Category Archives: Family

Grief in Lockdown – 7Y2D COVID-19 Diaries Week 19

Lockdown hasn’t been easy anywhere around the world, but the last 10 weeks or so have been really challenging for our family. Mike’s Dad was diagnosed with multiple myeloma back in 2012 and has spent the last 8 years valiantly fighting against this disease. Sadly, last weekend that battle came to an end and a much-loved Dad, Father-in-Law and Grandpa passed away. Despite Mike travelling back to Canada just over a week ago, he is currently stuck in quarantine and didn’t manage to see his Dad in person before he died, although he has spent time nearly every day of the last 10 weeks speaking to both of his parents either on the phone or via video-call.

The grief that has hit G and M is reminisce of that from 2 years ago when my Uncle passed away, and the 3 of us still in the UK are pulling together to support each other as we work through a gamut of emotions alongside the added strain of Mike now being away from home until the beginning of September. They have many wonderful memories of the last 16  years and I’m so glad that they both were able to spend precious time with Grandpa despite the ocean between us.

Grandpa, you will be greatly missed, but we know you’re now resting easy after a long, well-fought battle and are no longer in any pain xxx

 

 

Family connections – 7Y2D COVID-19 Diaries Week 18

One of the changes that many people have experienced during last few months of lockdown has been more limited contact with their family members. Mike’s parents, brothers and their families are all in Canada and his usual contact with them can be sporadic at best, reliant on emails, FB messages and the occasional phone-call. Due to some changes in family circumstances in the last couple of months, Mike is now using both FaceTime and WhatsApp on an almost daily basis to stay in touch as well as get and give more regular updates from both sides of the pond.

G and M usually spend time with my Mum on a very regular basis be that after school or during the school holidays, and haven’t been able to do that since the middle of March. Instead we’ve replaced that time with regular phone-calls and weekly FaceTime chats on a Saturday so Mum can actually see how we’re all doing and we can compare current hairstyles, which always brings a smile. A couple of weeks ago we even managed a face-to-face meeting in our garden and fortunately the weather didn’t stop the happening, although it perhaps wasn’t as warm and sunny as we’d have liked.

Last week though, was a new venture for us. Following on from the success of our weekly quizzes, M proposed a family quiz and asked each member of the family to set a round of 10 questions on any subject they wanted. I added an additional round, pulled together all 8 rounds into a Powerpoint before hosting the quiz via Zoom. We covered a range of subjects from Star Wars to literature and from pop culture to facts and figures relating to our birthdays. It was a great way to spend an afternoon together, full of laughter and a few frustrated brows when obvious answers were missed. And, already a repeat performance has been requested, though I don’t quite know when it will happen!

Awareness in Lockdown – 7Y2D COVID-19 Diaries Week 9

This week has been a focus for raising awareness for 2 causes close to our hearts: National Eosinophil Awareness Week (NEAW) and Mental Health Awareness Week (MHAW). It somehow feels apt that these two go hand-in-hand this week as we have so often experienced first-hand how closely linked life with EGID is with the mental health well-being of all in our family. This year that is even more important as so many of us are struggling with the changes that the coronavirus lockdown has brought with it and none more so than the young people in our household.

National Eosinophil Awareness Week: We have been very active in raising awareness about eosinophilic diseases for a number of years, but decided to start taking a step back from that last year. Eosinophilic Colitis (EC) was the initial diagnosis that we received for M all those years ago from his consultant at GOSH, but in recent times, the diagnosis criteria for this condition have faltered and existing diagnoses have been actively questioned by many within the medical community. These days conditions such as mast cell activation syndrome (MCAS) have been bandied about in relation to M, but ultimately the root cause of his health problems still remains a mystery to us all. As I’ve said so many times, having a name to put to his health issues has helped us all, even when very little is known about it, and I continue to use both his original diagnosis of EC and the newer one of MCAS when filling in paperwork or talking about M with other people.

Despite our own uncertainty about whether EGID is the correct diagnosis for M or not, I will always continue to encourage and support the fundraising and awareness-raising efforts of organisations seeking to research and understand this family of conditions more. Lockdown maybe stopping us doing anything active to raise awareness this week as we have in the past, but it’s good to be able to do my bit even from within the constraints of my own home.

