20130523_121050-1Visitors to Steve’s blog site will have seen several posts of mine which relate to being Bettina’s mum. Some of the blogs are by Steve on being Bettina’s Dad. We have had many compliments/comments on these posts as they give an insight into our world and, for some people, strategies which they feel they could apply to their own situations.

For Steve and me, it has been good to revisit some of the earlier days with Bettina, especially as time goes by so quickly you tend to forget some of the achievements and some of the forks in the road you have to take.

In an earlier post (Being Bettina’s Mum: Care to Communicate) I wrote that finding ways to help Bettina to communicate taught us a lot about ourselves.  In many ways, it has shaped who we are today, but faced with such adversity it has also helped us discover who we are and tested our endurance.

Most parents will agree that having children has changed their lives.  A child can change your perceptions of the world, your attitudes towards others and a sense of mortality that you may have previously ignored!  However, having a child with a disability brings an enhancement to those areas and can challenge every aspect of your world, including your own strengths and weaknesses.

So, what has being Bettina’s Mum and Dad taught us about ourselves? 

  • Moral Courage: Whilst this is something that most people will say they have, it is only when this is tested to the limit that you are able to recognise just how much moral courage is there. Bettina was one child amongst a growing cohort of children with similar needs which meant, from nursery school age, taking the decision to raise our heads above the parapet in order to help Bettina; help others; raise awareness and highlight areas of need.  This does not make you popular with budget holders!  A knee-jerk reaction to a request for something which is not already provided, and may have a severe and immediate budget implication, is understandable and usually provokes a one-word answer (mostly “no”) but that does not mean you should simply accept that answer and walk away, and Steve and I found that we could not simply walk away either.  Having meetings with people who are already under pressure from other directions can be difficult, even hostile, and it takes enormous amounts of moral courage to insist that you are not going anywhere until the matter is sorted out.  Furthermore, we knew we could not just procure help for our child (which would have been much simpler), we needed to ensure that the children coming through the system after our child had the same support secured.  Since those early days, we have continued to move forward, helping to make positive changes to our daughter’s life and the lives of others with our moral courage still intact – and in some areas we still remain unpopular!
  • Stamina: Many people consider the word “stamina” to relate only to physical strength and ability,  For example, you may need stamina to make that all-important spurt during the last leg of a race to win.  Or you may need a certain amount of stamina to stay out all night partying! But in this case, stamina to Steve and I meant maintaining a high level of dedication in many areas, sustained over many years, to continually meet Bettina’s needs.  It was not just a case of having enough energy to chase after her (Bettina would have made a great world champion athlete when she was younger!) but having the stamina to stay up most of the night looking after her and then stay awake all the next day too!  At her worst, Bettina could stay up for a straight 48 hours without any sleep and still be bright as a button and in full mischief mode throughout.  Naturally, over time we discovered ways and means of fine tuning our ways of dividing the night shift and is probably why most people are amazed at how Steve can work long hours without showing signs of fatigue!  Stamina also meant not folding when confronted with new issues and sticking to our guns where Bettina’s needs were not being met by external sources, and it meant ensuring that our oldest daughter’s life was not affected by Bettina’s high level of support.  Stamina meant not allowing our family life to be compromised and insisting on doing the same activities as other “normal” families despite the challenges.  To Steve and I stamina meant not casting ourselves in the role of victims, but in the role of champions for Bettina and her friends.
  • Knowledge: Very early on Steve and I realised that being able to research and arm ourselves with the right sort of knowledge was in invaluable tool!  We became (and still are) experts at reading and interpreting local and government legislation around the rights of an individual, especially in Bettina’s case where legislation was specific and, where legislation was ambiguous, exploiting the loopholes.  Being in possession of the right knowledge is very empowering and is a super-power all parents should possess!  We also found that being able to demonstrate that we were knowledgeable induced an enhanced level of respect from professionals which resulted in more productive meetings.  We also experienced more and more families turning to us for advice and support.  Today, knowledge (whether it is background or substantive) is still something we feel is an important part of our holistic approach to caring for Bettina and, we have discovered, is something we actually enjoy.
  • Expert Opinion: Over the years, our experience and knowledge has moved towards the natural acceptance that we are now considered to be of “expert opinion” – not always meant as a compliment!  As many people know, expert opinion is called in when there is doubt or an in-depth explanation is needed.  However, Steve and I have always tried to use this for the greater good and, in many cases, this has been successful.  We have discovered over the years that our experiences and strategies can be transferred or modified to make life easier for others.
  • Reflection: Family life goes at such a fast pace these days that is is sometimes difficult to find the time to stop and reflect, especially where there are some difficult times you would rather forget.  However, Steve and I have found that taking the time to reflect every now and again is good practice and can be cathartic.  It can help you put things into little boxes in your mind and, where necessary, bring closure.  Steve and I have found this comforting, and sometimes humourous and gives you the confidence to deal with any future problems in the secure knowledge that you will be able to look back at this at a later date and measure any progress.
  • Endurance: One of the most important things Steve and I have discovered about ourselves is the confidence to endure.  Being Bettina’s mum and dad has always meant having to find that extra reserve – whether that be stamina, strength, humour, knowledge, or ability – and coping mechanisms for when things go wrong.  But we are now at that point in life where we know that wherever the challenges take us, we will endure.  Over the years we have had to endure much, but the legacy of that is knowing and understanding the kind of people we have become and how our experience has shaped who we are.

Being able to reflect on who you are and how you have got to that point is not limited to just those with additional responsibility.  Reflection and recognition is an important part of your journey through life.  If you were to do an audit today of the lessons in life you have learned, what would the results be? What does your list of discovery and endurance look like?