Thursday, December 31, 2009

THANKFUL THURSDAY - The Year of Zen Resolutions

I've been a loyal follower of Leo Babauta's blog Zen Habits for some time now. I've always coveted the idea of living a zen minimalist existence... but I have 3 children, 2 dogs, 2 cats and a husband who are NOT minimalists. We have a lot of stuff... unnecessary stuff. In my single life, I'd attack the idea of such an existence with vim and vigor which... is actually sort of contrary to the whole movement. That said, I do try to simplify our existence (go ahead and laugh, it sounds funny to me too) and implement the principles of zen minimalism in super-slow baby steps every day in our lives. But I think we turned a corner this morning...

As I lounged on the couch reading the Best of Zen Habits 2009, unbeknownst to me, the old soul was peaking over my shoulder and expressed interest in the concept of a clutter free home. Now if you know us at all, you know that truly MOST of my clutter comes from my everything-collecting daughter who stashes every imaginable piece of anything (true) into every drawer and onto every inch of empty counter space she can find. Why just today I emptied nearly 100 feathers picked from our down couch from one of our kitchen drawers. In another drawer I found candy kiss foils wrapped in tissues along with a couple of toilet paper rolls. Seriously, I couldn't make this stuff up.

So, when she said she'd like to start with Mr. Babauta's decluttering counters advice, I jumped on it and we spent a good part of the day putting things away... the end product: a noticeably clear and very zen counter! Yeah! That got me thinking that I would like to keep the momentum going and apply the decluttering minimalist rules to the rest of our lives... again in baby steps. Instead of sharing straight up what I'm thankful for today, I'm going to intermingle what I hope to be thankful for in the coming months. Not resolutions so much as intentions for minimizing, simplifying and getting back to what's most important... my loved ones!

[1] Say less and listen more to my children... and my husband too. Sadly, I think I've been raising my voice too much -- with my children not my hubby -- and I desperately want to stop that. I don't want to be that person or that mother. Listening more will hopefully give me more empathy for their feelings instead of being so focused on mine... which is usually frustration b/c I spend all day cleaning up all their unnecessary stuff.

[2] Buy less and get rid of more of that unnecessary stuff to clear our home and minds of clutter so we can focus on what's really important... each other! I spend way too much time tidying up a myriad of toys that are pulled out but never really played with. We could have a lot more fun getting right to the things we like to do without going through or cleaning up the rest of the mess.

[3] Sell and/or freecycle our unnecessary stuff so that others may put it to good use. One day recently, I was preparing a new casserole dish... under dinner-time duress as usual. I asked the Sarge to shred some cheese for the recipe and he agreed but could not find the cheese grater. Finally, I explained that I knew we had a few graters in a box in the barn. To which he lamented, "you mean we haven't shredded cheese in the 9 years since we bought this house?" We've got a ton of stuff in the house and barn that we haven't used since we got married/moved in 9 1/2 years ago. That's actually pretty funny! And a huge waste of space! I mean, someone could use those graters!

[4] Clear the dockets! Stop saying yes to all the busy work and leave more time for the important stuff. My calendar fills up with a lot of unnecessary appointments that leave me with no time to do what is most important... be with and work with my children doing things they like and focusing on the areas where they need help. By doing so I could minimize my guilt over all the things I don't get to and eliminate my frustration over all the things I do but don't want to.

[5] Clear my mind... of negative thoughts that is. I'm tired of the critical chatter in my head. I'm burning the old tapes and rewriting them to be more positive, more me. I've gotten caught up in the complaining mode so many people I know have fallen into. I'm leaving that mode behind. I dislike it in others and despise it in myself.

I know... Easy to say. Not so easy to do. But I have a whole year to implement change slowly and I've grown really comfortable with baby steps. My boys -- blessed with an extra 21st chromosome -- have taught me well to be patient with my progress and to go slowly. I have learned through them to work toward my goals and accept that things come in their own time.

It's true... [my] children are the best teachers!

Wednesday, December 30, 2009

Special Exposure Wednesday: Believe In Santa?

Old Soul: Uh oh Mom! There's another Santa here!

The real Santa has a REAL beard!

And a real belly... not stuffed with a pillow.

And real boots... not those plastic covers over his shoes.

And he knows our names without being told.

And he doesn't ask what we want because he already knows.

This guy is the REAL Santa. That other guy was just a helper dressed up like Santa because the real Santa can't be everywhere at once.

B E L I E V E !
(and if you can't, at least don't mess it up for them!)

Friday, December 25, 2009

THANKFUL THURSDAY - In The Quiet Hours...

In the quiet hours between dusk and dawn, especially on this particular night -- Christmas Eve -- it is easy to remember all the blessings in my life. The greatest of these by far, are the 4 people sleeping soundly and peacefully upstairs with visions of Santa Claus dancing in their heads while I wrap their gifts and tuck them under our tree. (I know at least one of them is dreaming of a BMW and, unfortunately, he isn't going to get it again this year... Sorry Sarge!)

I have so much.... SOOO MUCH to be thankful for!

[1] Thank You God for the 3 wondrous little people you have entrusted to me to raise up into beautiful big people. My wise Old Soul and these awesome little boys are nothing short of MIRACLES... and I am honored to be their mother. I hope and pray that I can do the job justice.

[2] Thank you, also, for sending me the Sarge at just the right moment and exactly when I needed him. I am lucky to have found and married such a gentle and kind man... and I'd pick him all over again tomorrow and tomorrow and tomorrow.

[3] Thanks too, for the wonderful parents you entrusted me to. They have given me so many amazing gifts including the ability to love, to believe, to live, to laugh and to care.... deeply about and for others. They have been and continue to be phenomenal teachers and I love them both more than I could ever express.

[4] I am grateful beyond words for my siblings. My sisters and brother have always provided me with the strength to deal with anything that comes my way and they do so with undying love and incredible good humor. I don't say it often enough but I feel it every minute of every day... I love you guys!

[5] And, I'm thankful for the truly GREAT friends that decorate my life. I consider myself incredibly lucky to have been blessed with all the loving and caring people You've sent my way. Here's to all my friends -- past, present and future -- and all the love and support they've provided throughout the years. I hope that someday I can reciprocate in kind.

[Bonus] Finally, where would I be without all of the amazing creatures that have found their way into our lives? Every single one of our pets are just exactly the right fit for our family. Csiba, Molly, Tippy, Willow and Dottie continue to enhance our lives with their wild antics, endearing personalities and undying affection. Life would not be nearly as much fun without them!

A life is not measured by the stuff you have but by the love you share. I have heartfelt LOVE in my life every single day. I feel like one of the luckiest people on earth! And with such amazing wealth in my life, want to know what's on my Christmas wish list (besides the BMW for Sarge)? More laughter, more love and more of the blessed life I've been living... surrounded by people with whom I can share all of these gifts.

I wish the same for each of you! Truly, there's no better way to live!

Thursday, December 24, 2009

Special Exposure Wednesday: Christmas Is Coming... And so is Santa!

Last year the boys barely got close enough to shake his hand...
This year, Santa so totally rocks!

