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!)

Sunday, October 18, 2009

Down Syndrome Awareness -- 31 for 21 -- So What Kind of Surgery Did The Boys Have Exactly?

First let me thank you all for all the prayers and words of support. I'm hoping that today is over-the-hump day. Praying that Michael wakes up happy and pain-free and ambulates himself out of bed and downstairs all on his own. I'd like to open up that morning diaper and see an unswollen, healing "pee-pee". That would truly just make my day. It also doesn't hurt that today's rain removes all the pressure to attend the LI Buddy Walk... Rain was the line in the sand I wasn't going to cross so I'm off the hook -- though I really wanted to attend, support, network and show my beautiful kids off -- though with all that swelling, I might have been showing too much of them off (LOL).

I've been beating around the proverbial bush with regards to their surgery and promising a candid discussion for all you Moms who are thinking you might be experiencing the same thing or something similar. So here goes:

Brian and Michael were born 8 weeks premature, almost 5 lbs each. Thank God they didn't stay in there those last 2 months b/c I think their size would have just about broken my back... which was already in spasms carrying these two little linebackers. They were long and wicked skinny with barely an ounce of meat on them but all of their pieces and parts were in tact and functioning on their own. Thankfully! This included their penis-es. Not sure how to pluralize that word... peni? penis'? penises? LOLing... just looked it up in my trusty Webster and though penises is correct, I think I like the penes -- the 2nd e pronounced as "ee" -- best... so that's what I'll use going forward... And, BTW, that's my learned-something-new for today!

The boys were circumcised just prior to their separate departures from the NICU (4 weeks apart due to Michael's NEC infection). As such, their circs were done by different individuals. Brian's by the MD on rounds and Michael's by a midwife on rounds. In the weeks and months that ensued the boys gained weight and I began to think, despite limited experience with little boys' penes (LOL) that maybe Michael's circ was not quite right. Very uneven and a bit of extra skin left around the top. At about a year, with both boys well into the "typical" developmental growth chart, their penes were rapidly disappearing into the foreskin... Michael's leading the retreat. The progression was like blowing up one of those long and skinny balloons. As the boys grew, or the balloon was blown up, the protruding end of their penes was disappearing. I brought my concern to our Pediatrician's attention and he explained that the entire penis was there and in the "normal" size range, but the penis was being overshadowed, so to speak, by the baby fat pad developing in their groin areas. Generally, this condition would resolve itself as the boys grew up and the fat pad dissipated. The official diagnosis was "inconspicuous penis". Now that's the most apropos medical term I've ever heard! That's exactly the term I would have chosen.

Of course, I researched to find out as much as I could about the diagnosis online... but that's just me. I confirmed everything my Pediatrician had told me and garnered additional information about surgical correction which was available if needed and warranted in some cases for various reasons.

A year later, the problem had become much more pronounced -- or less pronounced depending upon how you look it. In the world of Long Island Clam diggers -- my world, BTW... living in a bayman's cottage originally built in 1826 and occupied by clam diggers and baymen -- the boys' penes looked to me like very small "piss clams" (or, for a wider frame of reference, like the snout on what is known as a "steamer" in the culinary world). Or, like the little turtle had pulled his head in but left the neck of his turtle-neck shirt hanging empty out there. Please bear with me, I am not making light of this... ok, I am... but I want to give as accurate a description and visual as possible so that anyone who has a son with this issue will be able to recognize it and choose their own path. In my vast experience (LOL), their penes didn't look right so I asked our trusted Pediatrician for a referral to a Pediatric Urologist.

So, I see the man and provide him the boys' urological history (which is everything I've just told you all). He examined them and told me that the penis is a self-cleaning piece of apparatus and I shouldn't touch it... Wait! He'd never met a teenager with an inconspicuous penis (and in his walk of life, if anybody would have it'd be him!). They'll outgrow it.

I wait yet another year. Uncomfortable with the situation but feeling like I've covered my bases. When the boys were nearly 3 and at the prime age for potty-training I finally accepted the fact that there was not a chance in heck that I could potty train them "normally" with the equipment in hand. There was nothing to aim. Their urine dribbled out of their penes and straight down their legs. With their construction, they wouldn't ever be able stand in front of a potty and urinate and when they sat down it's ran all over their thighs. So I held the pot beneath their withdrawn penes, against their legs to begin the process.... Quickly realizing it was just not going to work. Far more disconcerting than the potty-training issue was that the foreskin, which had now totally enveloped their penes such that they looked like uncircumcised boys, had tightened significantly over the head of their penes. The opening was tiny and I could not pull the foreskin back anymore without it straining and then popping over the head and causing the boys MUCH discomfort.

I made our annual appointment with the old urologist and explained the new problematic developments. After rigidly explaining again about the self-sufficiency of the unit, he immediately pulled the foreskin down over each of the boys penes in turn and, on both, the skin ripped and tore... splitting wide open and bleeding in vertical wounds reaching from top to bottom all the way around their penes. The boys were screaming, wailing, bleeding... A LOT! But, the urologist stayed the course saying they'll be fine and I shouldn't be pulling that skin back anyway. Then he gave me a prescription for a steroid cream, and instructions to apply to their penes for two weeks to loosen the foreskin so that, should the boys get an erection, the heads of their penes would be able to break free from the skin without the skin tearing and bleeding as it did here... Otherwise we'd end up in the ER with a "trapped penis" and emergency surgery. Scary thought! Fortunately, erections were not a significant part of our lives so that scenario didn't play itself out. He also agreed that Michael had a little extra skin and an uneven circumcision and then diagnosed "skin bridges". That is, probably after the circumcision, the cut fore skin remaining on the penis shaft had fused itself back to the head of the penis such that there was no ridge between the shaft and head (sorry if TMI but again, I'm going for candid accuracy). He tells me that's this is a common problem occurring in 1 out of 9 men (I'd never heard of it before and I'm curious if any of the 9 men in my extended family had it) and can be corrected any time with a simple office procedure... He went further to share with me that he'd even corrected his own skin bridges right here in his office (Whoa... too much personal information -- as in "I don't want to know anything about your genitalia, Doc!") I was advised to follow-up in a few weeks to check the effectiveness of the steroid cream.

