Not all disabilities are visible – a close-to-home reminder!

Not all disabilities are visible. I know this! As the mother of a daughter with Crohn’s, I remember all too well the years of “Can’t Wait”, rushing to get to the nearest toilet, researching where the toilets were wherever we might be going, anxious train trips, anxious car trips, uncertainty about whether to push Laura to do things or encourage her to rest . . . yet her disability was largely invisible to the regular on looker – sure she was pale and thin, anxious and exhausted, but aside from that  . . .

Back then I would be angry if anyone suggested that my beautiful Laura was ‘faking’ or suggested that she probably really could be working full time; I did everything I could to protect and support her. Now, six years after her life-changing (indeed life-saving) surgery, I no longer think of her as being sick, let alone as having any sort of disability. Of course I know that there is no cure for Crohn’s disease. Of course I know that really, she is only ‘in remission’ and that symptoms could recur at any time in some other part of her body. . .  but throughout the past six years, since the surgery that meant she would wear an ostomy bag for the rest of her days, but miraculously gave her life back to her, we have all always focused on the positive, never on any negative possibility. What’s the point of worrying or dwelling on the what-ifs? Celebrate the good times, be grateful, feel blessed . . . Not only have Laura and her husband Mikey, travelled the world, they have relocated to live and work in London, taking every chance to travel far and wide around Europe and beyond. They hike, they walk for miles, they attend concerts and they experience every kind of food and drink. It is my greatest joy to see them fulfilling their dreams and living their best lives. Laura’s connection with Crohn’s now is largely as a volunteer support worker for CCUK.  She spends a lot of time supporting others and being a role model for those less fortunate than herself – raising awareness of Crohn’s and UC is high on her priority list.

After all these years anxiety-free, I no longer think of her as sick, let alone as having any disability – it’s so easy to become complacent. To celebrate a milestone birthday (her 40^th!) and to raise awareness (and money) for Crohn’s research, she jumped (bad pun!) at the idea of raising money through sponsorship of a tandem sky dive. I LOVED the idea! Immediately said, “Do it, do it!” A sky dive I did some 12 years ago or so, was an experience I will never forget. I wanted Laura to experience this too. And then she began filling in the registration and, of course, a medical clearance was required . . .

The consultant responded and the details hardly matter, but the bottom line: skydiving is not such a good idea! So, although she lives her life to the full, looks and feels as if there are no limits on her abilities, my daughter has a chronic illness – a disability. If she was to ignore the advice and take the risk (and certainly both her heart and mine would like that to be able to happen) and something was to go wrong, imagine how we would feel! Not only would there be the devastation of the physical impact it could have on Laura, but it would seem so . . . the word that springs into my mind is ungrateful. Ungrateful for the consultant’s concern, ungrateful for all the care of the original gastroenterologist and surgeon, ungrateful for all the weeks of dedicated nursing care – ungrateful for the miracle of a life already lived to the full.

Of course we will continue to be grateful for the blessing of good health and we will continue to focus on the positive and not to worry about the what-ifs! But the bottom line is that my lovely daughter cannot ignore her Crohn’s disease be it in remission or otherwise and I must remind myself not to become complacent! Not all disabilities are visible.