Sunday, November 29, 2009

ANGELS AMONGST US - The Pan Man and The Cart Girl

I pride myself on always trying to do the right thing. I teach this concept daily to my children through my words and actions. I explain to them, and I know first hand, that doing the right thing is not always the same as doing the easy thing, the fast thing or even the thing I most want to do. But, when I do the right thing, I always recognize that I've done so and it always makes me feel good about myself for living responsibly and for helping others.

___________

The Pan Man: My 50-yard stare with glazed-over eyes and a pained look of confusion gave me away as I hopelessly searched the rows and rows of tin pans towering almost to the ceiling. 9x9, 9x9, 9x9... nope. I searched each shelf's labels but could not find it. HOW could BJ's Warehouse NOT have a classic 9x9 aluminum baking pan right before Thanksgiving? Still, I stood there, feet glued to that spot, staring at thousands of pans... in disbelief! Then, as though magic fairy dust drifted down upon me, the Pan Man appeared. An elderly gentleman with a quiet and soothing voice stopped in front of me and sighed. Lost in his own dilemma, he happened to look up from his list and recognize me in mine.

With a smile he said, "Want to trade? I'll help you find what you're looking for and you can help me find what I'm looking for!"

"Deal!", I said, "What are you looking for?"

"Sugar" he said.

"Other side of the store", I indicated pointing, "A few aisles back. Halfway down the aisle marked "Baking Needs'"

"Great. Thanks." He said with a smile. "And you?"

"I need 15 9x9 aluminum baking pans for my Brownie Troop." I sighed. "Doesn't look like they have them here!"

The Pan Man thought for a moment and then said, "If you live nearby, go to Ryan's on Grand Avenue in Baldwin. They have everything. I'm a cook. That's where I get all my pans! Inexpensive too!"

We thanked each other for the mutual help we'd offered -- though surely he'd have found the sugar on his own while my pans were another story -- and I raced off to pay for all the other baking supplies I needed for tomorrow's Brownie troop meeting so the girls could earn their Make-It/Eat-It badge.

The Cart Girl: I rushed to my car and packed out the goods quickly... replacing the cart neatly in the coral. The parking spot in front of me was clear -- I LOVE when that happens -- so I put that dirty old mini van (as my Old Soul calls it) in drive and was about to pull through when a lady parked in the spot caddy-corner in front of me rolled her shopping cart into the empty spot right in front of my running vehicle, giving her cart a little extra shove so it nearly kissed my bumper (obviously oblivious that I was in the car). Then she hopped back into her car, threw it into reverse and began to back out of her space. I put my mini-van back into park and got out of my car. The woman looked surprised and then puzzled at what I was doing... I rolled her cart from in front of my car and pushed it a whole 10 steps further to the cart coral, sliding it easily into it's rightful place. Shaking my head, I shrugged at her and got back into my car. As she sped away I thought I might have embarrassed her and how she might be angry with me for making her feel badly. I thought she might be thinking "what does that woman know about the rush I'm in" OR "doesn't she have any idea how hard my life has been lately!" Oh, wait a minute... that was ME thinking those thoughts... My thoughts!

Honestly, I don't know why she didn't take the 5 extra steps to put the cart away where it belonged. I don't get people like that. People who act as if what they do on this earth doesn't impact anyone else... Maybe they don't care. Or, maybe they just don't think. But I do! I was likely in as much of a hurry as she was. I'm sure it never occurred to her that 5 more steps on her part, doing what she should have done anyway, might have made my life just a little bit easier. Sure, she didn't have any idea that the past month of my life was crazy and hard with the boys' surgeries. But, maybe the last month of her life was crazier and harder than mine. You know, we're all in this together... aren't we? So I simply put the cart away for her.

___________

I did go to Ryan's for the baking pans I needed for the Troop Meeting. They had just the right size for just the right price! So, thanks again to The Pan Man, you're an angel for helping me and for your willingness to help... despite your own sugar dilemma and/or whatever unknown-to-me challenges you currently have in your life.

And, thanks Cart Girl, for giving me the opportunity to do -- and feel good about doing -- the right thing... And to consider that, despite my own challenges in life, I can do something for someone else who might be having a worse time of it than me.

