What's Next?

Took Rojo to the doctor for a camp physical. For a boy that never washes his hands, eats the least nutritious diet of anyone I know, doesn't exercise, etc., he is pretty much the picture of health. He hadn't been to the doctor, not once, since his last physical a year ago. In that year he's gained 21 pounds. In two years he's gained 36. At 15 1/2 years-old and 5 ' 8" he's still not even 100 lbs. He has a ways to go, but we're heading in the right direction. Every pound that boy gains, takes a good month off my life, I swear. What he'll eat, when and where is a full-time job.

Had three dear long-term friends over for dinner last week. They've known me since before I was married, before Woohoo, before Rojo. We were talking about "what's next" for each of us. I said I was just riding this lull I'm in, and not sure at all about what's next. "I can't really work, because I will always have Rojo to take care of when he's not in school, and anything else I do needs to fit in around that, I can never get him to fit in around whatever else it is I do."

"Obviously," they all agreed.

I did the math. Rojo has three more school years left. Three more years where for 9 months of the year he'll go to school at least most of the days. After that he'll be in some sort of transition program, but the chances that it will be M-F for full days are pretty slim. Then he'll be mine, mine, mine. I will work like a dog to get him some meaningful employment, but let's face it, it will not be full-time and will require my involvement.

STM tells me all the time he won't make it to 60. Woohoo is leaving for college in the fall. We have three elderly parents. Not to be morbid or pessimistic, but the fact remains, it is inevitable that I will be the full-time caregiver of a very hyper, differently abled person eventually.

All that goes into my thinking when people ask me, "What's next?" As most of my dear friends are, or are on the brink of being, empty nesters, I have come to accept that my path takes me elsewhere. True, STM may live a good long time. True, other angels are in our lives and will doubtlessly continue to come into our lives, and I will never be "alone." True, Rojo may be able to live in some sort of supported housing situation at some point. True, none of us really knows what's around the corner, we just think we do, and as I always say, "The only difference is special needs parents just know that they don't know."

True.

The question for right now is, how do I want to spend the next three years of my life? Writing? Re-writing? Volunteering? Cleaning up the same messes over and over and over? Re-decorating my house? Taking a class? Learning how to do something new? Sitting on my can playing Solitaire?

I don't know. And if I've learned anything, it's when you don't know what to do, do nothing.


* Photo from http://redpenconfessions

Score One for the Ladders

I just e-mailed two friends to tell them I took their suggestion (they had the same suggestion), that I watch and get properly hooked on the PBS show, "Downton Abbey." When I was in Philly visiting Terry, she, her husband Greg and I, started the series on Netflix, and worked our way through the entire first season. Then, Greg being all techy, hooked up his laptop to their fancy schmancy system and we were able to stream onto their big screen, a few episodes of Season 2 straight from PBS.org before, sadly, I had to go home. Plans are already underway for me to time my visit next year for the premiere of Season 3.

But that's not the point.

The point is two people that know me well, my tastes, my likes, my dislikes, all of that, recommended something to me, and I'm super glad I followed up and tried it. I had to e-mail them to thank them, and suggested they gloat for awhile in the knowledge that that their suggestion was heard, AND followed, AND appreciated. The big trifecta.

I would be so smug there'd be no living with me if people took all my suggestions/advice! And I'm full of it! Got all kinds of ideas of what people should do with their lives. I've reluctantly come to accept, however, that the struggle and journey is where the ju-ju is, and if we all went around following good advice it would be like playing "Chutes and Ladders," and getting all lucky cards and going straight to the top of the board via long ladders, never having to mess with a chute. Sure, you'd "win," but what would be the fun of it? You'd actually be bored and find the whole game a waste of time.

Winning isn't the point. The ups and downs are the point.

Still, I'm glad I took their "ladder," and am excited to see where the next ladder might take me if I allow myself to take it, too, avoiding the "chutes" my ego has in place. The ones that tell me I have to do everything the hard way. The ones that tell me no pain, no gain. The ones that tell me that surrendering is quitting, and that to let go means to give up. You know the ones.

Spread the Word to End the Word

I had lunch today with my friend Kerstin. She is a public high school teacher and she had an incident with a student using the R-word that was so upsetting (too upsetting for me to even recount), she was spurred to go home and spend the next four days creating this video. As she said, "It was a net gain."

She found the making of the video cathartic - and brutal. Hard to go back and look at all those pictures. Hard to go back there and look at all the heartache, hard work and heroism. Hard to go back. Period.

Her oldest daughter has different memories. Happy ones. Times that were brutal to Kerstin, are remembered as happy family times to her oldest daughter. "That's because we had scheduled grieving," Kerstin said. "We'd force ourselves to go out there and do 'fun' things, get our oldest daughter off to bed, then sob our hearts out."

