Mother of Faith managing parenting and disability.

The past few months have been tumultuous for our family. Our precious little boy and Trisomy 13 hero JamJam was admitted to hospital on Thursday 16th September with Covid 19, Aspiration pneumonia and Adeno virus.

JamJam was admitted to Evelina Children’s Hospital Paediatric Intensive Care Unit. He had an oxygen requirement of 15 litres and needed the support of a ventilator. The doctors initial decision was to intubateJamJam which we were not happy about and so we discussed this together and opted for BiPAP ventilation, this gave JamJam the full breathing support needed; without the need for an invasive procedure.  

He appeared to be fighting the virus and bacterial infection very well with IV antibiotics and his breathing appeared to have settled after 6 days in intensive care. JamJam was then taken up to the High Dependency Unit (HDU) where he unfortunately started to decline after a few days. 

Again, the conversation about intubation took place, fortunately; due to fervent and powerful prayer from around the world, JamJam made a miraculous turn around. Today, almost 7 weeks later; JamJam is still in hospital but ready to go home. 

JamJam is a strong and inspirational boy. At 3-years old he has survived a life-limiting diagnosis, multiple operations, illnesses where professionals, family and friends thought this could be it, JamJam may not survive. JamJam has shown us the power of God time and time again. He has increased my faith and led others to believe in the power of God. When others thought he’d fail, JamJam said ‘I Can!’  (that’s a line from his book JamJam Can!) Sometimes I sit back in awe, sometimes I just laugh at seeing the impossible made possible. Our Trisomy 13 journey has continued to be one of faith and hope. 

Unfortunately, due to the current nationwide nursing shortage, JamJam’s home care package has fallen apart and although he is well enough to go home, we don’t have the right support in place for him to return home. Sadly, this is a situation experienced by many families who are reliant on carers or nurses to support their complex needs child. 

Most nurses and carers are with agencies, if a child ends up unwell in hospital; the nurses need to make a living, so they’ll move to another package to sustain themselves. This of course means that once families are ready for their child to be discharged, their package has fallen apart. This was never an issue previously, but with new rules and cutbacks, our home nurses are no longer able to attend hospital with their clients. JamJam’s nurses had always gone into hospital before, that meant they were still being paid, the hospital was never short staffed and JamJam received the care he needed. Sadly, there are significant inconsistencies because depending on your local authority, some carers and nurses can attend hospital. Ours can’t.

I am not complaining about the nurses at all, they all do a phenomenal job. Our home team is exceptional just like the hospital nurses. It’s just very frustrating when the system designed to support families works against us in the most critical of times. We need change and a review of the current guidance. 

That said, JamJam has continued to show the world that he Can! 

If you don’t already know about our fabulous new book JamJam Can! Please do check it out on the Amazon website or email info@mumoffaith.com for your personally signed copy.

If you are as impressed by the illustrations as I am, then also check out hello.Zeink on Instagram or her website. Zenovia Grant is a talented and God blessed creative who has produced fantastic cards, prints, children's books and more.

If you want updates on JamJam please do follow our Instagram Page @mum.of.faith for information about JamJam Can! Please follow @JamJam.Can