The tapestry of the life of a medically complex family

Archive for the ‘Community’ Category

Chasing

My kids are 6.5, 6.5 & 5.2 years old. They have never been to a parade. They have seen Macy’s parade on Thanksgiving & a bit of the one’s on New Year’s but have no real concept that everyday people actually go to & SEE these things in person. Having preemies that include twins with trachs, and a 5 year old with her own respiratory issues, fall & winter & early spring are times spent hunkering down away from germs, versus being out attending events. Group activities like parades or fairs never make the cut as “worth the risk” when thinking about my kids vulnerabilities.

As we began talking about Thanksgiving, my son remembered the Thanksgiving parade we have watched the last few years. (We are not a TV-watching family. TV is an ‘event’ in our home- so fairly memorable.) He asked if the parade was going to happen on Thanksgiving again- perseverative question cycles are a daily occurrence. I told him that it would be on and since that day about a week ago, he has checked in about 3 or 4 thousand times on the topic. (Thank you Autism)

I checked our town website and found out WE have a Veteran’s Day parade & that it was early Sunday afternoon. It happened to fall between all the multiple medical treatments that make up our life as a family with 3 complex medical kiddos, and it seemed reasonable to delay lunch to make it happen. He & his sister’s were excited to be going to see their first parade.

We drove downtown because my kids fatigue levels are way too high to make a half mile walk. By the time we parked, packed the stroller, got my 2 weakest kids buckled in, it was very near time for the parade to start. Altho it was just a short walk to the firehouse, it took us until 1:01p to get there. Yep. ONE MINUTE after the parade began. They saw the veteran’s on motorcycles and the fire engine that were the tail end of the parade. We tried to catch up- I put my other child on my shoulders so I could walk briskly while pushing the other 2. They saw the backs of our high school marching band…

Basically, my kids ALMOST saw their first parade this weekend.

But they enjoyed themselves anyway.

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A Second Helping

This weekend we got to go to pick apples again. It was a different event than the peaceful, leisurely outing of last year. Apparently, every weekend is a festival weekend at the apple farm. This weekend was also their community craft fair which made things EXTRA BUSY.

The highlights were the 3some enjoying their first “tractor ride” on a trailer pulled behind a red tractor – the DUSTIEST experience of my trached twins’ lives- & picking a GIANT bag of apples to bring home for making Gallettes and drying to eat for snacks. We will be needing to add some recipes to our repertoire in order to use all these up! Feel free to add some recipes in the comments- I can usually modify things to meet our grain-free diet. Enjoy our photos.

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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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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.

Learning to “Dance”

A friend writes beautiful, thoughtful blog posts as she navigates the world each day this side of nearly unspeakable loss. The other day’s post was written about 13 qualities of a spiritual life. I think my definition of “spiritual” is more about general connectedness to what is beyond ourselves, but her list of qualities got me thinking & responding.

The one that struck me most is:

INTIMACY: If you had an hour to live and could only make one phone call, who would you call, what would you say, and why are you waiting?   Stephen Levine

My only response to this: no one. I would call no one. I would wake all my kids, take out all their favorite foods, sweets for Trachgirl- & not make Trachboy eat. I would wake them & turn on music & dance with them, sing with them, and read to them – & jump on the furniture with them (an especially big dream for my Youngest). I would want to expire in their tired arms’ embraces, listening to their laughter, seeing their smiles. Them, all 4 together. That’s all.

Who would YOU connect with?

First trip Apple Picking

On Tuesday we had an appointment cancelled which opened up our day to pick apples and get our Halloween pumpkins. Enjoy the view!

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“Being” a Family: Our 1st RedSox Game

Some days in our family are completely caught up in the managing of medical care & health-related events. On June 1 2011, we changed the focus completely and journeyed out to enjoy a long-standing family tradition. For generations our family have followed the RedSox and finally the Fearsome Threesome was able to take in their first game at Fenway!

Before the game, we achieved parking magic thanks to some connections with the local police. As we entered the park, I became nostalgic, breathing deeply in the atmosphere of this monumental event for my family. I paused a moment, adjusting the suction bag, oxygen tank and preschooler, and took a second to remember the children who I brought with us in spirit. Being in this place brought them close to me again, renewed my resolve to enjoy whatever part of this event that we were able to attend, and brought tears near the surface at the enormity of this moment.

I am so very thankful my children were well enough to make the trip. I am thankful we had a nurse who could come with us and help out with monitoring the twins’ reaction to the heat. I am thankful to have experienced the RedSox game with all 4 of my children. Sitting there, looking over at the four of them living this experience, I realized that, regardless of future events, they will ALWAYS have this moment together- I will always have this moment. The RedSox were not able to overcome their opponent during this outing, but WE, family of 5 including 2 micro-preemies with trachs and a newly minted adult, overcame some truly remarkable opponents and lived this experience together.

Our family's first RedSox game at Fenway Park