Half of a Hair Cut

They FINALLY let me cut their hair for summer!
Here's what they would look like if they chose different styles...
Not looking so identical now! LOL

Not to worry, I did finish the job!


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You Think I Have Down Syndrome All The Time!

My boys don't have Down syndrome when they're eating at Wendy's, their favorite restaurant!

The story linked below was forwarded to me through a yahoo group I belong to of families with multiples where one or more has Down syndrome... like me/mine. I'm linking it here because it was just too good not to share. I'd have reprinted it but Dave Hingsburger, blogger and advocate for those with disabilities, has a creative commons copyright on his blog... so I'm sending you directly over to him to read this extraordinary story... A story EVERY parent of a child with Down syndrome, every body whose life is touched by a child with Down syndrome and everybody who impacts the life of a child with Down syndrome should hear!

Click and read... please.

Motherhood Post-Crisis Fatigue Reflex

I know I'm not the only one who's ever felt this way. I can't be. But boy do I feel exhausted... and frustrated with all the child-rearing stuff that's still on my plate after all I've been through. I know everyone in my family has been through it with me... but right now, this feeling of depletion is all about ME! I feel like a terrible mother! I think it's a post-crisis fatigue reflex to compliment my family's gag reflex LOL!

Yes, I've somehow kept myself standing through the past 6 or 7 weeks of my children's' illnesses and hospitalizations. Beginning with a lactose-overload stripping of their intestines. Followed by weeks of diarrhea, vomiting, high fevers, hospitalization, pneumonia, repetitive chest x-rays and experimental treatments, a partially collapsed lung, pulse oximeters, oxygen tanks and more... so much more for my poor little babies. Yes, I've dealt with a bunch of difficult stuff (though recognizably minor compared to what others deal with every day!). I've stayed up [mostly] through entire nights just to listen and watch him, or him, or her breathe. I've slept sitting up in a chair or crunched at the foot of a hospital bed... Only to be awakened multiple times by the beeping of one machine or another indicating some number is not where it should be... some aspect of my child's well-being is in question. I've been knocked down with my own illness in the middle of all this, only to crawl back up onto my knees to keep on praying.

And through it all, we've somehow managed to maintain the potty-training regimen for BOTH boys despite hospital stays with IV hoses, IV fluids, and oxygen hook-ups. Despite our inability to double-team our 2-man team of formerly diaper-clad, sometimes incredibly-stubborn-about-toileting little boys. And, we managed -- with much help -- to get the Old Soul to her socially-important final days of school and end-of-year parties despite the fact that The Sarge and I were sitting bedside vigil in different hospital wards each with our sick little charge. We even managed, very well I might add, to work together to get it all done without disagreement and to still love and respect each other on the other side of our shared crisis.

So why am I so darn bone-tired when things just got soooo much easier? Why am I suddenly feeling inexplicably angry over nothing in particular? Why do I feel like such a bad person for feeling this way NOW after all we've come through? Why do I want to scream at the top of my lungs, "NOOOOOOO! I don't WANT to drive my beautiful little men 60 miles a day to and from a school that I wish they didn't have to go to for Summer!"? Why am I blaming anyone but myself for gaining back a very few lost pounds during these trials and tribulations (sitting on my butt in a hospital room, eating nothing but hospital food)? And with a small but definite lull in our daily activity, why am I not able to carve out a moment of time or energy to refocus just a little tiny bit on myself to eat right and exercise? Now that things have settled down, why do I feel the need to run away [briefly, mind you]... To jump in the car all by myself and drive somewhere of MY choice [not too far away in case my kids need me] to spend a peaceful and quiet moment enjoying the way the sun sparkles on the water's calm surface?

Ah... there's much wisdom buried in that last heartfelt desire!

Yes, I'm more than a few years into this journey but I've just figured out that, at times, there are going to be days, weeks and even months like this. Thankfully, most days my cup runneth over -- truly! -- with the joy and laughter of my beautiful children. But when these hard days, weeks and months hit -- and they will -- I've learned that I have to take the time to refill my own cup afterwards! Like storing nuts for a hard winter, I have to replenish the used-up supply!

I don't know for a fact that I wouldn't have had these same kinds of days if a couple of my children didn't have special needs! Or if a couple of my children weren't twins! Or if maybe I had just a couple less kids! But I promise you, I wouldn't trade my beautiful kids for the world! Besides, listening to my mother's crazy child-rearing stories, I realize it's not about the number or type of kids you have. And it's not about the breadth or depth of the crisis! It seems to me, no matter what kind of kids you have -- kids with special needs, 5 kids, only-children, teenagers, boys, girls -- sometimes this motherhood thing is tough! And when the Post-Crisis Fatigue reflex sets in, only a moment of respite will fill your cup and prepare you for the next wave of life, whatever it may bring.

