Thursday, April 30, 2009

THANKFUL THURSDAY

[1] Boy am I thankful that I've never had poison ivy before and that I have a contained "infection" because it's a real pain in the.... arm -- which is where I have it. Must have picked it up with the garbage during our beach clean-up on Earth Day last week. But, seriously, I'm thankful it's a very VERY mild case, that my daughter didn't get it, and that it seems to be receding already (knock wood). I'm also glad they make calamine lotion with anti-itch cream now too! I'm in the pink! Yeah!

[2] I'm thankful to be back on my "normal" schedule with the kids in school. Now to motivate myself again to get moving on the home improvement projects that STILL need doing around the house (I mean, what am I waiting for.... Extreme Home Makeover to call? LOL)

[3] I'm thankful for all the improvements and advances we're seeing in Brian and Michael, post-tonsillectomy/adenoidectomy. Teachers, therapists and parents (us) have all noted a big difference in their ability to attend, participate and follow directions and in the frequency and articulation of their speech. We also noticed a significant increase in happiness (if it's even possible to be more happy than they already were)! It seems like they're going through their day with their eyes wide[r] open. Definitely worthwhile after all! Hooray for Brian and Michael!

[4] I'm grateful to have been graced with these beautiful little boys in my life. We just celebrated their 4th birthday this week and my husband and I could not be more thankful that Brian and Michael were gifted to us. I've never received a more beautiful and giving gift!

[5] And, I couldn't say that (#4 above) without recognizing my beautiful Olivia and how blessed I am to have her in my life too! She is my soul mate! She's great company, an interesting conversationalist and we love doing the same kinds of things together. (Both creative, tree-hugging outdoors[wo]men!) We're planning a summer full of fun including kayaking, snorkeling, boogie boarding, sand sculpting, bike riding, zoo-ing and much more. I can't wait... I'm so glad I got her as my daughter. I definitely hit the jackpot.

[Bonus Thanks] I'm thankful that my sister spurred me to start walking in the morning (and I spurred her). Though I am reluctantly dragging myself out of bed at 5:15am to do it, that happens to be my most favorite time of day (once I get going) and I end up feeling great all day long knowing I've already fit something good for me into my day. Thanks Patti!

Wednesday, April 29, 2009

ANGELS AMONGST US - Volunteer Parent-Members

In a world where most people move at break neck speeds and never stop to smell the roses, let alone help another human being, I sometimes find myself searching the crevices and cracks of my life for a helpful soul I can call my next angel. Certainly, I appreciate the lady who let me pull out of the gas station driveway and into traffic ahead of her when the light changed -- even though she could have just hit the gas and let me wait until she and all the other cars had passed. I'm certain she had her own time-constrained agenda at 8:15 am on a Wednesday morning. And, she couldn't know that I was late getting the boys to school [again]. Sadly, I couldn't even thank her properly beyond a friendly wave as I quickly pulled in front of her. No doubt, she let me in without giving it much thought. That's usually the way angels operate! I also appreciate the lady who held the door for me at the boys' school when she saw me struggling to open it with my teeth (or elbows given all the swine flu germs circulating about) as I held tightly to the boys' hands. God knows I could not let go of their hands before I get them safely into their classroom lest they run off to join the circus or get onto the elevator unescorted ending up in the parking garage (entirely possible). At least I was able to say a proper "thank you" to her.

St. Theresa is the saint of small ways which encompasses these small but kind gestures. At least Theresa was sainted after a lifetime of performing small but very good deeds. I'm not sure what kind of recognition my two "small ways" angels above will end up with. Every gesture, no matter how small, should be recognized and acknowledged, if not with a blog post then, at the very least, a sincere "thank you" at the time the gesture is made. But, what about the people who make grander gestures by giving of themselves to help others even when they're already torn in 100 different directions with their own lives? In the past, I've dedicated my Angels Amongst Us post to professionals who choose careers helping children like mine... I do find their dedication and commitment amazing. But today, not to detract from those professionals, I'd like to dedicate this post to those who volunteer their time to help others in need... without the benefit of pay!

Two women come to mind, both of whom happen to have children with special needs and yet still choose to volunteer their limited time despite an otherwise full plate. Today's angels are Lisa and Cathy.

In addition to being the Vice President of the Parent Association at the boys' school, Lisa is a parent-member of the Committees on Preschool and School-Age Education (CPSE & CSE) in her home school district. She undertakes these roles for the sole purpose of being involved and helping others like her -- who have a child with special needs -- maneuver through the educational systems as smoothly and as beneficially to their children as possible.

"Cathy" -- not because it's her name but for because I cannot pronounce, let alone spell, her real name -- is the owner of Fox's Pizza Den in Oceanside. Not only does she run a family business with her husband, where she happily accommodated my children's post-tonsillectomy dietary needs (in addition to meeting our usual weird "When-Harry-Met-Sally" ordering specifications)... Like Lisa, she also volunteers as a parent-member of the Committees on Preschool and School-Age Education (CPSE & CSE) in her home school district.

A parent-member is a legally required participant in the committee on preschool or school-age education that helps identify how the school system will address the educational needs of a child with a disability. Though the parent can decline participation of a parent-member, generally, this person is there to provide moral and informational support on behalf of the parent and from the parent's point of view. Most parent-members are themselves parents of children with special needs and have been through the CPSE/CSE process before. As such, they can ask pertinent questions, identify issues and make suggestions without the emotional stress and pressure usually felt by the parent of the child in question. They are an invaluable resource there, invariably, to help other parents make more informed educational decisions for their children. To give back to their community and members of their home school district.

