Sunday, September 21, 2008

My Point

If anyone is wondering why it would occur to me to document the changing of the water bag (which isn't nearly as entertaining as the changing of the guard) or even if you aren't wondering - let me explain.

A week or so ago, I read a post on a blog of a mom who's 4 year old son is on a ventilator due to a spinal chord injury as a result of a car accident. Here is a portion of what she had to say:

The other night I was so tired and I put Conner in bed, but after you put him to bed you have another 30 minutes of medical stuff you have to do for him. I was about in tears, because I was so tired and ready to go to bed. I just asked God if the day was going to come, where I could just lay my little boy down in bed and go climb in my bed and go to sleep without any worries.

These words really hit home with me as I thought to myself "I so completely understand how you feel". If I had to pick the one thing I miss the most, it's the ability to just at the end of a long day. After everyone else in the house is down for the night, snuggled comfortably in their beds, my night-time routine begins. It's not so much that it's difficult, it's just time consuming (and critical to Jack's well being) and when you are tired and just want to go to bed . . . . sometimes you really do just want to cry.

The other night when I was finishing up with Jack's bedtime routine and encountered the "should I change the bag of water" that turned into having to change out the entire water chamber - it made me think of Conner's mom's post and how this was a perfect example of the "medical stuff" that will put you over the edge when you just want to So, I grabbed my camera and told you my story.

It's these never ending night-time routines and the other relentless demands of caring for a child with a lot of medical needs that inspired me to establish The Willow Tree Foundation. It's my mission to reach out to parents of medically fragile children and let them know that I recognize and understand what they are going through. I understand the enormous stresses they face in caring for their children and I understand that some days it’s all they can do to get up and put one foot in front of the other. I realize that providing a couple hours or even a weekend away from the demands of caring for a medically complex child isn't going to make everything okay. However, I feel it's important to let these parents know that their efforts don’t go unnoticed and that they too are deserving of some time and attention. While all parents need time to unwind and re-energize, parents of medically involved children – those who perhaps need this time the most - are the least likely to take any time for themselves. If nothing else, I hope to ease the guilt and let my fellow sorority sisters know that it's okay to take some "me" time.

Speaking of The Willow Tree Foundation, I have a really neat project in the works that I'm hoping to share with all of you in about a month. It will be a fundraising opportunity as well as involve something that I think many of you will enjoy personally. Stay tuned.

Anyway ........... what WAS my point?


julie w said...

Yes, Ann, I too can relate to that feeling. My worst headache is when I give Sam his midnight meds and the g-tube blocks which often results in me having to change the entire feed set so that he can continue to get his overnight feed. Grrr....
Oh for a night without alarms!
Funny thing - James set his alarm clock for 6.30am to get up for school - of course, it woke John and I because we thought something was alarming - James just slept right through it and I had to wake him at 7.30!!

Love the IV pole by the way!

Anonymous said...

I totally got that last post and the one today. It does seem like an endless ride we are all on at times. People can never understand why it takes us so long to get going in the mornings. I feel the need to post something about this on Nathan's site, too. It is so hard to explain to people on the "outside." We can't wait to see you!

Faith said...

Dito. Last week my mom told me that Brian looks "terrible." This morning when I walked into work someone said that I looked "frazzled." I got (maybe) 2 hours of sleep last night. People just have no idea. By far the thing I miss the most is sleep. I am so tired of people saying that lack of sleep comes with the territory of being a parent. Waking up and reconnecting your daughter to a life supporting machine is not normal...people just don't understand how debilitating this really is. Thank you for pointing that out, and thank you for all you do to help special families!
Jen :)

Faithful Froggers said...

I think it is wonderful for you to share what your "normal" days are like. So many people have no idea what you go through each day.

Loved your quote on HOPE. Thanks for sharing.

Nikki & boys said...

Boy I can totally relate to your last two posts. It also wish nothing more than putting my kids to bed and just crawling in myself. As bad as I hate to admit it, that just isn't going to happen in this house EVER. But then again, my husband does a pretty good job of just going to bed. Never turns off a light or locks a door. Who cares if the cats have food or meds have been given. Maybe we should just turn into men...then we'll be able to! : )