Thursday, November 11, 2010


Breathing. It's something I can't seem to do much of anymore. I am sitting here trying to fully grasp everything that has happened over the last 4 months and I truly cannot believe it.

This week was certainly no different. I am sure you have all heard about the "fight or flight response" at one time or another. My family is living in that constant state every day. I have been doing alot of reading about it as I know it must be detrimental....but what do you do about it? It’s important to learn how to recognize when your stress levels are out of control. The most dangerous thing about stress is how easily it can creep up on you. You get used to it. It starts to feels familiar – even normal. You don’t notice how much it’s affecting you, even as it takes a heavy toll. I am used to it, and have been for way to long. What is even scarier is that if I am feeling this way, how is Brigitte feeling? How are the other kids feeling about all of this?

I should let you know, that Brigitte was again rushed to Boston on Tuesday and underwent another emergency surgery. I had some trouble with her pump and some occlusion alarms in the early morning hours on Tuesday. Think like 2 or 3am. Yeah, makes sleeping impossible. I finally decided to shut the damn thing off because not only was I not sleeping, but Brigitte wasn't either. I flushed her line with saline and swore I heard a little "pop." WTF!!!! I checked her site, inspected the line and didn't see anything. I went back to bed. She woke around 7 and was crying a bit. At this point, you can imagine the chaos that takes place trying to get 4 kids up and ready for school. I got breakfast for the kids, got them all dressed and was ready for Brigitte. Let's just say her morning routine is a little less than pleasant. That's putting it mildly. She is a major witch in the morning, so I leave her for last. As I was attempting to get her dressed, I noticed that her dressing was red. At first I thought it looked like fleece stuck to her (she was wearing a fleece pajama set) but quickly realized that her PJ's weren't red and what I was looking at was clearly blood. Add to that, Jake and Sean both saw it at the same time and started freaking out. It took all I could to get them to hang up the phone fast enough as they had already dialed 91...and you know what would have happened next. I could see she wasn't actively bleeding so I knew that an ambulance ride would have actually wasted valuable time. In our town, they are not allowed to cross state lines, so we would have been taken to the local ED, stabalized, then transported to Boston. I knew that pop I thought I had heard was real and that we were already beyond the 4hr mark of blood starting to clot. So we needed to get to Boston fast. That's kind of funny, because it was rush hour traffic time, and Brenna was home sick. So she went with my dad and Brigitte and I made our way to the city.

It turns out that her line had totally blown and she was headed to the OR again. The surgery itself lasted about 3 hours. This time instead of a broviac CVL being placed, we went with a port. Although we aren't able to get the full benefits of it right now since she is on TPN 7 days a week, we are optimistic that at some time she will be able to have some days off and be deaccessed giving her the ability to bathe, swim...and just not be bothered. We are a long way from that, though.

So, as I said, we live in a constant state of "what's next?" It is becoming more and more difficult to just live normally. Clearly, this is affecting Brigitte more than anyone can imagine. She is having tremendous difficulty in school because of her anxiety. This poor child can't even wake up on a Tuesday and get excited about school and her friends because just when she thinks things are ok, she is in the hospital with a mask covering her face as she is forced into sleep to be cut open again, only to wake up with another scar and one more piece of plastic stuck inside her little body. One more thing to make her so unlike most little four year olds. She is being admitted again next week for all of her testing, and tonight I have had multiple email exchanges with her doctors who are also concerned about her emotional well-being. We have come to the conclusion that a psychological consult team will be part of every admission to deal with her ongoing anxiety. My poor baby is only four years old and will now have a TEAM of psych doctors. This just isn't right on so many levels.

I have to be honest and tell you that I am a very angry person right now. I am angry on so many levels. I am angry that this happens to Brigitte and Sean. I am angry that there isn't a damn thing I can do to make any of it go away. I am starting to get really mad at family and friends who don't realize that my life is nothing like theirs and they just don't get that. I dread the holidays and having to put on my happy face. It makes pretending all that much worse. I know a while back I promised a post on all the good things that are happening, but right now, I can't seem to find anything. I am taking a few days to sit here and feel bad for myself, my kids, my husband, my marriage. Next week, because it is Thanksgiving, I will pull myself up by my bootstraps and be happy for all that I do have in my life.....which I do know is alot. But right now, I just want to be mad.

For all my other mom friends who have children with special medical needs or worse, have lost your children. It's ok. It's ok to be mad, really mad.

What's not ok is to stay mad.


  1. You're right. We are grateful and we are mad.

    It's also okay to grieve. It's okay to mourn the life you *should* have had. Okay to mourn for what your children - Brigitte and Sean and everyone - *should* have had.

    We expect and want ourselves to be joyful and appreciate what we have but we can't and shouldn't always expect to be able to. It's pretty near impossible to paste on the happy face when the entire world around you doesn't get it and puts on the pressure to pretend all is well for the comfort of others.

    If I was nearby, I'd meet you wherever you are with a big mug of tea.

  2. Hi Shannon

    I am in tears right now, after reading your post.. Tears for you, Brigge, Sean, your family, and tears for me, also because although Ava and our family have not gone through even half of what you have, I know what it feels like to be MAD. Mad that people just don't get it, mad that when Ava was a baby and was going through that crap, that I didn't get to experience all the joy of having a new baby. . I get it. I am here for you as you know, as so many of us are.
    I will text you soon and see if we can set up a time even just for tea.(or something a little stronger).
    remember the song you posted. :The life thats chosen me..

    Shannon, I understand.. I am not deserting you, I am not ignoring you, I am your friend. I am showing compasion, NOT pitty..

    WE are parents just like all the others but we both have special needs.. I love you Shannon.. whatever you need I am here for you..! FB. or phoneme to chat to bitch to just say what you need to to someone who does get it..