Thursday, July 30, 2015

What if?

In the morning on the day we were about to learn of the cause of Sonya's seizures, my mother walked into my bedroom with her eye shadow case in one hand and the brush in the other.  She looked at me and said "You told me if you knew the cause of Sonya's seizures you would be fine, that you just needed to know what you were dealing with, right?" My reply, "Yes, I just need to know", and she said "Okay, then soon you will know".

The first two weeks after we found out were pretty grim over here.  Sam and I both handled the information in different ways, as two different people with different personalities and different upbringings tend to do.  Me...I am the type that once I learn of something, I make a plan, follow the plan, and move on...I don't sit around dwelling, and I don't try and change things.  For me...Sonya has a mutation on her CDKL5 gene, great we know this is why she is having seizures, now let's move on.  As for Sam...well he is a fixer.  I think a lot of guys can relate to that.

So here we are...two people dealing with the same obstacle in different ways.  Neither one of us in my opinion is "right" or "wrong" for how we are handling things.  I personally find it "therapeutic" to spend my time diving into therapies and working on making Sonya reach her fullest potential.  I find each session to be rewarding in its own way, and I find that it makes me feel like I am actually doing something.  I cannot control the situation, this I know...I won't even begin to fool myself into thinking I can, so providing opportunities for Sonya to flourish is my perogative.  Sam finds it therapeutic to research countless articles, speak with parents of other kiddos with CDKL5 mutations, find out what drug trials are around if any.  He continues to see if he will be the one who can find a possible might be SOLUTION.

Yesterday Sam and I began our typical evening discussion of all things CDKL5.  We were talking about how Sam trying to find cures is great but in my opinion I like to work on the here and now...the current situation, not to the "dreamland".  He wants to focus on the future because what if there is a cure, what if he is a necessary component, a vital piece of the puzzle in solving CDKL5 and that is why Sonya was diagnosed.  So we continued our discussion and it led to the following.

"Nothing in life comes risk free.  Hypothetically speaking...a cure is found for CDKL5 and with this cure Sonya will have an increased QUALITY of life far better than anything she will have with all the therapies in the world but we are told, "Sonya will be cured but the side effect of the drug is that it decreases her lifespan....

IS IT WORTH IT?  WOULD YOU DO IT?"