Tuesday, April 17, 2012

We Won The Lottery!

In the form of free hotel tickets for this, that is! Since the conference is being held at the Orlando Hilton, for us it's a windfall.

We attended in 2004, the kids and myself, and we had a great time. We stayed next door to the Hilton, because they were already booked when we decided to go. The pool at our digs didn't compare to the one at the big H where there were waterfalls and poolside cafes serving up cool drinks and sandwiches. No more slumming it this time, we will be going 4 Star!

I haven't seen the line-up of workshops yet, but it doesn't matter. It's been so long since I've been to any type of disability conference that it'll all be new to me. I'm nerdy enough to consider workshops a good time.

Melody was eight years old when we went to the Family Cafe last time, and she remembers the boredom of pushing Daniel back and forth in his stroller while I tried to catch a speaker/discussion here and there. This time we'll use the respite they offer so that she's not stuck with that job (most of our time was spent in the pool and at  fun stuff like the Big Dance, just so no one is judging me right now for inflicting unnecessary boredom on my child).

Orlando is close to home, so the only real expense to plan for is food. Since we are lottery winners, I believe we can afford to splurge on some fine dining. I'm counting down the days!

Saturday, April 7, 2012

Calling all parents of hand mouthers!

I'm typing from my phone while enjoying an outdoor breeze with Daniel, so please forgive typos.

Daniel mouths his hands so much that he whips his saliva into a frothy mess (sorry if the visual is too much!) I have tried splints, but I feel like it's denying him sensory input that he obviously craves. I bought "spiky hands", which are rubber things that cover his hands and give him something else to mess with that protects his hands from the chafing.

Do any of you have other suggestions? It's difficult to be out and about in public when he's doing this, plus it's not good for his hands.


Friday, April 6, 2012

Caregivers and Big Sister Love

So far I'm pretty lukewarm about the caregivers we're getting from the agency I switched to. We're new at having help, so I haven't had the chance to become truly jaded yet, but geez...you'd think there'd be more to choose from.

I know, low wages and lack of training are the problem. I'm lucky we got on the waiver and have any help at all. I know.

Yesterday the girl that comes for a few hours in the morning was showing the new guy the ropes while I was getting ready to take my husband downtown for surgery (it went very well, btw, much better than expected). I made sure my daughter was also here the whole time I was gone to oversee things and let the dude do the heavy lifting.

Melody (daughter) texted me regarding the two caregivers while I was at the hospital: Mom, they're like twins. They're both quiet and boring. lol, I don't even know what to tell them. "Hey! Talking to him and playing would be great" lol, like, seriously. Let's sit here and be quiet. Sounds like a party. They're watching this really weird serious tv show. But D's fine. I never leave them alone. I'm coming in and out non-stop.

Yes, my daughter got the smart ass gene from both sides of the family, and yes, I did tell her to have them take D outside for a walk instead of sitting inside. I am so glad I have her here to keep an eye on any newbies. Daniel scored having her as a big sister. I don't know what I'll do when she graduates and moves away. Wait, that can never happen!

Just so it's clear, God, I'm looking for a much better fit when it comes to Daniel's caregivers.

Wednesday, April 4, 2012

A Little Help from my Friends

I decided to move my mother-in-law from the skilled nursing facility she's been in since December into a small, very nice assisted living center. The paperwork is almost done, and I can go to sleep now certain (as certain as you can be under these circumstances) that she's going to be well taken care of and surrounded by beauty and kind people.

My husband's surgery was rescheduled from last Thursday to tomorrow. After a frantic scramble to find an ER that could replace the feeding tube that came out Sunday, he'll be able to have the procedure knowing that he can let his mouth heal before attempting milkshakes again. He's scared. I'm praying.

An interesting thing happened two days ago. I thought of an old friend who I considered a mentor when I was a nineteen year old nursing student in 1981. We had small group meetings at her house once a week with she and her husband and another couple. We'd read and study the A Search for God material, then meditate. It was a peaceful time in my life. It gave me a good foundation for things to come.

I haven't spoken to her since about 1995 or so, but she was suddenly on my mind. I decided to google and try to find out if she's still alive. Her obituary popped up immediately. Her husband died in 2009, and she followed in 2010 at the age of 87.

I wrote her a little note. I thanked her for the God Calling , a devotional book she introduced me to all those years ago that has meant more to me than anything I've ever read. I have multiple copies of it on my bookshelf and have given many away to friends. I wrote a little more in my note to Penny, and then went to lunch in the employee break room.

I looked over at the table stacked with items for sale. It's been sitting there for weeks, and I've glanced at it a few times. This time I noticed something I hadn't before. A beautiful brown book with the engraved title Jesus Calling.

I read the intro, and the author not only mentions the influence of the God Calling book in her life, but Catherine Marshall's Beyond Ourselves. Both books are meaningful to me. I even included Catherine Marshall in my acknowledgements section of the book I wrote in 1994. I have a long history of thanking those that have passed over!

I asked our bookkeeper if I could order a copy. She said that the order was already faxed earlier in the day, but I could have the one on the table unless the distributor happened to bring along an extra copy the next day when he made his delivery.

I found the salesman sitting with the box of orders the following afternoon. "Did you bring an extra copy of this one?" I asked. "Yes, in fact I did bring one extra with me." "It's mine," I told him.

Wow. This stuff never ceases to amaze me.

I thanked Penny again for continuing to help me and point me to good reading material. Then I had a strong inner push to make the changes for my mother-in-law that I mentioned at the beginning of the blog. I do believe Penny had something to do with that. I just do.

True friendship never dies. Thanks again, Penny, wherever you are! I believe I'm ready for what's next.