Thursday, November 03, 2011

A Complex Diagnosis



Trying to diagnose someone is like trying to describe purple.

Think of purple. Now think of everything you aren't thinking about that can still be classified as purple. Different shades on a paint chart. Mulberries on a summer day. Velvet. Sunsets and sun rises. Amethyst, mauve, violet, grape. All these things are purple and purple is all of these things but none of them describe the entirety of purple.

Think of Kaylee. Now think of everything about Kaylee that you weren't thinking of. She is a cardio baby, a reflux baby, a special needs baby, a quiet baby, a small baby, a CDL baby, a baby with long eye lashes and beautiful curly hair, a baby who likes being wrapped and sung to, a baby who loves music, a cleft baby, a daughter, a little sister, a grandaughter, a niece, an NJ tube baby, an early intervention needs baby, a cute baby, a baby with hair clips, a girl baby, an ESBL baby, a size 00000 baby, a baby who is gaining weight, a baby who
is loved.

And all of these descriptors only scratch the surface.

It is my Job as Mum to get to know all of these facets of Kaylee and to remind my various medical staff that there is more than one shade of Kaylee - there is a whole spectrum.

It is hard to separate Kaylee from what is essentially her and what is a defect.

Hole in the heart - defect. Don't want it, don't like it, isn't fun, would like it fixed.

But another marker of Cornelia De Lange Syndrome is her beautiful long eye lashes and her thick curly hair.

If I could snap my fingers and remove all Kaylee's problems, how much of her would I remove also?

I read my children a picture book about Ted The Better-Than-New-Bear about a teddy bear who had gotten raggy and old. He was repaired, cleaned and given new overalls and his owner declared him BETTER than a new bear because he was all fixed, but he was still HIM.

One day Kaylee will be all fixed. Not by any particular surgeries - none of them will solve ALL her problems. Not by any particular therapy, drug or intervention. One day she will be healed by God. I have full and complete faith in this. Perhaps it will be tomorrow, perhaps it will be when Jesus returns. Like the parable of the wheat and the tares, everything good in my daughter will be preserved and everything that causes her pain will be cast away. She will be made better-than-new.

And every shade of Kaylee will shine.




In the meantime, tonight her central line will be removed. Her NJ tube placement went well. Strong words about planes and Monday are being flung about willy-nilly. A walk outside may even happen tomorrow. Home is on the horizon.

4 comments:

Kez Frances said...

Your strength is an inspiration Jess. Blessings to You and Jon and each of your children. Especially Kaylee.

Seaweed and Raine said...

Well said Jess. Keep at it and I hope you have a splendid walk outside! :)

Char said...

beautiful beautiful beautiful!!!

Leisa - LMD-AussieHS said...

so beautiful Jess. so many blessings, here and on the horizon - new every morning. I pray that HOME is one of them - very soon!