Neither Lisa or Cathy receive any financial reward for the volunteer work they do. However, I know that while both are recognized and appreciated by their [paid] colleagues/committee co-members, I'm certain their efforts are sustained by the gratitude they receive from the other mothers they serve so well. Thanks to you both for being such a shining example of how Angels Amongst Us live and give on a daily basis. You are both an inspiration to me.

Monday, April 27, 2009

DRIVING DOWN MEMORY LANE

I drive a lot (for a non-commuter)! I log 52+ miles per day during the week just dropping off and picking up the kids from school. Most of that is getting to and from the boys' school and almost every day I choose a different route from the day before in an attempt to avoid traffic and arrive as close to on time as possible (which doesn't ever happen). Today I took the Nassau Boulevard route -- which happens to be my favorite. Unfortunately, I don't take it often because, in my mind, traveling the single lane through Garden City seems to take longer. As we all know perception is reality. So, if I think it's taking longer -- which means I think I'll be getting the boys to school later -- then I'm stressed out during the typically 45+ minute drive. Having timed it, the difference is negligible and fully dependent on the lights and trains and traffic and exact departure time -- things that are entirely out of my control -- just like all of my other choices.

So, there I am on the Nassau Boulevard route. I pass the school and ask the boys if that's their school.... "NOOOOOOO. Dat no my 'chool Mama!" I pass Echo Park and we talk about how there's no water in the outdoor pools yet and how much we love swimming in the summertime and I recall, in my mind, swimming laps there in my younger days. I stay in the left lane of the "bumpy road" where the higher side streets pass through the median and make the drive like a roller coaster and we say, "WHEEEEEEEE" laughing with every bump. As we pass through GC proper, I can't help but fondly recall the nights I spent at what used to be The Chop House and another bar we visited during college breaks with my dear friends, Susie Pratt and Valerie MacLeod (these were their stomping grounds). And, even the turn off to Adelphi where the boys attended TOTalk, their first pre-school experience with Cindy, makes me smile. Then, I come to Stewart Avenue. And, suddenly, I feel like I love Stewart Avenue. It's got some of the grandest houses in Garden City. Majestic and old and beautifully restored. And, that's when it hit me. I love cruising Stewart Avenue because it reminds me of Ward Parkway in Kansas City. Same wide street. Same grassy median. Same majestic, old homes. For me, gliding down Stewart Avenue brings me back to the 3 wonderful years I spent in Kansas City surrounded by great friends and working the best job I ever had (besides the one I've got now as a stay at home mom to my beautiful kids)!

Then it dawned on me... The entire Nassau Boulevard route is like a wonderful drive down memory lane. And, I realize, I often choose my driving routes specifically to reminisce and remember happy times in my past. For years my father insisted that I should turn off Peninsula Boulevard earlier and cut through Rockville Centre to get home quicker. But, I never do. Today, I realized that -- besides not agreeing that it's faster -- I love that last strip of Peninsula where the guard rails rise up with the road as it passes Tanglewood Preserve with the lily-padded lake on my left and the woods on my right! It totally reminds me of driving with my cousins and friends in Eddie Martorelli's green Malibu on the back roads of Connecticut when I was 16. It makes me smile every time! Just like The Chop House and Ward Parkway and Echo Park do.

So, this morning I decided it's worth the extra 5 minutes I think it takes to drive the Nassau Boulevard route in the morning. I'm hoping the conscious decision to drive down memory lane outweighs the inevitable stress involved in my non-commute each day. Now that I'm aware of the reasons behind why I enjoy that route so much, I hope to be more mindful of it. I'm sure this will change my attitude to one of pleasure and gratitude, relieving me of the daily stress of choosing a route and making it even more fun to take a drive down memory lane.

Thursday, April 23, 2009

Down Syndrome Awareness - Help With Parent/Child Support Group

I'd like your help. I have some questions for all of you parents out there like me -- those with children who happen to be blessed with an extra chromosome. I've taken the first few steps toward starting a local parent/child support group for parents like us in my area. I want very much for the experience to be a positive, educational, supportive and proactive one for all involved. So, before I pull the proverbial trigger, I'd like to know from those of you who belong -- or don't belong -- to a parent/child support group what you have -- or wish you had -- in your group (if you had one).

Please free-think about this but also think about some of the topics I've included below and share your thoughts by posting a comment. If you'd prefer to email me rather than posting a comment, please feel free to do so at (this is going to be cryptic to avoid spamming, God knows I get enough of that): marshall then hagan, all one word; then the at sign in the circle; then verizon dot net. Also, please remember to leave me contact info somehow -- email or blog address if you're comfortable doing so -- so I can get in touch with you with questions and/or express my appreciation.

Thoughts On:
- Meeting location (public, private home, outside, meeting room etc.)
- Meeting time and day (afternoon/after school, evening, Weekday, Friday, weekend etc.)
- Meeting frequency (monthly, weekly, bi-weekly, quarterly etc.)
- Children Included (no babysitters required, kid-activities included, or time away from kids)
- Variety (shake it up with location, kids/no kids, day, time etc.)
- Speakers/Topics for discussion (open/planned "experts/pros" or life-experienced parents etc.)
- Meeting/Group Purpose (share resources, support, advocacy, activities etc., camaraderie)
- Friend-in-Need program (Welcome Kits and parent-to-parent to lend support)

- Free-Think: what does your group do, location, time, topics, # of parents, kids too? etc.