Angels come in different forms and teach us all kinds of lessons! Our job is to recognize them for what they are.

It really is all in how you look at it...

Friday, November 27, 2009

Celebrate The BIG Things... Right?

We've all heard the adage, "Celebrate the BIG things" as often, probably, as we hear the opposite adage that says, "Don't sweat the small stuff." Well, sometimes those lines get blurred along the way and the small stuff becomes big and the big things seem surreal. We've got one of those surreal BIG things coming our way. Confused? So is my Dad!

Dad's having a rough time with his memory these days. He is suffering from a rapidly-progressing, age-related memory loss and he is deteriorating far more quickly than any of us realized he could or would. I know we're not the first family to go through this but it's not easy to watch this happen... to see the memories of someone you know and love vanish into thin air. People he knew well, barely exist for him. The names of his children are beginning to elude him. Time has little meaning and familial ties are untied in his broken memory. It's not only hard for us, but it's hard for him too.

Sadly, he is aware enough to know that he's becoming the person he didn't want to be. Someone who needs assistance with the simple things in life... like preparing a meal for himself. And, this is infinitely bothersome to him because he still remembers being adamantly independent. As he's aware of things slipping away, he hangs on to what he knows -- or what he thinks he knows -- vehemently.

Like his age!

Recently, Dad expressed irritation with one of the doctors we dragged him to for additional neurological tests. Upon departure, the doctor indicated that Dad was in pretty good physical shape for a man of 78. Dad walked briskly out of the office and stated that he didn't like that Doctor. When pressed for clarification, he replied, "What the heck is he talking about... 78? I'm not even 50 years old yet!" Upon further questioning, we discovered that Dad is adamant that he is just 49 years of age -- in his memory-challenged mind -- and will turn 50 on his next birthday... which happens to be Christmas Eve. Mind you, I'm 47 and I have older siblings who are 48, 49 and 51... which makes this statement not only wrong but physically impossible. Dad is 77 years old! Still, despite our best efforts to convince him -- writing out all the years since his birth and counting them up one by one, examining his driver's license (which he does not use any longer) and his passport, proving our own ages to him, and having him take a look in the mirror to see if he can marry his image with this new age -- Dad does not -- WILL NOT -- believe the doctor, nor his children, that this will be his 78th birthday. He now believes, instead, that he is 49 and that his children are mathematically-challenged!



Though it's not his 50th birthday for us, it absolutely IS for him. So, we've decided to throw him a 50th birthday party on Christmas Eve! I mean, who is this party for, anyway? 50 is a big one and should be celebrated in a BIG way! And, what better reason to celebrate whatever birthday it is... than to celebrate while he still can!

Thursday, November 26, 2009

GIVING THANKS ON THANKSGIVING

This morning's not-so-deep Thought: Do you think Thankful Thursdays came about because Thanksgiving is always on a Thursday? Are half of you saying, "duh, Maggie!"
_____________________

On this quiet Thanksgiving morning, I have much to be thankful for just as I do every Thankful Thursday. But, somehow, Thanksgiving has a way of making me think about all the people whose basic needs are not being fulfilled on a daily basis.... And it makes me remember to be thankful that the most basic life-sustaining NEEDS are being fulfilled in my life and for my family every day.


[1] I am thankful that there is food for my children to eat. Every day! And, I'm thankful that we can choose, according to their likes and dislikes, which healthy foods to eat during our 3 daily meals. There are so many who will go without any food today... never mind having a choice or eating 3 times a day in plentiful helpings. I wish that I could literally just reach out and hand my food directly to those children with pleading eyes and distended, hungry bellies. I wish the bureaucracy would step out of the way so that we could share the abundance of food that exists in my home, and in our country instead of just throwing it away or tying so much overhead to its delivery that it barely makes a difference in the lives of those who TRULY need it.


[2] I am thankful for the comfortable beds my children, husband and I sleep in each night... complete with clean pajamas, pillows and warm blankets. Hearkening back to my working days, I can still see the beds of the homeless in my minds eye... boxes laid flat on New York City's hard and cold sidewalks topped with one or two big boxes pushed together to house a person -- A PERSON -- who has nowhere else to lay their head to rest. Wearing every piece of soiled clothing they have just to keep warm as they sleep.


