Tuesday, March 29, 2011


I have been trying to hide from reality the last couple of days and instead it has been smacking upside the head over and over again. The Dancing Queen has not been well. Her ears have been bursting. She has been crying whenever she sleeps and blood and gunk has been oozing out of her ears, nose, and down her throat. That was our weekend. Add disappointing the kids, throw in professional worries, and you start to get where I have been. Oh yeah, and DQ had to be put on antibiotics again. She made it almost a week off of them this time. It took the doctor longer to figure out which antibiotic to give than the rest of the appointment combined. I seriously hope her immunologist starts her on a better treatment soon. It is so frustrating.

So, all I wanted to do the last couple of days was hide. In all honesty, that is what I want to do whenever life gets too real. It's not like I asked to be the mom of a special needs child. The one hope the Mad Scientist and I had when we were pregnant is for healthy children. While I always said I would unconditionally accept a special needs child into my life and meant it, I didn't really think it would happen. This was not the life I had planned.

My life is so much better than I could have ever imagined on most every day.  But days like the last couple make me wonder how to do it all. What do you do when your baby cries all night long from pain, but upon waking she says nothing is wrong? And you know why she says nothing is wrong is because she is so accustomed to pain that when awake she doesn't realize her agony? How do you get medical staff to understand that ear tube surgery may be routine for kids and can usually wait a month, but my child's ears will burst repeatedly if not taken care of sooner (which is why the doc ordered it sooner)?  And I'm not trying to pull priority just because this is my kid? Rupturing ear drums happened during the summer as well. Am I supposed to just accept the fact that every six months my daughter is going to have one month of her ears causing her extreme pain and rupturing over and over and over again because the tubes are falling out? How do you teach a child that the world is wonderful when they have been in pain every day?

I know that my daughter knows life is wonderful. She has taught me that more than anyone, but it is not fair. I learned that life was unfair many, many years ago, but it is so much harder having to teach my babies that lesson. I try to shield them, but there are no shields big enough. At ages 4.5 and 3, they know life can suck. This weekend, they got a big lesson in suckage. All I wanted to do was hide myself from their disappointment and anger in learning that lesson. Obviously, I couldn't. Now I hide in every other way.

At least I didn't totally melt down. I think that would have happened if I did have the counterattack of a date night with my hubby.  Even on the date, the Mad Scientist and I could not get past the stress. We never had the moment of release the tension we carry around at all times. The intensity of this weekend was too much. So, I'm still hiding.

(By the by, my previous post about fears of DQ's night cries turned out to be heart burn due to a change in her GERD meds, not ears at that time. The ear problems came back about 3 days after she stopped her last dose of antibiotics and a couple of days of good sleep after we started her back on her GERD meds at night. The best part was none of it was related to her heart.)


  1. I am sorry that DQ is dealing with all of this, but so happy to hear it wasn't her heart. My thoughts are with you and I am keeping my fingers crossed that you get the ears resolved very soon. Poor baby. Hugs from L.A.

  2. Thank you. DQ had her ear tube surgery this morning. Hopefully, it will be her answer.

  3. I totally go into hiding when I am under stress! Although, it's hard to hide as a mom, isn't it?

    Glad she had her surgery...hope things start heading in the right direction, soon.

  4. That's horrible. I can't imagine the heartbreak of watching your child in constant pain. There's nothing wrong with hiding out a while. I sometimes think we need to, for our sanity.

    Hope you all have a little break, at least.


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.
Related Posts Plugin for WordPress, Blogger...