I joined a club that I didn't choose to sign up for

By Sophie Cole

My friend is joining a club. It is a very exclusive club. To be a member of this club is something people aspire to. It takes years to join. You apply; a member has to sponsor your application verifying you are of the right social background, that you are the right kind of person, that you know the right people and that you will behave in the right way. Once you are sponsored, you “court” some of the members, showing off your impressive social skills. You must abide by a strict dress code, a grooming code (yes, even down to the way you wear your hair) and a code of behaviour at all times.

Then you wait until a membership becomes available, often years. You pay huge annual membership fees to be a member of the club. However, once you are in, you are, I guess, at the pinnacle of society. You mix with the wealthy, mingle with the great and have access to amazing facilities, golf courses, tennis clubs, bars, restaurants, and probably more.  You will be invited to charity balls and will appear in the social pages. You may invite friends to “play” with you in the club, or lunch or dine as long as they too enter that world whole heartedly adhering to the rules and codes.

You and your family will be welcomed and accepted and you will get to know most club members. You may stay in the club as long as you choose, if you continue to follow their rules, pay their fees and don’t do anything scandalous. You may exit the club with notice if your situation changes. 

When I was listening to her talk about the club, I realised I was already a member of a club. Another very exclusive club. A club that no-one aspires to. A club that I didn’t choose to belong to.

The membership rules are a little different. 

There is no application process and certainly no-one  verifies whether you will be the right person, (despite the fact people not in the club tell you constantly that you must be a very “special” person to belong to this club.). This club is indiscriminate of age, race, religion and social standing and you will find once you join, those things no longer matter. 

Some people enter the club immediately on the birth of a child, others fight for a diagnosis, and some join through accident, injury or medical condition later in life.  Once you join though, you will be welcomed. 

There are no set membership fees, however costs can be exorbitant and life long. 

The club will take up every minute of your day. It is a 24 hour, 7 day a week club, with no holidays. There is no exiting this club. Just like my friend’s club there are incredible facilities and equipment; there is medical equipment, life saving equipment, mobility equipment, communication equipment, modified vehicles… and the list goes on. 

There is a dress code for many. You will notice the practical shoes, often minimal jewellery and usually older clothes, as members’ time and money is focused on other things and whilst they may have done the best with their hair, members will always have tired eyes. 

The behaviour code for this club, is certainly a little different – behaviours won’t be judged. You won’t be thrown out of the club because of behaviour, in fact that is what may have made you eligible. You won’t  be invited to charity balls unless you or your family are the charity. You won’t invite friends to play with you in this club, in fact most of your friends and even some family will leave you when you join.

This club does offer some amazing benefits, though not quite the same as the social club. 

Once you join, you will cry like you have never cried before. You will feel pain that you did not know was possible. You will love beyond your wildest imagination. You will find qualities in yourself that you will be immensely proud of, especially strength and courage. You will learn patience and resilience. You will live one day at a time. You will see the world and those around you in a completely different way and many things that once seemed important will now appear trivial.  Your perception will change.  You may find it hard to relate to those not in the club, as your world is different now.

As a member of the club, you will meet the most incredible people, not necessarily the rich or the famous but people who will love and accept you and your children for who they are. You will be touched by kindness and generosity you have never before experienced.

You will never know all the members of the club but you will come across them on your journey, your eyes will flash with recognition and there will be a shared understanding, a shared knowledge and a shared empathy. You will find people in the club who become your closest friends, they will guide you, they will support you, they will understand you and they will stand by you. They will not judge you.

So whilst it is not a club that others aspire to, whilst it is not a club I chose to belong to, it is a club I am in. It is a club I am proud of. If you are new to this club.  Welcome to the club of being a mother to a child with a disability.  Welcome to the Special Needs Mums Club! 

Sophie Cole is the mother of three children, two with diagnosed disabilities and medical conditions