I filled the script and used it according to the Urologists instructions but I was not comfortable at all with the wait and see approach anymore. Or with the doctor's approach in general. Time was passing. Kindergarten -- and mainstreaming -- is right around the corner and I want the boys to be potty trained for that milestone if possible. I feel confident that's an attainable goal since both boys had urinated in the pot when held against their legs. But, in my humble opinion, their apparatus was not working as God intended, so to speak. So, I went back to my trusted Pediatrician and explained. He referred me to a different Pediatric Urologist within the same group. But this man was also a surgeon in the field.

We met with the new doctor and he began immediately to explain the surgical process used to correct the problem. Because my boys have Down syndrome, he said that the likelihood that they would outgrow their fat pad in the groin area was not great. Possible! But not great. "People with Down syndrome are not tall." Though I didn't appreciate his generalizations (all based on a brother-in-law with Down syndrome), I did understand the best and worst case scenarios of not going forward with the surgery. They'd either grow out of it or they wouldn't. Certainly I could take the wait and see approach. Or, the good doctor explained, he could pull back the extra foreskin and place 2 stitches above and one stitch below at the base of the penis shaft to hold the skin back permanently. All done in a half hour as an outpatient in a surgical center. At that point, I had not quite set my mind on surgery and was not convinced that my boys could not outgrow the fat pad given they were already very tall for kids with DS -- in the 50th percentile for height on the "normal" developmental charts. I thanked him and said I would think about how I wanted to proceed.

The Saga Continues: Tune in tomorrow for Part 2: Penoscrotoplasty: The Decision and The Surgery!

Saturday, October 17, 2009

Personal Reality Check -- Pursuing Happiness Isn't Always Easy

You know, I'm a bit tired lately... emotionally and physically. So, I thought I'd write a post that gave you a peak inside at all the hard stuff that's going on in and around my life so that you would all know that it's not all blogging and roses! It's been tough. And, I am human. I fall down. And sometimes, I reach my breaking point... Though I don't think I've ever actually broken -- not to my knowledge... not yet anyway -- I do believe there are a few more cracks after this week. Yes, I've been moved to the brink tears. And, I am genuinely and completely overwhelmed with no relief in sight (though I know it's somewhere out there in the future).

As they say, IT happens.

So, here's a bulleted list of some of the issues on my plate just for this past week:


  • Sarge got word over the weekend to report to a brand new command this morning. His long-awaited transfer out of Fort Apache - The Bronx was finally approved. But, with all the stuff going on this week, now's not necessarily a good time for more change in any part of our typical routine. Not that we have a choice! Besides this is really good news.
  • The boys were finally well enough to pass their pre-op appointment with the pediatrician. Their congestion is minor enough at this point to go forward. We are cleared for surgery.
  • I never received the pre-op phone call so I had no idea when, where or if the surgery was actually going to happen on Tuesday -- as scheduled for weeks now, nor how to prepare for it. Spent the day hunting down the people who are supposed to be in the know at the surgical center, surgeon's office and pre-registration group only to be told by each that it was the other guys' responsibility and to wait to get the call. Which never came. At 9pm the night before the surgery I call the surgeon's emergency on-call number and finally receive a call-back with vague pre-op instructions (the all important "don't eat or drink for 6 hours before surgery" instructions... But I don't know what time the surgery is so it's hard to implement with any accuracy). The on-call surgeon tells me to call the surgical center in the AM to find out the time. You'd think he'd get someone to do this for us, wouldn't you? Too worried to sleep.


  • After calling and finding out at 6:30am that the boys' surgeries are scheduled for "11:30 and 12:30... no no 10:30 and 11:30... no no just be here at 9:30 and DON'T GIVE THEM ANYTHING TO EAT OR DRINK FOR 6 HOURS BEFORE SURGERY" (Hmmm, fortunately I didn't... but these instructions would have been at least 3 hours too late if I had.) Sarge and I spent the day fasting with the boys... no opportunity to do otherwise and then we didn't think it fair to eat and/or drink when they couldn't... especially in front of them as we completed their pre-operative rigmarole -- repetitive questions and uninformed anaesthesiologist spouting how he knows "Downs kids". We got through the surgery and, with a brief pain-med delay, were allowed to leave at 3:00pm. Home by 3:30pm. (BTW - the surgical center claims they "left a message with the times but must have had the wrong phone number!" No explanation of why nobody gave me the necessary info when I called them 3 times over the course of the preceding day though.)
  • Both Sarge and I noticed odd marks, a rash developing, on Michael's legs immediately after the surgery. I thought maybe it was some sort of scratches because I neglected to clip his nails AGAIN so I didn't mention it. Not sure why Sarge didn't mention it.
  • After numerous unsuccessful attempts at reaching my Co-leader to attend in my stead, I gave up and just skipped the monthly Girl Scout [Brownie] Leader meeting in favor of staying home with my post-surgical boys this evening. Our troop goes unrepresented. Oh well!
  • PM -- The boys' pain is significant. Tylenol with Codeine is in order. They sleep soundly.... drug-induced sleep. I was mostly up watching and ensuring that they were ok. Maybe I should have taken a swig of that stuff too. (Just kidding)