[3] I'm thankful for the clothes on my back and the clothes my family wears each day. Though my pants may be worn in the knees from playing with my children, I am thankful to have more than one pair of jeans. Thankful for every bag of beautiful hand-me-downs left on my doorstep by caring friends whose children have outgrown clothing items that have plenty of life left in them for my kids to try and use up. And thankful that I have the ability to share my children's hand-me-downs with others who need them.


[4] I'm thankful for my home. Though it may not be a beautiful mansion to you, it does safely house my family. The lights are on in the dark and the heat is on in the cold. It gives my family a warm, safe and peaceful place to exist in a world that is not always so warm and welcoming! It is ours (and the banks, LOL) and we are grateful for it! There are too many people without homes today. I'm not talking about those who over-extended themselves buying homes far outside their financial means... though I feel for them too, individual responsibility is sometimes a hard lesson to learn! I'm talking about families living in shelters or on the streets or in abandoned cars. I'm talking about little children and the elderly living in houses without heat, without lights, without windows or doors. I have all these things in my beautiful, dilapidated little home and I do not take them for granted!


[5] I'm thankful for my husband's job when sooo many are without jobs this holiday season... And for his ability to work and continue earning a living. Because of him and his job, we have the money to pay the bills -- to keep the heat and lights on. We have the luxury of telephones and televisions. And, we even have a little extra this year to buy modest Christmas gifts for our children. I am so thankful for every penny he works so hard to earn so that his family can have these simple things.


Nassau County is a land of abundance and, unfortunately, greed. It also brags one of the highest costs of living in the country. My husband works hard to earn and I work hard to stretch the money he brings home just to maintain these simple needs so that I can be home to raise our children. And I am incredibly thankful for our ability to do so. Our basic needs are more than met. They are greatly surpassed! And I'm happy to be able to share just a bit of our good fortune through local soup kitchens and care basket collections at school. I am teaching my children to share what we have with others less fortunate than ourselves. It is such a pitifully small gesture in the realm of things... but every little bit helps!

I am sooo grateful on this day for my life and for every one and everything in it.

Thursday, November 19, 2009

My Happiness Guru Takes A Walk on The Happy Side

I'm so excited! I just saw MY name and blog up in lights over at the Happiness-Project. Honest, I never expected that and I'm so very flattered and excited and honored that my happiness guru, Gretchen Rubin, would spend even a moment of her time reading what I have to say about happiness... or about my beautiful children... no matter how extraordinary I think they are.

Of all the blogs in the world, she popped over to mine! Check it out... read her 15 Tips on How to Stop Nagging (I wonder if that's a hint or just a coincidence? LOL) and then scroll to the bottom to see a flattering blurb about me and mine.

Thanks so much, Gretchen, for putting me in your lime light.

THANKFUL THURSDAY - Happy Happy Happy!

In keeping my positive thinking promise to myself, I've managed to maintain my recent refocus on how very lucky I am in so many ways for yet another day. If I manage to string a few more of these happy days together, I bet I'll be right back up there in the happy range of life again real soon!


So here's what's raising my happiness bar today:

[1] I am soooo thankful for the college degree I have in Psychology with minors in Psychology for Exceptional Children and Art. Though I never really worked in the field, child psychology and special education have always been a passion of mine. And, with these beautiful boys I've been gifted -- for those first timers, I'm referring to my identical twin sons who happened to have been blessed with an extra 21st chromosome -- I have put the information that has somehow managed to remain in tact in my brain nearly 25 years post-graduation to very good use. Thankfully, I can jump right in with the teachers, therapists and special educators and never feel undereducated or out of the loop. That's HUGE when you're making critical educational decisions for your children with special needs.

[2] I'm thankful for the 3+ weeks of antibiotics the boys have been on. That sounds like a strange statement... BUT, I'm sure that the colds they developed 2 days ago and are now significantly recovered from have been short lived because of the immune-system boost the boys are getting from the antibiotics. Instead of a 3-week cold, it looks like it's going to be a 3-day cold! (knock, knock knock on wood) That's HUGE too!

