With the world slowly opening up again, the Brentnall family are coming to terms with lockdown easing and normal life resuming. Here, they share an update about what lockdown has been like for them.
Where are they now?
When we wrote about our life in lockdown last year I don’t think anyone could’ve anticipated the year that would lie ahead of everyone. The world continues to be facing heartache and grief on an unimaginable scale.
Since we last wrote so many things have changed. We imagine our year has been like most other MPS families. As a shielding household, we had many tough decisions to make and in the end, our mechanism for coming to any decision was what was the right choice for us! We felt that ultimately any wrong decisions we made would be with us for life. It hasn’t been easy in any way, with every aspect of our lives affected, but we know we’ve done the very best we can and won’t look back with any regrets.
It hasn’t been easy in any way, with every aspect of our lives affected, but we know we’ve done the very best we can and won’t look back with any regrets.
On balance, this was the best thing to have done and speaking to other families everyone has done exactly what works for them. Local and national charitable services have continued to support us and adapted the way they deliver their valuable time, providing a lifeline to us.
The governments shopping delivery scheme has been extended and extended and is still in place reassuring us, we haven’t always had everything we’ve ordered but we’re thankful for what we have received and it’s kept us safe at home!
The professionals involved with Jacob have continued to support us via Zoom and Microsoft Teams. We’ve successfully had several consultation appointments and training sessions this way too.
Lockdown secret
We also kept a little lockdown secret that we initially joked about keeping for nine months, which turned out to be the reality! When the national lockdown hit we were 10 weeks pregnant and that journey in itself was surreal. We didn’t see anyone and other than telling immediate family via video, we broke the news with a photo of our newborn daughter in the autumn!
We broke the news with a photo of our newborn daughter in the autumn!
As we settled into life with a newborn the cases of Covid began to grow and before long we entered the top tier. Christmas was different but very sociable. We are very fortunate to be supported by some fantastic people and quite quickly had Christmas festivities throughout the week, we had something every weekend from mid-November and became experts at dressing one of us as a snowman using the precious toilet roll!!!
The winter has passed quickly, with very little care support available, the days passed in a blur. Jacobs condition has deteriorated significantly and with every change, there’s more to learn and a new routine to adopt. The positives of providing all the 24/7 care are also very rewarding, we are so in tune with Jacob and a lot of the issues we were facing before Covid have been pretty much eliminated. He has gained a healthy weight and his skin breakdowns barely happen as we are so on top of it. It’s incredibly hard work but we’re in control of him all day every day and the difference is clear to see.
We made enquiries about obtaining the vaccine ‘off licence’ for Jacob and were massively supported both in terms of it being agreed quickly and the physical logistics of having it safely.
Looking to the future
No one knows what the next few months hold, we certainly hope the vaccine will bring us the confidence to find our new normal. For us we’ll take a very gradual and cautious approach, carefully watching the scientific data and local figures closely. It’s going to take us a considerable time to adjust to the normal everyone is living now!
No one knows what the next few months hold, we certainly hope the vaccine will bring us the confidence to find our new normal.
As always our children are our world and helping them to deal with what we’re facing both Covid and non-Covid related remains our priority. Jacobs health needs have taken precedence over everything else in our lives, as a family unit we continue to do all we can together and make every moment count. We have a mural at home that means more now than ever before... “time is precious, waste it wisely”.
The Brentnall family x
Getting involved
The Brentnall's are actively involved with the MPS Society and have recently participated in our fundraising and awareness campaigns.
Sam and Max took part in our Captain Tom 100 challenge, during the bank holiday weekend from 30 April - 3 May. Sam did 100 burpees and Max did 100 skip-hoop-jumps on the trampoline. You can still sponsor the boys here.
In honour of Captain Tom 100 challenge, Jacob created 100 blue handprints to decorate a flag to celebrate our 'Wear it Blue' day during MPS Awareness Week which runs from 10 - 16 May. He will be flying the flag on our 'Wear it Blue' day on 14 May.
