The tapestry of the life of a medically complex family

Archive for August, 2012

“Parenting” as a Team Sport

Parenting, in any situation, is a tough gig. Parents work hard to create the environment they want to nurture their child to becoming a thriving, capable adult. This environment includes encouragement, love & guidance or discipline and parents work hard to balance the structure to meet the needs of both (all) parents involved in raising their child.
In my home there is only one parent- and you might THINK that makes things easier- except for a few things… Because my kids have complex medical needs, they have nursing care provided at home & in the community during many of their activities. You know how Dad may have a rule that’s SUPER important to him & he may feel like he has clearly defined that rule- until Mom is out with him at a cookout & lil Johnny is flat out performing “the act” while Mom laughs about it with her friends?? (or vice versa) Well, envision THAT times 5. Why 5? That is the number of people, in addition to me, who directly supervise my kids on a weekly basis.
I agree that what the nurses do for my kids is not “parenting” them, but they DO “toe in” to that “pool” I’ve crafted which is supposed to bathe my kids in enthusiasm, kindness, grit & motivation. Consistency is just not a word which describes this life.

A First Glimpse Undersea

Our family is so thankful to Massachusetts Eye & Ear Infirmary- yes, for their provision of life-saving medical intervention for my twins, as well as my youngest, but also for their continued caring & support to our family beyond the walls of their hospital. When I wanted to take my kids to the New England Aquarium, cost has always been prohibitive for a single Mom headed household of 5. I asked the hospital if they ever got passes for their patients and they found a way to help my children to experience the sights & sounds of their first adventure with undersea creatures. It was a HUGE hit with my children & a gift for me that we could go. Thanks again MEEI.

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Photo Shoot

Even with our limited personal resources, our family has been thrilled about the opportunity to give back to the hospitals that give my kids such wonderful medical care. We went to a commercial shoot for Boston Children’s Hospital, where my youngest is featured at the close if the TV commercial, as well as appearing in the Boston Globe. It has been thrilling for her.

About 10 days ago, we were able to participate in a photo shoot on the Boston Common for Massachusetts Eye & Ear Infirmary. This hospital performed the life-saving tracheostomy placement for my older daughter & have provided skilled ongoing care & airway/ neck surgeries for each of my 3 youngest. Here is a glimpse at the fun we had that day. We can’t wait to get the pro shots!

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