Saturday, February 19, 2011

When I exhale

Do you remember that movie, I think it came out in the mid-90's perhaps, it was called "Waiting to Exhale"?  I liked the movie, but the thing that has really stuck with me all these years is not the movie's subject but its title. 

"Waiting to exhale".  What does that phrase mean?  I think it means that moment when circumstances in one's life finally ease up - there's money in the bank, or one's body is finally healthy again, or a troubling relationship is either resolved or in permanent, soul-easing disconnect....that moment when the weight which has been hanging over your head like a 9,000 pound anvil, keeping you constantly on edge, finally disappears.  And, having been taking short, panicky breaths for hours/days/years, you finally feel like you can fully breathe in...and fully, totally, exhale.  The stress melts away from your neck and shoulders, your mind empties for a moment, maybe even you sit down and just sit, and think about absolutely nothing...because God knows your thoughts have been running a mile-a-minute for what feels like eternity.

Do you know when I exhale, on a day-to-day basis?

When my child-with-special-needs is either in the competent care of someone I trust, or when she is finally in bed.  When I finally, after a long and emotionally draining day, have a moment to myself to just sit, just think about nothing, just be.

I have to imagine that many parents who have children with special needs may have this same brand of "exhale moments".  This is especially true when the child's diagnosis-based behavior issues are becoming or have been severe.  Moments like these, when the primary caregiver can "exhale" even for an hour, are also called "respite".  Not every parent of a special-needs-child is able to obtain respite, and some who can easily get it, through social services of one kind or another, may even decide they don't need it.  But, bluntly speaking, most special-needs parents probably do need respite assistance, and they should always, always use it.

And with all due respect to parents everywhere, please do not tell me that parenting my special-needs child is just like parenting any "normal" child - it isn't.  I have one of each - a child with no diagnosis or special need of any kind, and one with Prader-Willi Syndrome.  My "normal" child is the older of the two - by 4.5 years - so I was very well aware of what parenting a "normal" child looked like, before S came along.  I know for a fact, from second-by-second experience, how very much different it is to be a good parent to S compared to my first 4.5 years of parenting.  While I do breathe a bit easier when my older child is finally in bed, it is in NO WAY the same kind of "exhale" I experience once Sophie is finally in bed.  Parenting S is a daily emotional roller-coaster.  I am almost literally on the edge of my seat, for all the minutes and hours she is at home and awake, not knowing what is going to happen with her next.  Is she going to have a planet-sized meltdown about food, about something, about anything?  Is she going to go use the bathroom, and end up sitting there picking at her skin if I let her sit too long?  Is she going to spend the remainder of the day being exceedingly nasty to me - just because that is part of the PWS behavior issues and for no other reason?  She is 7 now, so this is no longer about "it's just a phase" or "it's the terrible twos" or "it's the terrible threes".  No, this is part of Prader-Willi Syndrome.  Her tantrums can be epic,.they can poison the atmosphere of the entire house (although she seemingly recovers with no residual effects). Her PWS-based behavior issues can be extremely unpleasant to be around, and that is not going to change without medication, I believe.  I have been in contact with enough parents who have (even just slightly) older children with PWS, to know that these behaviors are part of the syndrome.  So they are here to stay, it's not a phase - or, even if it lessens somewhat, I'm aware that changes in the body or changes in routine or changes in circumstance can bring it on again.  It is probably a bit like living with someone who, at the drop of a hat and for no obvious reason, turns on you and becomes verbally abusive.  S can and does turn on me, the syndrome causes her emotions to swing from very loving to just plain mean - and she's only 7.  I am her primary caregiver, I am with her more than anybody else including her father.  I am on the recieving end of whatever mood she's got going, and while I love her and know she's a gift from God, this drains me.  Although I expect that I will outlive her, I have many years ahead of me of trying to figure her out, trying to anticipate/head off if I can, the things that set her off. 

I have many days ahead, of waiting to exhale.



Janis said...

Love this one. really explains how it feels at the end of the day. Whew. Peace and quiet. No screaming, at least not until she wakes up in the middle of the night and I don't do something exactly like she thinks I should, or answer a question right. You just never know.

Pipsylou said...

Love your honesty. Oh, how I love it.

Rachel said...

Very good post. I hope some other Mom out there who struggles with a special needs child or who struggles with feeling guilty for the need to exhale reads this and finds an understanding in your words.

Yes I Blog said...

I can't even begin to say I have any clue what you must go through every day. But I for one can say I would never have the audicity to say that it's just "normal" parenting.

Sorry so many people don't "get it".

Big hugs gal! You inspire me!

JMB said...

I can't begin to express, in a coherent fashion, what all of your comments mean to me.

Thank you.


Laurie said...

This is such excellent writing.. so painfully honest. I do not look forward to our future sometimes. Right now we're still in the "normal" stage... she's off the gtubes and moving, not yet throwing tantrums. I find myself wishing we could stay here forever.