  • Ongoing care of my post-surgical boys, dosing regular pain-meds to address their discomfort. Emergency prep work for the Old Soul's Brownie meeting this afternoon. Too late to cancel. Still can't reach the co-leader.
  • The potential but aint-gonna-happen contractor visited us. His estimate for putting on a front porch came in at an impossibly outrageous and entirely untouchable price. That means we can't refinance to lower our bills while the interest rates are low... Without a reasonable estimate, contractor and work date, if I want to refinance, I have to pay to take the porch off the building plans and refile them with the building department in order to close the permit -- a long, costly and drawn out process and a lose-lose situation. My only other option is to get a more reasonable estimate and see if I can get the work done quickly with another contractor. Time and footwork. All me.
  • I whipped up a neat Rock Candy Crystals science experiment that counts toward earning a Science Wonder Brownie Try-It badge and, as a reward, I got an hour and 15 minutes reprieve... in the company of 10 girls, a helpful parent and my co-leader, who I finally reached. The Old Soul and her Brownie sisters had fun and were happy! I can't wait to get back home to see how the boys are doing.
  • Meanwhile, across town, one of my older sisters took my even older Dad to the MD for follow-up on some neurological tests he's undergone in the past 3 weeks... all meant to eliminate physical reasons for his recent memory loss.


  • My father's rapidly failing memory continues to puzzle us all. In the past year we've seen a significant decline. As previously mentioned, in the past 3 weeks I've taken him to about 6 MD appointments for various tests, and my sister's taken him to a couple as well. And though the neurologist didn't find anything "wrong", we got the news from his general physician (I'm the contact on record because he is my GP also... easier than managing 2 separate doctors) saying that Dad's got early signs of emphysema, hyperthyroidism and prostate cancer. More tests and doctor's visits are in order.
  • Brian's bandages fell off (as expected) but we had to cut Michael's off... no easy task as Dad held him down so I could cut and peel the bandages off while Brian wailed, holding his crotch thinking we're going to castrate his brother or some such thing. Without the bandages, their genitals look like raw chopped meat, bloody and exposed. The boys are far more uncomfortable now even with the loose diaper barrier and padding. Back to round-the-clock pain-meds... which causes constipation again which they'd just begun to overcome.
  • PM -- I noticed Michael's rash has continued to spread and the red spots are more pronounced now. When he began vomiting, I call the Pediatrician. After a couple of failed attempts at accurately describing the "rash" and at giving Michael Benedryl (he kept throwing it up), the Pediatrician recommended the Emergency Room... just to be safe. We did not want to go at that late hour... so I called the emergency on-call number for the Peds Urology surgeon (not our surgeon but one of his colleagues) for a 2nd opinion. I start all over. He didn't think it sounded "life-threatening", vehemently denied it could have anything to do with the anaesthesia, and recommended an over-night Pediatric group 45 minutes away versus the Children's ER at Schneiders Hospital (also 45 minutes away) OR wait until morning and see our Pediatrician which he thinks is still a safe choice. We choose the latter. The Old Soul tells me that she didn't want to bother me in the midst of all the vomiting commotion but her throat is sore AGAIN! As it has been numerous times over the past 2 weeks. Tylenol all around and restless sleep for me and my boys again.... I'm worried.


  • No more vomiting but Michael's rash continued to spread and worsen. I called the surgical center and spoke at length with the anaesthesiologist on duty (not ours) to collect all the information I can regarding the meds Michael was given. I'm still thinking it's an allergic reaction. I called the Pediatrician and ask him to squeeze Michael AND the old soul in (to address his rash and her waxing and waning sore throat). We're on for 3:00pm which means I'm pulling her from school early and fore going the boys' first permitted bath in 4 days. It'll wait.
  • The Old Soul's school calls. Dad -- who's best described at this point as marginally confused about familial relationships, chronology and time -- shows up at my daughter's school to pick her up at 12:30pm instead of the usual pick-up time of 3:oopm. (Note: This is his 3rd year -- and, sadly, probably his last -- of picking her up from school. This year I have had to be there every day as his back up given his memory issues... but the perceived responsibility gives him something to do daily.) The school administrators finally figure out who he is, why he's there and the principal walks him home after the old soul calmly explains his memory problems to everyone... "tell him to come back later". They just want me to know. This after 6 weeks of drilling him on which door and what time he needs to show up to pick her up from school... truly the last of his responsibilities... and he and the old soul both LOVE this time they get to spend together. I'm bummed. I thought he'd just caught on to the right pick-up door but now he has apparently lost the pick-up time. The principal calls me later to check in, expresses his concern, commends my Old Soul on her mature and calm demeanor in this confusing situation and says he'll instruct the school staff to handle further incidences as I recommend. He says he understands.
  • Michael's post-op rash is diagnosed as idiopathic thrombocytopenic purpura -- vein-level red spots all over his body. A big scare for us and for the Pediatrician as this condition is usually indicative of an immune system problem that results in the body's attacking it's own platelets and is often related to leukemia in children with Down syndrome (who have a higher risk than normal). Blood work reveals his platelets are fine -- at healthy levels -- so at this point we believe, hope and pray it was caused by a viral infection. But, we're on a high-alert rash-watch to ensure that nothing more develops. If the spots worsen and/or continue to spread, we've been instructed to call the Pedi immediately. Scary stuff. My worst fears are dangling in front of my very eyes. Olivia is recorded as running a slight fever at the Pedi but her strep test came back negative. Once home, the fever increased rapidly. She's sick but at least it's not strep! Just get in line for some Tylenol.
  • PM -- The boys' post-op genitals still look raw and they are still uncomfortable so I continue with the Tylenol which is still causing constipation discomfort. That's the lesser of the evils. They are moaning and groaning and rolling all over the bed all night long because of gas, constipation and pain/discomfort. Brian rolls over and kicks Michael in the groin; Michael screeches "Ow"; Olivia wakes up crying because her broeys woke her. She's hot again. More Tylenol all around. It's 2:30am and she can't fall back to sleep which she proves to me by continuously waking me up from my half-awake/half asleep drifting state to tell me she's still wide awake. "Close your eyes, Olivia!" Truly, I am exhausted. I have that tired, floating brain feeling.


