My name is Rebecca Pender, I live in Glasgow and I want to introduce you to my family and I and tell you a little bit of our journey and why we are so passionate about bringing change.
I wear many, many hats in my day to day life. I work full time as well as writing, advocating, raising awareness for rare genetic conditions, with a side of inclusion activism thrown in for good measure.
I’m also a bit of a social media addict. 95% of the time though, my favourite and most treasured hat I wear is being Mum to my three beautiful daughters, Hannah 5, Molly 3 and Daisy 1. The 5% it’s not my favourite is because well, to be honest, I have three children under 6
The reason I do what I do, the person who gives me the drive and determination to change the narrative is my eldest Daughter Hannah who is almost 6 years old.
She is a daughter, a sister, a granddaughter and Nana’s Hannah. She is a cousin, a friend, a student and a teacher. She is a bringer of light in what sometimes seems like quite a dark world. She was conceived in our hearts for 5 long years before she was actually conceived. She is an actress, a musician and singer, a selfie queen, a snuggle monster and a wind-up merchant.
She loves music and Curious George, she loves school and friends and dancing, handbags and dressing up and her favourite past time is seeing how far she can wind up her little sister. She loves people and being included. She knows when she has been left out. She loves food but especially chocolate and gravy. She teaches unconditional love, patience, gratitude, resilience and strength. She also happens to have PMLD (Profound and Multiple Learning Disabilities).
Hannah’s primary DX is Inv Dup Del 8p, a rare genetic condition with only 65 known affected worldwide. She also lives with a severe learning disability, Epilepsy and complex arachnoid cysts in her pineal gland. She is non-verbal although EXTREMELY vocal, doubly incontinent, hypermobile and hypotonic. She has seizures which go in to Status and become life threatening in the blink of an eye.
But first and foremost, she is Hannah.
We no longer start conversations in a deficit lead way unless it is absolutely necessary, like a medical emergency
or the dreaded DLA renewal which is currently an annual affair.
Can you hear me?
I want to talk to you all about “The Power of The Parent Voice” and how important it is in the context of in Person Centred and Collaborative Healthcare, and co-production. In Hannah’s case I am her voice as she doesn’t have one.
It’s a difficult thing, to admit to yourself that you think there is something wrong with your child. It’s harder again to say that statement out loud to your loved ones or health professionals. It becomes a battlefield when those professionals repeatedly dismiss your concerns.
It took strength I didn’t know I possessed to persevere for 18 months in the face of accusations of Munchausen’s by proxy and statements such as
“I can assure you Mrs Pender, there is categorically nothing wrong your child, she is just lazy” and “you’re a paranoid, sleep deprived first time mum”
Are they right? Am I losing my mind?
I started to question my own sanity, whether I was crazy and whether my daughter inability to crawl, walk or babble by 18 months was simply down to bad parenting or was something else really amiss. My heart and my gut knew differently and so I soldiered on.
We wiped the slate and changed our medical practice and our health visitor. I invited the new health visitor to our house to see my daughter and I let it all out. Then came those three words I will never forget.
“I believe you”
I finally had an ally. Blood tests were ordered to rule out genetic causes in the first instance. And so, we waited.
Picture a dark wet November evening, we were sitting in the chiropractor’s office having just spent another weekly appointment trying desperately to help my girl with her tone and strength (at vast personal expense) when the phone rang. It was her new paediatrician. She mentioned the blood tests and how the Microarray picked up small variants on Chromosomes and most of the time these were benign, didn’t mean anything however Hannah’s findings were significant.
I stood there and let the tears fall. A mixture of heartbreak that my daughter did have something wrong with her and it was confirmed my child was disabled, and of relief that my daughter did have something wrong with her. I felt vindicated, I wasn’t crazy, paranoid, delusional, though I was sleep deprived and I still am. I wasn’t projecting and most importantly I was right and had advocated so strongly on her behalf and it paid off.
Follow Rebecca and Hannah here: