The Brentnall family sent us this uplifting story about how they coped whilst shielding with their vulnerable son, the challenges they faced with everyday needs, from buying food to getting to grips with PPE, and how grateful they are to the friends, family, carers and even complete strangers who have gone out of their way to help them through this difficult time.
It’s not until we started to write that we realised just how many happy stories we have to show from our time in shielding...
We’ve been members of the MPS Society for over 10 years, we were advised during Jacob's diagnosis appointment to make contact for advice and support and through this journey, the Society, in particular Steve and the advocacy team, have carried us through some very tough times. We don’t think anything could’ve prepared us, for what was to come, the challenges we’ve faced, the heartache like nothing else, but the MPS Society has been a constant through these turbulent times.
We’ve also come to make some incredible friends both at the MPS Society and through the wider MPS family.
In recent months the world has become an even scarier place for us all. We, as a family, decided ahead of the lockdown that we felt very exposed to the Coronavirus. As various professionals from a number of departments involved in Jacob's care began to work from home we questioned whether it was right that our incredibly vulnerable children were still in school and a week before the government's announcement we decided to withdraw all three of our boys; Jacob from special school and his siblings from mainstream. Even then we worried if we were doing the right thing, now we know we were!
Trying to keep up soon took it toll!
We faced the first few days with a steely determination that we could home school successfully and actually by the time lockdown came into force we felt we’d had a head start. We had a good routine, both schools had been very understanding and as we had called ahead to inform Jacob's siblings' school what was happening, they had set work for both his brothers. We maintained snack time, lunch time, play time, all of Jacob's physio, sensory play, meals etc. We’d say we flew with this for the first week, however, after the realisation that we ourselves had to swot the night before - even to be able to help our 4-year-old with his phonics the next day - a whole new anxiety came over us coupled with the reality of 3 hour online supermarket queues just to attempt to book a slot and the minefield that was PPE, which changed daily. Trying to keep up soon took it toll!
We know every family, MPS or not have faced the same struggles and anxiety but we wanted to highlight some of the amazing people that have helped support us through our COVID journey so far.
We realised the manager had done the shop, packed it and delivered it personally to help us out!
We’ve mentioned food shopping...a week before lockdown was announced, we had been online and booked the first available home delivery slot which was three and a half weeks away. We’d listened to government advice and not stock piled and suddenly felt very naive, our fresh supplies were depleted within days and after trying every supermarket (even getting up frequently at the likes of 2am) we couldn’t get anything delivered any quicker than our existing slot. A well-known supermarket seemed to be ahead of the game asking people to confirm they were vulnerable before taking you to the delivery booking page, yet time again all we got was “no availability”. Every other supermarket had changed its answerphone message to say that they weren’t taking calls but I got through to a small store directly who were happy to help as they couldn’t understand why it was showing no delivery available as they’d not received any orders, they asked us to email what we needed. We knew we wouldn’t get everything and assured him whatever he could manage would be a great help. We rejoiced to see the shopping on the doorstep, it was only at this point we realised the manager had done the shop, packed it and delivered it personally to help us out!
Quite quickly a team of vetted local volunteers was set up and assisted with collecting hospital prescriptions and taking it to the pharmacy and then waiting for it to be dispensed before bringing it back! We got a weekly call to see if there was any shopping we required and had a named helper to call if there were any further medical items we needed collecting and delivering.
We had our hospice looking out for us, checking in on us, making sure we were OK. We had more activity ideas than we could manage with the children, but it was so nice that people were sending us ideas. Our family liaison nurse at the hospice even offered to do a food shop for us when she heard we’d not had anything!
Our local consultants and teams linked to Jacob have been a great source of support. We were very conscious not to pester them unnecessarily, knowing how busy they would be, but having a child with such complexities we knew we wouldn’t make it 12 weeks without needing something and sure enough not even a week in and Jacob had an infection. We were able to send photographs through to the hospital and via the volunteers got a prescription sent, dispensed and delivered rather quickly without having to go anywhere. Ongoing treatment has been slightly trickier as everyone balances need vs risk and understandably so, but those that have had reason to come into our home have worn the full PPE to visit. No one has come out unnecessarily and we’ve found a new way of maintaining appointments safely.
Our local teams have been very proactive and made sure we have what we need in our home to try and keep Jacob out of hospital. They have also supported us to pre-empt a number of scenarios, getting meds and equipment here just in case. We’re sure you've all been subjected to medicine, food and equipment shortages, but where this has happened for us, departments have stayed in touch regularly and resolved the issue as quickly as possible, even if it has meant sending just a week's supply at a time.