  • Initially, things seemed to have settled down after another sleepless night for all. Upon morning diaper changes, I discover that Michael's wound has run afoul. Swollen and purplish-red it looks like he's about to pop the now visible, previously inconspicuous, stitches. I've called the Pediatrician and waited for a call back with instructions on how to proceed. Mikey's sits immobile on the couch, his eyes are red-rimmed. And, though Brian is actively running about, seemingly unscathed and visibly healing, Michael is quiet and reserved after being carried downstairs. He hasn't moved. My poor little guy is beaten up... again. The Pedi thinks that Michael's had a minor internal bleed in his wound... hence the dark red/purple color and swelling. Maybe he bumped it. (Maybe it was Brian's heel to the groin in the middle of the night?) "Ice it and watch it. If he pops the stitches, he'll have to see the surgeon immediately." But, it's the weekend so I know they'd just send me to Schneiders Children's Hospital ER. I don't want to go there but Michael also won't have ANYTHING to do with an ice pack on his sore and swollen genitals. After a little while, it looks as though the swelling went down a bit so I give them their 5 minute baths... separately or I'll never get them out after 5 minutes. The Pedi says to "keep up the prescribed after-care!. But his genitals nor his demeanor look any better after the bath. He's shaking and back to lounging on the couch... tears running slowly down his cheeks. More Tylenol. Guess I'll ask Sarge what he thinks the next move is when he gets home... in about an hour. Oh no! Wait, he's working the Yankee play-0ff game again tonight. He won't be home. I'll have to figure it out by myself... again.

So what's in our not-too-distant future? Quick resolution of Michael's wound condition, hopefully. And, though I was promised by the surgeon that the boys would be able to return to school this Monday after clearing their post-op check-up. I'm told the soonest available post-op check-up appointment is October 26th... 2 weeks away. I MADE them schedule us sooner... on the 21st. (Hopefully, they'll pass!) Still this will have them out of school more than 2 weeks total... twice as long as it should have been... and that's only if they're cleared. I also need to follow up with their school's gym teacher, Physical Therapist, Occupational Therapist and Teachers to discuss what activities they're allowed to participate in and which they are restricted from and how to manage that process/restriction without devastating the boys. I have 3 follow up appointments scheduled for Dad to ascertain the severity of his illnesses. I have the boys' Back-to-School night... which I think we're going to miss, unfortunately. Not to mention the Parent Association Book Fair for which I have volunteered time the day before and that same night at their school. Did I mention I'm the Co-Vice-President of that organization? Sorry, but we're just out of commission for now. The Long Island Buddy Walk for Down Syndrome is Sunday... not sure our team is going to make it. And, finally, the old soul's birthday party needs to be planned and undertaken. Her birthday is next Saturday! That might need to be postponed too!

I've had the boys out of school battling colds the entire week preceding surgery to get them healthy enough to undergo the surgery... Plus they were out all last week... And, I'll have them out almost another week yet. I've barely cleaned or food shopped in 2 weeks! No opportunity to go... Can't take them out. Can't leave them home. All I've done is attend to pseudo-sick kids and my pseudo-sick self... This nagging cough and fleeting sore throat is getting the better of me and my Robitussin, I fear. Even my Mom, who is often my ace-in-the-hole, has come down sick with a bad cold this week! It seems the powers that be have conspired against us in some ways... though not in all. I guess I'm on my own!

Where the silver lining in all of this? Sarge got his transfer. The boys surgery is behind us, healing and potty-training still ahead. The Old Soul doesn't have strep. And, I'm still standing! With a smile (if not a tear in my eye).

Actively pursuing happiness and focusing on the good stuff is the only way I get through times like these. You can see why -- after a week like this -- it's a conscious choice that I make every second of every day... especially lately. Like Dorie in Finding Nemo I repeat over and over again to myself -- and sometimes out loud, "Just keep swimming. Just keep swimming. Just keep swimming, swimming, swimming!" Chin up (above the water line). Fins to the left... flapping and flailing at times. Sucking a bit of water here and there... But we are all still afloat! Mostly happily! And weeks like this too shall pass!

Friday, October 16, 2009

THANKFUL THURSDAY On Friday & Down Syndrome Awareness - 31 for 21

Oops, lost track of the days. They all seem to be running together.

Anyway, since I'm blogging this month in honor of Down Syndrome Awareness Month, and since I'm 3 days out of surgery on my boys, I have much to be Thankful for this Thursday. And so, my list will revolve around my beautiful boys [mostly]:

[1] I'm thankful that my boys came through surgery [on their genitals... yes, both of them... they're identical!] without any major problems. That is, they went under, had the surgery, and woke up without event! THAT'S a big deal to a mom!

[2] I'm grateful that we were able to intervene on their behalf and correct their "inconspicuous penis" condition so that they may go through life conspicuously... like their peers (LOL). If you want more information with regards to the condition and/or correction, please feel free to email me. Or, follow the blog because I'm likely to talk candidly about this condition and why we chose the course of action we did in the near future.... once we're over the proverbial hump (ha ha ha)... to help other facing the same.

[3] I'm massively relieved and thankful that the idiopathic thrombocytopenic purpura (red spots) all over Michael's body were not accompanied by low platelet counts... which means it was probably caused by a viral infection and is not indicative of a leukemia-like illness. Children with Down syndrome are at a higher risk of developing childhood leukemia so this was a scare for us AND our pediatrician. But, Michael's platelet counts are more than healthy so we're watching and hoping and praying the purpura (red spots) dissipate quickly without further ado!

[4] I'm thankful that the boys genitals seem to be healing well and quickly, their pain/discomfort is subsiding and their good humor is holding up! Again, considering the surgery... no small feat!

