The tapestry of the life of a medically complex family

Archive for the ‘Special Needs’ Category

Battle Cry

I apologize when I cry. Not just to the friend who wipes his shirt with a tissue when I’m done, or the friend whose dishtowel needs the dryer after a long lament.

I apologize for each tear that escapes my eye while talking about the difficulty of awake nights spent caregiving my children. I apologize for the gasp that escapes as I talk about my son’s ride in the wagon to the apple tree, to which he could run 2 years ago. I apologize for the pause while talking to the phone nurse and describing how ill my child is again, or yet.

I apologize to my nurses when I cry from the stress, or from loss, or from injury. I apologize.

I grew up in a home where crying was a sign of ‘weakness’. Crying in the house of the Colonel was the equivalent of yelling your inadequacy from the rooftop. It was admonished. It was hidden. It was shunned.

There is a doctor my kids’ see who must also have been raised by the colonel. The notes describe significant concern about my stress. Tears fell but I continued; my kids were safe, they were (are) well-cared for, yet my stress was concerning.

I am sure I apologized. I apologized today to the phone nurse. I apologized to the doc who called me back- not because I cried then, but because I had cried.

The next time I cry, I will work not apologize. When I cry, it is because I am strong for so long. When I cry, it is because I feel so deeply. When I cry, it is to release the strain, to refill my resolve, to regain my strength. I should not apologize for that.

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Apple Picking September 2013

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

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Be

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

Lyfe

Morning
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.

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.

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Monotony

I live an invariable life.

While others lament the “heat waves” that ebb & flow through New England summer, I hunt my lamb’s wool slippers every mid-day to tame the chill set by the AC. Heat intolerance is severe with the wee ones who seem to generate their own as a by-product of their metabolic condition. 65 is their ideal. We have all grown so used to it that I am able to detect the rising humidity, the point at which the temperature rises to 70.

The walls of the playroom and kitchen house our day. There are those fleeting moments when I open a door to put out the dog or receive an oxygen delivery. I am shocked by the heat that blasts through the opening. We read, play, climb, swing & slide indoors until the relief of fall arrives. Our only escapes: clinic visits, surgeries, medical tests- each with a cost: fatigue, regression, declining respiratory status.

Monotony. Invariability.

Safety. “Health”.

The Gift of Special Needs & Illness

I was chatting with another Mom to a child who will not outlive her. It is a difficult awareness that we live each day. A difficulty that is not without its own gifts for we who live it.

I think one thing about our kids:
It won’t always comfort us, but their strength through all this adversity, their joy, their sweetness, their ability to draw people into our lives who understand- who love us & them- that legacy will stay with us when we no longer have them with us physically. YOU, other parents of children LIKE mine & different from mine… it’s a gift my children have provided that will outlive them.

Bittersweet gift, but a gift for which I will forever be thankful.