We feel the biggest decision we’ve faced throughout the whole situation has been how to manage our care support.
We feel the biggest decision we’ve faced throughout the whole situation has been how to manage our care support. We took advice early on from many professionals and it essentially boiled down to us to make the decision that felt right for us. If we went without care we knew we could be facing weeks, potentially months, 24 hours a day, 7 days a week with no idea how long for, we also knew of the risks if we continued to have support coming into our home, something which we never thought would be a concern, having worked so hard to get the help, we never thought we’d be too afraid to let it into our home!
Jacob now requires a high level of 2:1 and 1:1 support 24 hours a day. Looking back the decision to keep the care coming was the right one for us, although, for a number of factors the level of care has fluctuated over the weeks. It felt like a minefield navigating ourselves through PPE advice, donning and doffing protocols, which changed daily at one point, did we need FFP3 or FFP2 masks, if we needed FFP3 we need fit testing to ensure we were safe, then there was a shortage on training kits, so at first it was surgical masks then these were replaced as unsuitable and IIR were issued...who knew there were so many different masks!!
It felt difficult demanding such new and high levels of infection control, without offending anyone it became apparent that extraordinary measures needed to be adopted and fast. We had many discussions about what was right and wrong, who was eating where, what needed deep cleaning and how often, what could be brought into the house and what should be left outside and we felt awful having to keep reminding Jacob’s carers of the strict protocols they should be following.
As the widely reported shortages of PPE became apparent we re-worked our staffing to make the equipment go further asking them to work fewer but longer shifts to make sure our stocks lasted longer. Our care company supported us with this as the advice changed frequently.
One nurse even temporarily moved home to ensure she had as little contact as possible with anyone else who could pose a risk
So many people have pulled together with Jacob and our family's best interests at heart. One nurse even temporarily moved home to ensure she had as little contact as possible with anyone else who could pose a risk, in order to keep helping us. If we get sleep we know we can manage better the next day and for this we will forever feel grateful to her, her family and her management team for their support.
Thirteen weeks in and things are more settled. Our doctors surgery and pharmacy have an online system for all our meds, the pharmacy have increased their deliveries and we now realise just how much of our life we were spending there!
After the government released their list of clinically extremely vulnerable people to the supermarkets, we were able to book a weekly delivery every Friday until 4 October. We hope they, and the staff who are keeping families like us fed, know how much they are appreciated.
The routine that went out of the window early on almost resembles a routine again and the anxiety and stress about doing home schooling right have been quashed by the regular messages we get from the teachers reminding us that the important thing is that we’re spending time together. It’s funny that even just by being reminded of that it makes schooling run smoother!
Jacob likes to laugh at his brothers doing their daily PE session and thinks us wearing PPE is hilarious!
Jacob's two brothers haven’t even questioned why we can’t go for our daily exercise, they have simply accepted it. Our middle boy, Samuel, has been very grown up about his work, he has done everything asked of him, on time and to the best of his ability. He has supported us caring for Jacob, played with his younger brother Max, made us a cuppa at just the right time and grown up so much in the last two months. Our youngest has kept us amused with his wit informing us that we “can’t be teachers as we don’t do it right“, and that he “doesn’t even get this much work at school”. He’s always been caring towards Jake, but he’s grown in his approach to him and has enjoyed reading to him, playing catch with him and he loves playing with Jacob's light table with him. Jacob likes to laugh at his brothers doing their daily PE session and thinks us wearing PPE is hilarious!
We’ve always been a family that has tried not to let MPS stop us doing anything, and in this lovely weather we would normally be off somewhere together, maybe taking Jacob for a ride on his specially adapted wheelchair bike. Certainly, our annual trip to Devon won’t be happening, but we have found new ways of being together and enjoying each other. We’ve celebrated Diddy's 70th (that’s a name Jacob gave his Grandad back when he had some speech) by flying a homemade flag and painting our windows. We’ve celebrated most occasions with a homemade flag to be honest, including MPS Awareness Week and VE Day, and photos of the boys creating a rainbow flag have also made it onto the video of a local singer's version of Somewhere Over the Rainbow. Flying the flag feels like a way we can let everyone around us know we’re here and we’re thankful.
We have some incredible people around us, we’ve also had the support of strangers too, more so in these last two months
We have some incredible people around us, we’ve also had the support of strangers too, more so in these last two months. We know that this is our new normal, we sure hope it’s temporary but we are so grateful to those who are there for us and we can’t wait until we can be with our family and friends again!
The Brentnall family x