Now Kerstin can grieve at her leisure. Producing this video helped her to do so. It also helped her to heal, which good grieving always does.

Top 10 Things Rojo Has Proposed Giving Up for Lent

10. Coke (which he doesn't drink)

 9. Carrots (which he doesn't eat)

 8. Taking a shower

 7. Brushing his teeth

 6. Making his bed

 5. Taking out the garbage

 4. Using a nice tone of voice

 3. Traveling to Europe ('nuf said)

 2. Hamburgers (which I'm forever trying to get him to eat)

 1. Vitamins

Lenton Vows 2012

Lent is a time of prayer, "fasting," and almsgiving. I've been mulling over what to do for Lent this year, and since it starts on Wednesday, I'd better get to gettin. I think what I'm going to do is "fast" from buying coffee when I'm out running around. I don't need the extra caffeine, I don't need the extra dairy, I don't need the extra expense, I don't need any part of it whatsoever, yet every single day I wrestle with myself over whether to "just pop in" on my way to ______, ________, or ___________. I think what I'll do this year is add up the average I spend per week on this nasty habit, and donate it to some cause that will feed starving people actual food, instead of whatever it is I'm consuming that isn't doing one single thing to "feed" me.

I also think I'll put one item per day in the Goodwill bag (might not actually go to Goodwill, but for me that is synonymous with donating). God knows there are at least 40 extra "things" lying around here, despite the fact I donate a huge bag at least once or twice a month. There's always more than we need, and that just ain't right. I'm all for having everything we need, but do I "need" 20 purses? 18 of which I haven't used in years/decades? Instead of doing some deep purge, I think I'll just look around the house mindfully each day, and ask myself, "What could be better used by someone else?""Who needs this more than I do?"

As for prayer, I am going to work on using my morning prayer time to empty my mind, not run through "the list." I've gotten better about not making prayer a fancy wish-making time, even basking in gratitude at times, but still, I have a long way to go in making it a time of listening, and not "speaking."

And, as always, we will not be "fasting" from saying alleluia at the Link house.

Alleluia.

Alleluia.

Alleluia.

Amen.



* Photo from http://www.turnbacktogod.com

I am at Hopeful Parents today writing "the other one." Thanks for joining me there!

love.

Lucky Iowa

Luke 17:21

"... nor will people say, 'Here it is,' or 'There it is,' because the kingdom of God is within you." (NIV)

So the other night while Rojo was eating his dinner, he reminded me that in a few short years we'd all be living in Anaheim, he'd be working at Disneyland, and I would never need to worry about missing him, because we'll live together forever.

"One problem," he said between bites. "Do they have heaven in Anaheim?"

"Heaven isn't a place," I answered, "it's a state of mind, it's within us - it's the part of us that's a part of God."

"No," he said, "heaven is in Des Moines."

Dearly Much

Had a great birthday yesterday, top 3, and am struggling to think of which ones beat it, so let's just go ahead and call it top birthday of all time.

We had our family gift exchange at 6:30 AM. I had little valentines for everyone and Rojo had made cards he was super excited to give. I'd helped him, but when it came to do mine, he wouldn't let me look, instead, grabbing the card and putting it in the envelope himself, then asking me to hide it so I wouldn't find it. He did not disappoint. He never does. Feels good to be loved dearly much.

STM had given me a dozen red roses over the weekend - wanting to beat the rush and making sure they didn't run out, then thought it was silly to hide them until Tuesday, so gave them to me early to enjoy, which I did. Nice to stretch it all out, I say. Birth "day" just isn't enough. I require a full week. STM also gave me a jigsaw puzzle, suggesting it might be nice to get back to that old past time of mine (and give Rojo back his iPad). Woohoo gave me really sweet and thoughtful gifts, too.

Kathleen made an early morning drop off of balloons, tulips (my fave), a bottle of yummy wine and running gloves which I'd asked for. NEHBM of getting what you ask for. Got the kids out the door and then STM and I took Flicka on a really nice walk, getting home right before it started to pour. He left, I had fun cleaning up and doing things I love like starting the dishwasher AND the washing machine at the same time, which never fails to give me a neurotic sense of joy.

Then I marched myself down to the closest Starbucks and redeemed my free birthday drink - grande mocha, full fat, with whip. Ran into our friend Tom there and enjoyed a visit with him. Came home with my drink, curled up in the chair-and-a-half with Flicka, got out the iPad and played solitaire, while taking phone calls and texts from friends far and wide wishing me happy birthday.

Got picked up at 1:00 by Nancy, who gave me some lovely (but too personal to mention) gifts, and drove me to have lunch with Kathleen and our friend Diane - the birthday group. We lingered so long that I only had a little while to freshen up before going to dinner with STM! We went to our favorite haunt, ordered exactly what we always do, sat in our favorite booth, and had a leisurely, delightful meal and conversation.

