The tapestry of the life of a medically complex family

Archive for February, 2012

My Dad’s Mom

I live in the year 2011 with 3 surviving preemies. Yes, my kids have their ongoing challenges, but we have the benefit of the technology & scientific knowledge of many, many years of medical advancement in the treatment of babies born too soon. My kids benefit everyday from these developments.

November 4 1935, my grandmother gave birth to a premature baby at about 7 months along. The stories told are about the 4 pound baby arriving ahead of his cousin due much before his expected arrival. Grammy wrapped this tiny bundle in a tea towel & nested him in a bread pan, placing it on the warming shelf at the back of the wood cookstove they used for much of their heat.

Bundled in a tea towel, warmed by a woodstove, my grandmother’s oldest child benefited immeasurably from being delivered into the care of a trained nurse. He grew from his few pound origin, through a childhood as the oldest of 4, to be a 6′ tall retired Lieutenant Colonel from the Army & professional engineer. My amazing grandmother raised a preemie from an early beginning into the successful adult my father later became. She was just incredible.

Month of YES

Here we are. February 4th. The day after our nutrition appointment where they asked about my thoughts on placing another GTube. My thoughts: FEAR. TERROR. TORTURE. My son experienced an incorrectly place GTube that no one realized was blocking the exit to his stomach- for 4 YEARS!! He experienced constant, sustained, SEVERE pain that took him until 3.5 to be able to communicate. We have a little over a month until our GI appointment where they will bring it up again. We have work to do. We need new strategies. This post is going to be about “Step 1”.

Step 1 for us is going to be to try to make food in our house more about “yes” & less about force & control. I know for those who don’t have a child with special developmental & medical needs, you are thinking: “Force & control? That’s MESSED up!” And you’re right, it is… But it’s a long & winding “Failure to Thrive” road that gets a family like ours to this place- & we need your support & encouragement, not judgment.

As my 27-week preemie trached twins head to their 6th birthday in March, they continue to have slow growth & development. FINALLY my 4.5y.o. has a “green light” on her exit from the “slow growth & gain” train. Our February of “YES”.

We have 25 more days of February & we are going to try being more of a “yes” family with food.

YES you can have a banana after waffles at breakfast

YES you can have a couple ounces of water first thing in the AM before hi-calorie Peanut Butter Formula

YES we can talk at the table and try to still get food in

YES you can have a lo-cal orange as your breakfast after finishing PBFormula instead of sausages which give you more calories at your “best meal of the day”…

YES to getting milk & food at the SAME TIME vs. “Fluids first, food after”

YES to veggies & meats delivered at the same time at dinner vs. “Meat first, veggies after” (My kids are the ones who see salad as a dessert food)

My goal in the “Month of YES” is not weight gain- that would be nice, awesome, but not my goal. My goal is changing the culture if meals from “torture to be endured” to … anything less noxious- something I don’t yet have words for. Wish us luck. Wish us “YES”.

My Father

My father was a brilliant man. He led the design team which developed the technology, now GPS & LoJack, used by the military to locate pilots who had gone down in enemy territory. He secured 6 patents for his company [GTE Sylvania] where he worked first as a co-op student through Northeastern U, through his retirement in his early 50s. He was a government contract specialist & sat lunch with the team who developed the “bar code”- then top secret for the railroad- and rode aircraft carriers to test & improve the technology that he & his teams designed.

He was in the military, retiring as a Lieutenant Colonel from the Army Reserves. In addition to his work as an engineer, he taught military strategy & other courses for the army at their nearby base 2 evenings/week. If you struggled with math homework, he was ever ready to assist- but keep in mind that he might teach you 6 different ways to arrive at the answer- thereby confusing you further- and he would never GIVE you the answer, just tell you how to figure it out on your own.

Frankly, that about sums up how he felt about the whole job of fathering: teach tools. Give the kids the tools they need to survive in a world that is competitive, and not always kind, and you have done your job. He was the dad who gave us roller skates & a skate key & let us “have at it” on our driveway- 1/5 of a mile long, mostly hill, some very steep. You sure learned a lot if you chose to go around the parking area counter-clockwise & ended up skidding downhill if you missed the turn!

One of my most fond memories of him as a kid is captured in an old family photo. My Dad is sitting in our over-stuffed armchair, 4 kids spilling over onto the arms of the chair, infant in his arms & our first copy of the book “Ira Sleeps Over” in his outstretched hand. His reading of stories was magical- each character having their own sound & personality. Our attention was always completely riveted to the story at hand. I inherited my love of literature from him and have a collection of children’s books that rivals our local library.

He taught us to swing a golf club- his fellow legislators called him a “shark” after playing their first tournament with him. He was a Ham Radio Operator who “Worked All Counties [in MA]”, “Worked All Continents”, & “Worked All Countries”- yes, he communicated with someone from every country in the world where a Ham Radio Operator transmitted.  Every Christmas, Santa gave him a “callbook” from all 5 kids [only sound explanation since we never knew where it came from]. He came home on nights after work and sat us at the table to teach us morse code- just in case we ever needed it to get assistance. He was directive, instructional & a person admired by many.

In addition to his military service, he worked in town government [Budget Committee, Technology Committee…], set up then upgraded all the town computer systems through 1995, chaired the “Save Town Meeting” committee in NH and served as a NH representative. After 3 terms as NH Representative for our town, he retired his seat and succumbed to the cancer ravaging his body. He was 60 years old. It’ll be 16 years on my youngest’s next birthday & I still miss him.

A soft & loving heart

This month, I am going to try & blog every day. Thanks, Blogher, for your motivation & blog forum!

My Mother has the softest & most beautiful brown eyes. Looking into those eyes, you can view the depth of her heart & the wear of the work she has done in this world. She is the soft to my Dad’s coarse, the laughter to the austere, the leisure to the wide tie & the trail ride to the nightly news. She taught us about organic gardening, horseback riding, and self-respect. One of the more valued lessons learned from her: respect of each & every human life.

When I was a kid, my Mom taught us to respect others by example. She worked as a home-health aide for a while and some of her clients taught us all a great deal about the value of any life. One couple she visited were 80-year-olds with diabetes. The wife was a sweet woman who was all of 4.5 feet tall. Sophie & her husband of a lifetime lived in an antique home that needed small repairs, as well as a bit of a scrub down. When the woman’s husband went into the hospital for a procedure, my Mom packed us into the car & brought us to the house to help out with what we could. Weeds pulled, windows washed & floors clean, the house shone at its best when she welcomed her husband back home to recuperate. How rewarding it was to help another prepare for the final home-coming of her high school sweetheart!

Another woman who she visited lived with her adult son with disabilities. He had CP, was blind & hard of hearing. I remember going with Mom on a visit and playing music & singing with him, while he smiled and enjoyed the company. To my mom & to us, he was just like any other son of a friend of hers. We talked to & with him- never at or about him. When we would visit their home, Mom would help out his mother while we checked in with him to see if he needed anything – or which record he wanted to hear next.

Her model of respect and acceptance led me to the life I lead now. I learned the value of each person, regardless their abilities, or health status, or age. My mother is a shining example of treating others as you would like to be treated- and I thank her for allowing me to grow in her environment of acceptance. I know 3 or 4 of her grandchildren thank her as well.