The ball is already rolling so I'd appreciate your thoughts as soon as possible. Looking forward to receiving lots of great feedback. Thanks, in advance, for yours!

Wishing You All The Best,

maggie

THANKFUL THURSDAY

I've said this before but it warrants repeating... Some days are harder than others to be thankful. But, those are the days where being mindful of what I've got is the only thing that lifts my overburdened spirits back to their rightful place... Today is one of those days, so here goes:


[1] I'm thankful for the husband I have, that he is the man I chose to marry, and that we are here, still standing together and, most of the time, still laughing at our trials and tribulations on a daily basis. Honestly, our day to day lives can be a bit tough but everyone has their burdens to bear and mine would be harder without this man to share my life -- and burdens -- with. I'm sure I'm just as happy as the kids when his car pulls in the driveway and we all think -- if not scream -- "Yeah, Daddy's home!


[2] I'm thankful that I can still and always manage to hang on to the notion that SOMEDAY I'll be able to squeeze in some exercise time, lose some weight, and maybe feel and be a healthy person again. I am living in a body that does not reflect on the outside who I am (or was or want to be) on the inside. It's a constant mental and physical struggle to be the physical me that I am. That's not good, psychologically or physically. Still, I do recognize that my time will come again. I KNOW it! And, that hope shines bright in my future and is what keeps me going. (Rereading that, it sounds sad but it's really not. It's just me having a bad "me" day and recognizing that tomorrow will be a better day!)


[3] I'm thankful that Miss Molly Box, our still newish dog (it's 3 months already), has finally, pretty much stopped having accidents in the house and has also pretty much stopped chewing the kids toys. Yes, we have to be on top of her but it just seems to have gotten easier. It's amazing what challenges we humans can adapt to. Isn't it?


[4] I'm thankful for my FIL's restored health and return home!


[5] I'm thankful that I have blogging as an outlet. God knows I need an accessible one when hearing Willie Nelson's "Always On My Mind" sends tears rolling down my cheeks. The man in the next car must have thought I was losing it. LOL! Truly, if I weren't laughing at myself, I might start crying [again].

Think Thankful. It helps!

Wednesday, April 22, 2009

Earth Worms and Honesty

It's Earth Day and my tree-hugging daughter and I are going out for lunch. Out, that is, to one of her favorite local nature areas -- Hempstead Lake State Park -- with a garbage bag and gloves to pick up the trash that others leave behind on our favorite little beach. We'll grab a quick slice [of pizza, in case you're not from NY] and head back to school in time for her science lesson morphing caterpillars into butterflies.

I encourage my daughter, at every turn, to preserve the earth and to respect and help save all the creatures we share it with. So, FINALLY on time for school this morning -- barely --as she kisses her little broeys and me good bye and runs up the walkway to school (I watch her all the way to the door where she blows me kisses and hugs and waves her final goodbyes), she stops short and yells back to me, "Mom, an earthworm! He's still alive! Can I save him?" I yell, "GO TO SCHOOL!" and she reluctantly moves on. And, so do I, driving my 90-minute, drop-the-boys-to-school loop.

Lest I forget, before I pull out of the school parking lot, I grab a pen in the car and write today's reminders on my hand -- because there's never any paper available when someone says, "can you...blah blah blah?" I find my hand is always handy and I have to attend to it before it gets washed away so things tend to get done once I commit it to the hand. Today's list goes something like this:
- Liv Lunch
- Boy's Invite (birthday)
- CVS-vaseline
- Dees Flower List (PTA)
- Dog at X24 (call sanitation about dead dog lying on the side of the highway for 6 months).

Suddenly (not surprisingly given the last entry), I'm reminded of Olivia's worm. "Mom, he's still alive!" One of the principles of Buddhism is to honor all living creatures -- I think because they believe even an earthworm could have been some one's mother in a past life. The whole "soul lives on" thing... which I totally buy into. And, I KNOW that the first thing Olivia will ask me when I see her for lunch in 10 minutes is.... "Did you save that worm, Mom?" I can't say yes if I didn't! And, I'm a hypocrite if I don't save it. I try like heck to do the right thing all the time... even when it's inconvenient or harder to do the right thing.

Mind you, my daughter saves every moving earthworm she encounters on the school walkway, every time it rains... much to the chagrin of my father who picks her up from school. Oddly, I remember vividly, doing this EXACT thing on this very SAME walkway when I was her age (she attends my elementary alma mater). So, I pull up in front of the school right behind a school bus waiting to board students for a class trip. Engine running, I hop out, pick up a small twig and begin perusing the walkway for wiggling worms. I manage to rescue 3 worms, one of which, I'm certain, is Olivia's worm. As the bus driver looks on, I walk the length of the walkway up and back to my car satisfied that I've done the job well. Then, I explain to the bus driver, "My daughter saw a live worm on the sidewalk this morning when I dropped her off. She didn't have time to save it. I know it's the first thing she'll ask me when I see her. I can't lie to her and I can't hold my head up in support of earth day and all it means, if I don't walk the walk and talk the talk. But, mostly, I want to be able to say to my daughter that I did the right thing and saved the worm for her. He smiled and said he totally understood.

It made me feel good about me and my parenting style. To know, not only for myself but for my daughter, that I'm doing the right thing when, honestly, it's easier not to. I'm walking the walk and talking the talk and setting a good example for my daughter's sake. I can already picture her pure, loving smile when she asks and I can say honestly, "Yes, Olivia, I saved your worm."