Brian thought the big guy in red could really use a genuine, good old fashioned hug!

Tuesday, December 22, 2009

A Simple, But Profound, Random Act of Kindness

I used to think that the random acts of kindness I chose to undertake had to work out well for the target. That is, I had to do something that somehow improved someone's life in order to get credit in the universe or to gain the boost in my own happiness. My happiness guru, Gretchen Rubin, once said that random acts of kindness made her suspicious... "why would the car in front of me at the toll booth pay my way?" I call that a random act of random kindness. That is, the receiver has absolutely no idea and is not in a situation where assistance is warranted. On the flip side, carrying bags for an elderly woman who's struggling to get to her car with her packages warrants assistance. I try to make my acts random... but warranted. The kindness has to meet an identified need, I thought. Holding the door open for the person behind me. Letting a waiting car enter traffic in front of me. Picking up a dropped item and handing it back to the dropper. You get it. In theory, my happiness boost would be in addition to the appreciation boost of the target. It sounds a bit selfish but then the whole concept of helping others to feel happier yourself does too. The thing is, it works exactly this way. Doing unto others [in a good way] feels good!

I recently discovered something new and interesting while performing a random act of kindness. I found that it doesn't always, or even have to, work out the way I think it should... for either party actually.

On the way to dropping the boys off to school, in a rush to get back to my home town for a CPSE meeting, I noticed a pigeon flailing in the middle of the street at a busy intersection. The poor bird had apparently been clipped by a passing car and as others rushed past to get where they were going, they drove over the bird -- wheels on either side -- so as not to crush it. It disturbed me to think that this poor bird was injured and terrified while cars continued to pass over it again and again. Despite already being late, I pulled over and ran out into the intersection to pick the bird up. Amazingly calm, the bird allowed me to gently lift it out of harms way. I walked to a nearby house and placed the bird carefully in the grass. This beautiful bird, suddenly peaceful, allowed me to lift it's wings one by one to make sure they were intact... They were. It was as if he recognized I was there to help him. He quietly nestled into the grass to rest as I took my leave. Though it was cold and I felt immense guilt abandoning him there, the boys still had to get to school and I still had to get back for my meeting. I worried for his well-being but felt I had little choice. So I gently touched his head, said a little prayer and left. The rest of the day, I kept thinking about that poor little bird. Hoping it had flown away. Thinking that pigeons don't migrate and that it wouldn't be too cold for him to sit in the grass until he felt strong and calm enough to fly away. I'd saved his life, I thought. I hoped.

Sadly, on the way home from the afternoon school pick-ups, I saw that the pigeon was flipped over, one wing extended into the air... He had died right there on the lawn where I'd left him. I was overcome with regret that I hadn't kept the pigeon in my car to help nurse him back to health, or to bring him to a wildlife veterinarian who could do so. Slowly, I realized that no effort on my part would have saved that bird's life. His injury was fatal. His fate sealed before I ever stopped to perform my random act of kindness. So, had my actions made any difference whatsoever?

Recently I've watched my elderly father fighting the unfortunate illness of Alzheimer's. Losing his memory and his way, not gracefully but in a slow and emotionally painful process. Masking his fear with humor... I know he is scared. I thought about how he'd expressed his desire, just a handful of years ago, that he never wanted to go this way. And I thought about that pigeon, flailing in the street, cars rushing past, driving over him. Terrified at what had befallen him. He too, I'm certain, would not have chosen to go this way.

My father is much like the pigeon. Flailing. And, as his illness progresses, in a way, I am there in the street with him... flailing. Afraid of what is to come. Looking for a peaceful place, a peaceful state of mind, to live out these last moments... however long they may last.

I gently carried that pigeon away from his terror. Relieved him of his frantic flailing. Perhaps I calmed his fear, if only for a moment. Maybe I brought him to that peaceful place where he could relax and come to accept what was happening. That the end of his life was upon him. And, recognizing the end was near, perhaps he sat in the grass, marveling at what a beautiful blue sky there was today; what a wondrous world he'd had the opportunity to affect; what an incredible life he'd managed to live; and what a legacy he was leaving behind.

Or perhaps, that bird performed the random act of kindness for me. Showing me the peaceful place in the warm sun to relax and stop being afraid.

I hope when it's my time, if I am flailing, that someone is there, to perform the random act of kindness that affords me a peaceful place to spend those last moments (however long they last). Or perhaps, I will not be flailing, remembering that pigeon and marveling at the blueness of the sky.

That random act of kindness was far more profound than I could ever have imagined...

Thursday, December 17, 2009

THANKFUL THURSDAY - Dedicated to My CPSE Committee

Yep, today was one of those days. As I said previously, the parent of a child with special needs makes all educational decisions by committee. You convene the committee if you want to change anything, add anything, question anything, remove anything... anything anything. This is no easy process -- but I'm sure you gathered that from my last post. More than anything, it's VERY stressful for the parents. Will I get what I believe my child needs (never mind what I WANT)? Will it work? Will it be enough? And the list of questions and doubts run through your mind at breakneck speeds. As soon as you resolve one issue, another quickly takes its place. Still, in the midst of the difficulty, there are moments where someone or, if you're really lucky nearly everyone, stands up for you and the planets align and the decisions seem just right and you walk away relieved. Today, was one of those days. Maybe because I was hyper-prepared with research to back my every desire. Maybe because it was just the right thing. Or maybe because the Sarge was there to chime in and innocently ask that question that makes everyone secretly fear a discrimination lawsuit. LOL. WHATEVER!!!!! We got what we went in for... and sort of more. So here's to that wonderful committee who, in my mind, did the right thing for Brian and Michael today!

[1] A bit fat thanks go to the Nassau County Rep who shall remain nameless lest he becomes inundated with so many requests for out-of-the-box solutions that he won't be able or willing to do so in the future. He TOTALLY looked at the boys' challenges, listened to the concerns of the school and ours and then tweaked the suggestions I had put together to come up with a solution that fit for everyone. He was awesome! I'd have hugged him -- instead of just shaking his hand -- if that wasn't totally inappropriate. Thanks H!

[2] A "Right ON!" and big thanks to the District school teacher, Ms. Toni Marchetta, who pointed out that individualized teaching according to each child's needs is what she does every day -- help kids at their level -- and what every teacher should be doing for every child. It was exactly the right comment at the right moment to set the mood and expectations for ALL of the committee members. I'm looking forward to the boys' attending kindergarten in her school and hopefully, in her class... Her attitude is absolutely right on target! She gets a second shout out for mentioning that she deals with behavioral issues in her "typical" kindergarten class too. Great reality check... THEY ARE 4-YEAR-OLDS!

[3] I'm ever so grateful for my school districts' and committee chair person's accommodating nature. I'm not saying she's a pushover and gave us everything we asked for... What I'm saying is that she immediately recognized that we were in a unique situation where some needs were being met in one environment while others needed more intensive and creative attention. Then, she listened to what other committee members were saying without feeling the need to exert her authority. That's not an easy thing to do as the leader of the committee.

