Thursday, January 16, 2014

Not Strong Enough

I'm not strong enough.  I feel myself breaking a little piece at a time. And I'm sure there will be nothing left after a while.

We had the Daisy Investiture Ceremony last night for the Dancing Queen.  There were three babies there, from itsy bitsy at a couple of weeks old to about 6 months and then just learning to toddle.  Juxtaposed against the group of kindergarten girls running around and having fun, with the big brothers in back playing video games, a giant wave of nostalgia overcame me.  My babies have left me and each day they grow more and leave more.

Later, I stared at photos of my chubby little TRex and decidedly not-chubby baby DQ.  I cried and cried.

Every parent faces this.  We are raising our children to be strong enough to go out on their own--to leave us. But, most of the time, parents still get to see their children after they've grown and gone.  But I'm raising one of my children to leave me forever, while still letting her plan her future out of my home, living.  This ridiculous balancing act is so hard.

The situation always hits me harder when the doctors actually agree with me that DQ continues to decline.  She will be started on a new med this week to help with her symptoms.  I can handle sick.  I can even handle the effects of the decline.  But the more she declines, the closer I am to never being able to hold her again.  Never hearing another good night song.  I cannot handle that thought.

She has a sinus infection this morning and wanted to go back to bed.  Ten minutes later, when she hadn't fallen back asleep, she cried and cried for me because she was afraid in the dark.  She never wants to be alone.  How can I leave her alone? In the dark? She gets so scared?   And as much as I know at death, you are gone, just as you were before you were born, I don't think I will be able to leave her alone.  She is supposed to stay with me!!!!! I'm supposed to protect her. And I can't. I can't. I'm not strong enough.
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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