Tuesday, April 21, 2009

Extraordinary Fatigue In the Animal Kingdom

I learned something new today. I love learning new things especially when it's acquired with laughter:

I always thought that we humans were the only ones in the animal kingdom that ignored our fatigue and just kept on ticking... like Timex watches. Until, of course, it all finally catches up to you -- and it always does -- and you collapse on your feet! Isn't that the saying? "I was dead on my feet!"

Certainly, life as the mother of now almost-4-year-old twin boys and a 7-year-old tom-boy for a daughter can, at times, be extraordinarily fatiguing. That's without the curve balls thrown in when you add the reality of the boys' Down syndrome and life's other little challenges that we all face. I do not mean to say that the boys' Down syndrome is the cause of my fatigue. But, certainly their therapy and school schedules are contributing factors. Add to the list that I stupidly lost track of time last night -- caught up in a good read -- and didn't put my book down until nearly 2:00 AM (and I wonder where Olivia gets it). BIG mistake!

So, yeah, I'm tired. But, life goes on and so must I. The morning ritual completed -- kids dressed, fed and driven to their respective schools (the boys' school a 50-minute drive away), I'm now able to focus -- to the extent that I can do so through tired eyes -- on the next task... BJ's for food! The cupboards are bare and the kids can't go hungry. (Tired, yes. But not hungry!) And, then it happened. Speeding [barely] along the 6-lane Northern State Parkway, it hit me like a 16-wheeler. We are NOT alone [in our fatigue]! Thankfully, no one hit HIM! A HUGE Canadian Goose, literally 6 inches from the roadside, sound asleep with his head tucked under his wing and one leg tucked into his plume, precariously balanced and "dead on his feet" or foot! Morning rush hour with cars whizzing past this guy at 70+ mph and he doesn't move a feather -- or fall over, for that matter.

Do you think he could feel that full-body WHOOOOSH when a car speeds by your standing still car? You know that feeling? First it sucks you in and then it lets you go. Or, do you think he got tired of waiting for a chance to cross the road (oh no wait, that was the chicken)? Besides, he can fly if he wants to. The chicken can't. Regardless, he was all alone and sound asleep. Not another goose in sight. Maybe he fell asleep and his friends moved him to some busy place so when he wakes up he'll be all confused and embarrassed and the rest of the geese hiding behind the bushes could get a good laugh. Ever do that to a sleeping friend's mattress? No? Hmmm, me neither. And no, there were no carcasses on the roadway so he wasn't standing vigil for a lost one. It seems, this extraordinarily fatigued Canadian goose did what we humans should do when we're extraordinarily fatigued... Cozy up under a soft down cover and sleep. Smart goose!

Yes, I always think like this when I'm tired. I laugh more when I'm tired too. Maybe that's what sustains my fatigue... the desire to laugh more. Anyway, I'd like to say "lesson learned" and go take a nap.... But, there's still too much to do and too little time to do it. Besides, my balance is terrible when I'm tired.

Sunday, April 19, 2009

ANGELS AMONGST US

This is written without naming names in order to preserve the privacy of the people involved. But, I wanted to tell this story to recognize the Angel at work amongst us:

There's never really a good time to suffer a TIA (Transient Ischemic Attack... aka: mini-stroke). Especially, it would seem, while driving through a foreign city on vacation! However, time, place and company were a stroke of luck in this case. When a TIA happens at home, the sufferer can sometimes go days without assistance and often never seeks treatment... Which severely affects the chances of full recovery and increases the possibility of a repeat performance. As luck would have it, our patient was following family members, one of whom happened to be a newly minted surgeon. Thankfully, their quick action got him to the hospital where he received treatment and is expected to make a full recovery after surgery to clear a blocked carotid artery. You couldn't ask for a better outcome.

Today's Angel Amongst Us? The only name I'm naming... is Max! Helping to order and read test results for a quicker diagnosis, no sooner was the patient stabilized in the local, non-US hospital, when it became apparent that a transfer to a hospital closer to his home was the most desirable course of action. Once again taking the reigns, within 24 hours of occurrence, Max had arranged for a safe, well-staffed and highly-equipped hospital plane transfer. All went smoothly, thanks to Max, and our patient is now safely awaiting surgery in a hospital near his home, with his whole family around him.

Humbly, Max says he did what any one would have done. Honestly, none of us could have done -- so quickly or professionally -- what Max accomplished with ease. I am so thankful that Max was there so that this story can have a good ending. Taking responsibility and making decisions under duress is a difficult thing under any circumstances, never mind when it pertains to life and death matters regarding a family member. Doing so humbly is a gift. Thanks, Max, from the bottom of my grateful heart. Truly!

Nip, Tuck Long Island!

Even in the midst of stress, there can be found humor. For me, laughter is the great remedy. Finding humor in every situation makes me laugh and that makes me a happier person.

So, there I am occupying my 3 1/2 year-old son in the sterilized pre-op holding room, wearing a paper suit and booties, waiting to hear Brian's name called for his very first surgery experience. Granted, tonsillectomies/adenoidectomies is not a particularly dangerous surgery but... surgery is surgery and includes anaesthesia and cutting and all that scary stuff... on MY child. So, here I am fighting that anxious feeling in the pit of my stomach as I push Brian around on a large, motorized Harley Davidson motorcycle. Finally tired of the Harley, he spies a bookshelf, selects a Wiggles book and we cozy up in a big-enough-for-two easy chair to read.

"Good morning, Doctor" (not ours)! In what I believe is the off-duty doctor uniform complete with blue blazer, white button-down shirt, no tie, khaki pants, brown loafers and, you guessed it, no socks, a tall, grey-haired, few-years-past-middle-aged man winks at the nurses and eases himself into the empty seat between his first "client"and Brian and I.

