Notes from Another Dragon Mom

October 19, 2011 at 6:50 pm (Uncategorized)

Kaitie and Daniel on FB in the hospitalI don’t know if my thoughts are still too scattered to write anything coherent about this whole hospitalization / blood clot / never ending saga of Kaitie’s health. I always say that having a child with special needs comes with a lot of slow grief for the life you had imagined for your child which will now not come to pass. When you have a child with a terminal disease, it’s really the fear that gets you. Will she get back to what was normal before this episode? Are we looking at a new normal? (Scary what can become “normal.”) What if this is just the beginning of the decline?

You see, we know this disease will eat away her until it eventually takes her from us altogether. Not today, but one day. “One day” seems far enough away when she’s healthy, hanging with her friends, gossiping about who is going with whom to the Homecoming dance. But when that conversation is going on from a hospital bed, watching her laugh, my heart breaks. Just a little bit. Bit by bit.

I want for her to experience all the joys of being a teenager. I want it for her so much it steals my breath. School. Friends. Dances. Boyfriends. I even want the sorrows to be a part of her life. Heartache and bad decisions are all normal and something to learn from. When I find her weeping in her room, I want it to be because some boy broke her heart, not because she is just so tired, so sick.

But we don’t get what we want. We don’t get what’s fair or sane or right. We get what we get. And we deal. We make the best of what we have and look for moments of sunshine breaking through the darkness, and follow those rays back to the light.

I read an essay this morning from a mother of a little boy with Tay-Sacs in which she describes how parenting a child with a terminal illness makes you a Dragon Mom:

“The mothers and fathers of terminally ill children are something else entirely. Our goals are simple and terrible: to help our children live with minimal discomfort and maximum dignity. We will not launch our children into a bright and promising future, but see them into early graves. We will prepare to lose them and then, impossibly, to live on after that gutting loss. This requires a new ferocity, a new way of thinking, a new animal. We are dragon parents: fierce and loyal and loving as hell.”

Of course, CF isn’t the same as Tay-Sacs.  Thanks to modern medicine, more than half of those with CF live to see adulthood.  But the medial life expentancy of 37 is still way too short of a life. And it isn’t an easy journey. There are no guarantees. I don’t know what any of my kids would have been like if Kaitie weren’t diagnosed with CF nearly thirteen years ago.

The boys love their sister. The disease she fights is nearly as much a part of their lives as it is hers, especially now and especially for Raymond since he’s still at home. While we spent weeks at the hospital with his sister, he kept right on going. Suddenly, he had to get himself up, ready and to school, alone in the house. He worked up the audition piece for the school musical by himself and earned himself a roll, all while keeping things running at home and school. He even took care of Kaitie’s stupid chickens for her. He wouldn’t admit it but he was worried for his sister and missed her, too.

Then there’s the amazing girl that is Kaitie. Despite two weeks of IVs, respiratory therapy, meds, illness and a giant blood clot, she treated the whole experience like a really bizarre slumber party, which not only included me, her family and friends, but also the nurses, respiratory therapists, doctors, food service… anyone who walked in the door was susceptible to her. Whether it was good natured griping about being woken up yet again or matching wits with her brother (sarcasm and teasing run in our family) or private jokes just between she and I, she never lost it. She was never angry, never overwhelmed, never sad. She takes in whatever life throws at her, fighting what she can and not worrying about the things she can’t, even sparing a few minutes to comfort her mom, who is not so zen about things when it comes to her daughter’s illness.

Now, as I type this, she is still asleep up in her room. No longer in the hospital but still battling, struggling to make life as normal as possible under the circumstances. Sleeping more than a dozen hours a night, sometimes up to 20 hours a day, shows that her poor body is still working to heal her. Her arms, legs, stomach are all covered in a rainbow of black and blue, purple, green and yellow–bruises from the twice daily shots that will be a part of our lives for the next three to six months in an effort to allow her body to break up the blood clot that formed in her arm due to her PICC line.

I’ve been a parent for more than half of my life now, 22 years. It is the best thing about me. It’s frustrating and empowering, mind-boggling in every way, heartbreaking and joyous. And I wouldn’t trade it for anything in the world. Even now.

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