[5] I am thankful that I am the mother of these two beautiful little men and their beautiful on the inside and outside big sister... More about the old soul in my next Angels Amongst Us post. I am so incredibly proud of my children in more ways than I can express!!!! They are my angels here on earth.

BTW - In case anyone's wondering, I'm also incredibly grateful that, amidst all this stress, I've still managed to lose a total of 5+ lbs. on the Weight Watchers program. Stress has always done the opposite for me. But, writing it all down seems to be working. Not having time to shovel anything into my mouth is probably not hurting either.

Thursday, October 15, 2009

Special Exposure Wednesday (& Down Syndrome Awareness) - Take a Ride On The Wild Side

That's Michael and Brian Taking a Ride on the Wild Side!

Yes, they rode these quads though not by themselves! At 4, they had appropriate adult supervision!

So far, there is nothing about a diagnosis of Down syndrome that has precluded my children from participating in any activity we've ever encountered! Not one!

Check out more Special Exposure Wednesdays!

Down Syndrome Awareness -- 31 for 21 -- Is Living With Down Syndrome More Difficult?

Some people have asked me if having a child with Down syndrome is difficult. To answer that, first, let me qualify... we're talking about MY children with Down syndrome... who happen to have no critical health-related issues and are just awesome little barely-delayed guys. And, difficult compared to what? To answer that question, we'd have to consider which child without Down syndrome are we talking about. I've seen a number of children without Down syndrome that I wouldn't consider taking home for even an hour... even if you paid me. I've also got two children with Down syndrome... and they are twins. (A term I never use unless speaking about the fact that they are... twins!) This is, as they say in NY, "a whole nother ballgame!" If you ask me if having twins is difficult I'd answer, "yes, it can be tough at times". Since I have a "singleton" (another term I hate and am using here only to distinguish her from "the twins"), I've experienced the difference between raising a single child and raising twins. Two children at the same developmental level is very different from -- and, I think, more challenging than -- having a single child or even two children as little as 9 months apart! I can tell you that most mothers who have children close in age tell me it's the same as having twins.... And I can tell you that every mother I know with twins -- including me -- will tell you it's not!

Still I can really only speak to what I've got! Right?

So, does the fact that my twin boys have an extra 21st chromosome make my life more difficult? The answer is, "I don't know!" Or, "I can't really answer that question!" Or, "more difficult than what?" Or, more accurately, "I don't go there". You see, what I have is twins with Down syndrome. And, I can't distinguish between their twin hood and their Down syndrome. I also can't distinguish between Down syndrome and no Down syndrome... because my guys have Down syndrome. And, I also can't distinguish between my twins with Down syndrome and any other kid on the face of the earth with or without Down syndrome. Because that's not what I have. I have my twins who happen to have Down syndrome. This is all I know so I can't say whether it's more or less difficult than having any other children with or without a diagnosis. Does that make sense?

Do I think that I do more for my boys because they have Down syndrome? Well, I do more to help them in the areas where they need help. Yes. I also do more for my old soul because that's me. And, I work hard to make sure she doesn't feel slighted. Truth is, I would and do more for any of my children that need more in any particular area. Down syndrome or not. I work with the old soul in math because she perceives that she is not good in math. (She does well in the subject but has a hard time grasping concepts, she says. And, her perception is our reality so...) And, I drive 60 miles per day so the boys can attend an integrated class in a special school because I thought this particular environment would be the best for them. Better than the mainstreamed environment in our local preschool... And better than the environment in the school where 90% of the students have Down syndrome. MY choice and it cost me nothing but my time to make it! The old soul goes to the community public school around the corner. I believe in the public school system. I considered putting her in a progressive and/or Montessori school program given her Old Soul and extraordinary creativity. If I ever felt that the education environment for any of my children was no longer optimal, we'd choose something different! Time, convenience and cost be damned!

I do whatever I feel I need to do -- whatever I perceive is best -- for my kids. It really has nothing to do with whether they have Down syndrome or not. It has to do with what they need. Does the diagnosis come into play... I guess it does... a bit. But you could swap out Down syndrome for any other diagnosis or none at all and I'd be doing the same thing... whatever I need to do for my individual kids! I don't know how to do any different!

I have never looked over the fence to compare. What's the point of that? Every family is unique and each has it's own challenges and blessings. And, I can tell you, in my life, I have never seen greener grass than what's growing in my yard!

Tuesday, October 13, 2009

Down Syndrome Awareness -- 31 for 21 -- People First Language PLEASE!

Ok, my boys are calling for me. They underwent surgery this afternoon and are experiencing some pain and discomfort so this will be VERY quick. Here's the reason for this post:

In discussing how best to administer anaesthesia for my boys during surgery, the anaesthesiologist said, "... I know about Downs kids..."

Really? You have a child with Down syndrome? And, he/she is EXACTLY like mine so you know all about my kids and how they react to meds, anaesthesia, surgery etc.? I held my tongue, smiled and continued... "... previously, my children did not metabolize the anaesthesia well so blah blah blah..." I think he understood that I didn't want them automatically lumped together with a group of people who may or may not react the same way my children do in a surgical situation. Crazy huh? I held back and did not correct his reference to "Downs kids". I thought it better not to insult the guy before he masked my kids.

My boys are children first. If you're speaking about their genetic condition then they're children with Down syndrome. If you're just talking about them they're Brian and Michael. No other labels are really necessary. And, certainly, putting the term Down syndrome first is like making it the most important part of the definition... of what kind of children they are. "They are Downs kids!" Down syndrome does not define them and referring to them this way is inappropriate. I'm sorry if you think I'm being oversensitive and/or you disagree with this sentiment. If that's so, you probably don't have a child with special needs or a child with Down syndrome. But you should be aware that it hurts when you refer to my children this way. That you see their diagnosis first and the wondrous people they are second. That you define them by their diagnosis. If you know me and care, please try and change the way you refer to people with Down syndrome for me. If you don't know me but you ever have the opportunity to speak in a professional capacity to parents who may have children with Down syndrome -- like the good anaesthesiologist did yesterday -- use people-first language so that you do not insult any other patients, clients, parents or individuals with Down syndrome.

