Wednesday, June 8, 2011

Could it be Me?

I'm still sick. The cough has pretty much dissipated and I don't feel like I'm having a hard time breathing (although my doctor begs to differ). Friday marks the end of week 4 of this whooping cough. And today marks day 7 off of work in a row for me. You read it correctly, day 7 in a row!

Last Wednesday, I started to get really bad again and my doctor changed up the meds, so I stayed home Thursday and Friday to rest. I was petrified that I was heading straight for the hospital. Saturday, I felt great. Almost had my voice back and I felt I had turned a corner. Sunday, I felt pretty well in the morning too (except for a cough I had at the exact moment I took a huge swig of coffee--let's just say the Mad Scientist ended up sprayed in coffee and I was mortified as the entire restaurant stared at me).

We came home from breakfast and I weeded a little and planted some flower seeds. Then it hit me. I had done way too much, so I took a nap. After the 3 hour nap, my left lung felt like it was being stabbed repeatedly. I had had lung pain throughout this illness, but it had intensified so bad that I couldn't cough or breathe or let the kids hug me without a yelp. At 1:00 am Monday morning, I decided it was too much. I felt for certain I'd be in the hospital (and not uncertain calling 911 wouldn't be an option). I told the Mad Scientist he was not going to work the next day and he had to drive me to the doctor's office or the hospital. It was impossible for me to drive myself.

It turns out, I have pleurisy. The infection in my lungs (presumably whooping cough) has inflamed the membranes of my left lung, causing them to scratch against each other in a most painful way. The goal is to kill this infection finally and prevent any long-term damage to my lung membranes. I am totally feeling like the Dancing Queen these days. I am taking 10 medications at 4 different times of the day (and I am on my fourth type of antibiotic). So far, it seems to be working. My pain has diminished enough that I feel able to drive. I haven't heard any of the scratching of my lung membranes that I had been hearing all of the time for the last couple of weeks. So, that is good. I still have to rest and being in the heat and humidity is really hard on me, but I'm making it.

And all of this makes me wonder again: Could it be me? Could I be the cause of my sweet baby's horrible conditions? Do I have a micro-deletion of chromosome 22q11.2? This illness reminded me that I have the same immune deficiency as DQ. I was born with a heart murmur, but do not have any heart defects. I have the crazy, overlapping toes that she has and so many 22q kids have. I am very short (but so is everyone in my family). I had the crazy ear problems she suffers from. Is it all just a coincidence or something more?

I've played this game in my head so many times. I rationally decided years ago that it just doesn't matter. Even if I have the deletion, I didn't know about it before I was pregnant and there is nothing my diagnosis could do to help DQ. Would it just make her angry to know I did this to her? Or would it give her inspiration to know an adult can thrive? Would it just muddy the waters? Would it finally give me someone/something to blame? Would that do any of us any good? Would she hate me because of it? Would I hate myself?

And so I grapple with the question: Should I finally be tested?


  1. What would you do if the test was pos/neg? Will actually knowing cause you to change anything that you are currently doing? I have not been 'formally' diagnosed on the autism spectrum, but SO MANY of the quirks that both of my sons have I also have. I look at myself and see signs that are SO autism red flags, but that were not caught when I was younger. Of course, it's debatable on whether or not autism is genetic. In the case of my kids I have to say that yes it is. But I don't think knowing that I was a high functioning autistic would have changed anything, and it doesn't change how I deal with my children, so I don't spend the energy worrying about it. There's so much else to worry about!! Like will they also inherit my other health problems? If you are planning to have more kids and knowing the test result will bear on that, then by all means get tested. But don't do it if the only thing that will happen is that it will cause more stress.

  2. First, I'm sorry you have been so sick. I hope you are feeling better soon.

    I understand your questionin g the basis of the deletion. In our case, it is extremely unlikely that either my husband or I have the same deletion as our son (Williams syndrome - 7q11.23) but we DO plan to have ourselves tested because we are considering future children. The decision to test is a very personal one. I wish I could offer more words of advice - instead, you have my support for whatever you decide is best for your family! (((hugs)))

  3. If it will give you peace of mind, then get tested. If it's something you need to know for your future grandchildren's sake, then get tested. If it will serve no real purpose other than allowing you to punish yourself for something you have zero control over, don't get tested.

    I don't think there is even a question about DQ being angry. If you find out you have it, will you be angry with YOUR parents?

  4. Good advice in the comments! I'll only add that, no matter whether you get tested or not--or, whether you have the micro-deletion--you have given life to a delightful child.

    I hope you are feeling better soon!!!!!



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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