Goodbye 2010

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The closing of another year

bring no remorse & shed no tear

A hard year for some friends we’ve lost

in our hearts their lives embossed

A good year for the friends we’ve made;

for out of hospitals we’ve stayed

A high school grad resides with here

relaxing on his own “gap year”

Two four year olds, improving health,

learning, growth, affection wealth

The three year old makes gains as well

thriving, smiling, Momma’s  belle

In our hearts some pain and joy,

to our future: come peace buoy

As 2010 it’s hold release

Wish you joy, health, love & peace!

 

Wishing a safe, healthy and happy 2011 for you and your family!

OUR 12 days of Christmas

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On the first day of Christmas the Universe gave to me

A respiratory virus for three.

 

On the second day of Christmas the Universe gave to me

2 trachees sneezing

And a respiratory virus for three.

 

On the third day of Christmas the Universe gave to me

3 wheezing crankies

2 trachees sneezing

And a respiratory virus for three.

 

On the fourth day of Christmas the Universe gave to me

4 bags of laundry

3 wheezing crankies

2 trachees sneezing

And a respiratory virus for three.

 

On the fifth day of Christmas the Universe gave to me

5 albuterol nebs…

4 bags of laundry

3 wheezing crankies

2 trachees sneezing

And a respiratory virus for three.

 

On the sixth day of Christmas the Universe gave to me

6 dirty neb kits                 (before breakfast)

… 5 albuterol nebs…

4 bags of laundry

3 wheezing crankies

2 trachees sneezing

And a respiratory virus for three.

 

On the seventh day of Christmas the Universe gave to me

7 days no nursing

6 dirty neb kits

… 5 albuterol nebs…

4 bags of laundry

3 wheezing crankies

2 trachees sneezing

And a respiratory virus for three.

 

On the eighth day of Christmas the Universe gave to me

8 hours cleaning

7 days no nursing

6 dirty neb kits

… 5 albuterol nebs…

4 bags of laundry

3 wheezing crankies

2 trachees sneezing

And a respiratory virus for three.

 

On the ninth day of Christmas the Universe gave to me

9 rounds Chest PT

8 hours cleaning

7 days no nursing

6 dirty neb kits

… 5 albuterol nebs…

4 bags of laundry

3 wheezing crankies

2 trachees sneezing

And a respiratory virus for three.

 

On the tenth day of Christmas the Universe gave to me

10 unreturned phone calls   (yes, all to doctors)

9 rounds Chest PT

8 hours cleaning

7 days no nursing

6 dirty neb kits

… 5 albuterol nebs…

4 bags of laundry

3 wheezing crankies

2 trachees sneezing

And a respiratory virus for three.

 

On the eleventh day of Christmas the Universe gave to me

11 missing supplies

10 unreturned phone calls

9 rounds Chest PT

8 hours cleaning

7 days no nursing

6 dirty neb kits

… 5 albuterol nebs…

4 bags of laundry

3 wheezing crankies

2 trachees sneezing

And a respiratory virus for three.

 

On the twelfth day of Christmas the Universe gave to me

12 hours oxygen

11 missing supplies

10 unreturned phone calls

9 rounds Chest PT

8 hours cleaning

7 days no nursing

6 dirty neb kits

… 5 albuterol nebs…

4 bags of laundry

3 wheezing crankies

2 trachees sneezing

And a respiratory virus for three.

 

 

 

 

 

BUT: at least we’re still at home!

 

I am the “broken toy”

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You might wonder what the heck I mean by my title… well, let me tell you about the Christmases of my childhood. Each Christmas, five kids would receive gifts under the tree and in stockings. If my parents bought different things for each of us, the item chosen for me would inevitably be the one with a piece missing- e.g., the DOLL from a “doll & cradle” set. Place markers or dice would be missing from games, I would get the “irregular” pair of footie pajamas with one arm that was significantly tighter than the other- and, NO, I was not grossly asymmetrical! On occasions when my parents would buy all of us the same item for Christmas, say cross country skis, my bindings were set for a pair of boots 3 sizes smaller than my feet. The year we got 3-speed bikes, my sisters rode theirs Christmas day while I was sick with the “stomach flu”- AGAIN! That was the winter of 1977-78, remember? The blizzard of ’77-’78 started dumping 1 foot of snow after another on us late in the evening of Christmas Day. My parents discovered in the spring that there was a piece missing to my bike’s derailer… My Mom worked so hard to try to change the karma of my gifts; she would wrap and tag, then on Christmas Eve, SWITCH tags to try to trick the karma police- inevitably her switch would find the “broken toy”.