Footprints

Growing up, I read the story, "Footprints", about a faithful man coming to the end of his life and finally having the opportunity to meet Jesus at the gates of heaven. Throughout his life he'd been promised that Jesus would always walk with him if he believed. As he reviewed his life, he saw there were two sets of footprints in the sand -- one set his own and one set belonging to Jesus who walked beside him as promised. But, he noted, during the most stressful times in his life there was only one set of footprints in the sand. He asked Jesus, "Why would you abandon me during the most trying times of my life?" And Jesus answered, "It was during those times, that I carried you!"

I see the footprints in the sand... and I know that I am NEVER alone! I am surrounded by the footprints of those God sent to help me, love me, save me... Including the unique footprints of my beautiful children who happen to have been born with an extra 21st chromosome. And I know that through my most stressful times, it is THIS gift especially -- my amazing children and their undying, unconditional and all-encompassing love... for me, for life, for all -- that will carry me through my most stressful times. I believe and I thank God for them every single day!

Check out more Special Exposure Wednesdays at 5 Minutes For Special Needs.

Long Drives & Family Gag Reflexes (Not for the Weak-Stomach)

WARNING: This post is not for readers with a weak-stomach. It's for those of us who laugh our butts off (not literally unfortunately or I'd have the tiniest derriere this side of the Mississippi!) at those who have strong gag reflexes! Yes, here's another story that reflects MY side of the family's warped sense of humor.

This is about people like my husband who has a strong gag reflex that he OBVIOUSLY passed on to our children and who doesn't think it's one bit funny when I laugh til I cry as he gags (ya gotta hear him gag) when a little hard thing in his burger finds its way into his mouth. BUT, even the Sarge belly laughs over the chain reaction gagging we get out of The Boys and the Old Soul!

So here's my latest experience with our infamous family gag reflex.

Our story begins on the long and winding road (you know that song?) home from the James Taylor concert that I was pseudo-forbidden to go to by our Pediatrician. Actually it was the camping, not the concert, he was against after our stay in the hospital. But, I finally got a "not no" answer for the concert without the camping which I took as yes and jumped in the mini-van for a 3-hour drive... a 3-hour drive (are you singing that part to the tune of the Gilligan's Isle theme song?). We drove straight up to Tanglewood in Lenox, Massachusetts to see our collective family-favorite artist perform in a lawn concert. Come on, life doesn't get any better than that, does it? So we enjoyed the heck out of the concert, packed up our oxygen and slept a few hours in a hotel overlooking the Mass Pike before heading home bright and early the next morning. My good intentions were to stop at McDonald's for a quick breakfast -- I didn't say healthy intentions -- as I just wanted to quickly feed the crew. But our GPS brought us WAAAAAAY off the beaten track and then inconveniently lost the satellite leaving us just as lost as the Skipper and his passengers on the Minnow... Right smack in the middle of no where! I tried to backtrack as much as I could remember and finally happened upon a nearly-deserted truck stop cafe. We took more time than I wanted to sit while The Boys ate their favorite breakfast of pancakes (though not my home-made chocolate, chocolate chip pancakes) while the Old Soul enjoyed her beloved bacon and eggs.

FINALLY and painstakingly done with every delicious bite, we headed out as the GPS directed us once again through the deep countryside for miles and miles of twisting country roads intermittently losing and finding it's signal. When I was thoroughly sure we were hopelessly lost I spied the little green highway sign for the Taconic Parkway -- our planned route home, but one I was sure I wasn't going to see again. Massively relieved to be finally on a known, major roadway, pointing steadfastly in the right direction and productively on our way home, I put the pedal to the metal to meet the increased 65 mph speed limit. Within minutes we were zooming along the scenic Taconic when Michael began with a small little cough. When you have 3 children recovering from pneumonia, a small little cough here and there is to be expected. But this one persisted, as though My Little Man had something stuck in his throat. (Probably one of those pneumonia-producing mucous plugs I swore didn't exist because he never coughed up a thing during his 15 days in the hospital!) I suggested he take a drink of his readily available apple juice and he obliged. But soon thereafter, the cough escalated to a near-but-not-quite choke. I scanned the horizon for a place to stop, seeing only the "15 miles to next exit" sign in view. For those who have never traveled the Taconic, there's much beauty but NO amenities on this road... and NO SHOULDER! With budget cuts in New York State, the road crews barely cut back the tall grasses and weeds on the sides of the roads these days... I kid you not. So, as the cough became a choke and the choke became a gag there was literally NO WHERE for me to pull over! Not for another 15 miles!

