Hello, a very warm welcome to you all my name is Mohammed, I’m a British-born Asian Muslim, a very proud father/carer to my wonderful bright and very chatty young adult son Naveed, who has an array of complex health needs. This is my letter to other Muslim parents caring for a seriously ill child.
Ramadan and Eid
As we approach Eid, I wanted to remind other families to let your child be involved in religious and non-religious days. On Eid my son gets dressed in colorful traditional prayer suits (Salwar Kameez), and will later change into a tie, suit and jeans. It’s so important to us as a family that we allow him to live his life to the fullest.
It is every parent’s delight to see their child being loved, praised, smiling, and enjoying life … as EID is no excuse to stay in but to get out, and celebrate as any other family would do across the whole world.
Having spent many Eid’s in various hospitals, we always came home and celebrate Eid then. We never miss out!
Once, when he was nil by mouth, we made the celebrations at Eid easier for him by having video calls with family rather than meeting in person for food. We take lots of videos and photos together on these special days. They are special because they are, and special because we make them so. They are the best of days.
My religion and caring for a child with complex needs
I recommend talking openly about your challenges as a parent carer, to a child or young adult.
With my religion at close hand, I have found in Islam there is always something you can do to observe your faith even in the most difficult circumstances. Lean on your local faith leaders, they can help you to work many things out.
Perhaps it could be that when you are in hospital with your child you could adapt your prayers or ask for your Imam to visit your family in hospital to help you through those times.
Ask your medical team in hospital, and they will lead you to the quiet room, where you can find answers for most of your questions in how to contact a faith leader.
It’s so important, if possible, to allow your child to attend various events and be part of normal living. This will not only benefit them in becoming more confident and engaging and will enhance development stimulation, it will also allow you huge opportunities in seeing your child/young adult in different circumstances, precious memories to keep safe.
For our son, this has has allowed him to have experiences, memories, adventures of life he could have never imagined, like attending weddings, religious events, special family gatherings and other special events with family and friends. We will always include our son.
We parents make things work; we make it happen for our loved ones – so why put a few health conditions in the way of living as much normal life as anybody else would want to?Mo
Prioritise your child’s care when in public and don’t be embarrassed if you need to do things like suctioning or tracheostomy care – work together as a family to make sure your child/young adult gets the care they normally would at home. Ask a close member of the pubic or friends if you need help.
My very best wishes to you,
Mo & family.