The tapestry of the life of a medically complex family

Archive for April, 2012

Outdoor Play

Getting outside more has been a goal of mine for some time now. This week, I finally got some time with a nurse so that I could go get the final pieces of wood and hardware for our latest outdoor adventure. THESE are the faces of SUCCESS!

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Seriously- Romance?

I sign on for the National Poetry Month Blogroll at BlogHer and their prompts already have veered far from my life. The best romantic poem? Seriously? Who reads those? More importantly: who CAN read those??

Don’t get me wrong, I have LOTS of love in my life- just none of a romantic nature. My children love me to the moon & back, & I them. Some of my nurses love me, in addition to loving my kids. They show this through their thoughtful encouragement for the day-to-day, in baking for friends & being sure to bring me some, by repairing a broken screen door during the overnight shift. My kids’ biological and adoptive families share love with us all the time, but “romance”- LOL

At one-point, a few friends suggested I post a profile on an online dating site- they even began crafting my profile description. In keeping with the “spirit” of the BlogHer challenge, and honoring poetry in my posts all month long, here is my version of my poetic personal ad:

SWF likes:

Leisurely strolls through hospital halls

Internet shopping, not crowd-filled malls

Long, 3-4 hour, grain-free meals

Ortho-clogs, ne’er spikey heels.


Tall & smart & kind & stressed

Medical emergencies at her best

Many children at her knee

Happy, smiling, busy bee



Kind & strong & loving man

Medical training a plus my friend.

Helicopter pilot a valued skill-

Quick land on hospitals for a thrill-

Soft of heart & quick of mind

Cherished partner love to find.


Not thinking it would work, but there it is: romance. 🙂


So Happy Its Tuesday

Today’s another wheezy day

Reduction in their time for play

Nebs on meds on nebs again

The Vest, some care, neb number 10


Top of hill there’s feeding woes

Slower than the sloth it goes

7 hours every day-

How long can feeds go on this way?


Love and hugs and play and song

Are fit between the meds along

Bedtime pause, sing one-on-one,

Then more nebs ‘fore day is done.


Lest we rest, we do not dare,

Pause in loving complex care.

Future hopeful, but unknown,

Days are PICU in our home,


Memories are made each day

Special moments on the way

Ne’er forget to cherish each

Love each other, this do teach.



First Poems

In trying to participate in the NaBloPoMo Blogroll this month, I guess veering from their first suggestion mightn’t encourage me to keep writing this month. My first poem I remember memorizing may have been “Hickory Dickory Dock”… It has been a very long time. I have memorized so very many and written many more since then.

When I was a child I went to a parochial school so we memorized many poems, prayers & other religious  litany. During my time in elementary school, I also wrote many poems. I remember being the student chosen to write a poem for an Easter service, and having it done up in calligraphy by our class’s most talented artist.

One of the poems I wrote in elementary school was accepted into an “American Poetry Anthology” when I submitted it during late elementary or early high school. I don’t remember which one and have not ever seen a copy of the text but I remember the poem. Short and reflective of where I was in my life at the time:

This little flower, Alone on a hill

Watching & waiting for a message of God’s Will

Be like this flower, Ye children of God

And watch, It is not a bed of flowers on which your feet trod.

[Gretchen Kirby, circa 1976]