Possibly Ignorant Opinion On Chronic Illness

December 2, 2010 by Rieshy

Parenting A Chronically Ill Child
 I was recently chatting with a knitting buddy at a school function about mothering, identity and chronically ill children.  Nothing like some good wool and the click of knitting needles to start a deep conversation...  

Our conversation prompted me to think back on the stages of thought, or more acurately- the stages of Grief I experienced when one of my children was first diagnosed with a Fatty Acid Oxidation Disorder.  
Grief, in Bullet Points:
  • Total Shock and the inability to coherently process the words spoken by your child's doctors.
  • Internet Hibernation-  The time period where instead of sleeping you spend all available time on the computer looking up everything you can find about your child's illness and every permutation there-of.  
  • Percolation- This is the time period where you sit up at night thinking about all the horrible worst-case scenarios you have discovered on the internet.
  • Theology- All the why's and where's and prayers to God.  This is where you find out where your faith really lies and what you really believe. 
  • Denial- You decide that it might all just go away.  The doctors might be mistaken, or perhaps the situation has all been "blown out of proportion."
  • Oozing- This is the time period when all you can think about is your child and their illness.  You seem to ooze grief and concern even when you least expect it.   The grocery store cashier's casual remark about the cuteness of you child may cause you to fight both tears and the urge to over-share.
  • Integration- This is the time period where you have to figure out what your child's illness means in terms of not only their life but also family life, food preparation, work, school, your marriage, your free time.
  • Mastery- This is when you have become proficient with all the new-to-you medical terms, treatments and concerns caused by your child's illness.  Life starts to become routine again.
  • The New Normal- This is when you stop thinking of your child as chronically ill and start thinking of them as your child.  Your life becomes "yours" again.  Your child's illness is an aspect of their life and your life and your family's life, but not the definition.
  • The Kicker- The unique thing about emotionally dealing a child's illness is the uneven course of many chronic illnesses.  Just when things are going smoothly a sudden medical crisis can "kick" you, as the parent, right back to the beginning of the grief process.
Obviously every parent is different.  I "oozed" and "Internet Hibernated" more than my husband.  Of all the stages "The Kicker" is the one that is most personally difficult for me.   It's hard to maintain equilibrium when you are unexpectedly back in the hospital with your child, again.

I don't want my ill child to be known as An Ill Child.  His name is Jack.  He likes monsters and cars.  Who knows what exciting things he'll accomplish?  So what if he has to accomplish things while keeping up with his treatment protocol?  

I don't want to be first and foremost defined as the mother of a chronically ill child. 
That would suck. 

So, cheers to the New Normal. 

1 comment:

CristyLynn said...

I have been thinking about this for a while now, and I've been wanting to put in words so many things that you just said, even if just in my journal. Thanks for writing this! And let's hear it for The New Normal!

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