So, this year, it is not surprising to find the “broken toy” moniker still fits. This year, when Santa ordered my Christmas present- seriously, he DOES, I have been GOOD- he struggled a great deal in trying to find the perfect item that I would love and appreciate. When he finally found “IT”, he had difficulty getting the forms on the website to work- it would only let him order it with ONE attachment with no personalization, then would allow multiple attachments but only ONE personalization- but who needs multiple things like that all labeled with EXACTLY the same name and birthdate? When the online ordering was finally corrected, Santa checked it twice- as he always does- then clicked “Complete order.” Not surprisingly, this first attempt was met with a failure of the internet at just about the submission point, so the entire order was lost in the ne’er world. 50th time was a charm and the item was finally ordered and the e-mail confirmation included exactly the right information in the right way.

Flash forward from that e-mail to the much anticipated arrival of the Santa gift today. The item came in the company’s signature red box with cream colored ribbon- as did the item Santa ordered for my older sister since he knew I had drawn her name in the “swap”. In order to determine which item would get the enclosed gift card addressed to her, a box had to be opened to determine which one held her gift and which one held the lavish and beautiful item that Santa felt I so richly deserve this year… There was a weight difference so the guess was correct on the first try and her gift was intact and BEAUTIFUL, tucked safely back in the wrapping for her to open on Christmas day during the forced family fun extravaganza that is planned. ANYWAY, after identifying the correct item for the gift tag, I reviewed the invoice for both items and noticed a slight error in the description of the gift Santa got for me. Well, knowing what I know about my karma and the likelihood that the error was, in fact, the way the company produced the item they delivered to my home, I had to review the contents of the other box to be sure that they had in fact sent the “broken toy” gift for me.

Upon reviewing the birthstone pendants and their personalization, sure enough, one of the twins’ name and birthdate was on the August pendant and my youngest’s name and birthdate was on one of the March pendants. Now, it’s possible that the names could get switched across items given the engraver’s lack of knowledge of my kids names associated to their birthdate… but wouldn’t you think it might feel “wrong” to an engraver to write “8-2-07” on an aquamarine pendant and then write “3-2-06” on a peridot one? Okay, I understand, you may not know that aquamarine is the birthstone for March and peridot is the birthstone for August, but wouldn’t you think that the guy who runs the engraver for Red Envelope might know? Especially after he had just completed another aquamarine pendant with the same birthdate on it as another of the pendants? I’m just sayin’… there may have been multiple clues that the wrong birthdate was being engraved and, perhaps the original order could have been consulted…? Nope. So now I have this beautiful mother’s pendant necklace, with 2 incorrectly engraved pendants- out of 4.

The good news in all of this is that Santa called Red Envelope immediately to notify them of the mistake. He spoke with them about how important it was for the engraving to be correct and on the correct birthstone pendant. He also told them that I had been so amazingly good this year that it would be a true disappointment if I had no gift from him under the tree on Christmas day… Well, wouldn’t you know, Red Envelope has just about the most amazing customer service department when it comes to errors made on their end. They told Santa that he was to keep that necklace and ALL of the pendants and that, since it was more than $75.00, they would replace the entire necklace and pendant set– crafting 4 new pendants and sending another silver chain to hang them on. Two necklaces for the price of one, sure the kid’s names are wrongly aligned, but you only see the engraving on the side of the pendant when you examine it closely. Could be the Nana is going to get a mighty nice 70th birthday gift this March… maybe I could get a jeweler to transfer the stones onto the correct pendant.

