The tapestry of the life of a medically complex family

Archive for the ‘Family’ Category

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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Happy Happy Birthday #6

My twins celebrated their birthday today. They woke early and had a busy day of:

  • Ice cream for breakfast
  • Opening presents
  • Testing new toys
  • Playing outside
  • Gettting reading to “party”
  • Having pizza, cake & ice cream with FIVE of our wonderful Home Care nurses- including 2 who are no longer working here
  • Getting to bed late

Let’s hope they sleep in in the morning. Be well & goodnite.

Those I Love

It’s been hard to keep up with blog prompts for this month of blogging every day! Today they want to know who I love- well, I’ve already written so much about them I can’t imagine you’d be very surprised. My kids are the most wonderful people to ever happen to me.  🙂 My oldest  is a terrific emerging adult. He’s back in college and working his way into a routine with it. He still makes me smile whenever he Skypes his younger brother & sisters – chatting with them about nothing, the objects they can see in the room behind him or answering all their young sib questions.

The twins are doing wonderfully well. Health is still an area of challenge but I’m able to keep these loves of mine home with the help of some terrific home nurses. Growth is a slow & lengthy uphill battle, but they are happy & developing. Can’t wait for their sixth birthday in 2 weeks!

My youngest is a love all her own. She is compassionate & caring and my companion on all errand runs. She adds a level of noise and energy to the playroom. I love her laugh and smile. My kids warm my heart every day.

Blood is Not Always Thicker than Water

There are people the world over who believe the bonds that are most enduring are the bonds of birth: “Blood is thicker than water”. Within my immediate household, these words have been disproven again and again. 3 of my 4 children joined my family through adoption. My children are loving and close with each other in a way I always have hoped my children would be. My youngest 3 share biology but they all hold my son & my hearts- bonded as family, across bloodlines, across race. We are a real family.

A Parallel Life

My family has lived in New England for multiple generations. My Mom’s family was originally from New Jersey but even her sister moved to New England after her parents died. My Father’s family lived back and forth between a few of the neighboring states here, but always New England after their family arrived in the US during the Potato Famine.

Most of my family, including first cousins, live within 250 miles of Boston, MA. Of 12 first cousins, only 2 live outside this region. There are frequent family get-togethers & the children of my sisters & cousins know each other well from frequent connecting at these gatherings. Well, all children but mine.

Because of my children’s health challenges & susceptibility to illness, we rarely get together with my family members- even those who live 10 minutes away. My nieces and nephews attend schools and gymnastics classes and … birthday parties. [scandalous!] These outings are a part of childhood for most children the US over- but my kids catch everything [by “everything”: they caught Scarlet Fever after attending a RedSox game last June- yes, 2011, not 1906…]. To keep healthy, we bow out of every family gathering when one kid is sick- or ANY relative is ill or feels like an illness is coming on.

When my kids came home, I thought my family was ready to welcome them with open arms. We talked of sharing dinners, playing in back yards, walking along our local bike path… Then my kids seemed a whole lot sicker than my family had prepared for… There were more needs, more medical treatments, more emergency room visits and in-patient stays. One relative even hangs up when I call from the ER- treating each of our emergency trips as tho they are “attention-seeking” vacations. Sometimes you want to just nod & say: “Yeah. My kids are checking in to the Club Med floor here at Children’s…” I live a parallel life with my family- nearby, following along, but never quite in the same place.

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.