Weekend with Jan [long]

[Guest guest]

Hi .. OK I have a lot of weekends with Jan.

In our family, we are all pretty independent and full of things we want

to do .. many of them not shared. This weekend was a good one.

Friday morning I took my wife to the airport for t a week-long trip to a

high school reunion and then on to a course on end of life care. Friday

night, Jan came to visit as is usual for her most weekends. We had

dinner together (breaded fish filets, which is something she loves) and

I include this detail because it si something she loves. I was able to

get her talking about the week, which is sometimes hard.

Saturday I got her moving relatively early at eight. By 9:30 she was

off on my suggested three mile hike up the hill in the park and back.

The incentive was that our best friends had invited her at 11 to go to

the little circus at the local mall. That means that I have to get her

bike on the rack and that will bike here and put his on behind

hers and drive to the end of the bike trail. Sadly, she isn't road

aware enough on our narrow country road to ride those two miles, at

least to 's satisfaction.

She didn't return until almost 5. At dinner (sausage, peppers, and

sweet onions) I was able to get her to tell me about the circus. It is

hard because with her small deficit from DS and her larger one from a

stroke almost ten years ago, I have a hard time understanding what she

says. It was good. I heard about the man and wife riding motorcycles

in a ball-shaped cage and about their kid doing it alone after them. I

heard about the many hula hoops, the trapeze, and even the snakes (the

only animals at the circus) which she didn't see but Carol (Dave's wife)

did.

She sleeps in a utility building (OK it has the family room in it which

she uses) behind the house. This morning I got her going again with a

promise of dinner out if she did a good hike. She did a GREAT one of

her own design .. about four or five miles and came down before it was

too hot.

OK .. I'm involved in my own stuff. I am completing a small garden shed

in the back yard and putting solar heat on its roof. I'm fencing in the

new fruit trees so the deer don't kill them. I am also grading the back

yard with a tractor once I get it cleaned up from construction and

putting in an irrigation system because we really live in a desert.

There were some complications as well. Jan has a stack of clothes here

that need to get to her place. She also had taken 10 DVDs out of the

library and Dad's rule is 4. The reason for the rule is to help her

control overdue fees which eat into her desire to spend her money buying

the DVDs the wants. So today she took six DVDs back on a trip I needed

to get more shingles. We also had her clothes in the car and went by

her apartment. She got out and ran up to the apartment, forgetting the

clothes. OK .. in a week or two I will get them there.

I talked to her about my out to dinner promise and offered popcorn

shrimp and garlic bread instead. She agreed to that. Nice very late

Sunday dinner. The lights should be off by the time I finish this, but

I may have to remind her on the intercom.

We talked about a lot of things. I had asked her to sort her garbage

into junk and recycle and to bag the first in plastic and the second in

paper. She had a long lecture (with questions) about why they don't

like plastic in with the paper. After the first discussion she had put

all her waste in plastic bags, so we had to talk about it again in more

detail.

Tonight, she maybe will re-bag things. I'll know in the morning. OK we

closed out dinner with an affirmation of things and a big hug.

Your child will be different. Your approach to your child will be

different. The dreams of a totally included child/adult by the usual

standards of job, independence, and inclusion along with marriage and

children will probably fade. That's OK. I've got something at least as

good in a much simpler person with dreams and aims, though different

from mine, are perhaps more easily satisfied.

Life is good!

Rick ... dad to 37 year old Jan

p.s. Dave and Carol were with us from the beginning. I was in

California when Jan was born in NY. They met me at the airport .. one

of them took my car keys and parking ticket and the other drove me to

the hospital where I got to see her after hours with a better view than

most Dads get. Their two girls are younger than Jan, but grew up with

her (next door) and are still friends in spite of vast differences in

their lives. In the years I was commuting to CA, I stayed with Dave and

Carol and was their cook. We still regularly have them over to dinner.

(Dave can't cook, and Carol loves not to have to do it)

pps People should understand how wonderful it is to have a child/adult

with DS. Yes there are challenges, but the rewards are up and risks are

down.