Yay, broken toy!

Rumson

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This morning, during that time of morning when you are nearly awake but not quite, I dreamt of visiting my grandparents’ home in New Jersey. When I realized where I was, I was standing in front of the bungalow with my kids in a wagon behind me. An older man was standing on the porch and talking to me and I told him that his home had been my Nana & Poppop’s when I was a child. He invited me in and I showed the kids the living room which was decorated for Christmas.

Part way into the living room, the scene changed. Suddenly the living room had my grandfather’s organ sitting on the south wall where it had always stood. The kitchen table was visible through the open kitchen door and upon it was the glass “spooner” that my Nana used to store her teaspoons. There were metal kid cups and bumpy amber glass ones for adults sitting on the table waiting for us.

I could hear a piano being played in the basement- meaning my Poppop was downstairs playing to entertain us- but we went out the back door so I could show the kids the tree in the center of the driveway, with its twisted trunk and lined bark. The driveway was still the same black gravel, with the narrow strip of yard on one side partially taken up by the laundry lines which were drying the day’s sheets. The yard was edged in a high, tight-planted hedgerow, a natural fence of sorts, high on the lawn-side next to the picnic table and low on the drive side, along the Rogers’ back lawn.

The rest of the dream was snippets of memories throughout the yard and house: a birthday party in the backyard, a circular swing hung from the twisted tree, a parade around the block dressed in clown costumes & house-dresses with bright red lipstick mouths. Indoors again was the same tour: Nana & her sisters and my Mom & aunt sitting at the table talking as they got dinner ready, Poppop sitting next to me and playing the organ, 5 glee-filled kids sitting on the stairs behind the door to upstairs WAITING to be let into the living room to see what had been brought by Santa.

I loved that house growing up. The neighborhood was flat and the tree-lined street was home to many families with children near our age. I remember playing some game where you throw an object into the air, calling out a name, and everyone but that person runs from the object. The person called catches the ball or bean bag, then yells “stop” and tries to throw it and hit one of the other players to make them “out”. Although I can’t remember the name of the game, I can remember the smell of the neighborhood, the squirrels running back and forth on the telephone wires that lined the road, and that we played that game in the street until long after dusk when we would transition to catching fireflies before being called in to sleep.

The strongest feelings I experienced while dreaming about Rumson were those of safety and security. It was a warm and comfortable place, filled with happy memories and people I have loved. I haven’t dreamt like that in such a long time. I wonder where I may travel another time I am blessed with sleep…

Community: to come to unity by shared experience

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Community is a word with many definitions across similar relationships. In the past, and in today’s dictionary ( http://dictionary.reference.com/browse/community ), the list always begins with definitions which include a common location or a common religious belief system. Late in the list, about definition 8 of 9, is the description that I think will one day head the list:

8. similar character; agreement; identity: community of interests.

My community has little to do with where the building in which I live is located. I know how some of my community members express their beliefs religiously or universally, but it is not common across each of us. I find community in families and individuals who share my life experiences, views on humanity, and commonality of challenges with which we are faced each day. My community is the group of families & individuals throughout the world that face the challenges of caring for an individual with special medical and/or developmental needs. Each day we face includes supporting each other through the ups and downs of the health status of the child or other family member, the variability of ability we see relative to this roller coaster, and our own fatigue from supporting and caretaking. We spend life walking in the shadows of major medical centers, avoiding the situations we know can put our family member in jeopardy, celebrating today’s health while preparing for the next hurdle- like a track meet, there are always hurdles.

My community is one that is powerful in its strength to support each other. They are present to provide information to those beginning the journey. They listen when things are challenging to another member of the community. They commiserate when someone has a bad day, recommend strategies to make the next day better, share virtual hugs and imaginary chocolate- using the language of the community of old to describe their wish to support each other. They hear and respond.