[4] And, thanks to the Sarge who interjected just the right comments and questions at just the right moments. I'm telling you, he turned a few heads today! You could train a husband all your married life and never achieve that. I'm glad that mine arrived at the same station, at the same time I did! He was the yin to my yang today and I love him for it!

[5] Finally, I am thankful for the boys' teacher, who brought her concerns to me regarding the growing gap in the boys' academic achievement and their typically developing classmates. I'm glad she felt comfortable and recognized that she could talk to me and for getting that ball rolling! Though I'm not sure the solution was what she or her colleagues had in mind, I hope that it is one that works well for the boys and for her. I'm grateful for her immediate post-meeting willingness to jump right in and embrace the solution and address the identified challenges at hand. Upon pick-up today, she was already making plans to team with our home service providers to ensure success; putting in place some of the recommendations of the committee to encourage language and facilitate demonstration of their existing academic skills (given the expressive language delays... that's not easy to establish). Her job is not an easy one but I hope that the boys' progress -- as a result of these changes and her effort -- makes it a rewarding one this year!

Finally and most importantly, I want to thank all of the people who helped me put together a workable recommendation that was totally specific to my boys -- their needs, strengths, weaknesses and personalities -- and solidly backed by fact-based evidence, for the committee to tweak. My undying gratitude and respect to Kathleen, Valerie, Jessica, Cindy, Jo, Steve, Trish, Lori L, Annmarie, my Multiples w/ Down Syndrome online family, and every other professional and lay person who offered their experience, expertise, opinion and advice... and for all of you who listened even when you were sick and tired of being my sounding stone on this topic. Thanks. We -- the Sarge and I and the whole committee -- could not have done it without each and every one of you.

I still have a lot of footwork to do to get the solution implemented. And, the solution puts a lot of onus on me and will significantly change our after school routine and home life. It also opens doors and endless exciting opportunities for the boys to progress. Change is not always easy... but, I have found, it is usually good in the end. I'm certain, the changes that will be implemented on behalf of my boys will have a positive outcome for them and hopefully for others with Down syndrome who face similar challenges in the future.

Sunday, December 13, 2009

Down Syndrome Awareness --CPSE: It Works If You Work It

I'm in the throes of preparing for the boys' transition from CPSE (preschool) to CSE (Kindergarten). Though the process of collecting information started at their birth, 4 1/2 years ago, the boys are getting closer and closer to the reality of kindergarten each day. As such, I've talked at length with every known-to-me expert in the field of educating children with special needs including other parents of children with special needs -- especially Down syndrome but also those whose children have autism (I explain that later). I've met and spoken with CPSE Chairpeople from my and other school districts, to past and present SEPTA Presidents and special educators, to the boys' Early Intervention and current therapists, social workers, teachers, special education administrators, school psychologists and even to a few self-proclaimed know-it-alls and been-there-done-thats... I've pretty much talked to anyone who might have any tidbit of information or a unique perspective that can teach me more about how best to educate my boys...who happened to have been blessed with an extra 21st chromosome (aka Down syndrome).

What I've discovered is a lot of disparate information and unique approaches with one over-riding theme. Each child is different. Each child's educational, developmental and social/emotional needs are different. Each child has a different learning style, pace and temperament. And the public schools are mostly a one-size-fits all approach to educating typically developing children with a small group of people dedicated, in theory, to addressing the special needs of atypically developing children like mine. I also found that my school system mostly wants to do the right thing with regards to helping my children learn and develop... but that they don't necessarily know what that is.... THAT's my job to determine with the help of all those folks I mentioned above.

I've also found that gearing up for the fight that every parent of a child with special needs goes through in the days and weeks leading up to each CPSE meeting, is necessary preparation as --I've just begun to understand -- services are provided to the children of parents who are well-prepared, understand the components of their children's developmental and educational needs and can suggest proven methodologies and services to address those needs. So if I can prove it's effectiveness -- not just for children with Down syndrome but for MY children with Down syndrome -- then I can have it... within reason... mostly.

So here's what I discovered thinking specifically about my boys and how they're doing with their multi-faceted development:

My boys have shown significant growth socially, emotionally and in the life skills area when participating in the daily activities of their 15:1:2 integrated classroom with their typically developing peers. However, in academics and speech development & articulation, the teaching staff, speech therapist and I believe that my boys need one-on-one attention to grasp the academic skills and essential building blocks they need, not only to keep up but to succeed in life. One might then assume, as I thought last year, that the smaller "self-contained" classes made up entirely of children with special needs might offer a better format for academic achievement. However, further discussion ferretted out the truth. In groups as small as 3:1, their teacher felt that MY boys still underperformed, needing additional attention to grasp academic concepts. That means that a smaller, self-contained class with a higher teacher-to-student ratio -- which I do not advocate for the boys -- is NOT the best answer... for MY children.

To further increase my knowledge of academic achievement in children with Down syndrome, I attended a conference on Best Practices in Educating Children with Down Syndrome, and discovered that discreet trial training -- a component of ABA therapies typically prescribed for children with autism -- is proving to be an effective method for teaching and pre-teaching academic concepts to children with Down syndrome as well. Got it!

So, now that I've determined specifically how MY boys learn and I have research to support the implementation of appropriate methodologies to address their educational needs, all I have to do is present it all in a comprehensive way to my CPSE... right? Unfortunately, not!

It's pretty much also up to me to understand and suggest our desired solution for how, how much and when these services should be delivered. Will the boys participate in 1 hour of discreet trial academic therapy every afternoon after school, at home or in a center? Or, should these services be provided during school? Should it be 1 or 2 hours each day? Is there a therapist available to deliver said services in any of these locations? Some of these answers are in the existing research and some will require a little more footwork before I can determine what the best scenario is to address the boys' educational needs, determine the logistics of working it into their current schedule and then present it... all with fact-based evidence that it's the right methodology and the right amount of available services for MY boys, specifically.

THEN I've been advised to ask for more than we need and compromise down to the solution we've come up with and to make sure my husband takes the day off to attend the meeting and is prepared to speak eloquently about every aspect of the challenges, research and our desired solution. I've heard that CPSE committees take parental recommendations more seriously when the Dad is there and has a critical speaking part. Sounds as crazy as it is unfair but I've seen it work and I wouldn't take the chance on not getting the right services for such a ridiculous (and arguably illegal) reason. The Sarge is well-versed and has the day off to attend. We know what we want, what we're going to ask for, how we prefer it to be delivered and can provide fact-based evidence specific to our children that this is the right solution necessary for them to meet their academic needs.

And if they say no... we sit tight and quietly insist that this is our preferred solution. If the committee (usually the chair, if there's a hold-out) absolutely does not budge, then we'll be advised to get a lawyer. And the lawyer will tell us to get an expert. And the expert -- who we already know and has assisted us in putting together the solution in the first place -- must be called in to scientifically document the appropriateness of the solution. She does so and the committee approves our original suggestions with no further ado. LOL

It's a process. One that kinda, actually works once you learn how to work it (may it always be so). And, in truth, I recognize that we're incredibly lucky to have it. In the past, the options were limited and, for the most part, children like mine were confined to institutions for life with devastating outcomes. As stressful as this CPSE process is, I'm glad for the opportunities afforded my children today. And, I hope that their opportunities continue to grow as our body of knowledge on how best to educate our special children increases.