The gagging worsened and the Old Soul began yelling, "Mom, he's going to throw up! Do something!" I'm sure she wasn't happy about it, but she was right and there wasn't a thing I could do! He finally blew and projectile vomited all over the back of the car. With steep gullies and woods on either side of the road there was STILL NO WHERE FOR ME TO PULL OVER safely or otherwise! I certainly couldn't stop in-lane on a well-traveled 65mph highway! So I prayed he wouldn't choke and we both continued, the Little Man vomiting and me driving, frantically looking for a break in nature! Either his vomiting or the trees!

And here's the truly laugh-out-loud funny part: As the Little Man vomited, the Big Little Man looked on and began to gag himself. He gagged louder and louder and longer and longer, watching his little broey throw up. Not able to take his eyes off of the gruesome scene he continued gagging, sounding just like his dear old Dad. Long guttural gags that started in the toes and growled their way out of his little body sounding like they were coming out of a 200-lb, nearly 40-year-old man... just like his Daddy! Seriously LMBOing! Ultimately the Old Soul succumbed with her own gagging as I yelled at them both to, "LOOK AWAY! DON'T WATCH!" while still trying to vocally comfort my poor Little Man who, I could see in the rear view mirror, was still blowing his breakfast all over the car. My back seat was a scene straight out of a Monty Python movie! Me? I was crying -- because I was laughing so hard -- still searching the roadway for the break I needed that FINALLY came.


I barely fit the car onto the little strip of mowed grass (probably where the State Troopers sit as a jump-off to catch speeders). I couldn't get out the driver's side as my door would have been ripped from it's hinges by passing cars flying by at 65+ mph. I couldn't get out the front passenger door as the space was fully occupied by the huge oxygen-making machine loaned to us by the hospital, blocking my access. So I climbed into the fray of the back seat only to realize the sliding door was child-locked from the inside. COME ON! Back up front, hospital-property be damned, I climbed over the machine, out the door and threw open the sliders. The Big Little Man still gagging, the Old Soul staring out the opposite window as if ignoring the chaos beside her, trying to keep her mind from thinking about what was happening and barely able to control her gag reflex, while the Little Man sat quietly amidst the wreckage. Yeah, now he stops!

I quickly check the glove compartment, under the seats, in the door and seat pockets... There is not a single napkin or paper towel in the entire vehicle! THAT never happens! I horde fast food napkins for such occasions! But the Sarge took my bus through the car wash and cleaned up inside for the trip. Love that guy, but this time his timing was impeccable! With 2 potty-trained little men, my mind did not automatically go to wet wipes but did ultimately recall the bag tucked underneath the back seat with a few spare diaps, undies and half-used container of wipes.

Thankfully, JUST before the melee, I'd told the boys to take off their shoes and socks and settle in for a comfortable trip. So my Little man was barefoot. I sponge bathed the Little Man's legs, arms and face with wet wipes; carefully removed his shorts, wiped down his booster and covered the damp seat with a couple of the spare diapers laid open. For the first time in my 8 years as a mother, I was grateful for the projectile part of vomiting because the only clean shirt we had was the one he was wearing and it was still, miraculously SPOTLESS! Through my own intermittent fits of laughing and gagging, I was able to clean up the car to the point where the Old Soul was actually able to look without gagging herself and compliment me, "Wow Mom. You did a good job with just a few wipes!"

After I tied the knot on the garbage bag and we got underway again, my beautiful little girl expressed how dumbfounded she was at how I could stand to clean up such a HUGE and disgusting mess... and why in the holy heck was I laughing while I did it. I explained first that I just kept telling myself, "it's just spilled pancakes and apple juice" because that's all The Little Man had eaten! Then, laughing at the thought, I added that someday, when she was cleaning up after one of her own children who had thrown up, she'd remember THIS day, and remember me laughing and would laugh about it herself. She hesitated and then replied,

"I don't think so!"

Life Is Short!

"


I wish they had this in Penn Station when I was commuting. You can bet I'd take THAT Fast Lane EVERY SINGLE DAY! I mean, seriously.... Why walk when you can glide through life?

Never pass on an opportunity to have a little fun!

Watch the video by clicking the pic and think about it... seriously. Then click the back arrow when you're done and let me know if you'd jump on or pass! And whether you think you'd regret passing if that was your choice...