Words can hurt!

When you speak about children with special needs -- whether to the parents or to anyone else -- you should refer to them by their names First. If you don't know their names, speak of them as children FIRST and then -- and only if absolutely necessary and pertinent to the conversation -- add the diagnosis or disability language afterwards.

Monday, October 12, 2009

Down Syndrome Awareness -- 31 for 21 -- What's So Special About Me?

As the mother of identical twins who ALSO happened to have been blessed with an extra 21st chromosome (aka Down syndrome) AND who ride around in a big, bright red, side-by-side double stroller... we attract a lot of attention. Add to that the propensity for my boys to warmly greet absolutely EVERY ONE who walks past us, shaking hands, waving hello and blowing kisses and you can see why they're magnets for attention! My guys and the Old Soul -- in my biased opinion -- are extraordinary!

Still, some folks walk past and give us "the look"! Every mother of a child with special needs knows about "the look". That stolen glance that culminates with "politely" looking away and avoiding eye contact lest I recognize the glint of pity in their eye for me and my children. They seem to have "I'm so sorry for you" written all over their foreheads. I think I speak for all of us Moms of kids with special needs when I say, we hate "the look". And, although we each handle it differently -- some in an informative way, some with disdain for the looker, some self-consciously, some with sarcasm, some with humor, and so on -- it puts every one in an awkward and uncomfortable position. But, this post isn't about "the look". It's about the OTHER reaction. The mesmerized-by-your-beautiful-angels reaction that inevitably results in a comment that goes something like this....

"You must be a very special person. God doesn't give children like these to just anyone!"

4 1/2 years into this and I still never know quite how to handle that comment.

You know what? Thanks! I guess, I do believe I'm kind of special! But I don't think that's why God gave me these beautiful children. And yes, I do believe THESE particular children were meant to be mine... just as they are. In truth, I think it's these particular children that make me so special (not vice versa). I know my little guys and my Old Soul are very special. These children have brought me more than my 15 minutes of fame... They've immersed me in fame that's lasted 4 1/2 years so far... with no sign of stopping. It seems as though this fame -- their fame -- is going to last a life time. Their life time! And, I am happily along for this glorious ride!

Am I basking in the shadow of their limelight? Absolutely! Do I prefer it that way? Absolutely! I do believe I am special... because I am Brian's and Michael's AND Olivia's mother! That's how I feel... That's how I think it is.... For me, anyway!

I'm thinking some of you (Hi Mom!) might say that I should recognize how special I am in my own rite. To you [and Mom] I say, yes, I know. Aren't we all special in our own way? But, the thing that really differentiates me, I think, are these children of mine. They are extraordinary! (All 3 of them!) If I leave any significant mark on this world, it will be because of them. I am -- and I suspect I will be remembered as -- their mother. Because I know they will leave their mark on this world in such a profound way it defies explanation. They already have for me and for so many others!

So, that's what's so special about me!

Sunday, October 11, 2009

Down Syndrome Awareness -- 31 for 21 -- Career Choices for People With Down Syndrome: A Dose of Reality

After reading yesterday's Down Syndrome Awareness post, is there anybody out there thinking I'm aiming too high for my boys with regards to their career choices... maybe you're thinking some of those careers aren't possible because my boys have been blessed with an extra 21st chromosome? Right about now, I'm like the most famous pritate of all in one of the boys' favorite movies "Hook"... I'm playing out, in real life, the scene where Captain Hook asks his pirates who bet against him with regards to his ability to best Peter Pan. Hook says, "There is a stranger amongst us. Someone who does not believe. I will weed you out!" Believing is such a big part of mothering, of parenting. I've seen the damage parental disbelief can do (and a child does not have to have a disability to succumb). Learned helplessness is not pretty. Dependence and/or apathy is frustrating for everyone. And, it gets us all absolutely no where!

But, you ask, can my boys really be professional athletes or astronauts if they want to be? Like EVERY ONE else, if they have and/or can develop the talent, skills and knowledge for those professions... the answer is, YES THEY CAN! There are no specific requirements -- intellectual or physical -- that AUTOMATICALLY disqualify my children with Down syndrome from those careers. There are also no specific regulations that prohibit my children with Down syndrome from participating in those careers.

I find the most damaging limitations imposed on people with Down syndrome exist predominantly in the minds of those guiding and/or teaching them... In the minds of those hiring for whatever job position my brave little boys will choose for themselves. That's my perception and the Reality!

In fact, I'm not aiming for any particular career at all for my boys. They will aim themselves through their natural talents and interests. I'm merely clearing the path... Planting seeds, nurturing their talents and weeding out the non-believers that get in their way.

Dr. Kathleen Feeley, a professor at CW Post college; co-founder of the Down Syndrome Advocacy Foundation (DSAF); and a local and renowned advocate for people with Down syndrome, lectures on this very topic. She says to begin now while your children with Down syndrome are young. Seek out through play and activities what their strengths and interests are. Aid them in developing their strengths and interests and then purposefully expose them to the "powers that be" in those areas within your community. I say, visit frequently with your child those places where their areas of interest and talent are practiced. Volunteer with your child for those powers that be. Familiarize the people in charge of the jobs in your child's areas of strength with your beautiful children. Expose them to each other so that your child is a known and comfortable entity to them and vice versa. Then, when the time for employment comes, your child will be thought of as an able candidate for the job -- in the mind of the person doing the hiring -- instead of being automatically pre-judged and disqualified as a dis-abled person.

Our job as parents is to run interference. To clear the path in the minds of those people in power so they come to believe a different reality about our children with Down syndrome. The reality that my children -- our children -- with Down syndrome are capable of amazing things... Not the least of which is doing the job at hand. The job they have skillls and talent for. The job they have been aiming for all their lives....

