Pancakes!

My favorite, favorite song. It just makes me dance around with my pots and pans.

Ashley's treatment

WALK A MILE IN OUR SHOES

When I first heard the story of the young girl whose parents took steps to keep her smaller so they could manage her, I was appalled and perhaps quick to judge. I read more and found out both their reasons and the path they took through an ethics committee to have it approved. I am once again reminded that things are never as black or white, or good or bad as we make them.

I too have a child with profound disabilities. Dan is now 23 with the mental and physical abilities of an infant. He is also about 60 lbs and leggy but not very tall. He may be smaller than he would have been because he was not a good eater and he did not get a g-tube until he was 20. Maybe it is his condition or a combination. I know we are lucky because he could not live with us if we could not individually handle him. It’s rare to meet anyone even at TASH with a child like ours. This last conference was the first time some of us sat together and talked because our path is truly different.

Just reflecting on this past month may give you some idea of what life is like for us.

December 1^st, I took Dan to the doctor because he had a cough and we act immediately as he is prone to pneumonia. At the doctors’ office he suddenly started gasping for breath and the doctor called the EMT who whisked us off in an ambulance to the hospital. The doctor later said it was a mucus plug that got caught but we still had 9 days in the hospital. We had plans to fly to my folks for Christmas and the doctor said there is no way he is going to fly. He got out of the hospital and returned to our house with oxygen and a visiting nurse. At that point I was trying to work, deal with a bunch of new people in my house, and provide the same medication and breathing treatments done in the hospital.

We decided to continue with our plans to fly for Christmas, and I found we could take a small oxygen machine on the plane but it turned out he didn’t need it. We were lucky.

The first leg of the trip my husband had to carry Dan up the steps of the plane. We cannot use the device they have for people with disabilities because Dan is too twisted and it is dangerous. When we got to our destination he had diarrhea because of the antibiotics he had been on. Changing a young adult in the airport bathrooms is an interesting experience. Dan barely fits on the changing shelf. It is not private and I have no help as it is in the ladies’ room. We have tried some of the family bathrooms but they often have just a pull down shelf, which is not enough support.

Next, we took Dan out of his chair into my parent’s small car with his sister for support as his Dad lifted the very heavy wheelchair into a friend’s van. At my folks’ house we have to lift both Dan and the chair up steps. (Renting an accessible van costs more than the plane tickets.) My husband hurt his back later that same day playing tennis and since we had plans to see boats decorated with lights, we borrowed one of those old fashioned wheelchairs that someone else could lift in and out of a car.

Going back on the plane we discovered just as we got to the door of the plane to board that Dan needed to be changed. The flight people were great. We waited till everyone pre-boarded and laid him on the jet way with plastic bags and a pillow for his head. The wheelchair was long gone by this time so we couldn’t take him out. Mostly we laugh about this stuff but it can be tiring. Realistically if he was larger we could not do most of it.

Would it be nice to have help? Sure, but who is going to pay for plane and out of state travel? Who would go at Christmas? Where would that person stay? Having more supports would help some but is not the whole answer.

Dan has always been included in all we do including out of country travel. We could never have done many of the things we have done if he was a full size young man. Even now my back is not so good and I have to make decisions about what I can do so that I don’t put more strain on it than it daily gets. We have not had much respite for the past 8 years. He is on the Medicaid waiver so there is money just no one we’ve found to provide the help. We just found an agency that provided a person when he came home from the hospital. We had some respite a couple of afternoons and I arranged for some just recently as we were in involved in a church production. The respite worker never showed up, so we had to take Dan with us.

I don’t see that the system has changed much in the last 23 years and I think it’s realistic to think that we are not going to see any significant change in the near future. Even with changes there will not be the support people needed. We have to deal with what is currently available -- now -- while we continue our work to make things better for people with disabilities and their families.

In the meantime I love my son and enjoy being with him. He is truly a delightful person. We are trying to find our way to having an adult relationship with really no guideposts to go by. We are exploring residential options as has been our plan since he was younger. We will still want to have him involved in our family outings and travels and know that his small size makes it more likely that we can continue this.