Personally, I can't imagine having any regrets for taking this path of least resistance and more fun!

You CAN'T Make This Stuff Up!

So there we are, sitting around the ER triage bed when the doc comes in to examine my sick Little Man. As he prepares to put the stethoscope to my baby's chest, he hears the faint sound of giggling behind him and turns to see my Big Little Man and the Old Soul playing quietly underneath a table in the corner of the room. He looks at the boy under the table, back at the boy in the bed, then back again at the boy under the table playing with his sister. The Sarge and I smile to ourselves as we see the twin recognition slowly creep into the doctor's brain. We proudly confirm his unspoken suspicions, "Yes, they're identical twins". At this point, the doc leans in as if he's going to share some intimate secret with me and says in a hushed tone, "So, do they both have.... (he leans further in and looks me earnestly in the eye)... autism?"



WHAT?????



I lean in dramatically, preparing to bestow the wisdom of the ages upon him and say out loud and with the great pride, "No, actually! Neither of them have AUTISM. But they do both have Down syndrome."



Seriously.... This man has a degree in medicine? Don't they cover genetics in medical school anymore? I'm pretty certain they cover it in most High School Biology Genetics units. Anyway, the Sarge was ready to get up and leave right then and there (LOL) no longer trusting the man to treat our child. Fortunately, the powers that be swiftly intervened with an ambulance transfer to a highly reputable children's hospital on the north shore. Fortunately, folks there recognized that my son had Down syndrome OR at least had the good sense to keep it to themselves if they didn't. Probably better that way.

My New Normal? God Help Me!

FIRST NIGHT HOME FROM THE HOSPITAL:

The pulsox beeped literally ALL NIGHT LONG,. The machine I've come to refer to as "the reducer" reduces (hence the name) the 02 level to 3/4s of a litre per minute no matter what I turn the oxygen-making machine to. I can't get more oxygen, therefore I can't get the Little Man's osygenation levels up to the prescribed 92 or above. I'm up all night struggling so my Little Man doesn't have to. It doesn't work for either of us. The next morning, I call the 02 supply company but they don't call back. Before bed the Sarge and I reconfigure the reducer out of the loop so I can resume implementing 1 to 1 1/2 litres/min so my Little Man can breathe.

SECOND NIGHT HOME FROM THE HOSPITAL:

10:16 PM -- Pulsox beeping. Oxygenation has fallen below 92. Silence the alarm. Check the sensor on the Little Man's finger. Stick the cannula back in his nose. Unravel him from the tangle of oxygen tubes and sensor wires... a little scary thought that he could strangle and I need to find a better method sniggles into my sleep deprived brain. Doesn't help me sleep any!

10:24 PM -- Pulsox beeping. Oxygenation has fallen below 92. This isn't going to work. Turn up the 02 machine, check the sensor on the Little Man's finger, replace the cannula in his nose, unravel the tangle of tubes and wires from his incessant tossing and turning and go back to bed.

10: 39 PM -- Pulsox beeping. Oxygenation has fallen below 92. Darn it. Check the sensor, it's pulled off his finger. Relocate it to his big toe to keep the wires away from his neck... that'll work! Oxygenation rises slightly. Check the cannula. Oh well, best I can do, I think.

10:53: PM -- Pulsox beeping again. Seriously! I'm never gonna get any sleep at this rate. I turn the level down to 90 and the beeping stops.

11:15 PM -- Pulsox beeping! Turn the 02 machine up to 2. To heck with trying to wean him from his overnight 02 requirements. He's OBVIOUSLY not ready for that yet! Oxygenation level goes up to 96. I'm happy! But more importantly, he's oxygenated! AND SLEEPING!

12:21 AM -- Pulsox beeping. He's wiggled the sensor off his toe. Relocate it to his tall-girl toe. Figure he has a lot less mobility in that digit... I mean, she's nearly useless on the hand except to hit the "L" or "O" on the keyboard, right? Seems to register his oxygen levels even better than on his big toe.

1:30 AM -- Pulsox alarm says the sensor's not working. Check all the connections but nothing appears amiss. Replace the pulsox sensor with the other one they gave me that's nearly as beat up. Does the trick for now.

2:59 AM -- Open my eyes to peek at the pulsox. It hasn't beeped in over an hour. Reads 95. That's cool. Back to sleep.