[3] I'm also cautiously optimistic and grateful that it appears that maybe, just maybe, we might have just barely, finally, peaked around the corner towards recovery instead of being on the downside of this whole surgical ordeal. Repeat surgery notwithstanding, Brian seems to be healing and handling his diaper changes just a little bit better than previously -- I mean, I haven't been kicked in the mouth in a whole 2 days! AND, Michael might actually be a smidgen less swollen than yesterday and the day before that. Sounds like a page turning, doesn't it?

[4] I'm thankful to be back to blogging. Truly, I do feel better... even as I type this... pondering what my #4 Thankful Thursday item should be... Hmmm, thankful to be blogging? Thankful for all the support my blog followers and fellow bloggers give me? Humbled that any one would even be interested in spending their precious time reading about my crazy life and slanted opinions (LOL)? Grateful that people take the time to read about Down syndrome advocacy and awareness so they can contribute to creating a more peaceful path in this life for my beautiful boys. Yeah, maybe all of the above!

[5] I have to do a shout out to the person responsible for getting me started on this happiness project and blogging too. I'm thankful that Gretchen Rubin (former supreme court law clerk) at happiness-project.com was riding that cross town bus through NYC one day and was thunder struck by the idea of starting a happiness project. Her epiphany has created a big happiness-project movement that I am very HAPPY to be part of! Go check out her site and start your own happiness project... Or, pick up a copy of her new book (about to hit the book stands) -- the culmination of several years of test driving all the wise-old happiness tenets you've ever heard.... and then developing a few helpful rules of her own.

And, here's one of my newest happiness-project rules: Happiness starts with a good night's sleep. Good night all! Once again, thanks for listening.

Wednesday, November 18, 2009

ANGELS AMONGST US - Angels & Families

Yet again, I apologize for my absence to you all and to myself. I made a BIG mistake taking a break from blogging which, effectively, turned out to be like taking a break from my happiness. God willing, it won't happen again!

This blog helps keep me focused on the good things going on in my life. And, Angels Amongst Us keeps me focused on the good people who cross my path and restore my faith in humankind. God knows in New York --and probably a little bit everywhere else these days too -- we can sometimes lose faith in our brother in this challenging human race (do I hear heads nodding?) So, I'd like to recognize an angel who recently crossed from the ethereal cyber world and into the real world -- the brick-and-mortar, flesh-and-blood world! An angel that has not only brightened my life but, for me, has also helped me to see the world as a kinder and gentler place to share with you all!

This is to my newest Angel Amongst Us, to my fellow blogger and new found friend, Lisa, who, in the midst of my recent darker hours, had the kind heart to send a care package. Literally! A package to let me know she was thinking about me and my family and that she cared about our well-being. Not only did we receive the warm gifts she sent that were just exactly the right gifts for each of us, but she also sent a card that expressed a sentiment I had not ever heard so loud and so clear before. A sentiment that applies not only to my immediate family but to the larger family to which I am inextricably bound by the presence of our children who happen to have Down syndrome. And, finally, to this great family I belong to called the human race.

Lisa said, "What happens to one, happens to everyone in a family."

On every level, isn't that the truth!

Thank you, Lisa, for your kindness, your wisdom and your gifts... so many gifts... so much more than just the thoughtful things you put into that box!

Special Exposure Wednesday - A Bit of Autumn Respite







Despite their discomfort, there is always JOY! Always!

Sunday, November 15, 2009

ThINKING THANKFUL -- Back In The Saddle!

Being overwhelmed with the challenges of the boys' recovery from surgery as well as the health issues of a few of my close family members, over-layed with my inability to accomplish even the most minute task because my children are glued to me, has created a HUGE deficit in my happiness bank account lately. The break in blogging gave me the time to focus on the issues at hand but, what I hadn't realized was that it also meant a break in focusing on my happiness. As such, I've spent the entire day truly miserable and searching my soul for why I feel so badly. And, I think, I've hit upon something...

Maintaining my usually pretty high happiness set-point takes work... apparently, more work than I realized. Because not attending to my personal happiness during these past 5 weeks -- or maybe during these past few years -- has definitely sunk my battleship! I am down dooby doo down down. Sure, I've got a lot of bad juju going on. [I was going to say cr*p -- which is really what all this bad stuff is -- but I'm trying not to swear so much.] It has always helped me to focus on the good stuff in my life. Without sharing what those good things are -- without posting to my own personal happiness project blog -- I have to admit there's less opportunity for me to think about all the good stuff and a lot more opportunity to dwell on the bad stuff.

