On All Things Charlie

I haven't written in a while because honestly sometimes I just like to keep my thoughts to myself and focus on Charlie. My mind is constantly in a whirlwind and I have such a hard time plucking specific thought strands out and putting them into words that make sense.

We made it through Christmas and we made it through the New Year. It's 2013 and our Journey with Charlie and his conditions started in July 2012. We have more answers now than we did back then but we are still left with so many unknowns. We hear "I don't know" so often that I don't even really understand what those words mean anymore!

Charlie was scheduled for an MRI but at the last minute over fears from his issues with anesthesia (issues is putting it lightly he stops breathing) they cancelled it. They did a quick flash MRI (meaning they swaddled him and took really quick photos of his brain for his neurosurgeon and pulled him out before he could fuss. It wasn't anything that his neurologist can use but it did give a clear picture to his Neurosurgeon. What we can see is that his ventricles are almost normal sized (as normal as they ever will be that is) and there is no longer fluid leaking into his brain. All good things. As for his neurologist we met with him and got more "I don't knows". Charlie has abnormal brain structures caused by his genetic mutation and we have no idea how any of it will ever affect him. We were hoping to get some solid answers from the MRI but now we are waiting until later to do an MRI to see if we can get an idea of whether or not he suffers from any brain damage (from his brain bleed at birth, from his hydrocephalus etc) and if we can get a clear idea of what his development may be like.

Charlie had a neurodevelopmental evaluation this week. We heard once again "we don't know". We don't know if he will ever walk, if he will ever do math, if he will ever go to school, if he will be some evil super genius, no one knows anything. It's so funny that we waited so long for answers and when we got the answer of "CBL Genetic Mutation" it followed with "but we don't know anything about this because he's the only one with it".

On the cancer front we are still hearing "we don't know". We don't know if he will survive, we don't know if he needs treatment, we don't know anything. From what I've been reading if he has treatment then he is at risk of all kinds of side effects & secondary cancers plus relapse. If he doesn't receive treatment he is still at risk for other cancers and either way he most likely has a shortened time span. Also that he will never be considered cured. He will have no evidence of disease but he will never be cured. This is a lifelong journey that we are on no matter how long the life is.

I'm not sure which was more gut wrenching to hear "may never walk" or "shortened life span". Both aren't easy to hear. It's not the end of the world if he doesn't walk but it's hard hearing over and over all these things that are wrong and that may happen or may never happen. I love Charlie and I don't regret any part of him but it's hard knowing how hard of a road he has ahead of him. It's even harder knowing that he may never be able to understand. He may never develop enough to grasp the concept of what is happening and what is going on.

I think a lot of people have started to sort of...move on when it comes to Charlie. I no longer get constant messages asking for updates or people constantly worried. I think it has a lot to do with how well Charlie looks. He looks like a happy and healthy baby. Which as far a the happy goes he is. You just can't see everything that is going on inside of him. The Cancer that lays within his bone marrow, the low platelets, the high white blood cell count. You can't see the enlarged spleen and liver. It's easy to forget and its easy to move on. There are days where I can almost forget what we are dealing with and I can just enjoy Charlie.

So here we are. It's 2013 we may be closer to having some answers but it all still feels so far away. I still feel as helpless and as in the dark as I felt in July 2012 when the ultrasound technician handed me a towel to wipe off my belly and said "there are some complications you need to immediately proceed to the hospital for a different ultrasound, I can't give you any details". I'm not even sure how to act anymore. I don't know how to be around people I don't know how to carry on conversations. I just feel so dark and alone inside.

I'm trying to enjoy whatever time we have with Charlie whether it's 100 years or 100 days but it's so hard to feel like there is some sort of mythical expiration date on the time that we have with him. It's also even harder to think of all the things we may face down the line. Like acquiring a wheelchair, like I know how to go about that? Our house is not wheelchair capable how do you go about that? I guess when it comes to that point we will just figure it out like we have been doing all these months.