The tapestry of the life of a medically complex family

Apple Picking September 2013

Friday was the day we went to pick apples to make our favorite fall gallettes.









I keep looking at this online photo of a friend. It keeps coming across my newsfeed as people comment on it. I knew her as a child. We went to school together, her Mom coached a Little League team. I went to few parties as a kid but I remember the pool at her house- I was invited there even though it was my sister & brother who were on her Mom’s baseball team.

I remember her as a beautiful person- on the inside. The girl with the blonde hair, rounded face & eyes that crinkled with her broad smile. I look back & think maybe few people then saw the beauty I reflect back on each time I see her smile cruise my Newsfeed. She was not a thin child- nor was I. But I remember her laugh, see her childhood smile in her face, remember her as being kind, accepting. I was bullied lots in childhood- I ignored most of it (except the rocks that hit me)- but she was NEVER like that in my memory.
Today my newsfeed is flooded with people who comment about her beauty- and I wonder how long they have known. You see, she is thin now. She is married to the “swoon guy” of our high school class (also a nice guy in my memory). She works as a beautician/ hairdresser/ stylist. I wonder if these same people saw her beauty while she grew up, before she was thin. Before her outside matched the definition of society, while she was a beautiful & “not thin” person… I know I did.


I dream of haircuts and dinners out
Of trips to amusement parks
And walking about

Of having a life beyond this small room
Vacation, independence,
And friends for each too

Hotdogs at the ball field
Sweaty seats on the T
Dreaming of normal that ne’er may be
Sprained ankles from skates
Tapping my wrist when arrival home late

High school and homework and


Nebs & meds & feeding trials
Greetings, hugs & beautiful smiles
Play & read & interact
Teach & learn, health status track
Bathe & complete trach care/change
GTube placement check, rearrange

Mid-day food may take so long
Mid-afternoon stretch & dance to song
Health assessment again at least
Add on treatments to stay “the beast”

Oops! Snack’s late! Run to kitchen.
Calories tracked, must get all in.

BARELY time to do much else
Place the toys back on the shelf,
Craft some dinner while they draw
Food refusal daily flaw

Meds, brush teeth, toilet rotation
Return to beds for neb medications
Pure exhaustion & anxiety spikes
Try to adjust things to his exact likes
Then 3 pass out, sleeping sound
While my continued work abound

Feed up, nebs clean, then the dishes
Wish all was done with goodnight kisses
ALARM!! Move child. Adjust the lines.
Add oxygen? Lung sounds? Write down finds.
A few repetitions of the same theme
Tiredness sets in but can’t yet dream

Feed stage 2 prep, change it over
Observe for delivery, let out ‘rover’
Wash the prep tools, counters, table
Try to nap hours while you’re able.
Every few hours check all of them
Awaken morning to begin again.

My beautiful baby got big!!!!!!






Blueberries 2013

Although it’s rarely easy, I work to give my kids age appropriate experiences. Today we packed up oxygen, suction, cooling vests and the wagon to head off to the blueberry patch. Trachboy picked nearly a half hour before needing the cooling vest & to sit in the wagon. The girls fared better, Youngest sat to pick but moved between rows pretty well considering. Trachgirl even handled being buzzed by a bee.
Trachboy needed suction a few times and an oxygen increase to 1.5Lpm to keep going (seated) but he ate more than the girls while there in the bushes. Lunch was delicious with the fresh blueberries in our homemade yogurt. Enjoy the photos.