"Look at the arch in those eye brows. Beautiful! I know a lot of women who'd kill for that arch!" he says to his client. A man! I stifle a laugh and watch Brian give him his best "what in the heck are you talking about" sideways glance. Something my kids are famous for. The nurse asks, "What'd'ya got today Doctor?" To which he replies, "I'm lifting eyes, tucking a chin and fixing a pair of feet."

Ahhhh! The plastic surgeon! Now the scene makes sense to me, if not to Brian!

Not surprisingly -- because Brian is an absolute vision of adorable in his hospital gown, feigning interest in his book while secretly watching this exchange -- the doctor turns his attention to us. Mostly to Brian, thankfully. Because, at 46, I certainly don't want a plastic surgeon sizing me up. Trying hard to engage, Brian wasn't having anything to do with him... immediately associating the good doctor with whatever "bad" stuff he sensed was about to happen. (Namely, the surgery.)

So the doctor decides to recruit me to his cause. There I am, up since 5AM, barely slept a wink, stressed out -- which we all know, does wonders for a woman's appearance -- and wearing a paper suit with just my BIG, OLD FACE hanging out the top. I think you'll all agree -- my sister confirmed this would have been her reaction too -- I suddenly felt quite self-conscious about my head's appearance. My grey hair, wrinkles (Yeah, when you're NOT in the presence of a plastic surgeon you can call them "laugh lines"), droopy eyelids, hanging chin, blotchy complexion.... OY! You name it, I was self-conscious over it. So, I raised my eyebrows in a look of surprise, opened my eyes as wide as I could, lifted my head to pull the hanging skin under my chin taut, half smiled so my crows' feet wouldn't rear their ugly talons and feebly tried to entice Brian to talk to the man so he would PLEASE STOP LOOKING AT ME!

Thankfully, Brian complied and held the man's rapt attention for a good 5 minutes before the nurse interrupted and told us it was our turn. Can you believe I was thankful for that? We waved "bye bye", blew the good doctor a kiss -- without puckering lest he see those wrinkles all around my mouth (is there a nice name for them?) -- and moved on to the real crisis at hand.

Honestly, he was a very nice man. And, for 46, I don't think I look so bad for my age (even without make-up). Still, I hope I never have the pleasure of being up-close-and-personal in the presence of a plastic surgeon again. I'm not sure my fragile, aging self-esteem would survive (LOL).

Saturday, April 18, 2009

THANKFUL THURSDAY - Being Thankful Whenever it Comes

I should either learn to knock harder on wood and/or stop jinxing myself by saying things are good and will be "back to normal" when.... I'm beginning to think that this IS my normal for now. I can accept that but, boy, it's been stressful.



[1] Thank God my father-in-law is OK and expected to fully recover from his recent death-defying mishap. He'll be undergoing surgery, scheduled for Monday, and can use all the prayers he can get while he goes through and gets over this final obstacle.



[2] I'm glad my boys are very nearly back to being their old selves again (minus the sleep apnea... yeah!). We're not FULLY hydrated yet but we are certainly past the syringe-method of drinking and they've forgiven me that bullying. Thank God.



[3] I am so thankful for the consistent hope I feel regarding the improvement of tough circumstances in my life. I feel like in some of my darkest -- or at least most stressful -- hours, I am gifted rays of hope in some way. I know I'm being cryptic but hope is hope and comes in all forms, shapes, sizes and, often, in a way you least expect it. Hope, in whatever form, buoys me up in hard times even when, ultimately, the outcome is not necessarily what I WAS HOPING FOR. Like now, I have hope!




[4] I'm grateful that through all these stressful times, I've not gained any weight. Easter alone would generally do that to me. Though I've not lost any more (which is what I was hoping for), I've generally eaten "better" than I normally would have, curbed my stress eating (mostly), threw out the jelly beans, left the chocolate bunny wrapped, and have managed to maintain that 8lb weight loss I was bragging about 4 weeks ago. So, when all this chaos and crisis is over, or maybe even in the midst of it, I can go back to Weight Watchers and start where I left off instead of having to start all over again.



[5] I'm very excited and thankful for a good tax return this year. (Yes, we let the federal government save our money for us... it wouldn't happen any other way!) As a result, we are planning some home improvement projects that might just make our home look respectable to the naked eye (LOL). Someday, maybe we'll get to the end of this never-ending home improvement project we call home. I know most homeowners say it never ends but hope springs eternal!

Sunday, April 12, 2009

Impatient For Change -- Down Syndrome Advocacy

I recently attended the "Best Practices in Educating Children With Down Syndrome" conference sponsored by http://dsafonline.org/ and held at LIU/CW Post Campus on Long Island in March. I gathered so much information with which to go forward and make more informed decisions on behalf of my children with Down syndrome but I also gathered... ammunition, I guess is the right word... to fight the fight each one of us knows we have ahead of us to ensure that our children are afforded all the opportunities they need and deserve to succeed and achieve all that's possible.

During Friday morning's opening remarks, I had the pleasure of listening to a surprise guest speaker... A man who spoke of his experience working in the 1960s , I believe, as a Psychologist at Willowbrook, a facility then referred to as a "mental institution". He told the history of the institutionalization of people with disabilities in New York State which was, sadly, reflective of how such populations were treated throughout the United States during that time. It is a heartbreaking story for people with Down syndrome (as we all know). But, he explained, they were doing what was thought to be "best practice" for people with disabilities based on the most current research and thinking at that time. I found it fascinating to hear his point of view and how much things have changed in this one man's adult life.

