Monday, August 23, 2010

Sean and his Chiari

Wow, guys!! It really has been a long time, hasn't it!! So much for me being better about this, huh?!?!?

Well another day, another diagnois. This time, another child.

We recently found out that Sean (my 6 year old) has a Type 1 Chiari Malformation. He will be undergoing major brain surgery this Friday at Children's Hospital in Boston.

Shock and disbelief do not do our feelings justice. We had just started to get ourselves on a good path, and then WHAM! Out of the blue this happens.

Bryan and I had a long conversation last night about how we are truly feeling about this. I came to the conclusion, that honestly, I just don't know how to feel. When it comes down to it, I am so angry. Angrier than I have ever been about anything that Brigitte has gone through. This in itself, is leaving me so angry. Why am I not more upset about things that Brigitte goes through? Have we just learned to deal with the fact that this is her life and none of it is such a big deal anymore? How sad is that for her? Or is it that we just have never realized the full impact all of this has on her on a daily basis because she hasn't been old enough or verbal enough to tell us how she really feels, unlike Sean?

Sean is surely telling us how he feels. He is so angry. He is so sad. He is so scared. Why shouldn't he be? He is about to endure one of the worst things in his lifetime.

My question is why does this keep happening to us? Why my kids? Does it make me a bad person to question these things? I continue to wonder what I have done that someone feels so strongly in punishing my children for something I have done. Surely, they have done nothing to deserve this. Maybe I am looking at it from the wrong angle. I know that I should be looking at it from the perspective that someone is using me to show the world how it should be done. That you can get through trials and tribulations with grace and dignity. That you should always look at things knowing it could always be worse. We are the family that comes together and just does what needs to be done whatever the days calling may be. I keep telling myself that there has got to be some wonderful thing that is going to happen to us. Maybe we'll hit the lottery? Maybe we'll be the millionth customer at Hannaford and win a years worth of free groceries? This is what I tell myself when I walk into my upstairs bathroom that still doesn't have a sink after I broke it 3 years ago with my hair dryer....I put a big hole in the porcelain. This is what I tell myself when Sean and Brigitte sneeze and cough all night because of the rugs that so desperately need replacing in our bedrooms. This is what I tell myself when Wells Fargo wants 10k for our new mortgage modification that I just don't have. This is what I tell myself when Bryan works his 3rd 16hr shift of the week and is only going to get 3 hours of sleep for the umpteenth time this month.

Then I remind myself that complaining and wishing doesn't make the present any easier to deal with. That we just have to get up another day and keep doing what we are doing. That my kids are smart, beautiful, honest, respectful, loving and more importantly, ALIVE. That we are doing a good job despite how hard we struggle. That once again we will get through this trial and be better off on the other end.

At the end of the day, it really is hard to believe in all of that. I have to though, its what keeps me going.

Pray for Sean!!!

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