Friday, December 11, 2009

THANKFUL THURSDAY - Better Late (Maybe Not This Late) Than Never

I was tossing and turning and finally decided to get up and get thankful so I can go back to sleep peacefully. Maybe I couldn't sleep because I was worried that I hadn't gotten my Thankful Thursday post up on Thursday or, for that matter, my Special Exposure Wednesday post up in several weeks... sorry, gotta download the 834 pics the boys took so I have room for more photos on my camera. Or maybe it was just too hot in the bedroom. Or maybe one of a hundred other things running through my mind at 3:07 AM. Who knows? But, each waking thought points to something I'm thankful for, so I thought I'd come down and share:

[1] I'm thankful for the heat in my house. It got REALLY cold yesterday afternoon and into last evening and we finally dropped below the freezing mark last night. But, my home is toasty and warm and welcoming. Like I said, my bedroom is a little too warm for my taste... However, my boys who currently share the room with the Sarge and I (due to ongoing construction in their bedroom) have not yet mastered the use of a blanket so a little too warm is perfect for them. Otherwise I'd be up worrying that they were too cold. And, I'd rather be warm than cold. Once again, I'm ever so thankful I have the luxury (and it is a luxury to be warm inside when it's so cold outside) of heat when so many do not.

I hear that the orphanages in Russia that house countless numbers of children with Down syndrome who are given up for adoption don't bother heating because, I understand, the cost of the heat and the value of the residents are not considered worth it. God help those poor babies who are layered with clothing in such a frigid place just to survive... barely. I'm grateful for the heat in my home that keeps my beautiful children, 2 of whom also happened to have been born with that extra 21st chromosome, warm each day and night. I wish every one of these babies had the same!

[2] I'm grateful for the computers -- that' right 3 of them -- that I have in my home. Sure one is more than 10 years old, another is 5 years old and one is pretty new... But I have 3 good working computers that I, the Sarge, and our children use daily as tools to help us learn something new every day. The boys love all the educational games we have and play to the point where I can barely get them off the computer to eat dinner. They especially fight for time on the one that has the Dora Lost City game... or the one that runs the Jump Start Animal Adventures game. The other day, the boys and I were watching the movie "The Hulk" (they LOVE that film) and there was a scene shot in a small, remote city in Brazil. I noticed the living conditions in this city were unbearably crowded (bear in mind that I come from one of the most crowded areas of the USA here in the NYC suburbs) and sparse. The most basic amenities were missing. Now I know it was just a movie, but I'd venture to say that this is more the norm than it is the exception in many parts of the world. So, I'm grateful to be here, in my toasty warm house, with 3 computers to choose from, back in the good ol' USA. It's a huge luxury and one that I do not take for granted at all!

[3] I'm thankful for all the engaging and EDUCATIONAL computer software and games available to help my children with Down syndrome learn. At last year's national Speech & Hearing Conference held in Chicago, they held a special track of workshops focused on working with children with Down syndrome. The outstanding emphasis was to get these children on the computers because, generally speaking, this population does incredibly well using and learning via this amazing tool. My guys are no exception! They LOVE the computer and are mastering and demonstrating academic skills that their Pre-K-4 teacher still does not believe they are capable of (because they don't have the opportunity to demonstrate them in the classroom the way they do on a computer). Yeah, I'm all for the use of computers in educating my children! I'm for anything that helps push them along academically. So if any of you have any suggestions for computer-based educational programs I can use with my boys, please drop me a line and let me know.

[4] I'm thankful that my Dad is still here and well enough to walk around the corner -- as he did last night -- to visit with his grandchildren. With his rapidly-declining memory, his independence is waning... I and the Old Soul were relieved to see him looking so well after reports otherwise. The Old Soul has a special relationship with her Grandpa as he's been picking her up from school for the past 3 years. And, though his stint as her sole pick-up guardian has recently come to an end -- he still rides with me for afternoon pick-ups -- she has not lost the connection and misses his company terribly. I was heartened to see the relief in her eyes when he showed up and to watch her hug and kiss her grandpa and engage in their special give-and-take teasing as they have always done. There's a special relationship there, and regardless of what difficulties have passed in our lives, it is there with my Dad and I too.

[5] And may I never fail to recognize or take for granted the beautiful relationship the Old Soul and I have with my Mom who supports us in extraordinary ways on a regular basis... not the least of which is participating every other Wednesday as a chaperon for the Old Soul's Brownie meetings. During meetings and trips, she helps me keep track of the boys and is ever engaged in the activities of the troop with all of the girls too... all of whom are getting to know and love Grandma Alice as well. This week we took the troop caroling at the local senior center. With only 10 girls, the Old Soul commented that it was harder than the trip they made with the entire 2nd grade last year because "there was nobody in front of you to hide behind" (LOL, she' NOT a performer). After singing their 6 songs for about 60 old folks in the "big dining room" we went to share our holiday cheer with the 15 people in the "little dining room down the hall". THAT was tough! Those relegated to the little dining room are suffering from Alzheimer's and dementia. Unfortunately, a few of the residents' behaviors there were a bit upsetting for some of the girls and for one mother. Honestly, I'm sorry for their discomfort, but I couldn't have been prouder of each and every one of them for the way they bravely carried on gracefully through their performance despite what felt to them as heckling. I explained to the girls what had been taught to me all my life -- not so much in words but in action -- that the folks here were old and not necesarily in control of their minds and mouths. Hence what seemed like heckling during the performance was not personal or directed at the girls at all. I explained how thankful these folks were to see and hear the girls perform. As I talked with the girls, I realized that watching my Mom, my daughter and even my little boys engage with the residents, shaking hands and touching them, my Mom even putting an arm around an upset resident -- even in that little dining room -- that my ability to see past an individuals difficult behaviors or physical limitations and to recognize the human being within comes from my Mom. Some of the girls were traumatized by the mental condition of residents... but not me, not my Old Soul, and not the boys. My 3 children followed their Grandma's beautiful example, as I have always done, and walked away from the experience not traumatized but grateful for the opportunity to bring a little joy into the lives of people who might otherwise not have been visited. I recognize it was hard for each and every one of them. But, when I asked the Old Soul how she felt about the patients' behaviors, she said, "Oh, it was just a little distracting." She's a chip off the old block all right... I'm not talking about me so much as about Grandma's block, really! It's true, the apple doesn't fall far from the tree. I'm happy that I had my Mom to teach me that no matter what the conditions, you need to see the person. And I'm grateful that this lesson has been passed on to my Old Soul and the boys. Thanks Grandma.

Saturday, December 5, 2009

Dark But Funny Thoughts

Here's a little glimpse of my [and my family member's] dark sense of humor:

Yesterday evening I got a telephone call from my sister. She jumped right into her stream of thought and said, "We're going to make funeral arrangements for Dad on Tuesday night around 6-ish. Is that convenient for you?"


