All of the paths I started down and dreams I had and questions I answered about what I wanted to be when I grew up, "cancer mom" was never a part of any of it. I wanted to work for National Geographic and travel the world. Or be a news correspondent for NBC and shed light on important world issues. And on bad days, I just wanted to go live in a picturesque New England town and have a quiet life. Those where my dreams. Not this. This isn't a dream anyone has. It is a hell they live through and sometimes it is also a gift. It is a painful gift, but one in which you get to see a beauty that most of the world does not. You get to see the beauty in a little boy rolling his IV pole to the bathroom and when his mother calls out asking if he needs help, he replies, "no, I've got this" with more pride then most people muster during an entire day. There is beauty in the pain for sure. Unfortunately the beauty doesn't make this life easier, it just gives you a reason to smile along the way.
George and I have done well not to go crazy thus far, but with all of these respiratory issues piling up on top of everything else we are so paranoid it is insane! At first it was more George, but now it is me. Our pre-Christmas hospital visit seems to have done me in. There is time to fight cancer, but not these respiratory issues. If he is having a problem, that is it. Right then and there. How do you live with these respiratory issues becoming more and more common? It is starting to feel like we are being tortured with the possibility of Clayton's death. You know the way a cat plays with its prey; thats how things are starting to feel. First cancer and now respiratory issues that could occur and be fatal at any time. We are definitely having problems with everything right now; more so than we have at any other time. The combination of everything just feels like too much. And how in the hec can we expect for anyone else to take on that same responsibility when they watch Clayton for us. Thank god my mother recognized the beginnings of croup and contacted me immediately last time. For now we are trying to figure out how we go on this way. It should be fine when we fix his back, but what do we do in the mean time? Well we are going to see an ENT Wednesday; I guess that's something. All of this sounds kind of odd I'm sure. I don't know how to put this mess of feelings into words because it is all so complicated. I've tried to put it in words for days and just haven't been able to. Too much to worry about. Cancer, scoliosis, respiratory, developmental, speech, kidney, bladder, relapse...I'm going to be gray by the time I'm thirty. Seriously, that is just Clayton stuff. Then just like everyone else, we worry about making a living, paying bills, staying afloat...My anxiety medication might need to go from as needed to daily; focusing on other things is only getting me so far these days....
Like right now Clayton still has a cough. It has lingered ever since his croup episode before Christmas. He also looks as though he is getting circles under his eyes. Circles and flu-like symptoms can be signs of neuroblastoma. Or it could just mean he has a cold and is tired. The problem is its hard to know which one. This morning we actually went to the ER because he seemed to have a croup episode coming on. We did all of our things to do here at home (nebulizer with steroids and albuterol), but it seemed best to head to the ER just in case. In five minutes he went from sounding so-so to horrible so we rushed out the door and then after we walked out the door to the car, you couldn't even hear him anymore. The night air seemed to do the trick. Back in the day we would have been comfortable with that, but these days things seem to get so severe so fast that we still went on to the ER not knowing what to expect. He was fine from there on out and we were home in about two and half hours. It is hard to live each day with this kind of fear. I truly don't know how this is going to keep working.
Making matters worse, I found out one of my sweet babies, Abigail, relapsed. I know the odds with this cancer and I know how possible it is to relapse, but for some reason it just doesn't make sense to me. She was "suppose" to be in remission like Clayton. She is "suppose" to be OK. One more thing to jerk me back to reality. Nothing is like it is "suppose" to be. Please pray for Abigail and her family.
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