drip which should hopefully prevent further clots without a significant increased risk of bleeding. We shall see. The heparin drip started last night.

I've had a lot of time to really sit down and contemplate the things we've experienced in the past few months. For most who know me, I am not a very religious person, though I'm not opposed to religion either. I am actually very open to understanding religion and having conversations about it. I believe everyone has their own coping methods and ways of comfort. Facing such a horrendous situation has made me really question the idea of prayer. I recently started going to the chapel, and before you get too excited about my intentions, let me tell you that part of me going there was to question the idea of prayer. I have wondered many times that if so many people are praying for Conley, then why do horrible things keep happening? What kind of person would continue putting a baby through such pain and suffering just to teach a lesson? On top of that, our experience of course has led many people to tell us they are praying for us, for Conley and for our situation. I think the hardest part of all the praying is that when people tell me they are praying for a certain outcome, and it does not happen, or it actually ends up the opposite, it almost feels like Conley (or us) are not worthy of the prayer and that we have somehow failed others or God in whatever lesson he is teaching us. And that has led Jonathan and I to become even more angry and seperate from the idea of prayer and God. For people who were sitting in the middle of the spectrum with regards to religion, there is this idea that prayer can help us move to a positive place and when that does not happen, it almost forces us the opposite way of not believing instead of reinforcing the idea that prayer works.

I don't mean to start controversy with this post, but I am just being honest about someone who is not religious and how religious messages can impact our ability to believe in a higher power. This the specifically why I have asked people to not pray for a certain outcome and to focus more on the process that we are experiencing as opposed to a specific road we should end up on. Each time I have gone to the chapel, I have asked for Conley's comfort and for him to suffer less, and have focused more on the process than on the outcome of our circumstances. It's almost like I had to truly accept the fact that my son may die in order for him to live. And let me tell you, there have been times that I thought he may die, but I hadn't really accepted his death. I wasn't ready, even last week. But this time, I really surrendered and understood that the prayer I had of his comfort and easing his pain may lead to his death. And I was genuinely "okay" with that. Although that would increase MY suffering, it would ease HIS pain. That's all I wanted. This made me realize that prayer should be selfless. You don't pray for the outcome you want or the result that would help you suffer less. You pray for the process regardless of the outcome. And then, you can be thankful for the process, instead of selfishly living in the outcome.

For those of you that are religious and turn to God for a way of getting through certain experiences, and you encounter someone like me who is not so sure, I ask that you contemplate how you present prayer and religion to them. I will gladly elaborate for those who are interested. To quote a good friend who is actually very much with God, "It's not fair that people say, just believe in God or give your situation to God...it's superficial and can be very short sighted. Hurtful even. It doesn't listen to the person who is experiencing the pain. It doesn't validate their feelings. It doesn't walk alongside them as we are called to do. Sit, be with them, love them, share in their emotions." Maybe my purpose in all of this is to help others understand that the way we speak about these topics has been somewhat lost...

I read an amazing blog the other day that pretty much captures exactly what I have been struggling with:
http://www.feelingsandfaith.net/not-everything-happens-for-a-reason/