Welcome to Holland

My friend Leura sent me a piece by Emily Perl Kingsley called "Welcome to Holland." (Look it up; it's worth the read.) She thought I could relate to it in parenting my own son. Although the conditions are not the same, it is indeed something which touched me deeply. Asperger's and Down Syndrome are very different, especially in IQ's. But a parent's dreams for a child are the same.

Lately I've been working hard to stay tuned in to Sam's wisdom. Sometimes it's hard to hear, but that's because the noise of "normal" life gets in the way. When I really listen, I can hear and see it, and those days are my richest. I've stopped trying to always protect him, and started watching him protect himself. He's very good at it. I'm trying to see the world through his eyes, from his vantage point. It looks quite different than it does from here.

I used to feel the weight of my son's disability. Now I am lifted up by his uniqueness, his abilities, his wisdom, his humor... I'm lifted up by him. I'm saying goodbye to the old dreams that will never happen, and looking forward to the rest of my journey with this fascinating young man. I've grown to love my life in Holland with him.

Growing Up

If you're not me, don't read this, because it's boring. It just is. Wait...

For our birthday, we got up late, got a call from Morgan that made us laugh and be happy, ate fresh strawberries, mango and cantaloupe with cold juice, then went for a ride. With light gray clouds over our heads, we headed off to Solomon's on the water in southern MD and the sun came out right after we left. A beautiful hour's ride later we parked by the water, walked through the quiet town, shared a delicious roast beef sandwich and fries while laughing and sitting on a curb like little kids, later sat on the pier watching boats and talking, laughed some more, took pictures, held hands, and relaxed more than in ages. And we (yes, we) took pictures.

After a few hours we headed home. Once here, we found two bouquets of gorgeous flowers had arrived and a small pile of birthday cards from friends and family. We showed Sam our pics, laughed with him, then he wouldn't let me do yard work while he did it for me. Later we went out to eat a fabulous meal by the water in Annapolis, came home and decided turning 60 and 62 is rather nice, thank you very much.

If this is what it's like, I'm so ready to be old.

The Up Side

I'm depressed, and you're going to help me not be. Actually, all you have to do is sit there and read. Here's the crud. In three days, I'll no longer have a 5 in my age. Gag me. I miss my daughter who hasn't been able to come home since last year. The sun hasn't broken through the clouds in 69 hours (not that I'm counting). My autistic son got irritated with me this morning. I've had cancer for 10 freakin' years and I sleep close to ten hours per day, with no energy the rest of the time.

The up side? Well, I've lived ten years past my cancer diagnosis, which is a miracle since I never dreamed I would see 60. My daughter won a major award for her work and is teaching a class early summer before she comes to visit in June, and we talk @ 2-3 hours per week. The rain has watered my garden every day while I haven't felt well enough to do it on my own, so things are actually growing. My son showed me his final project grade after sharing not one single thing all semester: A - 100%. Unbelievable. And, I've had advanced cancer for ten years...and I'm still alive! Oh, and I get to sleep as much as I want since I work at home and need it.

Wait, why was I depressed?

"Facing" It

We got pretty angry at Sam last week, so instead of just yelling, we decided to take him out to dinner and a movie of his choice. It made no sense and it actually worked. We all had a great time and came home friends.

We also came home bruised and swollen. Well, I did anyway. Steve had his arm around me afterward as we walked since I was cold, but he and Sam thought I started acting silly, so they let me go ahead in my "weird dance." Except the weird dance was my falling in slow motion. Flat on my face on concrete. They were horrified to see me on the ground and not still walking, but I was calm. I just screamed bloody murder and cried for an hour with ice on my face. And I didn't get the ice cream cone Steve had promised.

I look like a prize fighter, the one who lost. There is parking lot gravel embedded in my face, my eye is nearly swollen shut, and if you like purple or red, my face is your dream. Amazingly, the pain is nearly gone. That must be a miracle. And nothing actually broke, unlike last time I fell on my face. (No, it's NOT a habit; it's been 20 years since I smashed my face and had stitches and a broken arm.)

