Wednesday, November 10

We finally have results...

After 50 days from the moment we found out Mason had CF we finally have a direction. The direction in which we take will be made more clear on Monday the 15th of November when we meet with the CF team again. But the genetic counselor called yesterday to tell me that Mason's blood we sent out to California back on 9.21.10 finally came back with the second gene mutation. So the two mutations Mason has are 3659delC and S1251N. Never thought in a million years that I would be looking at two "words" with jumbled up numbers and letters would mean so much for our little guy. Basically what it comes down to is that he is classified as a "classic CF" patient. He does not have a severe form nor does he have a mild form...he's in the middle somewhere. The S1251N is a "very rare mutation" so they do not know much about how it will affect Mason over the years. The genetic counselor was able to tell me a little of what the plan will be but am more interested to hear it from the doctor first hand on Monday.

I would be lying if I said my heart didn't sink back to the place it landed when I first heard the news. I was starting to allow myself to think those thoughts that some had started to express that "maybe there is no second gene and that is why it is taking so long" to be true. I hate that I allowed myself to think that because it just brought everything back to this painful reality again. I know in time everything is going to just be routine..."our normal", and it is starting to, but right now it just seems so unfair and makes me angry and sad. It makes me angry that I constantly have to sanitize myself before holding/touching him, wondering if I cleaned my hands well enough. I hate that I cringe when someone I don't know, or even those we do know, come up and get "too close" or touch him, wondering what type of bugs they might pass onto him, and that those bugs might hospitalize him (even though they would do nothing to you or I). I hate that I have to worry and ask others if they are ill, have recently been ill, or if they smoke before even thinking about handing him over for them to hold. I worry that they are not telling me the truth. I hate that we already had to cancel plans because someone there "might be ill". I hate that this will happen so many more times in the future. I could go on and on with my list of worries. The list that people will, no doubt, tell me not to worry about, but they are not in our shoes. These shoes I wish no one had to fill. I know that these feelings will lessen as time goes by because it will become "our normal." But that is the exact reason why we must stay vigilant to keep our son safe so that he can have as much time on this earth as possible and healthy time on top of that. This is why we will have to remind others for years to come because people will forget or will just not understand our actions. I have joined some forums where I read the parents, grandparents, and people with CF echo these thoughts and that seems to help to know we are not alone in this fight. I know we are not alone. They echo thoughts of the life long worries imposed by this disease. They also bring hope. The hope for Mason to live life. For him to live a full life that will expose him to all the world has to offer...germs and all.

So, now that I have unloaded that little piece of my conscious, Mason is waking up from his slumber on my chest in the Moby Wrap. I look into those gorgeous baby blues and those worries fade away for a little while. How can they not? He is a handsome, smiling, loving, and sometimes stubborn boy who we would not trade for the world. He is ours.

1 comment:

Aunt Kris said...

Mason is truly blessed to have you both as parents. We keep him in our thoughts and prayers and will always be here to support and love all of you. We think he is one special boy and love his bright blue eyes and big smiles.