Even though we are a somewhat motley crew we ARE (on the whole) a normal family.

OK, our son is in a wheelchair that is being used to hold all the shopping bags (hanging off the handlebars) alongside feeding pump and bag, oxygen cylinder and other bits and bobs essential for a shopping excursion!

Some people smile at us, others try to avoid looking and on occasion we meet someone who gently touches my arm and says “I’m sorry”, while their sympathetic faces look down at my boy.

But there is nothing to be sorry for; he is the light of our lives.

Life is a wonderful muddle of happiness and worry, like for any parents.

Nevertheless, there are a few things I would like people to know…

1) It is not an Unhappy Life

Life, ladies and gents, is for living. We create our own joy and happiness, likewise we can allow circumstances beyond our control to steal away that joy.

We have chosen to be happy.

2) At times we need to be Allowed to Grieve

When my Dad passed away in December 2016, my world stopped turning. The pain at losing him was visceral, and people understood that I was grieving and needed time to heal.

My son is alive, but as a consequence of his condition he has been robbed of much. And so have we, his family.

My son is here with me, but at times we need to grieve the life we lost.

3) For us, a Diagnosis won’t change anything

For some families it does; it can lead to a prognosis, a better way forward, better therapies.

For Sam, it won’t make any difference to his treatment or life, so we have chosen not to search any longer for that elusive answer.

4) My Boy is Smart

Some days Sam isn’t very interactive. He is exhausted. He may not hold your gaze but watch closely and you’ll see him respond when asked a question.

He’ll use subtle makaton signs for yes, no, tired, hungry. He listens to everything, turning his ears towards you when you speak because he can hear far better than he can see.

Some days he’s just exhausted. But pay attention to the subtle signs, and you’ll see his intelligence shine.

5) Love Him for Who He Is

This is the big one. Please, accept and love my boy for who he is, not what he may or may not do in the future.

He is here, now, and he deserves love as much as any child.