Isn't this pretty much what we want and should do for all of our children?

No, there is no job that is above or beneath doing. Not for me, my daughter or my boys. This is all about choices. Their choices. I am not saying that being a ball boy, gardener's helper, cashier, office "go-fer", house cleaner, fast food employee, church janitor or any other job choice isn't good enough for my sons, my daughter, myself or for anyone else. No more than CEO, Astronaut or President of the USA is too good for them or any of the rest of us! A former employer of mine used to say, "It's all about Choices!" Career choices are best made when you understand and pursue what you like to do, what you want to do and what you are good at doing. My boys are welcome to choose to sweep floors if that is what they want and love to do. They are also welcome to build the floors if that is where their skills and desires lie. Or, work for the companies that own or rent those floors in whatever capacity they choose. They can even run those companies if that is their passion and their choice!!! I have heard of, seen and/or know people with Down syndrome performing well in each of these career categories/levels. Jason Kingsley, co-author with Mitchell Levitz of "Count Us In", is a highly successful business executive by all measures. And, Joe Steffy, a young man in Kansas City who has DS and Autism, started, built and manages his own very-successful (read: profitable) food production, sales and distribution company. How did they achieve their lofty goals? They had parents who believed in them, who helped clear the path for them. And they had interests and talents that aligned with the careers they chose.

What do you believe your child with Down Syndrome can do?

Believe. Plant the seed. Clear the path. Pave the way... to their success.

Saturday, October 10, 2009

Down Syndrome Awareness 31 for 21 -- Mamas Don't Let Your Babies Grow Up To Be Cowboys

Sure I worry about what my boys will be when they grow up. I wonder what career choices will be available to them. But, if I look at all they can do already, and all their innate talents and interests, I believe they can do whatever they choose:

They can be mountain climbers or bridge painters... since they don't mind heights!

Heck, they can be ditch diggers if they want to be

Or astronauts

Or maybe Helicopter Pilots

They can be Firemen or policemen, like Daddy

Or gymnasts maybe!

Artists? It does run in their blood.

Or Musicians? That runs in their blood too!

Professional athletes. Hockey or baseball players perhaps... with a little training. They each have a wicked arm!

Or maybe a boat captain like their Daddy used to be.

Carpentry, a fix-it man, a Do-It-Yourselfer. There's inate talent and interest in these areas in both boys and on both sides of the family.

Explorers. Park Rangers. Animal wildlife conservationists. Also in their blood... And mine!

Oops, I hear I shouldn't let them grow up to be cowboys! Too lonely or so they say (unless they hook up with Barbie!)

Performers... Dancers! Singers! Absolutely one of their strengths! (Talk about hooking up with Barbie... Helloooo Jessica!)

Photography is a budding interest too! And, they're pretty good at it!

I could go on... They can be writers, film makers, actors, executives/office workers, teachers and more!

Why do we worry about the career opportunities of our children with Down syndrome any more than we do our children without? Why can't they turn their talents and interests into a career just like everyone else? The Sarg and I agreed that we would be more than pleased if the Old Soul chose any life path that made her happy. If she wants to pull weeds in people's gardens for a living... that's all right with us. (We know someone who does pretty well doing just this LOL!)
So, why should it be any different for the boys? Because they have Down syndrome, you say? Well, guess what? There are no specific restrictions on ANY of the careers I mentioned above with regards to people with Down syndrome pursuing them. There are so many career choices in life... There are bound to be numerous choices in areas that specifically interest my children with Down syndrome. Careers that can be rewarding for them... That they'd be happy doing.
Like every child, with a little direction, a lot of love and some good old fashioned hard work, there are so many choices. And, I believe in my boys and will help them to do -- to become -- anything they want to do or become!

Barbie loves... Who?

When I was little, I played with a bunch of hand-me-down Barbie dolls. I had 3 older sisters and they had numerous girl friends. So when the hand-me-downs came my way, I gladly accepted. I had a couple of Barbies, a Skipper and a Ken doll as well as the town house and sports coupe. And -- like mother, like daughter -- so it goes with my Old Soul. Actually, with all the hand-me-downs she's received, she has 16 Barbie dolls at last count not including the long-blonde-haired Ken and multiple little sisters -- Kelly dolls -- that didn't exist in 1970 when I was her age.

I played countless hours with Barbie and Skipper... but never got into Ken. I pretty much sidelined him. I don't know why... I just didn't see him as an option for Barbie. But GI Joe? Now that was a real man! He was rugged and tough and outdoorsy. Yeah, me and my Barbies all went for my brother's GI Joe. Matter of fact, Sarg kind of reminds me of GI Joe in a uniformed, shaved head, 5 o'clock shadow sort of way! LOL

So, the other day when I returned from our school drop-off routine, I noticed my old soul left some of her Barbie dolls out. The hot pink sports coupe was front and center on the kitchen table. And on closer examination, I saw that the old soul had Barbie out gallivanting but NOT with Ken! One of her brother's Woody Cowboys (from Toy Story) was riding shotgun to Barbie. Sherrif Woody looked more than comfortable with Barbie in the driver's seat. (Real men let women drive!) And, it looked to me like she was dressed for a fun and funky day with Woody. Yeah, my old soul is a chip off the old block, all right. My Barbies would have totally gone for the tall and lean Marlboro Man cowboy over today's surfer dude Ken!

Must be genetic!

P.S. The Old Soul had designated Ken as Barbie's Dad... Like I said, Sidelined!

Friday, October 9, 2009

Down Syndrome Awareness 31 for 21 -- No Limits!