Mental Health Awareness Week: Mental health well-being has been a buzz word in our household for a number of years and never has that been more important than now as we see the impact of 9 weeks in lockdown on us all. I’m a happy introvert, who enjoys spending time in my own company and so, in many ways, lockdown life is suiting me quite well. Regular contact with my work colleagues through Zoom and conference calls, webinars and online catch-ups with other friends is keeping me in touch with the outside world, which is especially important at a time when my T1D is keeping me at home.

However, I see a greater effect on Mike and the children and I think a lot of that is due to the changes to their daily routines. I am still working 9-5 every weekday, albeit from home and more often 8-7, but the 3 of them are going through a very different experience to me. Mike was furloughed from his job as a chartered surveyor on 1 April and for someone who is very used to being out and about as he values or surveys properties every day, the restriction of staying at home has been difficult. He is also much more of a social bug than I am, so not having daily face-to-face time with anyone other than the children and me has also taken its toll. However, that being said, the online capability to chat to family and friends across the world is something he has definitely embraced, even taking part in his regular whiskey-tasting evening via Zoom the other night!

As for the children, well G and M are almost a perfect reflection of Mike and me. G is comfortable entertaining herself and being in her own company, whereas M thrives on spending time with his peers as well as being constantly active and mentally challenged by them. Both have found lockdown difficult and we have worked, and continue to work, hard together to find the best outlet for their emotions as well as effective ways to meet their social needs. Chatting on WhatsApp or connecting via the PS4 has been a good solution and both are also having tutoring sessions via Zoom or MS Teams every week. This connection with people from outside of the family has been key to giving them something that is a very faint semblance of what they’re used to experiencing daily. Keeping them in a routine has also been important as Mike and I are very conscious that their return to school in September, after the best part of 6 months home-schooling, will exhaust them physically, mentally and emotionally from the minute they step through the school doors, if not before.

The buzzword for MHAW has been Kindness and considering what random acts of kindness you can do for others has been much encouraged. However, I think it’s key to remember that, whilst showing kindness to others in all situations is important, so is showing kindness to ourselves. We truly are living through extraordinary times and we shouldn’t feel guilty if we are not coping as well as we perhaps believe we should. Be that by taking some time to do something we love to do as an individual – bubble bath anyone? – or spending time relaxing with our family or even reaching out to a friend because we just need to talk, being kind to ourselves will improve our own well-being, which is something we all need right now.

What does COVID-19 mean for you

I find myself in an odd position today. Torn between wanting to try and keep things as normal as possible with my blog posts about life as it is living with chronic illness; and the hard reality that is the current crisis with COVID-19. There is no question in my mind that COVID-19 is impacting all of us in a multitude of ways, so I thought I’d focus this post on what this virus means to us at 7Y2D HQ and how it is affecting each family member right now.

For the children, the biggest change has to be that they are both now home and won’t be at school for the foreseeable. Neither G or M are considered to be particularly high risk for the virus because of their age, but we know from personal experience that M is far more susceptible to catching bugs like this than his peers and his body can and will struggle to cope once he has it. His bout of Aussie ‘flu 2 years ago is too fresh in our memories to want to have to go through anything even vaguely similar again, so we are taking precautions and following the social distancing guidelines as recommended. I find myself once again so glad to live in the countryside and to have access to some beautiful and very quiet walks with little risk of encountering anyone else. We have ventured out both days over the past weekend to make sure we’re getting some much needed exercise and fresh air, and the children even practised a handful of their Stagecoach routines given their classes have all been cancelled.

School has been brilliant and the teachers are setting work to be done at home to make sure that pupils are not absent from all learning in the next few months. There were a few IT hiccups this morning as a large number of the 1300 students plus parents and teachers at school all attempted to access the online learning platform at the same time, but we got there in the end and I managed to print off some of the tasks set to make sure that M in particular has things to do in the coming weeks. His dyslexia centre is also setting up a system for online tutoring and so his 1 hour 1:1 tutoring sessions will restart after the Easter holidays, which is just brilliant.

