I want to wear blue wings and soar

above the screaming

tantrums of today

I will take you with me

(hold you)

as we gaze down

upon whispery earth

at tiny beings

scuffling about

checking their clocks

and bank accounts

Ah,

the life of a bird

who does not love so much

that it hurts

 

 --LWK

 

 

 

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I wish I was fine

It’s like my brain

is doing a freakin’ crime....

 

From a rap by a child, age 11

Monday
Aug272012

Wish List

"I grant you 3 wishes," hissed the genie.

"Only 3? Can I use one of my first three wishes to wish for more wishes?" the poor fisherwoman asked, frowning. "I have a lot of needs."

"You can wish all you want," snarled the genie. "But you'll never get everything you need, so wish carefully."

*****

What do you most wish for in your quest to--let's put it bluntly--save your child's life? Please--send in your wish list! Either add to the comments here, or post it on the FB page!

Well, here goes mine:

Wish #1: Certainly, the obvious: Money. I just read an article in People Magazine (my go-to for junk-reading--I LOVE it) about a televised family trying to save their child from autism. They are grateful that they have the funds to see the good doctors, therapists, etc.  Not all of us have that.

Wish #2:  Excellent doctors who actually believe that PANDAS and Lyme Disease exist and that my kid's mood, sensation issues and fatigue are not caused by his inability to add 47,314 and 98,039 rapidly in his head.

Wish #3:  Family support--outside family, inside family, spousal support, if one has a spouse. We need emotional help. And if one can't get it, one absolutely must buy it--get thyself to a therapist. Because you just can't go it alone in this battle. The stress alone will bring you down. (Hey--just read an article that says probiotics help with stress...check it out.)

Wish #4:  A genie to bring a healthy dinner every so often--even to freeze, because there are days when my husband and I are both working and the kids are screaming, or maybe they are their sweet selves but ravenous, and we just don't have anything to put on the table. Note that I wrote healthy. We can do the spaghetti thing ourselves. All unhealthy carbs. So much for going gluten-free or white-flour free even. My kids don't eat it.

Wish #5: Take my kid.  Really--and please! Take my kid out of my house! Either one. Because I have to keep the 2 of them separated when my son is in a flare, which is often (like, almost daily.) My two chickadees used to be the best of friends, used to play with the stuffed monkeys we bought at the Bronx Zoo together for hours. It was soooo cute.

Well, folks, cute is over. You only need to take one because you don't want them together. What often happens is that my husband and I each take one kid and make for the hills. Therefore, I don't get time with my husband, which is not the recipe for a good marriage. The funny (and good) thing is--my son can go out with friends and you'd never know he has Lyme or PANDAS (until he gets a little silly--kinda ADHD behavior)--he saves it all up for HOME. He's clever and charming and smily and sweet. Enjoy! So, take my kid--just not permanently. Cause I do love them both.

Wish #6: Genie--I wish for someone to do my laundry!

My daughter is a girl who likes clothes. And doesn't like putting them away after she wears them for ten minutes. Need I say more?

And both kids leave socks all over the house. It's taken me a while to learn not to buy cool socks, but to purchase about 18 pairs of identical white socks for each kid. Someday, I'll be able to get rid of my pillowcase of unmatched socks. New problem: the socks for each kid are starting to look alike. And my son's white athletic socks are growing in size and will soon be identical to those of my husband. Not a big problem, really, when compared with PANDAS flares. It's just that sorting clothes socks. Scuse the language.

Wish #7: Show my dog some LOVE. By walking with him, running with him, hopping with him till he drops. Because he's a stress-barometer and when he's stressed, he looks me right in the eye and urinates on the floor. He's hyper, he's cuddly, he's 3 years old, but he's no superdog. 

Wish #8: Genie--be that mirror, mirror on the wall who tells me that I'm better than OK.

Please remind me that I'm doing everything I can, that it is ENOUGH, even though there is no cure that meets every child's needs and if I don't keep searching, no one else will help, and my child's life depends upon me and I mustn't ever stop because he's the best little guy in all the world and someday, he'll be better and happy and he's so darn gorgeous and articulate, he could be a great spokesperson for PANDAS and Lyme, or a movie star or a Broadway singer or a firefighter or a scientist or a horse farmer or whatever he wants, as long as we keep him ALIVE today--so Genie, please stop people who want to criticize in the guise of giving advice and without reading up on PANDAS and Lyme--and tell them to stick it in their own ear--and have them instead pat me on the back and make me feel good for five minutes. I need a full bucket. It takes a lot more positive talk to fill a bucket and only a few negative comments to empty it. That's why I love my FB PANDAS support groups. Genie, you did give me other PANDAS and Lyme parents for support.

Wish #9: Sleep. Perchance to...actually rest?

Today, I dreamt that my husband woke me up. No, it wasn't romantic. We were staying over at my inlaws' and I knew he had to get home to work. In my dream, I told him I'd have breakfast in the car. I just wanted a few more minutes of sleep. I'd gotten up early because of that darn dog who needed to go out. Just a couple of minutes after my dream, or maybe it was an hour--you can never tell with dreams--he really did wake me up.

Wish #10: Take me away! And not to a Calgon bath. Make it Bermuda, Venice, Santorini, New Zealand, even upstate New York, LBI, Montauk or a weekend trip into the city. I need a vacation--a solo (maybe with the husband) vacation--without worrying about my kids. I have learned from my inlaws that one never stops worrying about kids--they worry, worry, worry about us and I have to say, that although I'm not used to it from my side of the family and sometimes feel that it's too much, it also feels good, because that's how much they love us. I guess it's not possible to leave my children for a few days and not worry about them, but I have never had the chance to figure this one out, since I've never had the chance to leave them!

Last weekend, we went out with friends of ours. First time we'd been out since...(ummm, hiding head,) May!? They have teenagers--truly wonderful ones--and we left our kids with their kids and had the best night we've had in...well, the best night we've had for a very, very long time! 

Living with and saving a child who has a chronic disease is a challenge. Oh, boy, is it. But there ARE things that a wonderful genie can do to alleviate some of the stress. What would make your life better? Ice cream?

 

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