My community is one that frequently suffers great loss together. When a child or family member becomes sick, struggling to continue, nearing the end of this journey on earth, my community rallies. Words of encouragement are posted on social networking sites, medical condition boards, virtual and postal cards are sent. There is no hour that goes by that we don’t reach out to each other, letting everyone know, asking everyone to pray or connect with the energy of the universe in the way that makes sense to their beliefs. Our community is inhabited by a great number of angels, of spirits beyond, of people who we have loved who have journeyed to the light. We grieve each loss together, provide the support we are able, and celebrate the life of the person with worldwide balloon releases, bubble-blowing, changing of  “profile pictures”, words of encouragement for those who remain.

I believe we are truly living in a time where the definition of community as co-location & shared beliefs is nearing obsolescence.  My community is limited by no political border, no race, no color nor creed. My community is more open, more inclusive, more “come unity” that I have chosen. It is the coming to unity of experiences that sustains us as members of a community for each other.

Random Stupid Candy Post

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As though the title is not warning enough, I have to say if you are looking for a serious post on the joys or trials of our daily lives, today you will be sadly disappointed. Today’s post is not another of my inane and rhyming poems about life with trachs or reconstructive surgery- it is about M&Ms. I kinda feel like M&Ms are one of the greatest candies out there- no matter your taste preferences, desire for milk or dark chocolate, plain or filled, you can find what you want in M&Ms. You can open a bag and eat it through to the bottom, reach in and just pull out a couple, or fill your hand and leave the bowl. With children (if you’re inclined to share) there are colors to sort, crafts to make, counting which can be done.

Now here’s the part where the true me shines through. Keep in mind, you are here because you were invited, YOU are within the inner circle… you REALLY should KNOW this stuff about me: I eat M&Ms in a highly structured, ritualized manner. I adhere to strict rules and have been known to dispose of this beautiful candy when pieces or amounts do not conform. Here goes:

I eat M&Ms in even numbers. I cannot eat 1 or 3 or 7 M&Ms. If you are my friend and offer to share M&Ms with me, prepare yourself to provide an even number. If I am eating M&Ms and there is an odd number, I will offer any remainder to you- and perhaps some other even grouping along with it so as not to appear TOO ODD… If you choose NOT to accept my offer, I will promptly throw the lone offender into the trash or onto the ground where it may later attract one of our numerous younglings or some other vermin. I guess what I am saying is: say ‘no’ at your own risk!

When eating M&Ms, I prefer to pop them into my mouth 2×2, making sure not to ingest 2 of the same color at the same time. I have no rules about color combinations- red may be eaten with brown, yellow with blue, but sometimes I will organize so that I don’t eat the next one of the same color prior to eating one of all available colors in my hand- unless, of course, that would leave me with 2 of the same color in the end… Broken M&Ms are not eaten- nor “smidges” – the tiny misshapen drops of candy coating that are sometimes within. You may be surprised to know that a bag of M&Ms typically has an even number of candies within it.

At any rate, with all the things that are beyond my control in my day-to-day life, my M&M ritual brings sanity and predictability and control back to my side of the table. You all may think I am warped, that I have sucked the fun out of a one-time enjoyable candy for you. I challenge you to check out the way YOU eat M&Ms- odds are, it’s more predictable than you think…

What are your food rituals?

LTR- with Rib Graft Poem Foolery

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When your subglottis is narrowed

and various trachea parts are bowed,

a reconstruction’s what you need

an ENT can do the deed.

He first will harvest one mid-rib

And cartilage he’ll have for gib

He’ll graft the narrows, do his best

and then you’ll need some mighty rest.

A day sedated, maybe two,

Until the nurse awakens you.

The stent he placed will take a ride

and in your trachea reside-

for a week or weeks, it will depend,

you’ll hunker down until the end.

Bronchoscopy for its removal

Repeat in a week to assess the upheaval.

The goal is air will better flow

just as it is supposed to go…

Perhaps dilation will be next

until you pass his airway test.

Then with healing finally comes

your voice escaping cross your gums!

Celebration, joy, elation!

Worthy all that consternation.

LTR with rib graft cures

some SGS in trach of yours!