"Ahhh, no, I'm busy Tuesday. Could we make it next week?"

LOL! How could I answer such a question so callously??? You've gotta know where the question is coming from!

No, Dad didn't die! He is quite alive and continues to wreak his own variety of havoc on our lives with his memory and health issues (typed with the utmost love in my heart, truly!). It's just that we were advised by our elder care attorney to spend down -- in legal ways -- Dad's savings before the state spends it for him. One of the lawful expenses we're permitted to incur on Dad's behalf is a pre-paid funeral, burial and service. But, to do so effectively, you sort of need to understand your elderly loved one's wishes. When he was a slightly younger man, as one of the oldest High School football officials in his association, he used to say, "if I drop dead on the field, just dig a hole in the end zone and roll me in." But, Dad updated that thought when he stopped refereeing. Now he says, "I don't care what you do with me once I'm dead. Just don't waste any money on me. Throw me at the curb for the garbage men to pick up!"

So within the realm of what's possible -- and what's legal -- given his wishes, we're trying to make the appropriate arrangements ahead of time.

Tuesday or next week... I don't think the garbage men would take him. That might actually require a special pick-up. LOL

Thursday, December 3, 2009


You know, I've spent way too much time feeling overwhelmed lately by the chaos that seems to have invaded my life. And, I've gotta say, I'm a little sick and tired of feeling this way... Locked up in the house with sick and/or recovering kids has definitely taken it's toll on my happiness. But, as my smart little brother once prophesied so many years ago, the sun came up again today (yeah -- 70 degrees and sunny) and I felt a little less stressed than I did yesterday (45 degrees and rainy -- ugh). And I knew that I had finally turned the corner and was about to go over the proverbial hump. I just knew, somehow, that I was moving on to better days, to feeling good and to healing... Yup, just in time to prep for the next big hurdle... the boys' CPSE-to-Kindergarten transition meetings (show of hands if you've been there, done that)!

Trite as it may sound, all day long the song "Here Comes The Sun" has been running through my head and out my lips.... "And I say... it's all right!" (did you sing it?)

So, for what it's worth:

[1] I'm thankful for the beautiful 70 degree day we had here today on Long Island. It's December 3rd and that's about 25 degrees warmer than it should be. Surely, that's a sign... or, at the very least, it's just what I needed to pick myself up, dust myself off and get back in the game.

[2] I'm grateful for the recent realization that I have an opportunity to make amends for unintentional hurts I inflicted a few years ago. For the record, I heard this 'make amends' message three times recently. And, I'm proud to say I finally got it! While the gory details are really none of your business (LOL), I am hopeful that my forthcoming apologies might start a chain of healing for all parties involved.... them and me. I know this is cryptic.. but that's so maybe others might come to their own realization that it's never too late to say you're sorry. And, I am...

[3] I am grateful that the young man who accidentally rear-ended me today did so gently, at low-speed and at a point when I was NOT looking in the rear view mirror so I had NO IDEA he was about to hit us and didn't tense up on impact... No whiplash for me or my dear old Dad who was safely seat belted next to me. (Maybe it had something to do with that little fish on his bumper that said "Jesus"!) Anyway, no damage done. Apology accepted. A handshake and off we went. Then it occurred to me that it happened because he was so preoccupied with looking at what was behind him as he attempted to merge into traffic that he simply forgot to look ahead to see if the car in front of him -- namely, me -- had already merged. It was a message to me to stop dwelling on what's behind me and pay more attention to what lies ahead. I swear this was the second time I heard THIS message today! I must be thick or something... OK, I GOT IT!

[4] And, I'm thankful for my 10-year old, VCR-format yoga practices tape (and a barely working VCR to play it in). That morning regeneration routine is the best 15 minutes I've spent in a long time. And, it's a good start! That's all it takes... that and 2 or 3 reminders, apparently!

[5] A strange sense of calm has recently settled over my mind. Maybe it's the yoga. Maybe it's the healing (the boys and mine) or the counseling. Or maybe I got some sense knocked into me in that little accident today. A wake up call... Or just the winds of change? (Did you hear that wind howling last night?) Whatever it is, I'm grateful for the calm... Man, I hope it's not the proverbial calm before the storm ;o). But, even if it is, I'm grateful for it. The calm feels way better than the chaos it replaced any day of the week.

Time to go rest my weary non-whip lashed bones! And tomorrow, the sun will come up again...

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


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 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.

Thursday, October 29, 2009









At least my sense of humor is in tact... sort of! Still struggling through the post-surgery recovery. I'd say it's 3 steps forward and 2 steps back but it feels like we're moving more backwards than forward at this point. We've had multiple scares, tears, bumps, bruises and set-backs. Sounds like a Halloween story... kind of looks like one too! Not good!

We tried to come back once we were "on-the-mend" and that's what set us back again, I think. So this time, we won't be back until my poor little guys are fully mended. Totally, 100% back-in-the-saddle, as they say... 'cause right now, we're back to walking like cowboys and no riding at all.

Prayers are greatly appreciated if you're so inclined. Thanks for your patience.

xo maggie

Sunday, October 25, 2009

Down Syndrome Awareness -- 31 for 21 -- A Day Behind; Delays Ahead!

Here's my post for yesterday. It was delayed! No particular reason except I didn't do it... yesterday. But, here it is today.

I purposely didn't post for Down Syndrome Awareness yesterday to make THIS point. Delays are just delays. They are not the end of the world. Nor the end of my child's development. It's just a delay. Whatever the goal was, it'll come in it's own time. Brian and Michael -- who happen to be blessed with that extra 21st chromosome (aka Down syndrome) -- will reach those goals when they are ready. And, yes, there may be things I can do to help them get ready. To help them reach those goals a bit sooner... maybe.

I equate this to being stuck in a traffic jam. (You can tell I'm from NY right?) I can wait it out, creeping along, mile by mile... making my slow progress. I can detour or try another route which may or may not be better. I can distract myself with music or another activity (hands-free phone, pit-stop, etc.). I can be patient or impatient. Whatever I do, I am still delayed. Stuck here in traffic.

Often, when I encounter a delay, I choose to detour. For me, any progress or movement in the general direction I want to go is good... preferable to sitting still and doing nothing. That's my personality. One of my NYC commuting rules with my sister was to keep moving. When the LIRR let us off underground at Penn[sylvania] Station in Manhattan each morning, to get out of those deep, dark and sometimes smelly train tunnels and up to ground level we kept moving. If we reached one staircase on the platform that was overcrowded, we'd keep moving to the next, or the next, or the next until we found one that was moving. That was key for us. For me. (There's my "Just keep swimming" mantra again!)

This rule holds true with my boys' development too. Though there are delays (you've probably already heard my 'no limitations' speech), we just keep moving it along. When we hit a delay, we change focus, try something new, go to the next proverbial staircase, keep moving toward the goal. Try a different goal and come back to this one later. Again, it's my personality that dictates my methodology. Could I wait in line until they reach the goal? Sure. That's just generally not MY way.

