I lost my youngest daughter to Cystic Fibrosis some years ago and have been struggling with her loss ever since, after she passed ,most people were asking her mother how she was,and no one seemed to be asking how i felt.she was my youngest child ( 6th of 6 ). I felt i was struggling with this alone, at times i felt like giving up and ending it all. for 22 years we cared for her every need day and night. Then she was gone,all that care and attention that we had given her seemed to be for nothing as we couldnt change the end result of her terrible illness. Although this illness requires a faulty gene from each parent i felt more guilty as her father i was supposed to look after her,not give her a death sentence. I realise i am not the only one in this situation its just at times it all seems so pointless. Thanks to all who read this.
Thank you for your honesty in writing about your feelings. I can only imagine the pain of losing a child because it is not something I have experienced (I joined this site having lost my parents), but being a mother I know how deep a parent’s love ican be and that we try to do everything for our children. It must have been so hard for you and your family to see your daughter suffer from Cystic Fibrosis. She was blessed to have parents who loved her so much and cared for her every need. All that care and attention you gave her must have made a huge difference in her life, so please don’t think it was all in vain because the illness was incurable. You and your wife did not know you carried the gene. I can understand that somehow you feel responsible, but I am sure that any doctor would tell you not to blame yourself.
How has the rest of your family coped? Are you able to talk about it together? It is sad that you had to struggle alone and that no one reached out to you. You did well to not give up.
I hope that other parents who have lost a child and have posted on here will reply to your post.
You may also find it useful to look at the website from the Compassionate Friends, a charity supporting parents who have lost a child of any age. There is a leaflet you can download and a private Facebook group, both specifically for fathers, This is the link: https://www.tcf.org.uk/ftb-grieving-parents/
Hi Jo64, my son took his siters death very badly,for 2 years he was too upset to even go to her grave,he ended up getting counselling as it upset him so much. You were right in saying that neither my wife or i knew we were carriers of CF. WE were totally shocked at her diagnosis as it took over 7 months to finally find out what was wrong with her,by this time major damage had already been done to her lungs which was irrereversable. We often talk about my daughter with the rest of our family i encourage anyone i know to talk about her as i believe this is a good thing, i know of some people who do not like totalk about deceased people,its entirely up to the individual whether they want to talk or not. Thanks for your reply i will check out that website that you linked,once again many thanks.