Wednesday, June 9, 2010


Sorry, again for the delays in posting. I really am going to try to be better about it. Right now, I have posters to print, a house to clean, laundry to fold, and bags to pack. I have to get all this done in the next 36hours or life as we know it begins back again at our second home, Boston Children's Hospital. So, having said all that, like I said, I am trying to get better about blogging, but I don't know when to fit it in.

Oh, I glazed over the "back at CHB again part"....yes, that is my brain trying to ignore it. Can't though....its happening. Friday morning we have to be in bright and early. She is having another MRI of her brain. Due to some recent developments...well, not so recent, just recent that someone has decided to listen to that "crazy mother with the 4 kids!!" They have a bed booked for her to spend the night due to the length of the scan and the amount of images they want to get. It seems as if "we may have greatly underestimated the damage to her brain" (neuro's words, not mine)...and he wants this done ASAP. I might also add that he is working her up with a strong suspicion for Mitochondrial Disease and the possiblity that she may have suffered a stroke. Hence the title of this entry...FEAR.

I am usually the one giving all the comforting words to all the family and friends when they hear the scary words that often come out of my mouth about Brigitte. Don't GOOGLE it. Don't read about it. Don't worry, she'll be fine.

I'm still doing all of these things, except the one person who is usually telling me not to do those things, the one person who keeps this semi-calm person from getting themselves worked up before we know answers, the one person who always tells me "Don't worry until I get worried," is now worried himself. So the fear sets in.

I think people often forget that Brigitte's illnesses....many of which we don't know the full extent of yet, are life-threatening. Those that aren't, have the potential to be life-altering. We live in a constant state of "What if?" and "When?" Just when we think that things settle down and we can begin to plan, they change again. Often these fears go unspoken. Nobody wants to ask the questions. They just look at you, smile and say "well, at least she's cute!" This is less than helpful. We don't get statistics or guesses because there isn't another Brigitte to compare to. She is her own little mess.

So it leaves us worrying. The more and more people diagnose her with things, the more fear I have. I'd be lying if I said I wasn't afraid she might die. She might. I will bring her back into that hospital on Friday morning, let them intubate her for the "I can't even count that high" time.....and we will sit and wait. Hoping she doesn't come out with vocal cord damage ( a risk of intubation....its gotta happen sometime, right?) Hoping she tolerates the procedure. Hoping we don't get devastating news on Tuesday when we go back for the results.

We live in a constant state of fear. Some days are easier than others. Most suck. Some may say this is all very dramatic. Might be. I can tell you that those who think that, have never endured their child being sick. Really sick. It doesn't leave you. You will never understand it no matter how hard you try.

Sean and I went on his Field Trip to Squam Lake last week. The pollen had been terrible in this area for a few days, and then the smoke from the fires in Quebec moved in. We ended up having to leave early because he was having alot of trouble breathing. He's my asthma and allergy guy for those of you who don't know. Anyways, his teacher had the kids write Thank You's to the chaperones. This was Sean's:

Dear Mom,

Thank you for coming on my field trip with me. The show was cool. That was the best field trip ever. I wish we could stay for the rest of it. But I was sick but not that sick like Brigitte.

Your son Sean

He is only 6 years old. This is not the first time he has written about Brigitte and how sick she is. He obsesses about dying. Where people are buried. Does it hurt? He often says "When Brigitte dies, will I get to see her again?" He thinks she's going to die. This breaks my heart. This makes me terribly afraid. I am often more afraid of how this all affects them more than it does Brigitte. Physical scars are one thing, but emotional ones are completely different. You should see him with her. He literally smothers her each time he hugs her. It's as if he is afraid that he can't get enough of her. I feel that way sometimes too. Look for a post soon of some pictures we had done on Brigge's trip. Your heart will smile when you see how much love these kids all have for each other!

Don't get me wrong, I don't let this fear consume me. We make the most of every single day. We enjoy the good when it is good....and always say that the worst could be worse. We are not sitting by letting all the good pass us by. Its just that the bad never leaves us.......sometimes this is a blessing. It allows us to really soak up the good and appreciate it.

So what is the moral of this story? I don't really know. I guess it is that writing helps with our fears. If we keep them all bottled up inside they grow and grow. It helps me to write all of my crazy stuff here for all of you to read. It helps Sean tell a story about how he is really feeling. I think you can learn alot about people and what they write. We are all afraid of something. What are you afraid of? Do you talk about it? Do you write it down?

You might want to. It really helps.

1 comment:

  1. Shannon,

    Boy do I hear you about dying - and I'm not surprised you didn't get a lot of comments; this isn't a happy subject.

    I don't know if you've gotten there yet in the book but the chapter on facing death (with hope) was posted on a blog yesterday, so people can read it whether or not they get the book. It's here.

    Your heartfelt posts are clear. Good job.