The tapestry of the life of a medically complex family

Fancy Friday

Family is about sharing traditions. Parents bring traditions with them from their childhood home, like Christmas stockings, when Santa arrives & the way birthdays are celebrated. As families change, become larger, spend more time in their own nucleus, traditions uniquely their own develop from day-to-day activities or new needs of their nuclear family members.

When I was a parent “the first time”, traditions included Christmas stockings, an empty tree base until Santa came overnight, celebrations of Hanukkah & Shabbat – singing Hebrew blessings at candle light and enjoying dinner & playtime with only these candles to brighten our winter evenings. Saturday morning breakfast out at a local diner- even as we moved across the country and back- and batting cages, Little League, Cub Scouts… riding bikes together. Sometimes we read Harry Potter in the evenings, sitting together on the couch and taking turns reading the paragraphs or pages to each other. My oldest and I share a love of literature and adventure stories which includes sharing books back and forth over MANY of the last 12 years he has been a reader.

When the twins arrived, with oxygen tanks and open airways to their lungs, traditions changed to more home-based activities- with fewer open flames! We have the occasional Shabbat inspired dinner, but with nursing on Friday and so many feeding issues, well, one could see how that might no longer apply as a time to celebrate. We have changed family traditions as the grouping of people changes, or as we get interesting hand-me-downs!

Even before use of their upper airway for sound, our house has followed the score of what I call “My Life as a Musical”. We have wake-up songs I sing to the kids, songs for washing hands, name songs unique to each kid in the house, songs we sing to comfort or rev up, the complete score of the “Wizard of Oz” musical my sister was in as a child, selections from other musicals. My favorites are our bedtime songs including “It’s the most wonderful time of the day” and the “Love you Forever” song I sing each and every night to each kid individually- right before they sing it back to me. Without our good night musical transitions, my kids are restless, sometimes agitated, and may stay awake hours trying to settle in. Even when I go to the hospital for an overnight with one, I have to call home and, regardless of audience (e.g., docs, nurses), sing to the other(s) who are readying for bed there.

All scheduled nebs are done together as a group, twins in cribs, youngest sitting upright across from them. I dress the twins in similar colors, and include Youngest in the grouping with either a similar “style” (e.g., her signature green Hanna dress when they wear blue & yellow), or in a similar color pallet when we go out. It’s a trick used by other families to keep track of their kids in public places, I think it emphasizes the twins identity as such, without making them look completely the same, and differentiates my youngest as “belonging” but not being one of the “twin unit”- altho, believe me, “are they triplets?” is as popular as the ever inappropriate “where did they come from/ you get them?”. Anyway, sometimes similar colors come from my choosing the outfits in the same mood, just like when you go to your own closet!

The more unusual of our traditions is the one we celebrate many Fridays. A couple years ago, the kids got “Hand-me-down” clothing from their biological older sisters and cousins. Their biological family are “dress up for church” people and the girls inherited these GORGEOUS tulle and velvet or embroidered dresses that are MUCH too fancy for anything we could ever dream of doing as a family in our quest to avoid germ exposure and stay healthy! SO, in order to give my girls access to these beautiful dresses and use the hand-me-downs so lovingly cared for before we got them, we began using Friday as a “reason” to dress up.

We call these days “Fancy Friday” and the girls wear extravagant-looking dresses with tights while Trachboy dons dressier button-downs and sometimes white pants. We go through our day as we would otherwise- heading to doc appts., running errands, riding bikes along the Riverwalk, playing on the deck or slide, or staying in and hunkering down if there’s not reason to go out and the weather is not agreeable to outdoor play. It is one of the more unique traditions that gets lots of comments and raised eyebrows- pink tulle tiers below a black velvet bodice are a bit dressy for an airway appt… The kids love it. It’s quirky and something that defines our family unit as uniquely US. What are traditions unique to your family?

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Comments on: "Fancy Friday" (1)

  1. We sing too – sing about everything! The wake up songs, getting dressed songs, eating breakfast songs, etc etc.

    I also talk constantly to my son. He can’t see and is completely nonverbal, so I feel like I need to tell him about what’s going on and I try to fill his days with as much language as possible. We often get funny looks from people when we’re in public – that “why are you talking so much” look – but, oh well!

    Another tradition that isn’t unique to us, but is still lovely — pancake Saturdays!

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