This post is adapted from a post I did on May 21, 2010 on the Dancing Queen's carepage. I've been thinking about it a lot lately. I started this blog because posts like the one below were too much for the carepage. After all, the primary purpose of the carepage was simply to let friends and family know how DQ was doing. It was only after writing the updates for months and months that I realized the catharsis I would experience with each post. As things got more and more real on the carepage (i.e., less cheery), I would get fewer comments from friends and family, but lots more comments from heart moms. Unfortunately, people in my "real" life didn't like to hear my fears or anger at the situation we were dealt, so I stopped putting it in the carepage. Then the blog was born because I missed the catharsis. For me, this blog is merely an extension of the carepage, but most of you do not know the hundreds and hundreds of posts I did for the three years preceded this blog, so I'm giving you a glimpse with this post below. For those of you have read it, I apologize for the duplication.
May 10, 2010
When I was a little girl, I was in a car accident in the mountains of Tennessee. I was the in back seat with my sister, my grandfather was driving, and grandma was in the passenger seat. It was raining so hard that the car stalled in the middle of the road. We couldn't see anything for the rain. Then I heard it, the screech of a car's tires. I knew we were going to be hit and I waited for the impact. It seemed to take forever even though it was seconds at most. I remember that moment. To this day, I can hear the screech of the tires and then the feel of the rain on me because the back window had broken. The trunk was in the backseat with my sister and I. The front seat had fallen backward at us. They had to use the jaws of life to cut open the door to get the Editor and I out. We were all fine. Seat belts saved our lives.
That is how my life feels these days. I'm constantly in that moment just before the crash, but I don't know if I'm wearing a seat belt this time. I brace myself each morning as I open the bedroom door to the kids' room, hoping that everything will be fine, but always knowing that reality may be running me over in the next second. My daughter is very sick. She is not healed and she won't be. She suffers from diseases of which there are no cure. We still have hope that she will begin to feel some relief from her symptoms, but the reality is that she may not get any better than she is today and likely will get worse. She will have good days and she will have awful days. I am prepared for this and I expect it. The hard part now, is figuring out where we fit in broader society knowing what we know.
The life we now live is much different than anything I knew a couple of years ago. My peer group consists of heart moms, moms of kids with pulmonary hypertension, moms of kids with DiGeorge's Syndrome, and moms of kids with all of the above. In my peer group, I learn of the death of many children, children for whom I have grown to care. With each passing, I break a little inside. Many people from my other world wonder why I would want to part of this group. My answer is simple: they understand. It is important to belong to a group of people who understand your life, who knows that there may not be a cure, there may never be days without problems, but that sometimes all you want is to know is that you are not alone.
As I've entered this new world, my perspective has changed. I now know there is nothing that you can say to someone facing their worst nightmare, except to let them know that you are there for them. I have experienced the joy when a miracle takes place because they do. The hard part of this is that while my perspective has changed, the majority of the world hasn't. I find it very difficult to answer the question "How is the Dancing Queen?" Many times, I answer that she is not in the hospital or she is good for DQ. People outside of my new world don't want to know that we've upped her diuretics again because her heart is leaking more, that she tires easily, that any virus or high fever could kill her if we don't catch it quickly enough. The Mad Scientist says that I still paint a rosy picture on the carepage, even though it is not as rosy as my initial posts. I want everything to be okay, but it's not.
Since DQ has been released from the hospital, she has had a rough time. None of the antibiotics have worked. Whenever her body gets a little bit down, she ceases to eat and her face swells up. The swelling is caused by her heart working too hard and the blood being pushed the wrong way because of it. When we get her "healthy" again, even for a day, we know she can easily be back down again the next. So, I'll wait outside her door and brace myself before entering because I never know whether I'll get hit.
Please keep in mind that this post was written at a much darker time. This was before the Dancing Queen's last open heart surgery, before there was any thought she could improve. You may ask why I am posting this then. The answer is because it is still a huge part of who we are and I fall into this place frequently even if she has improved. And most of it remains true today. I ended it to reflect more of a current status then the one that was originally included. I have to admit, not much was different, except now we have reached the point where antibiotics don't work. We didn't have that problem a year ago.