Thursday, January 10, 2013

Random Short Update

I sat down at the computer with the intention of writing a blog post on several occasions this last week. But my mood has been so poor that what I would have written would not have been enjoyable.  This post probably doesn't qualify as enjoyable either.


Jack is fine.  He's pretty much the status quo and feeling mostly well.  But, it's a lot of work to keep him that way.  His care is non-stop anymore and I'm tired.  So tired that, like tonight, after filling the bag for Jack's feeding pump with 800 cc's of formula and water, I then proceeded to drop the bag and the entire contents spilled all over Jack's bathroom floor.  Not only did I then get to put together another feeding bag, I got the added bonus of getting to mop the bathroom floor.  Of course, I'm swearing like a truck driver and Mark comes rushing downstairs wondering what the heck is going on.  So, yes, I'm tired. And when I'm tired, I'm not in a good mood. I almost wish I had never heard the words "caregiver burnout".  It's as if I've now been given permission to be in a crappy mood all the time.

For the record, I get tired of hearing myself say I'm tired all the time, but being tired has become as much of who I am as my name.  "Hi, I'm Ann and I'm tired".  Chronically ill kids make for chronically tired parents.  

I need an attitude adjustment and I need some rest.  The attitude adjustment is completely within my control. Getting more rest is not.  Every day my challenge is to let go of the anger, find joy in the little things and accept that the status quo is good enough. Some days are easier than others. Weekends are brutal.    

I hope to have something more substantial and interesting to share in the near future.  In the meantime, I'll leave you with a quote I recently came across in a book I'm reading.  The message really spoke to me (and is helping with my attitude adjustment):

I slept and dreamt that life was joy.
I awoke and saw that life was service.
I acted and behold, service was joy.

- Rabindranath Tagore


And just because I feel like sharing random old pictures of Jack, here is one of my little boy "standing" in his stander.  I think he was about a year and a half old here. Stinkin' cute, isn't he?!


Eric said...

Absolutely awesome photograph, Ann.
Now for the 'but'.
But your attitude is not completely within your control. Extraneous circumstances hold us hostage much of the time. I'd love to hear you swear like a truck driver though. What I would like one time is that my kids, upon hearing me curse seven future generations of fiendish devils, would chuckle. That would defuse the moment in a second. Chuckling, keep that in mind.

But, you will NOT have something more substantial next time Ann, because this is pretty darn substantial. We don't need to have emergencies to justify our state of mind. A spilled bag, or in my case an exploding 60cc syringe full of goopy food showering Segev, his chair, the ceiling, the curtains, the neighbor's cat is as good a reason as any.

Fare strong and thee well.

Sarah said...

Oh Ann...the formula spills are the worst!!!! As I was reading your post I just kept saying " nonono..." I can feel your frustration and I KNOW you need a big break!! It's hard when something as simple as feeding our child can cause such stress. I'm praying your day of rest and rejuvination comes quickly. If all else fails, maybe try playing peek a boo with Jack while putting away his supplies next time. I heard its a real mood fixer. Hahaha!

Susan said...

For the record every time we have a formula/feeding accident I swear like a truck driver. It's frustrating and can send me into a spiral real quick even when I'm fully rested.

But I read somewhere that we need to pay close attention to our negative emotions. They tell us when our needs aren't being met. Rather than trying to simply adjust your attitude is there a way you can call on someone for additional support? First to get some uninterrupted sleep? (You'll never have a good attitude if your body is exhausted.) More nursing hours? Can you switch off with your husband so you each can get a decent night half the week? What about Ryan's House? How about family or friends? Maybe now is the time to ask them for help so you can recharge a bit.

You also may need to consider at some point if Jack's needs have grown too high to be met at home. I'm sorry to say. I just want you to know that if it ever came to that I would support you just as I'll support you if lives out the remainder of his days at home. XOXO ((((HUGS))))

P.S. LOVE seeing the old photos. That one is very cute and I hope you'll post more.

ssouth said...

I wish I could help. I know a nap or even a vacation doesn't really let you set down your worries and exhaustion. I hope you can find some sort of relief soon even if it's just in a cup of joe (or stronger) and a funny movie curled up next to Jack. Bright shiny rays of light, love, and laughter offered up to you from Missouri.

Sarah said...

Oh Susan I can't even imagine Ann sending Jack anywhere. It would break her heart. We all get stressed and overwhelmed. This life provides no relief. But given the choice between carrying on and getting relief at the expense of putting your child's care in someone else's hands, I can only ever imagine Ann carrying on for another day. Venting is deeply needed in this life.

Ann said...

Eric - unfortunately me swearing like a truck driver is an all too common event. It's probably my greatest weakness, but it's a better release than putting my fist through the wall. :)

Ann said...

Susan- I can assure you that it would be over my dead body that Jack would ever be cared for anywhere besides his own home by his own family. I'm just really venting here and sharing a glimpse of this life. There really is no solution to the chronic fatigue and I know that. Thanks as always for your supportive words. xoxo

Susan said...

Yes I suspected you would say that Ann. Just so long as it doesn't come to that (over your dead body). He's a big boy. I really don't know how you do it. I have a hard time with a more mobile 50 pound child. And I don't have a demanding career on top of it all.

Vent all you want. You're entitled. I know there are no easy answers. I wish there were.