The thing is, we need to keep in mind that a delay is JUST a delay! It doesn't mean you can't or won't get to the goal. It just might take a little longer. Children with Down syndrome generally develop along the same lines as children without Down syndrome. They just do it their own way. Maybe they're waiting patiently in line. Maybe they're detouring, taking their own route, or distracting themselves with other enjoyable stuff -- like life -- or other important development. Maybe they're just taking their own time. Key words: Their OWN time. Not mine. Not yours. But theirs! Either way, it's just a delay!

Saturday, October 24, 2009

Down Syndrome Awareness -- 31 for 21 -- Our Penoscrotoplasty Recovery Story...

End Note: As you're making your decisions. To investigate. To pursue. To intervene surgically or not. I just want to provide you with another pertinant piece of information, you should be aware that penile sexual function is not affected by an inconspicuous penis. It is completely functional! However, the larger the fat pad, the less -- how should I say this? -- access there is to the full penis, erect or flacid. Also, increased girth (ie. excessive weight) exacerbates the problem though the surgery does help with this... to a point. That is, hyper-obese men often have this problem and this surgery will not correct it fully or at all depending upon the level of obesity.

This is NOT a botched circumcision. In fact, it has little or nothing to do with the circ at all.

Friday, October 23, 2009

THANKFUL THURSDAY - On Friday - Short On Time But Not On Thanks!

OK, I'm a day late and a dollar short again! But, I'm never short on things to be thankful for...

[1] I'm thankful that all of my children are on the mend. Surgical wounds are healing, stomach viruses gone, I'm not even feeling sleep deprived at this point! We got the good word at our Post-Op appointment that all is well and the boys' wounds are healing. They're now beginning to lose stitches (as expected) and are entering into the itchy phase of healing. This could get interesting!

[2] I'll be incredibly grateful to resume our "normal for us" schedule of school drop-offs. The boys were cleared for unrestricted school and activities beginning Monday! Yeah!

[3] I'm thankful for these 3 beautiful children I have. 8 years ago today, I became the most blessed mom in the world when I gave birth to my beautiful Old Soul. What a beautiful, peaceful and natural beginning to motherhood! I relive that day each year on her birthday and it makes me smile and feel warm inside. (I guess this is what my Mom's been talking about for the past 47 years, when she calls to wish me a happy birthday LOL!)

[4] I'm grateful for the 1-week reprieve from throwing the Old Soul's birthday party for her friends. It would normally have been held tomorrow in a big friends and family indoor/outdoor bash but because of our recent trials and tribulations... we split the family and friends and postponed the latter until next week. And, I couldn't be happier about it. Family will celebrate with us tomorrow and I'll have an extra week to make her Post-Halloween Costume Ball with her friends the super fun and memorable event she wants and deserves.

[5] I'm thankful for my wonderful friends who have been my life line and phone support through these past weeks of quarantine, surgery and recovery. It would have been tough without them. Special thanks to Tammy, Nicole and my sister Loree who checked on me nearly every day. Don't know what I'd do without you ladies.

Thankful this week is finally over! LOL

Thursday, October 22, 2009

Special Exposure Wednesday - Creative Self-Portraits

These are Brian's self-portraits. Lounging and one leg comfortably crossed over the other. Very Brian! He laid on the couch and snapped over 100 digital pics from exactly this position.

These are Michael's self portraits. He took 150+ digital pics all over the house catching several shots of each "subject" he studied including the cat, his sister, the dog, the balcony, his brother and his own feet and face. Very Michael!

They may be identical twins but they are very different from each other. And, they may have Down syndrome but that sure doesn't stop them from being just like every other 4-year-old kid!

See more Special Exposure Wednesdays on 5 Minutes For Special Needs!

Wednesday, October 21, 2009

Down Syndrome Awareness -- 31 for 21 -- We're All Members Of The Same Team

I read yesterday's post to my Old Soul before publishing. Here's the conversation that ensued:

Old Soul: You don't see a lot of children with handicaps around much anymore.

Me: You do realize that many people consider your brothers to be handicapped because of their Down syndrome.

Old Soul: They're not handicapped. I never even think about their Down syndrome. They're just Michael and Brian!

Me: That's really nice. In fact, a handicap is just a weakness. And we all have our weaknesses.

Old Soul: Yeah, like there are parts of Math that I just don't get sometimes.

Me: Me too! Math is one of my weaknesses. We all have weaknesses. You know, on a bowling team, a low-scoring team member is called the team's "handicap".

Old Soul: Why? That's not very nice. It doesn't even make any sense.

Me: Because that low-scorer is considered the team's weakness.

Old Soul: That's not true. They're just another member of the team!

Me: [smiling]

She's right! We are all simply members of the same team. The Human team! I wish the whole world could think like my Old Soul. She makes me so proud! Every time she opens her mouth she spews such deep thoughts and wisdom beyond her years. I keep thinking, "I must be doing something right!"

Here's a deep thought: Maybe her Old Soul is smiling and saying the same thing about me. LOL

Tuesday, October 20, 2009

Down Syndrome Awareness -- 31 for 21 -- "God Doesn't Make Mistakes"

A new-found friend and Co Mom-of-a child-with-DS Blogger, Tracey at, shared this on her blog. And, though I generally prefer to create content on my own versus just circulating other folks' content, I thought this was worth repeating. So, for all of you who happen to read my blog but haven't seen this on Tracy's, here are some invaluable words of wisdom she received when her T21 angel joined her family. I've borrowed this with her permission to share with you:

A reminder that God doesn't make mistakes.

"As a small group of political and church leaders look on,
Jesus lifts a mentally handicapped child out of her high chair, kisses her and sits her on his knee. He dips a crust of bread in wine and feeds it to her, morsel by morsel.

As he does so, Jesus says:"I know what you are thinking. You need a sign. What better one could I give than to make this little one whole and new?
I could do it; but I will not.
I am the Lord and not a conjurer.
I gave this mite a gift I denied all of you -- eternal innocence.
To you she looks imperfect
But to me she is flawless,
Like the bud that dies unopened or the fledgling that falls from the nest to be devoured by ants. She will never offend me, as all of you have done.
She will never pervert or destroy the work of [my] hands.
She is necessary to you.
She will evoke the kindness that will keep you human.
Her infirmity will prompt you to gratitude for your own good fortune...More!
She will remind you that every day I am who I am, that my ways are not your ways and that the smallest dust mote whirled in the darkest space does not fall out of my hand...

I have chosen you.
You have not chosen me.
This little one is my sign to you.
Treasure her!"

And I say, "Amen!!!!" I wish the whole world could see how our children with Down syndrome are an absolutely beautiful and flawless gift to this world! Thanks Tracy!

Monday, October 19, 2009

Down Syndrome Awareness -- 31 for 21 -- Penoscrotoplasty: The Decision and The Surgery!

