Sunday, October 14, 2012

At the Crossroads of Despair and Clean Underwear

Do you see it? The ghost image in the clouds? Some mornings not even the clouds can face the day.

Lately, Ty has had some rather rough mornings, and it's hard for me to watch it. Maybe, on some small, small scale, I can empathize with God; although I cannot begin to fathom a heart so strong, so big,  so enduring as to silently observe the suffering of millions of His children.

I've been here on this street-at the corner of Hurting and Helplessness-before; so many times. So very many times. Yet I am never ready for the icy wave of depression that washes over me, hits me in the heart, and sucks the breath right out of me. These are the days when I wish I could just crawl into bed next to Ty, hold him, sing to him, run my fingers through his hair, and it would be enough-that it would...that it could fix everything.
My heart craves a a day off, but I am what keeps this place running where Ty is concerned (Mr. O takes care of everyone and everything else once he's home from work), and I guess it wouldn't be fair for me to have a day off from watching Ty hurt when he still has to go on actually hurting. 

Just once it would be nice to be taking photos of him and his Homecoming date or cheering him on at a volleyball game or lecturing him about driving too fast through this neighborhood with so many little kids around or asking him for the hundredth time, I swear, to please, please just mow the damn lawn already.

Man, I love this kid, and I wouldn't change him for anything. But sometimes, I wish they made a pain killer for this.

Instead I am flow-charting meds and bowel/urine out-put; engineering less painful (for Ty's severe bone pain/muscle spasms, nausea) ways to single-handedly bathe and change bed sheets/briefs; staying on top of skin break-down issues; etc. And really those things are just the minutiae, the distractions, the busy work of the everyday.

The real difficulty lies in not losing myself. I get so lost in his hurting it becomes my hurting, and this is hard to explain, that I shut down. I don't want to see anyone, so I don't. It becomes all I can do to leave the house, so I don't. Mentally it's too much to even think about, let alone prepare, dinner, so I don't (I don't think any kids have actually died from cereal poisoning, have they? I'm just saying).

So I write, and I shower/wash my hair. Yes, even if I'm going to crawl right back into my yoga pants-because even if I die of despair, which I won't, I'll at least have clean hair and clean underwear-Yo, I'm ready to go. And sometimes I even eat chocolate chips right out of the bag and suck down 32 ozs. Dr. Pepper refills. Except I'm out.

Anybody want to grab me some? I can pay in clean underwear.

*all images by Spielberg and one by Michelle


Geoffrey said...

I can feel (part of) your pain. There have been so many times I have felt robbed or cheated by having a child with special needs. Then, she smiles, giggles, or coos, and for a moment, no matter how brief, all is right with the world. I am constantly amazed by the strength of my wife in taking care of her all day every day. And yet, I still feel that she somehow got the short end of the stick. But then, every so often, I see or read about another child or person that has different difficulties in life, and I am eternally grateful for only having to deal with what she has.

I am amazed by your family too, and others like yours, that no matter how hard things get, keep moving, just because it's the right thing to do.

Heffalump said...

Your strength astounds me Corrie. I wish I could give you a big hug right now.

Mrs. Organic said...

I know you understand. Tyler is a blessing to us, but it is hard to see anyone you love go through pain especially when it is harder to explain that you are trying to help them.

I have been going through my own chronic pain issues, so maybe it is even more sensitive a topic than usual.

Mrs. Organic said...

Me too, Heff. Me too. Come on over, the guest room is ready. :)

Emily said...

I am constantly amazed by your strength, your perseverance, your faith. To be hit by those waves of depression and still be standing is a testament to how strong you really are.

No one has ever died from too much cereal--or Eggo waffles or mac and cheese. And yoga pants are pretty much the standard uniform during life's challenges.

Tebbs Family said...

Ty is so blessed to be your son. Can you imagine him with anyone else who would care for him as you do? I cant! just wish the blessings and pure joy of "later" could wash over you both now... You're an inspiration to us all, your writing is brilliant and this is a small (yet long) moment in the eternal plan.

Kim said...

Dang it! It's hard to get up and go on every day. Sometimes life just sucks and there's no other way to say it. However, you get up, keep going and do your very best and that's what you've been doing for so many years. I'm sure Ty recognizes that but can't tell you how much he loves you and how much he appreciates all you do for him. Just once you want a "normal" life for your kiddo, if there is such a thing. I hope on occasion you are getting some respite care, it's tough to be a care taker. Hang in there, wear your yoga pants with pride, enjoy your chocolate and Dr. Pepper. xoxo

Mrs. Organic said...

Thanks Emily (and now I also have a couple more ideas to add to my dinner line-up). I don't feel strong, but I guess that's the point-sometimes we don't, but we wash our hair, put on clean undies and....well, it's a starting point.

Mrs. Organic said...

I can't wait for those "later"moments, either. There are many conversations I look forward to and mostly just standing and looking up at his face and of course, having a good old-fashioned foot race at which he will soundly trounce me.

Mrs. Organic said...

These are the sorts of things that hit me after every major surgery-respite care or not. But yes, we've been fortunate to have wonderful respite providers who love Ty so very much-we always know he is in very capable, loving hands with them.

Kim, I admire what a wonderful parent you are and the rich experiences you provide your family. It seems that nothing stops you. :)

mCat said...

I have no frame of reference to even understand your feelings, but know that I love you and hurt for you. I taking in a reeeealllly deep breath................ and with that I remove some measure of sadness (I hope). Sometimes it's easier to carry the baggage around when you have someone take a case or two on occasion or even just re-adjust the load for a sec.


mstans said...

You are a beautiful writer. Thank you for throwing your raw feelings out there to express what the rest of us have felt so often but don't have the same gift that you have. Hugs and Kisses. I hope that he and you are well enough that you can make it to the parent conference!!!

Mrs. Organic said...

Thanks, mCat. It does help.

Mikael, I hope to be there.

Lindsey Johnson said...

You are my hero. For reals. I am so grateful you are my friend.

Melody said...

One of the things I love about you is your ability to tell the truth. So few can do it well. And you do.

Another thing I love is that I believe when you tell the truth, you bring at least a measure of peace and power to yourself. So I don't have to fear that my beautiful friend will be swallowed up in the demands of loving.

God bless you, Corrie. As always. (God.The.Mother bless you especially.)

Mrs. Organic said...

Melody -

I love you. I love that you talk about Her. Because yes. Yes! How on Earth or in Heaven could a heart be *that* strong as to not intercede? How?

And yes. Writing is my Letting Go. As MJ once put it to words for me..."each of these words is a bird of pain taking flight" or something very close to that.

MJ said...

Sorry to have missed this post when it was first fresh. What would we do without written words, though? Love and hugs and you and all your dear ones will be in my prayers tonight.