The tapestry of the life of a medically complex family

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.

The Day Before Again

Originally I published this piece the day before my friend’s son’s first birthday after his death. This week has been one of tremendous loss in my community of friends and another friend is trying to get through a 10th birthday- that isn’t. My heart is still touched by these many children. Here is my message to E’s Mom:

SO many posts are running through my head but the one I need to write TODAY is this one- because tomorrow I can’t say all that needs to be said today.

Today is Tuesday. Today is just another day. Today is the day before the 5th birthday of a child of a wonderful friend of mine. Today should be a day for last minute preparations, baking, decorating, stuffing gift bags… but it’s not. Because my friend’s child had a complex medical condition and he died last fall. He is dead. People can say the ugly words religions use to describe this, but saying “angel”, “heaven”, “whole again”, “in the light”, NONE of these things fill the emptiness in my friend’s arms, the ache in her heart, the agony she is experiencing as tomorrow approaches. Tomorrow she faces another “first” in the list of events after the death of a child- his first birthday on which he will not age, he will not enjoy candles and cake with she and his younger brother, he will not… anything. He no longer exists in the physical realm we experience on Earth. It SUCKS. And I am angry at the Universe that so many of my friends have to, or will, experience this pain.

I want to remind her that tomorrow is no different- it is not special in its difference from each and every day- every painful day without her son. It is holding her now in a state of terror, fear that tomorrow will bring the collapse she has spent all these months fighting. That does not make tomorrow more special than any day this week, or last week, or last month, or Christmas or any other day. Tomorrow will come, and the searing pain and agony of his loss will be great, but not as great as that first day, that first moment of knowing and not being able to bring him back. I want her to know that she survived the worst on that day, that she has the strength to face and get through tomorrow because she has already survived the worst. She has already committed to continuing, to thriving, to supporting her other son to thrive, as the son who has died would want. She is so strong- although she is feeling as if a drop of water, a shift in the breeze, might be all it takes to break her. She is strong and she doesn’t need to be- because we are here to help hold her when the journey knocks her down.

I want her to know, and to feel, that she is loved and supported and right and just on her trail through the perils of the loss of a child. What I want to do is go to her; to bring cake, to bring candles, to bring wine, and to sit and hold hands and hug and cry and laugh and remember the beacon her child shared with the world for his short 4.5 years. I want to celebrate the gift that was her child. I want her agony to soothe, her memories of joy to once again be strong. I want some of the moments she experiences to be filled with peace. Please know we love you and will be celebrating the life of our special friend tomorrow.

Apple Picking September 2013

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

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Beauty

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.

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.

My beautiful baby got big!!!!!!

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