On a personal note, thanks to all of you for commenting and specifically expressing your interest in this topic. It is for all of you that are experiencing that sinking feeling that something is just not quite right "down there" that I am writing this story. I find the shroud of secrecy that exists regarding the male genitalia keeps such conversations out of the mainstream. For mothers of sons, we need to be able to talk about it, to confirm our suspicions and to take action... if we choose to! I've received many comments from Moms regarding their sons' penes and this problem. Some with Down syndrome and some without. So, for the record, this is not necessarily or specifically an affliction for those with Down syndrome. I've heard from 1 Mom whose son with Down syndrome outgrew the condition. I've heard from several Moms whose sons with Down syndrome did not outgrow the condition but learned to live with it... with modifications (and assistance in some cases). The choice to surgically correct may or may not have been presented to these Moms... or they may have made a choice not to surgically correct. I do not know! And, I've heard from 1 Mom who chose the path I'm on now and, though her son's recovery was difficult, she has absolutely no regrets and one year post-surgery, her now 6-year-old son has been potty trained and urinates using the stand-up method and is infection-free. Every body's child is different. Every body's journey is different. This particular saga is mine. The decisions I made were made specifically for my children. I'm telling it to get the word out and to give those who walk in my shoes -- or shoes that are similar in any way at all to mine -- that there are options. My old boss used to say, "It's all about choices!"

Part 2: Penoscrotoplasty: The Decision and The Surgery!
The Decision: I went home from the new Urologist/Surgeon thinking I would not put my sons under anaesthesia or the knife unnecessarily again. Our post-surgical Tonsillectomy/Adenoidectomy experience last March was horrendous and I did not want to risk their well being... Besides, I wasn't sure my heart could take their pain again either. But, it was their well-being that had me investigate the problem in the first place. I wasn't sure that "doing nothing" was doing anything... for them and their well-being. So, as with every tough decision put to me, I over analyzed it! I did online research. I asked everyone I know (much to the male listeners' discomfort). And I put pen to paper... writing out several pros and cons lists. In the end, with all the information I gathered, my list looked something like this:

If I do NOT correct the boys' inconspicuous penes problem through surgery NOW:


1. They don't have to undergo surgery. They suffer no pain, no risk of delay due to potential surgical/anaesthesia complications or prolonged absence from school etc.
2. They might outgrow the fat pad themselves so the surgery would have been undertaken for nothing (or would it?).


1. They undergo surgery again. Anaesthesia introduces the potential risk of brain damage and/or delay. Pretty much guarantees they will have pain, discomfort and absence from school. Worry about post-surgical recovery again (went south last time, could happen again).

2. Toileting. Cannot potty train them in a "normal" way which could make them the object of ridicule in school going forward (in diapers or toileting in a modified style). Will take longer than the extended length of time I'm already expecting AND complicates the procedure because I'd have to teach them to pull back the foreskin prior to urinating... not likely they'll ever do this given past trauma. Want them trained, if possible, for kindergarten next year. Is that possible?

3. Hygiene. Given the foreskin tearing and bleeding scene with the first Urologist, the boys won't let me touch their penes, let alone pull back the skin to clean. If I don't correct, the urologist says I have to teach them to do this themselves. NOT very likely... which means introducing irritation, infection and potentially life-long dependence on others for good hygiene.

4. They're not likely to outgrow the fat pad so this will not likely "fix itself". They will have inconspicuous penes for life.

5. Inconspicuous Penes increases the likelihood of social ridicule. Just another difference that will potentially draw negative attention to them and single (or double, I guess) them out from everybody else: Identical twins... with Down syndrome... and small penes... AND they sit backwards on the potty to urinate. Not a good forecast!

I spoke with the Sarge, listed the pros and cons as I saw them and he felt strongly that we should go forward with the surgery. I guess size does matter (LOL). I discussed it with our Early Intervention Social Worker and she posed the deciding question: If your boys did not have Down syndrome, would you correct this? The answer was ABSOLUTELY YES!

Why hadn't I thought of it that simply? The decision was made... Penoscrotoplasty!

The Surgery: The surgeon was surprised to hear from me after my less than enthusiastic demeanor with regards to the surgery upon my departure last visit. I expressed our interest in going forward and he introduced me to the surgical scheduler. She gave us a surgery date of July 7th. But, I ferreted out that the follow up included no submersion in pool water for 6 weeks. There was no way I was going to rob the fish, I mean the boys, of their summer. They LOVE the water! And since they were approved for the Extended School Year (ESY), they would miss school regardless. So, they rescheduled us for September 4th, right before Labor Day. I passed on that time frame too. I didn't want them to miss the beginning of the school year when classroom routines were set in place. So we finally agreed to Tuesday, October 13th. I was given instructions to schedule a pre-op appointment with our Pediatrician the day before surgery to receive clearance and I'd be provided with specific pre-surgery instructions and the surgery times the day before, October 12th (Columbus Day).

The summer passed quickly and we were full swing into the start of the school year when the surgery date crept up on us. I scheduled a pre-surgery consult so that the Pediatric Urologist/Surgeon could show me exactly what he planned to do. He explained that he would re-open their circumcisions to open up the foreskin, he would "clean-up" Michael's uneven circ and release the skin bridges. Then, he would pull back the foreskin and put two stitches on top on either side of the penis, and one stitch on the bottom in the center, all to hold the skin back at the base of the shaft. I also wanted to ensure that my expectations were in order with what the result was actually going to look like on the other side of this endeavor. Much to Michael's chagrin, he pulled back the foreskin and demonstrated to me that their post-surgical genitals would look like "normal" circumcised penes. Satisfied, I confirmed our appointments and went camping....

I took the kids on a long-planned weekend camping trip (camper not tent) with about 15+ of our closest friends and, wouldn't you know it, Brian came down with a mild post-Hershey Park, PA cold. I pulled both boys from school in an attempt to ensure good health for surgery and imposed a self-quarantine "no one in/no one out" rule in our home. Though I had significant doubts on Friday before the surgery, by Monday morning our trusted Pediatrician cleared the boys for surgery on Tuesday. The rest and relaxation and quarantine worked! We were finally going to get this behind us.

After receiving the "all clear" I took the kids to the petting zoo and Hay Play Yard at Atlantic Nursery and then out to lunch at Wendy's... fully expecting to receive my pre-surgical instructions and surgery times via a message on my home phone or a call to my cell phone. It didn't happen. I began calling around to the surgical center, our Pediatric Urologist/surgeon's office and the Outpatient pre-registration nurse that called on Friday to confirm the boys' names, address and other pertinent information. Each said it was the others' responsibility to inform me and that I should wait for the call. I called again and again and each time was told to wait for the call. I was massively uncomfortable when each of their offices closed at 5 and/or 6 pm and I still hadn't heard anything. I finally reached the pre-reg nurse at 7PM and she apologized saying she didn't have access to the schedule information and, "technically, the nurses have until 8PM to call you with the information!" 8PM came and went. The phone never rang. Had I gone through all of this quarantining only to be put off due to administrative mistakes? At 9PM I called the Pediatric Urologist on-call emergency number and explained that my boys were scheduled for surgery in the morning but that I had no pre-surgical instructions or surgery times. He called me back. Listened. Apologized. Gave me very high-level instructions -- Don't eat 6 hours before surgery. Apple juice and water only up to 3 hours before surgery. Then nothing -- but he did not know and could not access the surgery times. He instructed me to call the surgical center at 6AM when they opened and request the scheduled surgery times. To say I was disappointed or that I expected that doctor to handle it for me, I think, was natural. To say I was furious that I couldn't plan my night-before-surgery and keep things calm and flowing on my end. I wanted to give the boys a bath at the last possible moment knowing it'd be at least 4 days before they could bathe again. But, with all the calling around, it got late and I wasn't sure we were even scheduled for surgery at that point. I was worried that we might not be able to go forward because of their oversight. I thought if we were scheduled for the afternoon, maybe I could bathe them in the morning. No information was available to help me. So, I bathed them late Monday night... Not knowing. Having your children undergo surgery is stressful enough without being subjected to this kind of oversight. I began to worry about the competence factor. If they couldn't remember to call me, would they remember to perform the correct surgery? Fortunately, each of my guys only has one set of genitals so they couldn't amputate the wrong leg or anything like that. God help them if anything got amputated! (LOL... sorry, humor is what helps me through these situations). Between the worry and the frustration, I didn't sleep a wink that night!