We recently spoke with a class of Speech-Language students at Molloy College in Rockville Center, NY. My children and I do this at a handful of local colleges, meeting with students in various fields all planning careers working with children with special needs. We do this so these students can put a real face on the textbook diagnosis of Down syndrome. We do this to dispel the myths. We do this on behalf of all people with Down syndrome. All those who don't have the opportunity to represent themselves to these students and to everyone else who works with people with Down syndrome. We do this so every person with Down syndrome can be represented as an individual instead of as a stereotype.

Our primary message to the students is to SEE and treat the individual not the diagnosis.

According to the stereotypical diagnosis of Down syndrome, my children would be mentally retarded. They are not! I have this statement in writing from the New York State Office of Mental Retardation and Developmental Disabilities based on their latest evaluations.

According to the stereotypical diagnosis of Down syndrome, my children would have low muscle tone. They do not. They are in the low range of normal muscle tone... like their mother (LOL).

According to the stereotypical diagnosis of Down syndrome, my children would have heart defects. They do not. Their hearts are perfect! Just like yours and mine despite their extra 21st chromosome.

According to the stereotypical diagnosis of Down syndrome, my children would have vision problems. They do not. They wear no glasses, have no astigmatisms and can see better than me. I've been wearing glasses since I was a college student intending a career working with children with special needs. (Mike wearing pretend glasses)

I could go on but [I hope] you get the picture. They are not a textbook case of Down syndrome. No one is! And, I am not saying that Brian and Michael are completely unaffected by their diagnosis of Down syndrome. They are affected... mildly. But, four and a half years into their beautiful lives, we have found absolutely no limitations for Brian and Michael. Delays? Sure, some! Nothing insurmountable. But ABSOLUTELY NO LIMITS!

Thursday, October 8, 2009

UPDATE: Down Syndrome Awareness -- Editorial by a Mom of Identical Twins with Down Syndrome

The latest statistic I've heard is that Down syndrome occurs once in every 733 births... though identical twins with DS is a bit less common. Still, that's down from the 1 in 800 stat that I've seen quoted most often, that hadn't changed for years until recently. I think that number is dropping lately though because the early diagnosis of Down syndrome via in-utero testing results in the termination of more pregnancies... More fetuses with Down syndrome are being aborted. I've heard that 92% of all fetuses prenatally diagnosed with Down syndrome are terminated.

I don't necessarily think this is a good thing. I cannot imagine terminating Brian and Michael because of their Down syndrome... which has had such a mild affect on them, in fact!

I'm not sure what the goal of this in-utero testing is exactly! In theory, I understand it's an attempt to inform expecting mothers so that they can make a choice... To prepare for or terminate what the world considers a less-than-perfect child.

God help us if we're not all perfect! Right? In truth, I have yet to meet a perfect human being!

I get the concept of preparing for a child with special needs though I chose to fore go the pretesting. Pregnancy can be emotional and challenging enough without adding any additional stress! Besides, personally, I think you need to prepare the same for any and every baby... hoping and praying for good health but accepting of whatever child you are gifted -- girl or boy, big or little, early or late, singleton or multiples, healthy or unwell, 46 chromosomes or 47 (Down syndrome). Then, you deal with the curve balls. There's no way to know in advance of their life outside the womb what any baby -- any child -- will specifically require. So, you love and nurture and provide whatever medical and educational attention is necessary for your child at birth and throughout their lives. Isn't that the truth for each and every one of us and for every one of our children... disabled or not? Unless you choose to put your "less-than-perfect" child up for adoption -- a valid choice for some (and please know there are countless parents waiting with baited breath to specifically adopt children with Down syndrome) -- there's no way to know how any of this will actually turn out with or without a prenatal test that is positive for Down syndrome!

But, let's look at the flip side of the choice that prenatal testing gives the expectant mother. Terminating a fetus because it's diagnosed with Down syndrome, to me, is sort of like playing God, or Hitler, or Russian roulette. Sorry, this one's not good enough for us. We'll go ahead and take our chances... pull the trigger again. To be honest, in the realm of potential disabilities, Down syndrome is a breeze and occurs less often than others that can be more challenging and, dare I say, less rewarding. Still, if this notion of trashing this one for the next is ok with you (it's not with me), the world will still never be rid of Down syndrome... though PERHAPS it won't occur in your family. Or, will it? Maybe the next fetus will be diagnosed with the same... who knows?

Unless every fetus conceived is tested in utero -- not likely to happen -- AND, every in-utero diagnosis of Down syndrome results in termination -- also not likely to happen -- thankfully, Down syndrome will always be a part of this world! Because Down syndrome occurs naturally in our world! And, because people like me who not only choose not to test because I wouldn't make a decision to terminate based on results indicating a diagnosis of Down syndrome... But also because I wouldn't terminate if I did receive this diagnosis for a pregnancy -- a baby -- I purposely pursued and wanted!

My daughter's Kindergarten teacher used to say, "You get what you get and you don't get upset!" Good advice. Though my daughter loves the color green, there's no guarantee when the chatchkies are being handed out that she's going to get the green one. She has to take and be happy with the chatchke she gets. Same goes for babies.

Yes, Trisomy 21/Down syndrome occurs naturally throughout the world in approximately 1 in 800 births (medical termination is not natural). The 21st chromosome accidentally triplicates itself, instead of only duplicating itself, and then the replication of this triplicated chromosome repeats over and over again in each cell as the fetus develops. Occasionally, the "mistake" naturally reverses itself in the process of fetal development and the 3rd 21st chromosome is accidentally not copied such that all cells going forward from that point have only 2 21st chromosomes which results in Mosaic Down syndrome. Still, thus far, medical science has not been able to identify when the triplication is going to occur, keep it from happening, nor correct it once it has happened. Is it possible that some day medical technology will find a way to do these things? Sure, any thing's possible... But, personally, I hope it doesn't come to that. I think the world is a better place because there are people with Down syndrome in it! I KNOW my life -- and this world -- is definitely better for the presence of Brian and Michael... just the way they are!