Knowing your limitations

Most of the posts I write here are for the most part factual and to the point, with a small amount of emotion thrown in at the end (so you'll know I'm really not a robot.) But it has been on my heart this week to write a more personal post and address one of the human aspects of this whole thing.

Rion probably will not ever be the same as he was before the seizure/surgery/radiation/chemotherapy. The social worker we met with this past week at Duke did a really good job of helping us see that it is unrealistic to expect the Old Rion back and instead we need to focus on finding the "new normal" for both of us.

I think it's human nature to try and get back to your normal routine as soon as you start feeling the slightest better after an injury or surgery. I know personally I've over done it when recovering from the flu and ended up delaying my recovery- I might have felt fine at the time but later I felt a million times worse and had to accept that I wasn't back to par yet. Rion has a bad habit of trying to jump back into things too quickly and ending up either in pain or over-exhausted.

If you can, try to imagine what Rion has been through physically and mentally over the past 2 months- even before surgery he suffered a pretty intense seizure & then started on and increased dosages of multiple strong medications. Since he has been recovering so well, sometimes it's hard for us to remember just how invasion the surgery was that he had: he had not only an incision in his skin, but also part of his skull removed (we saw the fracture on the MRI that was done this week.) That was just to get into the brain which was then touched, manipulated and cut; most people go their whole lives without having someone/something INSIDE of their skull, Rion spent 3 hours having his brain being operated on. The social worker explained that his brain is now bruised and swollen from the trauma it went through during surgery. My point being is that even though Rion may look and even feel ok, there is a lot of healing that has to take place before we know what he will be like now- the skull has to fuse back together, the swelling in his brain has to go down and the bruising from the surgery has to heal...and those are just the physical aspects of recovery.

We've also learned that Rion must also heal from the neurological damage that was caused by the seizure & surgery, these can also be exacerbated by the radiation therapy and chemotherapy that he is about to start on. Rion now suffers from attention deficit problems, expressive aphasia and some receptive aphasia (google it if you want to know more- but it refers to the speech problems he has,) and short term memory loss. What feels to Rion like a lack of concentration or confusion is actually a culmination of these 3 problems. He has to work extra hard to pay attention and communicate effectively, especially when there are multiple things going on at once ie carrying on a conversation while the TV is on and the dogs are barking. In order to talk on the phone he has to close him self off in a room where there are no other noises or distractions. As with the physical healing, there is no telling if or when this will get better.

I am sharing all of this with the hopes that everyone will understand a little better what exactly we are dealing with and going through. It's a struggle for Rion (as it would be with anyone) to try and return to some level of normalcy and familiarity but being held back by these physical and mental limitations. It leaves him feeling tired and frustrated that things aren't as easy as they were before and that he can't do as much. But this is just another aspect of having a brain tumor/cancer that must be accepted and worked through: accepting that Rion has limitations and learning to live within the new normal.

Please keep praying that God will continue to give us the patience to not rush back into our busy lives but take the time that is needed to heal Rion inside and out. As always you can e-mail me if you have any specific questions about what is going on and what we can expect to happen as far as recovery is concerned. We will also continue praying that God will help us accept the New Rion and be grateful that he is doing so well because we do realize it could be so much worse.

Emily