Wednesday, February 29, 2012

Small Stuff

I've had a few troubling days this week, but change is coming.

Daniel meets his new caregiver tomorrow morning, and hopefully March will bring a "new beginning, fresh start, the next chapter," etc. etc.

Rich has another surgery coming up in a couple of weeks, and ditto to all of the above trite statments. After all, they're overused for a reason.

One good thing. This morning when I went to the cafeteria to fill the ice bucket, a kindergartner who was sick a couple of days ago came up and hugged me and said, "I'm better, Nurse Carolyn!"

Also, Friday I will be out of the clinic accompanying my students with diabetes on a field trip to the zoo. There's nothing like little monkeys to make your week better.

It's almost springtime...

Sunday, February 26, 2012

Looking for Help

The following is a note I posted on Facebook this morning. I am determined to find someone who fits the bill!

Recently I hired an agency to provide respite care for Daniel. That company is Pediatric Services of America.

Daniel has a wonderful care provider who gets him ready for school every morning so that I can work and support the family, but she isn't able to do all of the hours that we have available. I need weekends and evenings covered, and I really want to find someone who feels drawn to do this because of a love for kids with unique needs and not just for monetary reasons.

Daniel is non-verbal, but he gets his point across. He walks with AFOs and someone beside him helping him so that he doesn't fall. He has a wicked sense of humor (cracks up when his sister gets in trouble).

I'm looking for someone who is strong enough to lift him in and out of the bathtub, wheelchair and car. Someone who has a sense of humor, is kind, honest and dependable. Most of all, though, I need someone who can find ways to keep him engaged in life, doing fun things. He loves water, so pool dates would be part of the gig. Long walks are another favorite. This isn't a sit around while he's bored out of his mind kind of job. I'm looking for someone who is excited about the work, and ready to commit to helping my son be up and out doing the things he loves.

If this prospect appeals to you, you can message me and I'll put you in touch with the agency. They will interview, screen, train and hire you. They take care of your paycheck and that end of things.


Tuesday, February 21, 2012

Quiet Times

Melody's been reading to Daniel almost every night for the past couple of weeks. I love the way he's peeking around to watch. As I listened to her read, the words from a Billy Joel song came to my mind, "These are the times to remember, for they will not last forever," and I snapped a picture to preserve it.

Wednesday, February 8, 2012

It CAN be done

I read Nicola Schaefer's book about her daughter when Daniel was a baby, and I wrote about her impact on me here. Here's a video clip of her talking about her life in Canada. Catherine is my age (50) and living in her own home with supports.

Saturday, February 4, 2012

What's Happening Here

I spent (financed) big bucks on a Tempurpedic mattress for Daniel a couple of months ago so that I could move him out of his crib and into something large and comfy. The thinking was that squirm worm would be less likely to end up on the floor due to the cushiness of the mattress and the way it makes you want to stay put as you sink in.

Well, he slept at least part of the night on the floor next to his bed last night. I found him there this morning curled up. Looks like his super rolling powers are going to necessitate a rail of some sort. Although, one morning he was at the end of the queen size mattress nearly ready to roll off. It's close to the floor, so he can't get injured, but it's no fun sleeping on carpet.

In similar news, my mother-in-law has been in a nursing home since she fell on Christmas day. She'll be coming home Monday and we're in preparation mode trying to get all of the things she'll need to keep her from falling again. My step-son will be rooming with her, we bought a shower chair, toilet lift, and dusted off the walker that hubby used when he broke his back. Prayers for her safety are welcomed.

Speaking of my husband, he was pronounced cancer free in December, but now he has a new diagnosis as a result of the radiation that rid him of it. Osteoradionecrosis. Areas of his jawbone are dying. He's in a lot of pain and has to have 20 hyperbaric oxygen treatments followed by surgery, and ending with 10 more hbot. Again, prayers are appreciated more than you know.

My former husband and I owned a hyperbaric oxygen clinic that's now defunct. In many ways my life is full of irony.

I was able to meditate this morning while everyone slept, and I do feel the strength of knowing that I can't control any of this, and I can and will survive it.

That's my update. Feel free to appreciate your own bundle of troubles as you go, "Damn, that sucks!" They say if we put all our problems in a pile along with everyone else's and were told to choose, we'd keep our own. I can see that.

Time to keep on keeping on!