Nine years in the eye of the storm

Nine years ago, Birdie exploded into our lives like a cannon shot.  She was born hours ahead of Hurricane Irene, and her personality and temperament are less of the Irenic variety and more of the hurricane. 

My mom, the master multi-tasker.

With Piglet.  He was fascinated with her.  At least at first.  These days they spend a lot of time arguing about game rules.

Boo was barely more than a baby himself, so we had to make sure he was gentle with her.  But they have a sweet (but complicated) relationship now.

I looked through baby photos today, and was again reminded of how fragile she was that first year especially, when I didn't have a good handle on her medical issues, and she fell further and further behind developmentally.  Not that it is so obvious in the photos, unless you look at the photos of her at 8-9 months and realize that she is struggling to hold her head up and cannot sit up unassisted.  Or how tiny she is relative to her age. 

But man.  That girl.  (We say that a lot around here: That Girl).  She is indomitable.  She is a force of nature, and I suppose it is that strength that has carried her through all the years of respiratory crisis and severe illness--just sheer effort of will.

She's more of a tomboy than a girly girl, but does love to dress up in princess costumes and to have her toenails painted pink.  But she prefers to run and move, hang from the gymnastics swing, and get dirty and climb things.  She's a great artist, and I look forward to seeing how her skill develops as she gets older.  She wants to know everything (she devoured the When There is No Doctor book, and surprises me constantly with random bits of medical knowledge), and her observations are spare and hilarious.  ("How do you make ice cream?  You get a goat, and freeze it!")

As for me, I'm still sifting through all the baggage I carry around from the years of sleeping no more than 2 hours at a time (if I was lucky) and being constantly (constantly) on alert for new health crises, my brain a mush of medication schedules and pharmacy refills, and late night calls to the doctor.  The management of it was so heavy. 

 

 

 

Whenever I'm tempted to get frustrated with her impulsiveness or her excess energy, I remind myself that we weren't sure if she would ever walk, or if she would ever be healthy looking.  She was frail and her skin tight on her bones for so long, it is hard to make sense of the robust girl I see now.  Her hair is healthy and long, rather than wispy and falling out all the time from the stress of chronic illness.  There have been some dental consequences to the medical interventions given in her early years to keep her alive, but on the whole, they have been relatively minor, and compared with the alternative, I'll take the teeth problems any day of the week.

Having a medically fragile child changes you, profoundly, as a parent.  But she's nine today, and doing well, so I'll take it.