4:19 AM -- The Big Little Man scooches over to use me as a pillow and kicks the Little Man in his sensor-laden foot. Pulsox beeping. I retape the sensor and fight heartily to keep the Big Little Man from kicking his broey. I finally opt for dragging him back up to the head of the bed and snuggling with him sandwiched between The Sarge, the body pillow and the Little Man. NOT comfortable but it works. He's asleep again.

4:39 AM -- I wiggle away to the foot of the bed and grab some elusive sleep.

6:31 AM -- Wow almost 2 hours of uninterrupted sleep. How did THAT happen. Check that my Little Man is still breathing (a rational fear given the circumstances). He is. All is well. The morning light is creeping up on the horizon. I roll over and sleep... my eyes off the pulsox for one minute.

6:58 AM -- Pulsox beeping. Of course it is!

LAST NIGHT:

11:37 PM -- Big Little Man up with raging diaper rash due to meds from his pneumonia... a minor post-hospital-stay potty-training set back. He can't sleep. Too itchy! I change his Underjam, wash and dry, re medicate with Nystatin and slather with Triple Paste. Fingers crossed as I drift back to sleep.

12:38 AM -- I'm UP! Big Little Man moaning and groaning due to aforementioned diaper rash that goes all the way down the inside of his thighs. Wash and dry him and lay him open to "air out" for a few minutes before changing his Underjam and re medicating. Rinse, slather, repeat.

1:40 AM -- Big Little Man tossing and turning, moaning and groaning. Diaper rash is killing him... killing me too. Go through the motions again. He falls asleep in my arms.

3:15 AM -- I fall asleep too. Must be tired or something. I carefully peel myself away and crawl to the foot of the bed where there's a square inch of empty space I can claim for my own.

Boy am I tired.

TONIGHT:

10:05 PM -- bedtime

10:55 PM -- kids actually fall asleep (Hospital stay has resulted in a major upset in our usual 8-9:00 PM bedtime schedule).

11:21 PM -- Hovering like a ghost over the bedside, the Old Soul scares the bejeebers out of me from a sound sleep where I crashed sandwiched between The Boys. "Mom, I can't shut my mind off and I'm a little scared sleeping by myself!" (Poor baby, must have been the abandonment she felt when the Sarge and I spent 24 hours/day in the hospital for a week with her brothers.) Me: Ok, babe, lay down I'll be right there.

11:27 PM -- I manage to peel myself away from The Boys without waking them, carefully replacing my big old warm and soft body with a huge feather-stuffed body pillow. Smart huh? Helps keep them from kicking each other in their sleep too!

11:55 PM -- Pulsox alarm goes off. I manage to peel myself away from the Old Soul without waking her... the cats were not so lucky. I silence the alarm. Check the toe sensor... still in place. Check the nose cannula... it's shifted out of the Little Man's nose. Replace it. Watch him itch it back out. Replace it again. Watch him itch it back out again. Replace it... sticks this time. Pull 2 small pieces of fabric medical tape off the roll (found out the regular stuff gives him contact dermatitis all over his face) and carefully place them over the tubes at the sides of his head to help hold them in place. He'll hate me for that in the morning but it's the only way any of us are going to get any sleep.... OK, it's the only way I'M going to get any sleep.

12:01 AM -- Slide into my corner of the midnight world at the foot of my king-sized bed that's been completely usurped by The Boys... Pulsox quietly pulsing away literally barely tucked under my pillow glowing in my face. I've learned that it's easier to sleep with the infrared light in my eyes so when I open them I can quickly see the Little Man's oxygenation level and know that he's safe than it is to sleep worried that he can't breathe.

12:49 AM -- Preternatural sense that Bubba, my Chow Chow, is staring me down... Well, maybe I heard her panting in my sleep haze or subconsciously caught the faint click-clic-slide of her little paws on the bare stairs. Regardless, there she is.... OBVIOUSLY she has to go to the bathroom. Darn it! I quietly shimmy over the bed-rail, kick the magna-doodle and limp down the stairs with one VERY happy dog. She sits out in the cool night air for several minutes so I open my blog and tap out a few thoughts...

2:02 AM -- Time to go back to bed! Just about every living thing in our house has had a turn waking me from my "peaceful slumber". No use trying to catch up on lost sleep from our 15 day sting in the hospital. Thankfully, the Sarge is self-sufficient these days with his climate-controlled, oxygen-delivering sleep apnea machine. Uh oh... I hear my Little Man moaning. I wonder what his problem is. The nose cannula is taped in place and the pulsox is not beeping. Gotta go see and reclaim my corner of the mattress... surrounded by my children hearing them breath just a little bit easier tonight than last night. And just a smidge easier than the night before that. Thank GOD!