In speaking with him afterwards, he said with personal directness, "I've had the luxury of watching these amazing changes over the course of many years. And, while we're so far from where we all know it's going and where we all know it should be, I have had the luxury of a long-term view and I know the changes will come eventually. But, as the mother of two children with Down syndrome, YOU CANNOT BE PATIENT and wait for these changes to happen. It's YOU that will bring about these changes in my lifetime. And, you need to be impatient about it... for your children's sake. Don't sit back and wait. Go out there and fight for your child's INCLUSION in our society in every sense of the word."

His words struck me profoundly and will be an inspiration for me personally to continue and grow my advocacy efforts on behalf of my children, your children and all the children that come after. He's right. I cannot afford to be patient. My children only have this life to live and I will not allow the barriers that exist today to hold them back in their achievements. I am impatient! Impatient for their acceptance. Impatient for equal opportunities. Impatient for change.

Thursday, April 9, 2009

THANKFUL THURSDAY

What a beautiful, seemingly Spring-like day outside. Though I haven't actually stepped foot outside -- the morning's wake-up ritual is upon me -- it seems we might just have turned a corner on Spring. Much the same way we've recently turned a few other corners...


[1] We've turned the corner on Brian's recovery, FINALLY. You can't imagine how very thankful I am for this. Though he's not voluntarily drinking his usual volume of apple juice, he is accepting the fluids I offer him on a regular enough basis without me having to muscle him down and force the syringe of Gatorade into his mouth every 20 minutes... as has been my task the past 2 weeks. I felt like an abusive mother doing what I had to do to keep him from going back to the hospital for another IV. Now that we're mostly clear of the possibility of dehydration, we're sort of free to enjoy ourselves again. I'm sure Brian will appreciate the break even more than I will.


[2] IT WORKED! THEY SLEEP! All's clear in their nasal passages and their throats! They fall asleep and stay asleep in nearly the same position they begin in with very little snoring and no stop breathing that I've detected so far. That means they're not waking themselves up over and over again throughout the night due to obstructive sleep apnea. The obstruction -- their tonsils -- is gone. Now, of course, the problem is waking them up. Because they don't stop breathe and wake themselves up in the morning.... NOTHING wakes them up. As a matter of fact, Michael is STILL sleeping as I type. Somehow I have to get them on a normal sleep schedule. Of course, I don't really know what normal is because they've never been able to sleep soundly before. It'll be interesting to try and discover what their natural sleep schedule is!


[3] SPRING BREAK! We have off from school for the next 12 days! And, with the boys healthy again, I am hoping to visit the zoos and parks, go hiking, maybe biking, and walking and feeding ducks. You name it, I'm planning on it... Planning on having tons of fun to make up for some of the misery they've been through the last 2 weeks. And, when we return to school we're in the final stretch to Summer! Talk about a great corner to turn! Yeah!!!


[4] I'm thankful that Tim has turned the corner on his work-week too. He has the next 2 days off so he can enjoy spending some time with me and the kids. After the last 2 very stressful weeks of surgery and hospital stays, he needs the break too... a nice, relaxing break. Maybe a leisurely walk in the woods at the Queens Zoo today!


[5] And, finally, the Jaggi's are back! My friend Tammy, her hubby, Mike, and their 2 beautiful girls, Sam and Kaitlin, are back from Wintering in the Bahamas as they do every year. Tammy's a great friend and one of the very few girlfriends I actually see on a regular basis since I've had kids. Though her youngest is Olivia's age, she has no problem stepping back into toddler-hood with me and my boys. And, I love spending time with Tammy and her family because she consistently makes me laugh with her view of the world. There's always some fun around the corner when Tammy's in town. (Pic: The Jaggi and Hagan kids)


It always feels good to acknowledge the blessings in my life. And, there are so many. Truly so many more -- and some really important ones -- than those I've committed to this computer screen. Thankful Thursdays keep me mindful of all of my blessings as I sift through my brain for the 5 blessings I'd like to share on any given Thursday. So, today, I'd like to take a moment to say a quick thanks to all of you friends and blog-readers. Each of you are a special blessing for me. I appreciate that you humor me by reading this blog. I do love to write. It's always been a great outlet and source of happiness for me. So, thanks for contributing to my happiness in your own special way.






Wednesday, April 8, 2009

Interview with Positive Psychology Expert and Online Course Offering

Because I actively pursue my own happiness and because of my interest in the area of Positive Psychology, I occasionally run across information I find fascinating and think is worth sharing with like-minded souls. Since this blog represents my happiness project and you are reading it, I'm going to take a leap of faith and assume that any one of you readers might actually be interested in the following information. Stop here if it doesn't apply to you. Otherwise, read on:

Some time ago I came across the "Authentic Happiness" site (http://www.authentichappiness.sas.upenn.edu/), part of the Positive Psychology Center run by The University of Pennsylvania. It's a fun site that includes some "tests" to measure various aspects of your happiness quotient. With an undergraduate degree in Psychology and minors in Psychology for Exceptional Children and Art -- which has always been my passion though, oddly, not my career path -- I was excited to discover that they also offer a Masters degree in Applied Positive Psychology. Since then, I have thoroughly coveted this degree. Though I do find that wanting it does not bring me happiness like actually pursuing it would. So, I put the pursuit of an advanced degree on my short list of long-term educational goals. It made me happy to acknowledge the desire and, having done so, actually keeps me focused -- gathering more information on this discipline, admissions requirements, alternative schools, comparable degrees -- all potentially drawing me closer to achieving the goal. And, while actually attaining the degree in the time I have left on this earth remains to be seen, investigating and contemplating such a journey is exciting.