The impact on G has been far greater. Her GCSEs have been cancelled and she has been told she has a guaranteed place at her school’s sixth form for September. She has also been told that she won’t be back at school until then. We’re really proud of G’s attitude to this as rather than sit back and relax over the coming months, she has instead determined to keep going with the comprehensive and individualised revision plan she was given by school just a couple of weeks ago and look to finish her learning that way. With more clarity still needed about exactly how her final GCSE grades will now be determined, I’ve encouraged her to keep going with the mock papers and practice questions and to submit them to her teachers, so that they have all the evidence they might need of the hard work she is continuing to put in each and every day.

G has also decided to learn BSL (British sign language) through an online course wonderfully being offered free of charge because of COVID-19 and has done her first lesson in that this morning. Learning sign language has been something she’s been interested in for a while and is an area she wishes to explore further as part of her A-level studies next year as she considers dance therapy and non-verbal communication as part of her possible future career plans. Not to be left out, and with a view to his yet-to-be-confirmed GCSE options, M has signed up for a 4-week online photography course which Mike has agreed to do alongside him. He received a digital camera for his birthday and we’re hoping this course, as well as the school enrichment week course he took last summer, will stand him in good stead for September.

My T1D has put me firmly in the ranks of those who are considered vulnerable and therefore at higher risk of both contracting the virus and complications arising from it. Diabetes is not currently on the list of those considered to be extremely vulnerable, which you can find here, and so the advice is to follow the social distancing guidelines, rather than to self-isolate. These days I work for a charity who provides social care and support to adults with learning disabilities, both in homes and in the community, which actually puts me into the key worker category as one of the back office workers needed to keep those services running. I am extremely fortunate therefore that my employer has been supportive of my own health requirements and has enabled me to work from home for not just the next 12 weeks, but for as long as considered necessary. Half of my team also fall into the category and so we are running the office on a skeleton staff basis and have been trialling meetings by both conference and video calls this morning.

Finally Mike, who is probably the easiest one of us all. He has no underlying health conditions that put him at higher risk, but he does have to be careful because of my and M’s chronic illnesses. He already works from home and has a home office set up with just about everything he needs. There will come a time when Mike’s workload will reduce significantly – it’s not quite there yet – as he is a building surveyor and the social distancing and self-isolation rules mean that people are less likely to want him and his colleagues to go into their homes. He is the most able to go out to the shops, although we already regularly shop online with Sainsburys, Ocado and our local food co-operative, so our shopping habits are unlikely to change much if at all, delivery slots permitting.

I hope that you are all finding a way to adapt and cope with this strange new world that is our current reality. I find myself waking each day and wondering about the very surreal situation we all now find ourselves in, not just in the UK but worldwide. This is an experience like no other and there is no doubt that life as we know it will never be the same again.

Stay safe, stay well, stay in touch – but most importantly, STAY AT HOME

14 years of wonderful chaos!

14 years ago today he arrived in our world in a whirlwind of absolute chaos; and, to be honest, we’ve spent most of the time since then embracing that chaos with him. I can’t remember a great deal about his arrival, both M and I were far too ill for me to even consider stockpiling memories to look back on in the years to come. Indeed, the first image I have of our premature son was from the polaroid photo that Mike eventually brought back from the NICU, a photo that I wish we still had, but have absolutely no idea what happened to it and I would guess it got lost in the chaotic few days that followed his birth.

14 years on and life with M is filled with what can only be described as wonderful chaos. He is growing into a kind-hearted, empathetic young man, who constantly surprises me with his deep thoughts and insightfulness at times, whilst filling many other moments with humour and frustration in equal parts.

Happy 14th birthday M – as your card said this morning, you are one of my favourite kids! Love you always xxx

A Night Out New York-style

I don’t think it’s possible to visit New York without experiencing something of its nightlife and we had 3 very different nights out during our stay.

Ice Hockey at the Prudential Center, New Jersey: Unsurprisingly, the first was an evening of ice hockey and the first time either G or M have been to a proper NHL game. As soon as our flights and hotel were booked,  Mike was on the lookout for who would be playing where over the Christmas period and as soon as the final schedule was released, big decisions had to be made. We were originally considering a New York Rangers game at Madison Square Garden, but the cost of the seats combined with what we considered to be limited viewing based on our previous visit to see the New York Knicks meant that it looked unlikely we would go.