I had a wonderful Mother's Dad as long as no one looked at me - great food, lots of laughter - except I refused to attend church where I'd have to say, "No he doesn't beat me." After all the previous delays for cancer, blood tests, illness, etc. I now have 10 days left to renew my driver's license. I plan to drive perfectly and not write a single check for the next 3 years. No way is anyone going to ever see that photo.

Hungry?

It's getting harder to laugh at this cancer crap, but I have to keep trying.

Have you ever felt like not eating? I don't mean, "Oh yuck, it's liver tonight" not eating. And I don't mean, "No thanks, I'm stuffed, no dessert for me" not eating. I mean "not eating for days and days because the thought of all food makes you ill" not eating. Yeah, I'm there.

I suppose it's a combination of my cancer (nausea and blood transfusions don't boost appetite), maybe a flu bug (my stomach is so unhappy, but the drugs can do that), and the 8' walk to the kitchen is just so darn tiring. I kid you not, by the time I get there, I have to hold onto the counter to stay upright.

I've looked at grocery and health food stores for pure juice. Not much is out there. Apple is pure, but I don't like it much. Too bad, I just drink it greatly watered down. Grape is pure, but is so sweet that I add more than double the water to make it palatable. (I think my taste buds have gone wacky - everything is SO sweet.) Then there's pure cranberry juice. Ever had it? It's @ $4. per quart, and makes your entire face shrivel up into a prune. But added to others, it's pretty good. That's it. No other pure juice is available. They all have water and sugar added in great quantities, plus scary things I don't recognize. I'll add my own free water and no thanks on the sugar.

Then there's the food. I bought a quart of beautiful fresh strawberries 3 days ago! I've eaten three. I promised Steve I'd eat them all before they go bad. Hope I don't throw up. One good thing is now when Steve grills a steak, he and Sam get to split it 2 ways, instead of 3. I'm unintentionally becoming vegetarian. Or maybe an" airatarian", since breathing air is all I seem to enjoy.

Steve and I go out to a nice restaurant for our birthday every year. (Yes, born same day) Does anyone have a good suggestion of what to do this year? I don't want to throw up on him.

The Garden

I worked in my garden today. And by worked in my garden, I mean I pulled weeds, including some huge ones that rival my own arms, and appeared two years ago. Last Spring wasn't such a good one for my garden. It wasn't such a good one for our entire family, having just said "goodbye" to our dear Ian, who died of cancer at 13. Today we celebrate knowing him, a year after his passing.

I'm actually encouraged that I was able to work for so long, nearly an hour! That's @ 50 minutes longer than when I began this year's work in early March. I'm pooped, and fine, if you're going to get technical about it, yes, I took one break. Okay, so I had a thought and came in to write and got a bit carried away, but I did go back! And the entire front looks like someone loves it again.

Steve is mowing (as I write) the back yard, the one full of small green trees that used to be called grass. A few years ago moss began to creep in - remember we live in "the wetlands." Last year we decided that 'earth knows best,' so I pulled any grass remaining in those areas and the moss is growing into a lovely carpet - one that needs no mowing!! For someone supposedly so smart, it sure takes me a long time to catch onto things.

I'd tell you about how I had to spend seven hours in the hospital emergency room yesterday and get two units of blood due to my total collapse and growing cancer, but right now I'm more interested in my garden. I'll be okay.

Oh, but my back is killing me from leaning over to pull those darn weeds. Leaning over to touch the earth used to be so much easier. At least I have my flowers, that grow up to touch me.

Get Real

This will be short. We attended an evangelical church for about 15 years. Good teaching, but the membership... well, it changed. We left last summer because we weren't considered conservative enough, didn't fit in, were looked at askance a bit too often, and found ourselves simply being quiet to avoid confrontation one too many times. That said, I think God is pretty darn radical. He sent His son to be birthed and raised by an unmarried Jewish girl, had him hang out with the dregs of society, then let him be murdered just as He was getting started. Yeah, that made sense. And thus He gave us a way to salvation. Real conservative. So who is it that doesn't fit in here?

Criminy, God is totally radical, and if you don't get that, then you have no idea who God is. Jesus, too, was a radical and didn't follow the rules. He made so many people mad, yet they were fools who really didn't know God. He is SO NOT what ignorant people think he is. I like Bill Maher, and I believe even HE is smart enough to get it. Someday.