Wednesday, December 23, 2009
I mean, WHERE do they come from?
and, WHY do they grow faster than any other hair on my body? One day, nothing...the next a big ol' black one an inch & a half long.
WHAT's the deal here?
Post-40 gravity is bad enough...but I have to be hairy too?
Wednesday, August 12, 2009
I will freely admit that parts of the current system need work. Even the best of private health care plans can be a challenge to navigate and sometimes fail the patients who need them the most. I will also admit that I have been blessed to have had decent and consistent coverage offered by my various employers thus far in my lifetime. Those admissions made, I just don't see how the plan in front of Congress can help fix what ails the system.
I thought I would steer clear of this topic on my blog because, well, it's just something I'm a little edgy and passionate about, but today I read something that really frosted my flakes...
Health advisor (and possibly eventual Health Care Czar) to the president, Dr. Ezekiel Emanuel has been a key proponent of this legislation and it's important to know his thoughts. He said this in January of this year: "When implemented, the complete lives system produces a priority curve on which individuals aged between roughly 15 and 40 years get the most chance, whereas the youngest and oldest people get chances that are attenuated."
My kids are all under 15. Hubby & I are over 40. Where does that leave us? Yup, outside the priority curve. Should the ER have denied my then 2 year old the surgery he needed when he shattered his elbow? Or my 4 year old the stitches she needed when she split her pretty little head open? Or my husband the medication he needs to keep his diabetes in check?
In November of 1996, that same individual is quoted as saying: "Conversely, services provided to individuals who are irreversibly prevented from being or becoming participating citizens are not basic and should not be guaranteed."
In November of 1997 I gave birth to a beautiful baby boy, our second child. We named him Patrick William; Patrick because he was scrappy lookin' and William after his father & great-grandfather.
In February of 1998, my husband and I were told to prepare for the worst...the loss of our son. We were told that his chances for survival were slim, but if he made it past his first birthday, then we could expect little from him as a participating member of our family. We were told he'd never walk, communicate, or care for himself. We were told that if we weren't planning a funeral, we should look into long term residential care in a "facility" for him. In other words, he would never become a "participating citizen."
In August of 1999, he underwent the same battery of tests he had 18 months before. Guess what? The 'extreme' brain damage diagnosed earlier had largely repaired itself and he was a wonderful, funny little boy with an inquisitive, teasing nature...who was learning to walk!
In the years that have followed, we've received as many diagnoses and prognoses for him as we have had specialists who poked and prodded. "They" call them "conditions" or "disorders" or "syndromes"; we call them "bonus features." (EVERYone has those, it's just his are more obvious and have names.) It doesn't really matter what the labels are, but I will share them with you: profound deafness, autism, spastic diplegia cerebral palsy, behavioral disorders, impulse control disorder, & developmental delays. He's had several corrective surgeries, numerous consultations with specialists, various therapeutic interventions, and lots of physical therapy.
In September of 2007, he figured out BY HIMSELF how to adjust the settings on our DVR--including closed captioning.
In October of 2008, he taught his teacher how to insert photographs into a power point presentation.
In November of 2008, he turned 11 years old. He asked for a chocolate ice cream cake with blue frosting and yellow candles. He got them.
In April of 2009, he wrote a hilarious book about a typical day in his life which revealed his unique sense of humor.
In June of 2009, he mastered the video & slideshow editing program on the family computer. He has produced a variety of DVDs--complete with disk menus, titles, ticker bar text, soundtracks, snazzy transitions and scrolling credits--that we play on the family DVD player.
It's August of 2009 and he's eagerly awaiting his return to school. He communicates with us through American Sign Language, he takes great care of himself, plays with his four siblings, enjoys helping with family chores. He identifies strongly with his fellow Deaf people and helps others learn to sign. He is an avid rule enforcer. He uses technology in incredible ways. Last week, after a year of recuperation, he traded his wheelchair for a walker and is making TERRIFIC strides toward walking on his own--again!
I can't WAIT to see what August of 2010 will bring for him. He is full of surprises and accomplishments and thoughts and plans...and we are only just beginning to scratch the surface of what he can or will do. We have NEVER set limits for this kid, rather we've let him find his own way and find his own boundaries. We have always allowed him to be our child first and our "bonus feature" kid second. Why should we change that course and allow someone (or someTHING) else to make those choices for him?
I'm not going to tell you that life with Patrick is easy. It's a day by day adventure. But life without him would be impossible. Sadly, I think that is exactly what Dr. Emanuel has in mind for families like mine. God gave our family this amazingly intrepid boy for His reasons...and the power to give or take should ALWAYS stay in the hands of God and NOT in the hands of ANY earthly government.