In a moment of almost sheer desperation, Mike decided to widen his search to see whether the New Jersey Devils were playing at home during our visit and there he struck proverbial gold. Not only were they playing on the 27th, but much to Mike’s delight, they were up against his team, the Toronto Maple Leafs. Even though we were crossing state lines, the trip to the Prudential Center in Newark by PATH train was easy and took us almost directly to the door. The children cheered their way through their first hockey game with G wearing proudly the NJ Devils hoodie she bought beforehand, mostly in a bid to rile Mike. It was a great family evening out for all of us with G and M now fully indoctrinated into the love of the sport and the right final result being achieved on the night, if you are to believe Mike and M!

Rockettes Christmas Spectacular, Radio City Hall:  This is an experience like no other and one that I would heartily recommend time and time again. It was also the reason behind my Mum’s wish to be in New York during the Christmas period for her 70th birthday. For the uninitiated, the Rockettes are a dance troupe started in 1925 in St Louis, inspired by the British Tiller Girls of the same era. They are known for their iconic and incredible dance line and the impressive precision and impeccable timing of their dance routines. To watch 36 dancers perform routine after routine in absolute sync with each other is simply breathtaking and both G and M were totally absorbed from the moment the music started.

Their Christmas Spectacular is, quite simply, that. Spectacular; and utterly awe-inspiring in just how spectacular it is. Radio City Hall is an amazing venue and one that I would happily visit again and I would love to do a backstage tour there if the opportunity should come up in the future. There were some wonderful surprises in store as we watched, the most outrageous of which I won’t share, just in case you are ever lucky enough to visit yourself. Let me just say, that the nativity scenes were not quite what we had expected and definitely worth a watch! M loved the Santa Claus routine, whilst G was hard-pressed to pick her favourite, so amazed was she by their skills and dance moves.

Movie night at AMC Empire 25, 42nd Street: Christmas for the last few years has meant one thing when it comes to films and that has been our family visit to see the latest in the Star Wars saga. 2019 was no different and given the epic nature of this final film, it only seemed fitting to watch “The Rise of Skywalker” somewhere amazing and different. Our unplanned evening out did not disappoint and we lapped up the opulent luxury of the AMC Empire 25 on 42nd Street, just opposite our hotel. We are not a family who splashes out on the VIP seating in our local cinema, but even we know that that has nothing compared to our seats at this NYC cinema, which had the functionality to make them recline and to raise a foot rest so that we were truly comfortable for the duration of the film.

Our last foreign movie night out was during our last trip to Canada, when we went to see “Avengers: Infinity War”  at a wonderfully old-school cinema in downtown Toronto. The experience was just as magical, but so very different in just about every way imaginable. It was a fitting end to our busy few days in NYC and we left the cinema with 2 very happy youngsters.

Seeing the sights of NYC

When Mike and I visited New York nearly 3 years ago, we stayed in the fantastic Hotel Beacon on the Upper West Side just a couple of blocks from Central Park. We loved the location and the facilities and always thought that it could be a contender for if and when we ever visited with the children in tow. However, Mum was keen to stay closer to Times Square and so this trip saw us at the Westin Times Square instead. A great hotel on West 43rd street with the most amazing views from our 44th floor bedroom, but disappointing offerings when it came to allergy-friendly food. Fortunately, if there’s one thing you’re not short of in NYC, it’s restaurants and we found several within walking distance that were more than able to cater well for both G and M.

Our visit was planned to the nth-degree. With no input from the children except some less-than-subtle questioning about what they might like to see after G’s best friend visited NYC last summer, Mike and I had put together an itinerary that we thought would cover most of the must-sees in the city and it definitely kept us busy whilst we were there. My Mum has visited NYC a few times before and so didn’t necessarily want to do as much trekking around as we knew we would end up doing with G and M. I think we managed a good balance of the main highlights, leaving both us and the children enough to still see if we ever come back again and even managed to throw in some extra activities that we hadn’t done before.

