Sunday, January 29, 2012

Where Everybody Knows Your Name

Our family has been breakfasting at the same restaurant since before we were a family. The Mad Scientist and I happened upon the little place back when we were dating. Before he ate breakfast food. Before we were engaged. Long before kids.

We don't go there every weekend, but we are regulars. And the place is small and family owned, so the staff is pretty much the same as it was 8.5 years ago when we first started going there (although the location is different).  Everybody knows our names and has watched our family grow from the month before our wedding when I had to sit outside while the Mad Scientist grabbed our food to go because I had shingles (stress from wedding planning amidst the deposition schedule from hell) to this morning, as the Dancing Queen munched on breakfast enchilada and TRex ate his regular pancakes and scrambled eggs, followed by chocolate covered strawberries of course.
February 2010, TRex enjoying a strawberry.
Summer 2011, DQ enjoying a strawberry.
They watched as my belly grew with a baby TRex until he was a toddler and I had baby DQ on board. They worried with us as they saw TRex come in with only one of the Mad Scientist or I for months and no little baby by our side. They met DQ with a feeding tube in her nose and have witnessed her medicine routine (which is always given after breakfast so that she will eat more).  And they know us so well that when TRex and I show up on a morning, they immediately ask how DQ is since they know she is in the hospital and we're trying to give TRex a special treat. We stopped there on the way home from the airport after flying to California. They asked whether the doctor could help.
Summer 2009
Summer 2009

You get the picture. They know us.

This morning, however, I was taken aback.

This morning, as the Mad Scientist took TRex and DQ to the bathroom to wash the chocolate from their fingers, one of the waitresses caught me off guard. We were discussing the amount of enchilada DQ left behind and how well she is doing eating. The waitress asked how old DQ is now and I said she will be 4 in March. She then asked about TRex and I said he is 5.  She wanted to know how far apart the kids were and I said "17 months." She responded with a "wow".  Before I knew it, I said "Yeah, if I had known she was going to be so sick, I wouldn't have had the kids so close together."  She responded, "But DQ doesn't look sick. She always tells me stories and makes us smile." And at that moment, DQ came bounding back from the restroom, exerting more energy than she had stored, but making herself appear the picture of health.

I didn't have time to explain to the waitress that it doesn't matter what she looks like on the outside, DQ is sick. Just because you can't see it, doesn't mean she is fine. I really wanted to say these things, but the moment was lost. And hours later, I'm dwelling on it.

I don't really know why I'm letting it bother me. These people don't read the carepage. They don't know a lot. They see us. They've seen DQ much sicker. But, this one particular waitress has sat down with me for a good long time, asking questions about DQ and her surgeries and life.

I'm used to most people discounting what we go through, thinking everything is fine because DQ is not in a hospital bed and nobody sees all of her scars. But when I take the time to try to explain her condition and still, it is not understood, that is hard. I try to raise awareness all of the time so that more people will understand a little of what we go through, of what all heart families go through. I feel in my bones that if more people understood, they would want to do something and research dollars could be raised. I know the only way the Dancing Queen has a chance at a longer life is if breakthroughs are made today in research. Yet, if I can't get across the severity of what we live when I sit down with a person who was genuinely interested one-on-one, how can I expect to make a difference with anything that I do?

And therein lies my quandary.  I'm not going to stop trying to raise awareness. It is almost February afterall. But it does make me wonder how we can get the message across better?


  1. That is the one and almost only thing that really bothers me when people say it, "but he doesn't look sick" or "he sure looks like he's doing well." Yep, what's going on with the outside has nothing to do with what's going on in the inside. {{{HUG}}} Feel for you!

  2. I feel your frustration! I wonder, however, if the very fact that they don't know the severity of DQ's health problems means that they treat her as any normal child.
    And, for her mental health, that could be a very good thing. She "wears" her breakfast well! All meals should end with a chocolate-covered strawberry.



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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