Friday, March 2, 2012


TRex asked me the other day if people could explode. I told him people could explode under the right circumstances, such as swallowing dynamite, but that he didn't need to worry about it. He accepted that answer and went on about his day.  I forgot about that interlude until I sat down at my desk today, thinking of the week that has just transpired. I couldn't hold it back any more and I wept, big fat air-gulping sobs. I had exploded.

I can't believe how much life has changed in the last week.

First, we had the Dancing Queen's annual IEP meeting. I don't know if you've ever made an IEP for your child or even know what it means, but it is emotionally draining and extraordinarily hard to think about accommodations that may be needed for the next year for your child.  You have to think about what will she need if she has another open heart surgery as you've been warned is possible. You have to think what happens if they can't operate. You are forced to think of the hardest things. And despite loads of preparation, I still crumbled into a ball during the meeting and cried.

After the IEP meeting, we got a message that TRex was upset at school. We called and he wanted to know why Rookie had to die. Then of course, the Mad Scientist and I had to put Rookie to sleep.

That was Friday.

Friday night, the Dancing Queen was up most of the night coughing and gagging. She started vomiting on Saturday. By Sunday, she couldn't keep anything down and refused to eat or drink.  On Monday, she ended up in the ER because of dehydration caused by a simple cold.

Tuesday, DQ was home, but still not eating or drinking and we debated about taking her back to the hospital as she just slept. TRex, upset by it all, took his fears out on a classmate and his teacher.

Wednesday, DQ still wasn't really eating or drinking much and wasn't peeing at all, yet she woke up with a swollen face, showing that her heart was not working properly.

Thursday, I got her to eat and drink a little. She went to the doctor and we learned she had lost half a pound due to her illness. When you only weigh 26 pounds to begin with, half a pound is huge!

Thursday, she peed once for the entire day. Just once.

Through it all, I was keenly afraid that I could lose her to a heart attack from dehydration.

DQ went back to school today, but only after she was up all night coughing and crying out in her sleep.

To top it off, with DQ sick, me working a ton, and the Mad Scientist sick, we have lost control over our house. It is so overwhelming. I need a week to throw everything away just to be able to breath in there, but I don't have a week. And we need to sell our house or rent it or get rid of it some way. I don't have the time to clean, let alone to talk to realtors and mortgage brokers.

Then throw in the "little" big things that are piling up. I have to find someone to watch TRex this summer when school is out. I don't even know where to begin. DQ needs to have her periodic abdominal ultrasound to check for kidney cancer. I haven't had the chance to look for the script, let alone find a morning to take her.

I have been so worried about DQ's noticeable cardiac symptoms as well. She was supposed to see her cardiologist this week, but couldn't because she was sick. So, once again, we wait and worry. 
Of course, it was this week that I really thought about how bad I have been feeling for so long and how much worse I am getting.  I feel ill every day of my life. A change needs to be made. I know what that change is, but I need help to make it because the change is so hard. I don't have will power. Yet, I have no help, and am faced with daunting temptation everywhere I turn. It is too much to do alone, but I have no one to help me. And since I can't do it alone, it won't happen. It will only get worse.

I am so overwhelmed. And sick. And slow.

It is no wonder I exploded.

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Having a child with a CHD is like being given an extra sense---the true ability to appreciate life. Each breath, each hug, each meal is a blessing when you've watched your child live off a ventilator, trapped in an ICU bed, being fed through a tube. Each minute is a miracle when you've watched your child almost die and come back to you.
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