One Appointment... One Day... One Hour... DESTINY???

It has been a crazy week. A week of answers; one we already knew, one we thought we knew and one that has me scared. What we learn in the next week may bring us closer to understanding why our son is so "unique" but at the same time may determine his destiny.

Thinking back to every test Caden has ever had, I can rarely remember a time we received anything but a "normal" result. Now the parent of any typical, healthy child would be relieved with not finding anything but as the parents of a boy like no other, who is constantly sick and no one knows why...answers can, in some way, bring relief. We are often frustrated with all the poking and prodding our son goes through just to find there is nothing "wrong". In fact, according to his tests (with the exception of his brain MRI), Caden should be a "typical" four year old.

So when I got the call from Caden's neurologist last week with the results of his genetic study, I was expecting to hear the same thing..."The test came back normal". But that is not what I heard. There was, in fact, a genetic mutation that may be why Caden has many of the issues he has. I am not yet ready to go into detail on what we found out. I want to wait until we sit down and thoroughly discuss the results with the neurologist. But we may have an answer.

Click to see a short video on Whole Exome Sequencing

I thought this would bring the relief I was in dire need of; but instead my heart sank. Not only for what may happen with Caden but with Ethan as well. Caden and Ethan are identical twins so with any genetic mutation passed down from us, Ethan has a good chance of having it as well. 

This was the test I so desperately needed to come back "normal" and it didn't. 

So as soon as I got off the phone with the doctor, I jumped on the internet. Now I know that I shouldn't do that, but seriously, any parent would do the same thing. You see when the doctor told me about the mutation I wasn't initially concerned. It seemed to make sense in regards to his symptoms. But when I started to read about what the mutation could cause, I began to cry. It seems to be much worse than I initially thought. 

So here I am anxiously, yet cautiously, waiting for this appointment. The appointment that may determine, not one, but both of my son's fates. I am a mess.

It is hard not to think the worse. It is hard not to lose faith. My mind is spinning in circles trying to make sense of it all; trying to get a grip on things. As much as I need this appointment to be here, I never want it to come. Yes...maybe I will find out it is not so bad; that the internet doesn't know what they are talking about. Or maybe, it will be the worst possible scenario.  At least for now, I can hold on to what little hope I have left. One appointment....... on one day...... within one hour...... DESTINY.

I hope my mind and gut are wrong. I hope I am embarrassed by the outcome. I hope I have to apologize to my readers who may now be worrying right along with me.

PLEASE God...let me be wrong.