I just recently learned that the University of Pennsylvania's College of Liberal and Professional Studies (LPS) -- home of the Positive Psychology Commons -- will be offering an online course in the exploration of the Foundations of Positive Psychology presented by Dr. Tal Ben-Shahar, PhD, Harvard lecturer and noted expert in Positive Psychology. This new, non-credit course will examine the history and scientific underpinnings of this intriguing field and show you how its principles have been used to enhance people's work and home lives. The course text book is one of Dr. Tal Ben-Shahar's books called, "Happier: Learn the Secrets to Daily Joy and Lasting Fulfillment".

Though I cannot attend the class, based on the following interview with this renowned positive psychology guru, I plan on picking up a copy of the "text" ASAP. There's some thought-provoking stuff in the interview. And, while some of it I have heard before, I do find his idea that happiness is the ultimate human currency fascinating and his responses insightful. I hope you do too.



Dr. Tal Ben-Shahar on Being Happier
Everyone dreams of being happier, and Tal Ben-Shahar, Ph.D., understands this yearning. He’s a lecturer at Harvard University, where his “Positive Psychology” class boasts the university’s largest attendance. In addition to consulting and lecturing about happier living around the world, he recently published Happier: Learn the Secrets to Daily Joy and Lasting Fulfillment. Here, he shares his insights on being happier.


Do people have control over their happiness or is their degree of happiness dictated by genetics?
While there’s some genetic component to our happiness—some people are born with a happy disposition while others are not—our genes define a range, not a set point. Grumpy may not be able to cultivate the same view of life that Happy enjoys, and a natural-born whiner may not be able to transform himself into a Pollyanna. But we all can become significantly happier. Most people fall far short of their happiness potential.


Is there a limit to how happy a person can be?
We can always be happier; no person experiences perfect bliss at all times and has nothing more to which he can aspire. Therefore, rather than asking myself whether I’m happy or not, a more helpful question is, “How can I become happier?” This question acknowledges the fact that the pursuit of happiness is an ongoing process that’s best represented by an infinite continuum, not by a finite point. Rather than feeling despondent because we have not yet reached the elusive point of perfect happiness or squandering our energies trying to gauge how happy we are, we recognize that there are unlimited resources of happiness, and then focus on ways in which we can attain more of it.


In your book, you refer to happiness as the ultimate currency. How can this concept be helpful in the first 30 days of being happier?
A human being, like a business, makes profits and suffers losses. For a human being, however, the ultimate currency is not money, nor is it any external measure, such as fame, fortune or power. The ultimate currency for a human being is happiness.Money and fame are subordinate to happiness and have no intrinsic value. The only reason money and fame may be desirable is that having them, or the thought of having them, could lead to positive emotions or meaning. In themselves, wealth and fame are worthless: There would be no reason to seek fame and fortune if they did not contribute, in some way, toward happiness.


How can a person reinforce their happiness through rituals in the first 30 days?
Ask yourself: “What rituals would make you happier? What would you like to introduce to your life?” It could be working out three times a week or meditating for fifteen minutes every morning or going on a date with your spouse on Tuesdays. Introduce no more than one or two rituals at a time and make sure they become a habit before you introduce new ones. According to research, it takes about 30 days to form a new ritual. Once a practice becomes a ritual, you can move on to the next one.


How can people enjoy the first 30 days of being happier?
Life is mostly about the journey, and yet most people live under the illusion that once they reach a certain destination—regardless of the journey—they’ll be happy. The reason why we see so many rat racers around is that our culture reinforces this delusional state. If we get an “A” at the end of the semester, we get a gift from our parents; if we meet certain quotas on the job, we get a bonus at the end of the year. We learn to focus on the next goal, rather than on our present experience, and chase the ever-elusive destination our entire lives. Attaining lasting happiness requires us to enjoy the journey on our way toward a destination we deem valuable. Happiness is not about making it to the peak of the mountain, nor is it about climbing aimlessly around the mountain; happiness is the experience of climbing toward the peak.


How can being happier lead to success in everyday life?
Research illustrates that the relationship between happiness and success is reciprocal: Not only can success—be it at work or in love—contribute to happiness, but happiness also leads to more success.Other factors being equal, happy people have better relationships, are more likely to thrive at work and live better and longer. Happiness is a worthwhile pursuit, whether as an end in itself or as a means toward other ends.


What types of goals should people set during the first 30 days of being happier?
The goals we should set are ones that will yield the most in the ultimate currency. It’s more important to have goals rather than to achieve them because the attainment of goals leads to a temporary high only. The proper role of long-term goals is to liberate us, so that we can enjoy the here and now. If we set off on a road trip without any identified destination, the trip itself will not be much fun. If we have a destination in mind, we are free to focus our full attention on making the most of where we are.


How can helping others lead to being happier?
We get so much benefit from helping others that I sometimes believe that there’s no more selfish act than a benevolent act. The philosopher Ralph Waldo Emerson wrote, “It is one of the most beautiful compensations of life that no man can sincerely try to help another without helping himself.” Helping oneself and helping others are inextricably intertwined: The more we help others, the happier we become, and the happier we become, the more inclined we are to help others.


In your book you speak about “happiness boosters.” What are they and how can people use them beyond the first 30 days?
One or two happy experiences during an otherwise uninspiring period can transform our general state. I call these brief, but transforming experiences “happiness boosters”—activities lasting anywhere between a few minutes to a few hours that provide us both meaning and pleasure, both future and present benefit.Happiness boosters can also help in the difficult process of change; habits often persist even if we do recognize the need for a new or altered course of action. Introducing relatively brief experiences of meaning and pleasure is less threatening than overhauling an entire life and will, therefore, meet with less resistance—subconsciously from the person trying to change, as well as from the person’s social environment. Happiness boosters represent a more moderate, less risky approach toward bringing about change.


SIGNATURE QUESTIONS
What is the belief you personally go to during times of change?

While change is hard, the consequences of no change are much harder.


“The best thing about change is...”
That it’s possible.


What’s the best change you have ever made?
My commitment to my personal happiness, which came after my understanding that happiness is the ultimate currency. For more information about Dr. Tal Ben-Shahar, visit http://www.talbenshahar.com/.


Hope you found this information useful or, at least, interesting. For those in pursuit of your own happiness project, check out http://www.authentichappiness.sas.upenn.edu/. Under different circumstances I certainly would attend this class (and will, if/when my circumstances change). Until then, I promise to provide my feedback on the book when I get through it. Bear with me, though, because while I love to read, I am not the fastest reader in the East. Nor do I have much "free" time for reading in my life currently... So, it may take me awhile. Meanwhile, if any of you read the book, attend this course, or have a comment about the above interview, I'd love to hear from you.

Tuesday, April 7, 2009

ANGELS AMONGST US

I was touched this very morning by an angel. As a matter of fact... JUST touched by that angel. As well you know, the boys' recovery from their surgeries has not gone well though I'm hopeful we've turned a corner just last night. As such, when they are lucky or tired enough to sleep, come hell or high water, I let them do so as long as I can keep the other inmates at bay. This morning, all seem content to sleep in peacefully. But, poor Olivia has school and I haven't gotten her there on time since our surgery/recovery fiasco began. So, determined to finally do so this morning, I woke her, albeit a bit late, completely ready to scooch her quickly from morning potty to teeth brushing to dressing to breakfast and out the door in record time. And, I'm proud to say, we did so with no yelling, no tears and no complications. She even had time to feed her fish.

There's only one problem, I can't get her to school with the boys sleeping. Now, I do have my pick of neighbors bringing their children to school who are more than happy to oblige by taking one extra child. The trick is to know which neighbor is going to school for the 8:15 start versus an early-morning-club-start. I find it difficult to keep track of my own children's activities let alone tracking my neighbor's children. To solve the problem this morning, and to reward Olivia for wonderful cooperation, I let her choose which neighbor she'd like to ride with. She chose Nancy, her friend Charlee's Mom.

So, I dialed up Nancy, who knows a bit about our trials and tribulations these past 2 weeks, and I asked her if she could swing by on her way to school and pick up Olivia this morning. Without hesitation, she happily agreed. 10 minutes later, as Olivia and I waited quietly, reading the Wildlife Conservation Magazine (one of my little tree-hugger's favorites), Nancy pulled into the driveway. I ran out with Olivia to greet our friend and help Olivia quickly get into the car.

"WAIT! WHERE'S CHARLEE?" Laughing, Nancy explained that Charlee went to early morning computer club. So, Nancy had agreed to take Olivia to school on her time.... a morning when she actually had a little reprieve from her daily grind... A morning when she didn't have to run off to work but could sit peacefully and, maybe, blog on her own blog. A little peace and quiet split in two by the needs of a friend. Without thinking of herself, she readily agreed to lend me a hand and take my child to school though she'd already made that trek with her own two kids earlier today.

The Angels Amongst Us are truly walking RIGHT amongst us. They wear the familiar clothes of our friends and neighbors. They wave hello as they walk their dog past the house in the evening or pick their kids up at the school yard at the same time I do. With unwavering support, my friends, my neighbors, my Angels Amongst Us continue to renew my faith in humankind. Thank you, Nancy, for your beautiful gift of friendship and this extraordinary act of kindness in my hour of need.

Now, how shall I show my gratitude to Nancy? And, what way will I find to pay this kindness forward?

Saturday, April 4, 2009

PLEASE Let the Recovery End!!!

Did I say things would get back to normal this week? SOOOO wrong!
Sorry to be so incommunicado but our recovery seems to have gone south... way south. After a beautiful surgical experience last Friday, the boys slowly but steadily slid into a state of dehydration. By Monday night, we found ourselves in the ER with both boys receiving IV fluids. It is, apparently, routine procedure for patients entering the ER with a fever, to have a chest x-ray... Thank God. We inadvertently discovered that Brian had pneumonia. So, Daddy got to take Michael home at 4:00 am while I went upstairs to Pediatrics with Brian. After 3 solid days and nights of poking and prodding and too many bags of fluids and antibiotics, Brian bade farewell to the nursing staff at SNCH. He went home with lots of bruises from multiple IV pokes and a serious case of white coat hypertension.

We are all finally on the mend though not in the clear yet. Brian's still being force-fed fluids to prevent a repeat performance. I have learned all too well that it is true, "you can lead a horse to water but you cannot make him drink."... You also can't make a kid swallow no matter how hard you try.

And, no matter how hard I try, there does not seem to be any time for me to get back to my regular blog schedule. As such, though I will try, I apologize for being so lost in space these past two weeks and again, in advance, for my absences these next two weeks while the boys, hopefully, complete their recoveries and get on to the benefits we were promised as a result of the surgery.

Thank you for your patience.