Caring for Connor Campaign Fighting #duchenne
Long and personal post alert ;) ...After our duchenne diagnosis we were offered to see a psychologist, we declined until about a year on and we asked if Connor could be seen for challenging behaviour. Well today, well over a year down the line we got to meet her.
We decided not to take Connor on this visit so everything could be discussed openly without him in ears reach. What a ride it was for 90 minutes, drudging through the past and going back to that very day where our world got torn apart and duchenne entered.
We hadn't long had Kye, found out our eldest little boy was wasting away literally, he would lose the ability to walk by age 10, lose most upper body abilities in his teenage years, that he wouldn't live much beyond 20 years old. Kye being given a 50/50 chance of having duchenne, mum more than likely had given it to her boys, the extended family worried for their small children and un born babies. Some family leaving us, maybe they didn't know how to cope. Driving round the cliff in Westgate to Birchington thinking we could just drive off there and end the grief. It was grief we were suffering, we were mourning the loss of Connor before he'd even gone and suppose we still do.
We discussed the points of how he doesn't get invited to friends houses to play, maybe he's not as socially out going as other children. Are other parents scared to have him incase something goes wrong. Does he know more inside than he let's on or tells us. How we see the future for us and him, having friends and family for support, being included or excluded from lots things because he can't physically do them or get in a building to do them. Generally our lives not turning out the way we visualised, the fact we will never ever be that 'normal family'. Plus loads more.
The campaign, of how and when it started. The positivity it brings us, that we are channeling our focus and helping a situation that really is out of our control. What our aims were, how we have exceeded our first expectations with donating money into clinical trials, having funds set aside for a power wheel chair for when we need it etc.
In those short 90 minutes we had smiles, a few laughs and plenty of tears. We've come away with the knowledge we are stronger than we could have ever known we would be. We are a strong united family of four, we've got a very strong and close family unit surrounding us, a new duchenne family, so many supporters that are behind us and made loads of new friends along the way.
Although we left with puffy eyes we came out a bit more positive and thinking the psychologist even thinks we've done pretty great so far.
Next time it'll be a family meet and more of a 1 to 1 chat with Connor to see how he's doing. What he thinks about everything of anything, his family and his poorly muscles. We just hope he's as content as he appears to us.
Thank you to everyone who surrounds us. Knowing everyone is behind us brings us up on the darkest days ♡ xxx