TASH has not done a good job addressing this population of people with such profound disabilities. We need to have more conversations with families and learn to listen to each other. As a long time TASH member I fight for the dignity and rights of people with disabilities. As parent who lives it every day I know that sometimes we make hard decisions out of love for our children and not to satisfy any else’s agenda.

(From my good friend, Leslie Lederer, Kentucky TASH)

Kim Edwards is still Number 1

As of the January 7 NYT Review of Books paperback best-sellers list, the Memory Keeper's Daughter is still Number 1.

Hard to believe this - still NO review from the NYT.

Are they just being snotty about this?

Christmas with the pioneers

I love the Christmas holidays, the excitement leading up to Christmas Eve, celebrating Christ's birth, lighting the Christmas candle, Santa Claus, the special foods. It is all joy.

But this year, things got a little complicated. Oh, not the normal complications, although we did forget forgot to send letters to Santa by smoke mail. Still, that turned out just fine since Santa called to ask the kids what they wanted for Christmas. Nor was the major complication the fact that I roasted the hen at 275 instead of 350. Apparently I'm roaster oven dial-impaired. No, the chicken got done and I learned a new cooking technique called butterflying. And the presents got delivered after Santa left Peru, according to the internet Santa tracker.

No, the big complication was that after I finished my shower on Christmas Eve morning, we lost hot water. Completely. No hot water. Not even a trickle. A holiday is never the best time for a major plumbing disaster, but think about Christmas cooking and all the pots and pans and dishes! We pulled our our plumbing book, but couldn't figure out the problem. Our neighbor came over. He pronounced possible doom: a leak in the pipes under the concrete slab of our home.

But there was nothing really to be done because it was Christmas. So boil water is what I did. Water for baths. Water for dishes. Water to clean the floor. I started fantasizing about having one of those giant 18th century hearths with the huge kettle that kept the water boiling all the time. (Okay, I'm a realist. I know someone had to tend that hearth!)

Yet Christmas is a time if sharing. My friend Kari brought a housewarming gift, a corked bottle of the latest Wilmore 06, pleasingly hot. (It made a terrific rinse for the silveware.) And amazingly, even with boil, wash, boil, rinse, the dishes all got done and the kitchen looks rather neater than it usually does. Oxyclean helped with the laundry and cold water always works fine for the rinse cycle.

But best of all is how the hot water got fixed. I've had a hard time finding plumbers in the past who were honest and reasonably priced. Our neighbor recommended a friend who works with him, who plumbs. The friend gave us some helpful diagnostic tips, but does not do plumbing on the side. He gave us the name of a local plumber, who was booked. The local plumber gave us the name of his cousin, who was also booked. But the cousin asked some of the guys who worked for him whether they could do the job and one thought he could. This man found a little bearing inside the tubing in the hot water heater had come loose and he took it out. He also fixed my faucet and snaked my drain. All for about $80.

Needless to say, we have a new plumber!

Hmm, back to the old drawing board

I seem to have been thinking about writing a lot lately, but not actually putting fingers to the keyboard (pen to paper, hand to plow) . . .

So it is time to begin.

Again.

This is probably fairly common, but I'm amused nonetheless. My son has figured out that he wants to celebrate Hannukah (special food and presents every night), Christmas (special food and presents one day, but lots of them) and Kwanzaa (special food, special projects, and zawadi (a/k/a gifts)).

Holiday spirit, anyone?

Bill Penland died

Sweet prayer warriors, Bill Penland died yesterday morning just shortly before noon. I am so sad for his family, but happy for him. Many people came to follow God because of the way he lived, knowing that he was dying. Thanks for all your prayers.

Update on Bill Penland

Just wanted to let everyone know that Bill is comotose now. He was able to ride a bike on Saturday, tell his wife and kids how much he loves them, then he fell asleep and hasn't worken up. Bobbie asks that we ask God for the angels to come.