At 6:30 AM I reached the surgical center and when I mentioned I'd never received the call, I was told "I think one of the nurses left you message yesterday. Sorry, we must have had the wrong phone number!" No comment. I didn't want my reaction to affect their treatment of my children. "Your boys are scheduled for surgeries at 11:30 and 12:30. [pause, muted discussion in the background] No, no wait. 10:30 and 11:30. [pause, more muted discussion in the background] No, no wait. Oh, just be here at 9:30 and DON'T LET THEM EAT OR DRINK ANYTHING!" Am I the only one having trouble understanding how to apply these instructions given the lack of information? Fortunately, the boys were still asleep so I showered, got the Old Soul off to school, got everything ready for a 9:00 am departure and then waited. They woke, dressed and we were off. No one talked about or asked for food or drink. There was no time and it wasn't allowed anyway. As a matter of circumstance, Sarge and I fasted with the boys. Seemed the right thing to do.

We were taken in quickly. Stashed in a room with a television and asked a myriad of questions regarding the boys' medical histories... 3 people firing questions at the Sarge and I at once. We discovered the admitting nurse threw away our Pediatrician's clearance papers but they were able to fish them out of the trash and get the information they needed. (Hmmm! The question of competence comes to mind again.) Our Pediatric Urologist/Surgeon stuck his head in to say hello as did the surgical RN. Two people I like and trust! And, then we met with the Anaesthesiologist. I explained the difficulties my boys had with anaesthesia in the past to which he responded, "I know Downs kids." Uh oh! He's using diagnosis-first language and he's lumping my children into a group as opposed to listening to their individual reactions to anaesthesia, surgery and pain meds. Not good. I overlook it and continue to provide the pertinent and specific-to-my-boys information that I feel he needs to know in order to do his job well and, most importantly, to keep my boys safe and healthy and alive! We're given 2 sets of mini-hospital gowns, surgical caps and non-skid socks for the boys and a one-piece suit for me. I'm on the surgery brigade and Sarge is on the recovery brigade. We're told to dress Brian first. He looks adorable in his gowns. Sarge snaps a few pics and he's called in for surgery. It is exactly 11:30 am.

It reminded me of the red carpet! Or, death row's dead-man-walking (not a good reference). Patients and employees stopped and watched him, smiling, as he passed. He's waving and saying hello. Wearing his Blueberry Beret (like Prince's song, "Raspberry Beret" but his is scrubs-blue) and everyone was commenting on how cute he is. He spotted the surgeon in a side room and waved to him too. Hit the button to open the big automatic doors into the surgery hallway and stopped dead in his tracks at the doorway of the operating room. "NO MOMMY!" I carried him in against mild resistance -- I think he knew resistance was futile -- and laid him down on the table. He'd fallen silent but his big green eyes were pleading with me and both of his hands gripped mine tightly. "It's OK, Brian." They masked him loosely and through the mask he mouthed "no Mommy" until he faded away. Eyes rolled then closed. I personally find the anaesthesia piece of surgery to be a very difficult emotional experience.... especially because I've had the unfortunate experience of putting a beloved pet to sleep. Very similar except the pet doesn't wake up. My mind replayed those past scenes with my beloved pets and my stomach did a flip. This is my baby! It'll be all right. "OK, Mommy, kiss him one more time" and I did. Then I turned toward the door. Looking back at my sleeping boy I said to the surgeon, "Good Luck" and took my leave... walking back down that hallway alone. Without my brave and confident little man in his blueberry beret.

Back in our holding cell, Michael had retreated to a hiding spot behind the big chair. He was quietly chanting, "NO! Bro! Where Bro?" I bent the television arm so he could watch Dora The Explorer from his chosen safe spot while Sarge and I chatted. The 40 minutes passed slowly... and quickly. The surgeon came in smiling with his stars and stripes do-rag and told us everything had gone smoothly. They'd be moving Brian into recovery and Daddy could join him there. "We'll be coming for Michael shortly!"

I dressed Mikey, against his will, in the gowns and had no luck keeping his blueberry beret in place. This one would NOT go quietly. I carried him through the halls which echoed with "No!" and "Bro?" and into the operating room. He fought me as I put him down on the table and, like his brother, continued to protest -- a bit more vehemently than Brian -- until the anaesthesia took effect. The final kiss. The "Good Luck" wish to the surgeon. And the lonely retreat back to our holding cell.

Not ten minutes later we were bedside to a quietly sleeping Brian. "Let him sleep!" the nurses said. Sarge ran out for a vending machine egg salad sandwich, coffee for him and Diet Coke for me. By the time he'd returned, Brian was awake. In short order, Michael joined us and though he'd been given "a little something extra" in his IV because he'd awakened so quickly after the surgery, our little fighter fought to stay awake and kept up a steady protest as the Sarge and I rotated back and forth between their beds. They drank their apple juice immediately and without repercussions... asking for 2nd and 3rd helpings. The local anaesthetic worked so well on Michael that he was under the impression the IV in his hand was the "boo boo". Unfortunately, Brian was not that lucky. In addition to the discomfort of an IV in the top of his foot, the pain in his genitals quickly became unbearable and he was given additional pain meds that delayed our departure for home. The surgeon visited and explained that the surgery went exactly as planned. No complications. The recovery nurse provided written instructions for their post-surgical care and by 3:oopm we were cleared for take off. Have you ever tried to carry a 47 lb boy without having them straddle your hip? That was one of the restrictions we were thankfully spared by bringing in our big red double stroller. We ducked out a back exit and by 3:10pm the boys were strapped in the minivan, eating Tostitos, drinking apple juice and watching Monster House on the portable DVD player. We were on our way home. Happy to be out of there. The surgery behind us... Recovery ahead!

Stay tuned. Our Recovery Story is still unfolding and it has not been without incident, unfortunately. Wednesday is our post-op follow-up appointment so I'm going to skip a few days and give you a break from all this drama. (LOL) But, I'll be back to let you all know the outcome... the good, the bad and the ugly! And oh yes, there has been some ugly stuff! And some scary stuff! (That's my series cliff-hanger!)