The children were less than impressed with Mike’s yearning to see the inside of the Guggenheim museum on our first afternoon, especially after our lengthy wander across Central Park. I insisted that we took in both the Alice in Wonderland sculpture and the “Imagine” mosaic as we walked through and I think tiredness after our extremely early start was really kicking in by the time we made it to the Guggenheim. I only wish I’d been able to snap a photo of G’s face when I told her that we weren’t going round the museum exhibits, but simply going to stand in the main entrance whilst Mike looked up in awe and took several photos. She really was lost for words for a few minutes, though she quickly found her voice to comment on our 2 minute stop for a long time afterwards!

The Statue of Liberty, Empire State Building, 9/11 Memorial Museum, One World Observatory, Grand Central Station and the New York Library for M to see Winnie-the-Pooh, we “did” them all. We usually choose to take a sightseeing bus to do a city tour when we visit anywhere new, but, given the busy traffic in NYC, instead thousands of steps were walked each day and we ventured onto the subway whenever time and location required. Our days were absolutely jam-packed, but we managed to do everything we wanted without too much hassle. Our fears about the winter weather didn’t come to pass and we definitely didn’t need the oodles of thermal underwear I’d had packed “just in case”.

Fairytale of New York

This has been a big year for the 7Y2D household. Mum’s 70th, G’s 16th, my Aunt’s 65th and our 20th wedding anniversary have kept us busy over the last few months and the celebrations have been nearly endless since the middle of September, especially for my Mum. However, there was one more surprise to come for the children, which started with a wish from Mum, was then planned meticulously for almost a year and finally revealed to G and M on Christmas morning.

With the help of some carefully thought out and themed pressies and well-crafted clues as well as the odd stocking-stuffer here and there and my Mum’s Christmas tree that was decorated with predominantly NYC baubles, an incredulous G and excitable M eventually discovered that we were off for the surprise trip of a lifetime and heading to New York. Neither had an inkling it was even on the cards as they hadn’t questioned our decision to cook and eat our Christmas dinner on Christmas Eve – something that worked surprisingly well at reducing stress levels on Christmas morning itself and definitely something I’d want to consider doing again – or worried that the stack of pressies under the tree for them was considerably smaller than normal.

The plan was simple, though had taken hours of subterfuge to achieve. I spent most of December “checking and washing” the pile of winter and ski clothes stored in the attic to see what still fitted us all, something M eventually twigged was all due to our planned trip as we headed to Heathrow. I had slowly, but steadily removed items of warmer clothing from their wardrobes and drawers to take to New York and had, in fact, packed 3 sets of bags by the time December 22 was with us. 3 suitcases and 2 pieces of hand luggage for the flight as well as a small overnight bag were deposited at my Mum’s house one evening by Mike without the children realising and our boxes of Christmas pressies, food and bag of clothes strategically left in the hall and landing at home as evidence of what I’d been sorting out behind our closed bedroom door for hours.

On Christmas Day itself, once the presents had been opened, the secret revealed, questions answered and additional bits and pieces needed for our holiday sorted from the rest of the Christmas detritus, there was just enough time to share a family buffet-style spread, more in keeping with our Boxing Day meal than anything else. Mike, G, M and I set off from South Wales in the early afternoon, detoured via my Mum’s house to swap the Christmas packing for the holiday suitcases and eventually arrived at our hotel in Heathrow in the evening. We had little time to enjoy their beautiful Christmas decorations as we were more focused on packing the final items and getting an early night.

Our flight was at 9am on Boxing Day, so we had an early start (3.30am!) to reach the airport terminal and get ourselves checked in before heading to Heathrow’s T3 lounge to relax in peace before the flight itself. One of G’s Christmas pressies was a manicure before we flew, so she had just enough time to enjoy a GF/DF bacon sandwich and a bowl of cereal before hitting the lounge spa to have her nails done. G absolutely loves painting her nails, but this was her first manicure and she enjoyed being able to choose her colour – a pale mint green – though she wasn’t quite so certain about the soak and massage bit of it. And finally, after an extremely busy few times, it was time to board our plane and fly out to 5 days of adventure in NYC!