I also realized that much of my self worth comes from my ability to accomplish things. With the world caving in on me as it has, the boys being so clingy and being more or less locked up in the house for the better part of 5 weeks it seems I've caught a bad case of cabin fever complicated by feelings of low self-worth... I feel as though I've accomplished absolutely NOTHING! I can't even say the boys are healed or the surgeries are behind us! And, on the rare occasion that the boys and agreeable weather conspire to give me the opportunity to go outside and play, by the time I finish poop-patrol (picking up after 2 dogs) , they're done playing and want to go back inside. I have no time to enjoy the great outdoors with my children! I am truly an outdoors[wo]man who has been locked up in this unfinished house for 5 weeks.

It's no wonder I'm on the low down.

So, TRULY, for my own sake as much as to share the power of positive thought with the rest of you, I'm back and focused on MY happiness -- which appears to help make a few others around me a bit happier too... at least that works for my beautiful children.

I know it's not Thursday, but I desperately need to shout out a few of the things I have to be thankful for:

[1] I have the most amazing children! They are sensitive and loving and kind and happy (like their Mom... generally). They bring me joy like none other I've ever experienced in life. Having these children was, hands down, the best decision I have ever made in my life. I cannot imagine what I thought was so important in life before they came to be in mine. And, honest to God, I would not change a thing about these beautiful children. They are perfect just the way they are!

(Ooh, see, I'm starting to feel better already!)

[2] I have an important life to live -- a good and healthy life ahead of me. I am well! I am physically and [usually] mentally strong. I am capable of accomplishing so much and driven to make a difference... if only in the lives of my children! And like the pay-it-forward concept, it will grow! I strive to make that difference each and every day... Even if it comes in the tiniest little baby steps!

[3] Despite feeling like my hands (and feet) were completely tied, I DID accomplish something today! I fed and bathed my children. I spent time cuddling, watching movies and playing inside and outside with them... even if only briefly. I put away a box of mixed tools and "barn stuff" that's been sitting in a box out there in the barn for 2 months. I covered the barbecue grill. I discarded an old bag of leaves that had been sitting in my yard for 6+ months now. And, I finally cut back some of the perennials that desperately needed trimming in the front garden. It's not what I was aiming for... but it counts!

[4] I am here! Posting! It's a good start in the right direction!

[5] Tomorrow is another day to get back on the Weight Watchers wagon. I've sort of maintained the 5lb loss I'd managed to achieve before the boys' surgeries a month ago. That is, I've gone up and down a bit but, more often than not, I'm down the 5 lbs. And, there are no more 7-layer bars -- don't ask where the went -- to shake me from my focus that starts again right now!

Many years ago, when my little brother was living through some tough times, I learned a wonderful positive-thinking tenet from him that I have found invaluable over the years. "This too shall pass" works well for most people, most of the time... unless, like me right now, the stuff that's getting you down is pretty much casting a long-lasting shadow on life as you know it. But my little brother had the good sense to add a simple but most important thought to that tenet. He said, "This too shall pass. And the sun will come up again tomorrow and the day after and the day after that too. And with each day, things will get just a little bit better. Just a little bit brighter!"

Smart guy, my brother!

Wednesday, November 11, 2009

Hi Honey, I'm [Almost] Home! Or am I?

In the world of emergencies, I recognize that this most recent crisis we've endured is not nearly as critical as many of yours. Just the same, when you're in it, the world has a way of closing in on you. During those times, I find that taking a minimalist approach to the rest of my life is the only tact that reduces my stress and helps me survive. For now, it appears we are temporarily over the hump of our little crisis.

Yes, this blip in blogging has been all about our penoscrotoplasty recovery. And even though we're not completely done with our recovery -- we're actually entering the second opinion stage -- there seems to be a lull, comparatively speaking, so here I am.... blogging. Because it brings me peace to get it off my chest, to share it so others might benefit from my [not-so-good, this time] experience and to garner words of wisdom and advice from others who have been here in this wretched position before me.

