“Our lives had now changed completely. 24hrs in a day to fill, how do you do that?”
Julie & Arthur’s Story
Our story is different from most of the ones I’ve read as we had the honour and pleasure of our beloved son Matthew for 44yrs.
It began on the 25th October 1973: a rush into the world.
It wasn’t long before we were told he had heart problems, several holes and something called pulmonary stenosis which we didn’t understand.
He was transferred to Birmingham Children Hospital and spent a month there.
Test and sorts of things happening.
After a year of visits he had open heart surgery.
Everything was going well, loads more visits over the next two yrs, then another bombshell he had Leukaemia (something in me said this as I rang our Doctors)
Years of chemo/radiology followed, at one point when he was ready to come off treatment a biopsy was needed on his test I also (as leukaemia can hide there in boys)
This was done, and as he was slow developing the doctors in Birmingham decided to bring his test I also down. We had a phone call early on the morning after telling us to get there ASAP they thought his heart was giving problems, but he actually developed double new pneumonia and was put on life support for two weeks.
But Matthew showed the. What he was made of, pulled through and came home several weeks later. Many years followed with checkups, we were told that Matthew wouldn’t reached 5foot, or hold a job down. But I’m proud to say he was 5.2in and did enjoy his jobs. He even won student of the Year at Portland College in Mansfield.
He passed his NVQ in catering and worked in a local garden centre kitchen for several yrs. Life was good.
At 23yrs he underwent a second heart operation and although again a few scary times he pulled through.
He then started to want to go on holiday on his own, my biggest nightmare as he wasn’t good with money and trusted everyone. But All inclusive called and he did these holidays for a few yrs once or twice every yr.
He even ran the London Marathon 3 times raising over £11,000 for Children with Leukaemia
He then changed his working routine and started in our local supermarket, first packing bags for customers, then later on the fruit and veg counters. He loved it and the customers loved him.
Then in Sept 2015 he started with epilepsy ( later we discovered that the radio therapy to the brain had caused lesions) hospital again for a few weeks until meds were sorted.
Jan 2016 he became paralysed was taken into QMC in Nottingham and also City Hospital, undergoing intensive treatment to find out why, he had plasma transfusion in the hope this would help, all the while on a ventilator. We were there every day all day.
He was then taken to Kings Lodge in Derby in June 2016 for rehab as he was learning to walk and talk again. His goal was to walk out of the hospital, not be pushed in a chair. He came home on my birthday 24th Nov 2016. Every day we spent with him whilst he was in hospital and rehab.
He needed help at home lots of physio the house was adapted for his chair, and 2017 was looking good.
We had a year with him at home.
Then in March 2018 he developed pneumonia rushed to our local hospital, put on a ventilator again, but in my heart of hearts I knew he wouldn’t come home this time.
I so wanted him to come home, the hospital got a portable ventilator for him to have, to try to make this possible, but his heart and lungs just weren’t strong enough, he fought so hard to stay with us but it wasn’t to be.
On July 27th 2018 at 4 in the morning our beloved son passed away.
He had told me whilst he was in rehab what he wanted for his funeral service much to my grief. But his wishes were carried out.
Our lives had now changed completely 24hrs in a day to fill, how do you do that?
We miss him so so much but we were so lucky to have had all those good years with him.
I’m sorry it’s so long but it’s his story, Our wonderful beloved son Matthew.
#nationalbereavedparentsday2021 #achildofmine #keepingtheirmemoryalive #NBPD21 #acom