Came home to a house with no Woohoo, no Rojo, no Flicka, and did what anyone else would do under those circumstances - went right into the DVR recording of "The Bachelor" from the previous night.

Just a day filled with love and special people from beginning to end. Thank you for the calls, e-mails, texts, and Facebook messages! I love you dearly much!

Rojoism of the Day

So it must be all the probiotics in the $50 + worth of frozen yogurt the boy eats a week, but let's just say, he's having no problem keeping things "moving." This weekend he went into the bathroom for the second time that day to do you-know-what, and came out saying, "Ahh... that was great. Now I'm not complicated."


* Photo from http://www.mommyshangout.com

Letting Go

So, had a great trip to Philly to see Toeless. As an extra bonus, I planned my trip to route through Minneapolis/St. Paul with a long layover. My agent lives there, and we were able to have a delightful two hours together catching up, laughing, talking shop and just enjoying each other's company. Super fun. She is full of good ideas and determination to get this book "out." If anyone can, she can! Go ahead and light the Marys, though, if you're so inclined. "Let it be," is my prayer for the book. Whatever "be" is. I no longer MUST have it published to consider myself a "real" writer. By the same token, I am no longer holding it back energetically because I'm afraid. I've let it go. And it feels great.


Terry and I had 3 full days together. We slept in, drank excellent coffee from carefully selected mugs, went for long walks, showered about 2 PM and then started Wine O'Clock by 5 (although in four nights we didn't even finish 2 bottles). Really, it's just impossible not to have fun when you're with Toeless. Impossible. I laugh just thinking about her. And laugh we did. At one point we had that intoxicating can't catch your breath, can't stop howling, tears pouring down your face and snot running down your nose kind of five minute laugh. Your basic heavenly experience.

We did have plenty of HDRs, though, too, it wasn't solid hilarity. We actually got into it immediately when she picked me up from the airport, and she said, "It's amazing what happens when you stop white knuckling it." She was talking about business, clients, making everyone happy, and I thought about how far I've come in being good with the outcome of my book.

Not enough can be made of the fact that when I met Terry 17 years ago, she worried all the time about two things: her weight and money. Year after year during my visits these worries were ever-present, until a few years ago she consciously decided to stop fixating on her weight. She hasn't gained a pound since doing so. Then she let go of her anxiety around money - the scarcity mentality - gone. Poof. Her expenses have, and will, only go up (she has a son going to NYU in the fall). Her fear that there will not be enough, however, has only gone down.

You can read all the self-help books, listen to all the experts, know that it's true, but to behold it for yourself when you see a loved one profoundly lighter, is powerful.

Perfect Understanding of Himself

Lots of things to tell you, all in good time. About my trip to Philly. About my planet-imposed blogstipation. About my feeling like a big chapter is closing, and another exciting one is opening up. About turning 49 next week. But for now, we are all in need of a Rojo-ism, am I right?

At Rojo's school he has a class called "Support." This semester they are going to help the kids better understand their own diagnosis, learn to self-advocate and form a written body of work they can pass on to future teachers, to help them work effectively with them. Rojo has three eligibilities: ASD (PDD-NOS), Communication Disorder (long story why I wanted him to have that, on top of ASD), and ADHD. He knows in no uncertain terms he has ADHD. He can tell you all about how hyper he gets without his meds, how it makes it hard for him to focus, how he's easily distracted, etc. He knows that learning is hard for him. He knows he's in a class where everyone needs extra help. He knows he's going to camp this summer where again, everyone has "something" and needs extra help. We've talked about Asperger's, classic autism and PDD-NOS and how that makes up autism spectrum disorder, which he has.

Every time it comes up or I bring it up, he jumps off the topic immediately. I've always taken that as my clue that he doesn't want to talk about it, or is comprehending it as best he can at that particular point. But because there is going to be quite some discussion/work on this at school, I brought it up again last night.

"Rojo, you know how we've said you don't exactly have autism or Asperger's like _________ or __________, but that you do have autism spectrum disorder? Well, you're going to learn more about that in Support, and learn how to advocate for yourself, and help your other teachers understand you better."

"Will we go around the room and tell what we have?" he asked.

"I'm not sure."

"I want to. I want everyone to ask me what I have, so I can tell them I have optimism!"

Need I say more?



* To order your own IEP T-shirt, click here.

Oxygen Mask

Here's a neat Website you should know about. I may or may not get some ass kissing in this particular post I'm sending you to. You've been warned. Oxygen Mask

love.


And speaking of oxygen masks, I'm off to Philly tomorrow for my annual oxygen mask-a-thon with Toeless Terry. See you on the other side!