What a beautiful summer at the end of a beautiful year from nomadics living our lives of choice. I feel like the luckiest person alive as Malcolm and I celebrate 46 years of marriage.
Pity about the weather! Depression after depression after depression this August 2024, but the right place for us to be is out on the water. Otherwise we’re not off the dock so where would the frisson, the challenge, and the excitement of sailing be?
Opportunism is one of our traits meaning this year with the digital gale warning sounding and an advisory to small craft as we left harbour, we grabbed the only weather window for weeks to sail from Cork to Malahide, Dublin on our wedding anniversary, so no fancy celebrations there, just a hand over of the watch in the wee hours as we ripped along in a 2.5kt tide adding to the force 7 excitement off the Arklow Bank. We fair screamed along! Not sure on the definition of insanity, but think it must have something to do with calculated risk!
With the recognition that every person is different we have had the incredible privilege of holidaying with both Jen and Anthony this summer. With Jen we were pretty structured, not least because she needed assurance ahead of time that she wouldn’t find herself on our yacht Sukama for the entire time she was with us which is far from her idea of a good time. But Anthony didn’t manage to think about it until 1 week ahead, firmed up his outbound travel plans 48 hours ahead, and his return time and travel only after several days with us when our time together had more perceived structure to it.
We have bit of a reputation for arriving ‘just in time’. So it was for the arrival of Jen and my sister, Auntie Merie where we arrived in Cork from Falmouth with one day to spare before they landed. With an itinerary based on ‘variety being the spice of life’ we’d already done the orchestrating and the provisioning to help things run smoothly and reduce pressure on all. With Jen there is no guesswork. It’s very easy to tell if she is happy or not. Thankfully the skill of Donna and her team meant that she arrived to meet Merie in Taunton on top of the world! Merie was a godsend as without her Jen wouldn’t have had that dedicated insightful support that can seemingly effortlessly pitch in with the right suggestion at the right time, including ‘let’s grab the dishes and go and wash up’ creating valuable space for all, along with special time for them to connect and strengthen their bond.
So for 10 days we played in a way to suit Jen, and give us all some holiday respite. It involved time with us and apart from us, accommodation from hotels to our floating home Sukama, to a horse drawn caravan, activities in town and country, seaside and mountains, Titanic museum in Cobh, picnicking in a hotel room whilst it rained cats and dogs outside, and Cork Pride where Jen loved dancing with Danny Zumba.
Onboard Sukama we had foul weather so we baked together making a yummy lasagne, and banana loaf (enhanced by gooeyness as the gas ran out before it was properly cooked) as well as a delicious lunch, all gluten free and dairy free of course! Jen loved joining in and making it happen, and always loves the whoosh of making sparkling water with the soda fountain. Even in gale force winds Jen shared that she’d ‘slept like a queen’ so we must have done something right!
More indifferent weather followed so games were the order of the day. Merie and I went kayaking bright and early before the strong winds kicked in (again), a lovely relaxing couple of hours being sisters without caring responsibilities for mother, father or Jen, enjoying time out together and with nature. This rare space meant a lot to both of us. But happening because of Jen and her support needs. The rest of the day we walked, talked, Jen played Zeneca (her flute), and swegway games on the pontoon ‘I loved the way you and Dad supported me’. I loved that she gave it a go having never even seen one before. After 2 successful days on Sukama albeit on the dock, we celebrated with a first class meal at the locally renowned Bosun restaurant where Jen spurned the locally caught delicacies on offer, but had ‘awesome food’; prawn cocktail, filet steak and melon sorbet.
Followed finally by 3 days with a horse drawn caravan where we camped and Jen had the caravan to call her own, we spent our days with Paddy (heavy horse), Ringo and Lily (donkeys) in the byways and forests of Co. Wicklow whilst the wind continued to howl. Eventually the sun shone on our last day, and Malcolm barbequed but we were still wrapped up in many layers.
Jen and Merie finished as they began. After a celebratory ice cream/sorbet, we left them in elegant style at a hotel in Malahide ready to catch their flight back to Bristol and on to Taunton before Jen hopped on the train back up to Chorley.
For Jen, apparently the best thing of all about her time away was the food. For us it was spending time with a vibrant happy individual who whilst having significant underlying support needs, didn’t lean on us, being accustomed as she is to living life as an engaged citizen of the world happy in her own skin.
There are innumerable people behind the scenes in Jen’s life. Each plays their part in a way that works for them and for Jen. I believe her care team is second to none, but others afford her flute support, advocacy, mental, physical and psychological support, skilled perceptive friendship, along with the undeniable joy, happiness and euphoria contributed by her dancing family.
“I give my fellow dancers their lives in dance, and they give me mine”. Jen Blackwell
This is a two way street, a win win situation. All contribute in their own way along with numerous friends on the periphery from times gone by, with yet others in the wings, some of whom I’ve yet to meet personally but would feel honoured to do so such as Brian, Dennis, Olive. All are happy to step up when asked or volunteer when they see the time is right for them.
Dr (h.c.) Jen BEM, you bring us indescribable joy and pride as you journey through life waking up those who slumber who need that wake-up call that every person matters and can contribute.
Jen is a citizen. She experiences equity in her life. She feels valued, respected, wanted. She loves being in demand to lead, contribute, and inspire others. And loves having this verified by winning awards and being honoured with accolades acknowledging her as an equal human being.
The charity DanceSyndrome founded by and with Jen because of her needs is also no stranger to winning multiple awards. Winning awards and acquiring letters and titles makes people sit up and take notice. Malcolm and I are naturally wired to being driven by the art of the possible, but being gifted with Jen for a daughter 42 years ago has created unimaginably wonderful opportunities to paint a new canvas of optimism and positivity.