Wednesday, July 8, 2009
Several are simply succinct ways of stating things we *know* but forget in the muck & muddle of day to day living. I've found 'em pretty encouraging. Here they are, so you can join the fun:
1. Life isn't fair, but it's still good.
2. When in doubt, just take the next small step.
3. Life is too short to waste time hating anyone...
4. Your job won't take care of you when you are sick. Your friends and parents will. Stay in touch.
5. Pay off your credit cards every month.
6. You don't have to win every argument. Agree to disagree.
7. Cry with someone. It's more healing than crying alone.
8. It's OK to get angry with God. He can take it.
9. Save for retirement starting with your first paycheck.
10. When it comes to chocolate, resistance is futile.
11. Make peace with your past so it won't screw up the present.
12. It's OK to let your children see you cry.
13. Don't compare your life to others. You have no idea what their journey is all about.
14. If a relationship has to be a secret, you shouldn't be in it.
15. Everything can change in the blink of an eye. But don't worry; God never blinks.
16. Take a deep breath. It calms the mind.
17. Get rid of anything that isn't useful, beautiful or joyful.
18. Whatever doesn't kill you really does make you stronger.
19. It's never too late to have a happy childhood. But the second one is up to you and no one else.
20. When it comes to going after what you love in life, don't take no for an answer.
21. Burn the candles, use the nice sheets, wear the fancy lingerie. Don't save it for a special occasion. Today is special.
22. Over prepare, then go with the flow.
23. Be eccentric now. Don't wait for old age to wear purple.
24. The most important sex organ is the brain.
25. No one is in charge of your happiness but you.
26. Frame every so-called disaster with these words 'In five years, will this matter?'
27. Always choose life.
28. Forgive everyone everything.
29. What other people think of you is none of your business.
30. Time heals almost everything. Give time time.
31. However good or bad a situation is, it will change.
32. Don't take yourself so seriously. No one else does.
33. Believe in miracles..
34. God loves you because of who God is, not because of anything you did or didn't do.
35. Don't audit life. Show up and make the most of it now.
36. Growing old beats the alternative -- dying young.
37. Your children get only one childhood.
38. All that truly matters in the end is that you loved.
39. Get outside every day. Miracles are waiting everywhere.
40. If we all threw our problems in a pile and saw everyone else's, we'd grab ours back.
41. Envy is a waste of time. You already have all you need.
42. The best is yet to come.
43. No matter how you feel, get up, dress up and show up.
45. Life isn't tied with a bow, but it's still a gift.
Now…which one speaks to you??
Sunday, May 3, 2009
Watching him, the doctor and I had a moment of shared mistiness as we talked about how far has come....and how easy it is to see that we have only begun to scratch the surface of his potential. She's been with us from the start, has shared our frustrations, our concerns and has helped us interpret the news as it has come--good, bad or indifferent. She has been a blessing to our family, treating & caring for all of my kids. Often, I have wondered what she thought of how we are doing and where he has been going. You know, we muddle along the best that we can, doing the best we can with what we have and what we know at the time. There have been times when we don't think we know much or are doing much...I think this is true for all parents, not just those of us who have bonus-feature kids. It was a rare treat to get a glimpse of her thoughts and pleasure at his remarkable achievements...and to share a moment of overwhelming "WOW! Who thought we'd see this?" with her.
Heck, as I type this, he is peering over my shoulder, reminding me to write about our cats--Indy & Dakota--as well as his school, MSD. He has made such wonderful progress over the last year that they have invited him to stay in the school dormitory part-time next year! Many of his friends were offered the opportunity beginning this year, and he has been asking when it was his turn...but the school wasn't sure he was ready. NEXT year, he'll give dorm living a try. Whoo hoo! Yesterday, the quarterly MSD Bulletin magazine arrived in the mail...he hasn't set it down and has worked his way through all the articles. LOL. He's soooooooooo very proud of the MSD graduate who signed with Towson University to play football!! As for me, I'm delighted to see him identifying soooooo strongly with successful deaf people, with his peers, with his community.
This is a loooooooooonnnnnnngggg rambly post, mostly for the sake of saying THANK YOU GOD for this boy who is teaching me so much about the possibilities that exist if we don't allow ourselves to fall victim to limits imposed on us by others.
Thursday, February 5, 2009
There I was, snug in my rented bed...dozing fitfully and nightmaring about the coming day...
First thought...doesn't *sound* like the alarm clock...
Second thought...FIRE ALARM!! (in a hotel--aaaaahhhhhh)
Third thought...but I'm not cooking!!
So I grabbed my coat, threw on my snow boots, grabbed my purse & my room key and split. Down the stairs. Now you know how well stairs and I get along, so as you might guess, rousted from my bed, freaked out and wearing boots. Yup...took a tumble down about 4 stairs. But hey...I was going that way anyway, right?
Get outside to discover that it's a balmy, breezy 17 degrees. LOVELY. Guess I'll go sit in my car.
That would be nice, but since I left my car keys in my room...impossible.
So I take a perch on my car's hood (sorry, baby!) and hunker down. I take a peek around and realize that everyone around me took the time to get dressed. No wonder everyone is avoiding me...
So there I am, hair every which way, wearing my glasses, freezing my hiney off and WEARING MY JAMMIES. (Thank God for long flannel nightgowns, but still!)
It's then that I realize that I really need to shave my legs.
A kind fellow displaced person invited me into her car to stay warm while the fire department cleared the building. (Shout out to Donna---Thanks so much!! I'm not sure I would have invited me in, scary as I looked!) Building cleared and back we went.
Apparently, the culprit was not through with us yet! I had just gotten warm again, ready to hop in the shower (gave up on getting back to sleep) when the FIRE ALARM went off again. Two seconds later and I'd have been soaking wet, freezing...but NOT in my jammies (learned that lesson!)
Oh yeah, we're off to a GREAT start today! (Thinking this is NOT a good omen!)