The tapestry of the life of a medically complex family

Archive for December, 2010

Goodbye 2010

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

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!

Rumson

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

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.

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