The tapestry of the life of a medically complex family

A Map of Me

So, I mostly write here about my kids- since they dominate the essence of the tapestry of my life. They dictate the events, the timelines, the tonal qualities of the day-to-day. Today is a fairly good day. After the 7 scheduled AM nebs we are headed into only the first saline neb and it’s nearly 12:30p – great sign that the inhaled antibiotics are working! There I go AGAIN!

Anyway, I grew up with 4 sisters and brothers in a “typical” Irish-American New England household. My 2 sisters and 2 brothers all fall into the grouping I would refer to as “my age”- there being just under 7 years between my older sister and youngest brother. I shared a room with my younger sister and, although we had very different interests as we got older, we have been very close throughout life- until the adoption of my children… but that’s another post!

I was second in line by age but really took the “eldest” role- being only 18 months younger than my older sister and pacing her developmentally. We were kids who spent every day outside, played Little League baseball, and took care of a mini-farm full of animals including: horses, pigs, chickens, dogs, cats and sometimes sheep or steer.  We had a garden that my Mom took primary care of and used it as our snack cabinet for carrots and other veggies much of our summer.

Our home sat on 7 acres, behind other street-side houses, hidden from the road by trees and the barn. It was about 1/5 mile uphill on our driveway from the road and the driveway was paved a few months after we moved in. That driveway was a serious source of amusement and adventure- cruising down it on bikes, rollerskating on the back parking area, shoveling it before my parents bought a small tractor with snow blower & plow capacities. I remember the many times we went to school with matching skinned elbows to the person we rode down to the first turn in the Radio Flyer wagon, risking life & limb!

Growing up in this family, we learned to share, debate, laugh, entertain ourselves, ride horses and be responsible for ourselves & others; animal feeding, bedding and watering were our chores from an early age. We were encouraged to do well in school. Conversations about college were based on the “where you would go” tenet, not “if”. Each of us was encouraged to work to our potential and succeed at the career we chose for ourselves. Our parents may not have agreed with every chosen path, but they provided the guidance and support to get us where we wanted to go.

It wasn’t “perfect”- lest you feel I came from some idyllic upbringing. My father was a “red-headed Irishman” and we often determined winners at our table by the person who yelled the loudest! It was the 70s, when spanking was an expected and accepted form of discipline- a message we very clearly understood. We fought with each other, ruined each other’s toys or belongings, but worked it out- SUCH an important skill to bring to adulthood.

My 2 sisters were dancers and singers, my 2 brothers were adventurers, farmers and tree-house builders. There were several different tree forts we built together and played in along with neighborhood kids. My favorite outdoor adventures centered around play on this groping of large rocks that we called “the mountains” when we were kids. One rock was probably about 4′ high by 10′ long, with a hollow indentation at one end- we called this one “Moby Dick”. The other grouping was much larger, with 6-8′ facades we climbed, scaled or slid down, picking our snacks from the blueberry bushes that grew atop them. Looking back, the good far out-weighed the challenges or turmoil. We have grown into a close-knit group of adults, with frequent family contact and regular family get-togethers.

These good memories are probably what has led me to adopt a sibling group out of foster care. I have always wanted to adopt. I remember seeing Wednesday’s Child on the Boston news each week and thinking these children needed and deserved a home. I knew young that my family would include children adopted from the US Foster Care system. I had no idea these children would have the current cluster of needs and strengths that I deal with on a daily basis, I only knew that my house would be filled with children and I would parent them to the best of my ability.

Before I expanded my family through adoption, I completed education and special education degrees. I worked for private agencies, public schools, research projects and with state education departments, designing and providing training and technical assistance. I supported families, school teams and service providers in their quest to provide better services for children along the autism spectrum. It became my career, my true love. But still I wished for more children, brothers and sisters for my eldest to have in his life into late adult-hood, after I pass through crotchety old womanhood into the next place. When I left a research position as they re-structured their grant, I decided it was time.

When my children joined my family, they brought with them challenges, trials, but also strengths. It has been a struggle at times to provide the balance needed to keep my eldest supported in his changing needs, while managing the needs of many wee ones.  It has been worth it. I hope that my children will have the opportunity to learn the many lessons I was taught living in a large family. I wish them all the success, friendship, strength and happiness that I have had the fortune to have experienced. Life as a family continues to be a challenge but I hope their hindsight provides them a view of the same map my parents gave me- Thanks, Mom & Dad!

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