We are coming to the end of our coffees and, in Bettina’s case, hot chocolate. It is a Sunday morning and you can always find us in a café before the weekly shop. Joyce (my wife) is giving me serious eye contact which I am returning back to her. It feels like a face off, of the most serious kind; the type you would see at the end of a Clint Eastwood spaghetti western! At some point one of us will make the first move to link up with Bettina as we return to our car. Bettina stands up to leave and before Joyce or I can move, Jennifer, her big sister (and hero) glides in, and they walk out the door together both laughing at our reaction.

We don’t mind admitting that we compete for Bettina’s attention and affection. Since the moment she came into our lives, Bettina is the gift that keeps giving.

Bettina is an amazing woman who brings joy to everyone she meets. Spend a few moments with her and you will never forget the experience. Yes, she really is that awesome. To use a much used cliché she has ’been on a journey’ from childhood: unravelling carpets, stripping wall paper from my parents’ bedroom (after they had just wall papered!) to not being able to use verbal communication until she was 11 years old to someone who now shares her love unconditionally, has a wonderful sense of humour, can read and write and is able to communicate her needs (most of the time).

So why is Bettina the gift that keeps giving?

Bettina took her parents down a different path:

  • Joyce set up a support group which morphed into a Carers Centre for children with a disability and their carers; including a young carer’s project which has been running for over 12 years.
  • I retired from my first career in the Army and started a new career supporting people with a learning disability 23 years ago.
  • We didn’t move to another part of the country because everything Bettina needed was right here.

Bettina guides and influences my work:

  • Bettina is my bench mark and a reference point for supporting people. Would I accept that kind of support for Bettina? No? Then why would I accept it for other people with a learning disability?
  • The things I learned as a carer for Bettina I used when I first started supporting people with a learning disability and I still use those communication techniques and systems. Bettina is a good teacher.

Bettina brings discipline to our lives:

  • You need to keep your emotions in check when Bettina is in your presence as she is super sensitive to any change in tone or body language. Bettina does not cope well with raised voices and you should always wear a smile.
  • Bettina is a role model for discipline – she does things she needs to do even though you know she doesn’t feel like doing them.
  • Bettina does not have a sense of time when it comes to her parent’s age. Joyce and I truly believe that Bettina believes her parents will not age or change. In her eyes her parents should be super fit and young. (so I will keep running up hills and Joyce will continue to swim “like a machine”)
  • From the outset, supporting Bettina on a 24/7 basis has meant that as a family we have needed to work as a tight team in order to be effective and successful. Each of us has an individual role which comes with assumed responsibilities. You should see us all move into action when Joyce gives us the “5 minute warning” (to be ready to leave our house). We are a well-oiled machine.

Bettina improves the quality of my life every day:

  • Bettina has a calming influence on me – I first understood what mindfulness was about while spending time with her on an Essex beach one Saturday morning https://leadershipintheraw.org/2016/03/10/being-bettinas-dad-bettina-transforming-my-life-with-mindfulness/ I often observe Bettina- how she is at one and in tune with nature and then I try to be the same as.
  • After a long journey home and a tiring day it is easy to push things out of perspective, so the first thing I do when I get home is to go upstairs and knock on Bettina’s door: “Hello Dad come in” and she then tells me about how many books she has read, what she has done that day, what she has eaten and who she has met before I have had an opportunity to ask. All of sudden my world is balanced again and I feel a sense of happiness.
  • I understand more and more each day what is important in life and so I let the rest go https://leadershipintheraw.org/2019/02/07/do-what-is-important-and-let-the-rest-go/ if it wasn’t for Bettina I think I could easily allow work to consume me. Bettina depends on her family. So at 6pm (if I am not working away that day) I stop and sit down with her to watch YouTube videos – I am not sure who gets the most out of our time together!

I don’t think there has been a day in our lives since Bettina was born when Joyce and I have not said how lucky we are having Bettina as our daughter. (By the way we feel the same about Jennifer too – I could write a whole book about her kindness but she is too modest and humble to let me).

It’s the weekend tomorrow and we will be once again having coffee together. All week I have been in secret training, ready to move before Joyce and Jennifer, and link up with Bettina the moment she finishes her hot chocolate. I will let you know how I get on!

The “gift that keeps on giving” is meant to continually invoke the feelings people get when they receive a present. It implies that any present that gives enjoyment over and over, would be better than a gift that only provides that feeling once, thank you for giving so much Bettina.

Steve Raw ‘Bettina’s Dad’

“We’ve got this gift of love, but love is like a precious plant. You can’t just accept it and leave it in the cupboard or just think it’s going to get on by itself. You’ve got to keep watering it. You’ve got to really look after it and nurture it.”  John Lennon