It seems we've been rushing to the surgeon's office nearly every other day in an effort to fend off potential emergencies such as post-surgery vomiting, multiple infections, strangulated penis, odd rashes, 8-14 hours without urination and the list goes on. The Pediatrician says, "you have to call the urologist." And, the Pediatric Urology Surgeon says, "this has nothing to do with the surgery"... Ha! Right! Both Brian and Michael continue to suffer moderate pain, skin infections and increased and abnormal swelling -- that is, more swelling than there was a week after their surgery. Not normal and DEFINITELY associated with the surgery... but I'm no doctor!

The biggest kicker, however, is that Brian's surgery has to be redone! It is, as they say, A COMPLETE DO-OVER because the surgeon chose to put only ONE of the 3 stitches he assured me prior to the surgery would be done to hold the skin back. And, apparently, an unavoidable erection ripped out the one stitch he put in. So Brian's penis was sliced open and the skin fully stripped back for nothing. We have to wait 6 months, until the inflamed skin can tolerate more trauma, and put him through all of this again!!! And, it appears we'll have to hit up our insurance who is hopefully willing to pay for it again, with another out-of-pocket $300 surgery deductible... all because the surgeon decided one stitch -- instead of the 3 he promised -- would suffice. He gambled with my son's well-being and poor Brian lost the bet! I am beyond frustrated.

Caring and concerned friends have recommended their well-respected pediatric urologists to get a 2nd opinion with regards to the past, present and future care of my boys as well as the names of plenty of lawyers. For my sanity, I've been advised to put it behind me. LOL. I promise I will absolutely do so... as soon as it is truly behind me! For now, that's not possible as both of my children still struggle in pain multiple-times-daily with every single diaper change -- Brian to the point that we need 2-3 people to hold him down so I can pull back the skin that was supposed to be stitched back at this point, to uncover his stitched up, infected and swollen penis to clean him and apply topical meds 5 times plus per day. Then, I'm reminded three more times per day when I have to give them oral antibiotics -- our second go-round -- to help fight the infection (not even going to talk about the resulting yeast infection from so many antibiotics). And, finally, I'm reminded twice more daily when I drive by the surgeon's office on the way to and from the boys' school when Brian sees the building and starts screaming and crying, "No Mommy! No! No! No!" until we're out of view of the building and he's confident he doesn't have to go back there.... EVER AGAIN! All this knowing we'll barely get over this trauma when we'll have to do it all over again with Brian in April. Poor Brian is shell shocked. Talk about pain and suffering! Besides the yelling, crying, fighting, screaming and being held down and restricted with every diaper change. It hurts him to stand. It hurts him to sit. The poor kid has been in pain for over a month now. And just when he gets sort of comfortable, it's time to change his diaper again. It kills me to see him in such pain and to be the one that inflicts such emotional terror on him so many times a day.

And through it all, my dear and beautiful children are so loving toward me and toward every one else despite their pain and these difficulties. Only the Sarge, the Old Soul and I really understand why their usually pleasant demeanor and extraordinary tolerance is currently a bit short-fused. In spite of all this, once the diaper is back on, Brian hugs me, holding me tightly around my neck and asks me through his tears and through mine, "are you all right, Mama?" It breaks my heart. And, it's not nearly over.

I'm still waiting for the recovery to come to an end before I write their recovery story in all it's gruesome detail. I do not know the end of the story yet. And it's already been a long hard road.... much much longer and much much harder for my beautiful little men than for me. Sadly, I find my usual life tenet, "this too shall pass" is not helping me much these days... because it will be some time before it all passes and I'm not one to live so far in the future (April plus recovery time is a long way off in my world). As such, I hold on for dear life to my Finding Nemo mantra, "Just keep swimming. Just keep swimming. Just keep swimming swimming swimming."

Getting back to the hump: We've missed 4 weeks of school so far but we've managed to string 4 school days together in a row with only one visit to the surgeon's office. That's progress. So, until further notice, I guess you'll find me treading these stormy waters with my chin slowly creeping higher and higher above the water line... hopefully!

My deepest gratitude to all of you for the kind words and prayers. I know that many of you and your children have endured much greater hardship and pain... I cannot even begin to imagine it. Any pain our children suffer is insufferable for us moms. And, I pray that such pain and suffering is behind us all. I truly appreciate your support.