Children’s and young adults’ hospice Helen & Douglas House is asking families celebrating Mother’s Day this Sunday to spare a thought for mothers of children with a life-shortening condition.
One of them is Janet Thornton, from Banbury, whose 20-year old son Lawrie suffers from Jouberts syndrome, where his brain stem never fully developed. This means his movement, speech and, periodically, his ability to breathe, are affected leaving him severely impaired.
Speaking about what Mother’s Day, and being a mum to Lawrie and his brother John, 15, means to her, she said: “Being a mum to my two boys has its ups and downs, but each day brings its own different pleasures and surprises and I wouldn’t have it any other way.
“Mother’s Day starts as every day starts. I will go in to see Lawrie and give him a big kiss and he gives me a giggle or a smile. Now he’s older, he’ll often ‘play cool’ and not look at me, but this only lasts a short while as he can’t help smiling!”
“The difference will be he’ll be waving a card at me. He will pretend not to let go of it and I will pretend to wrestle it from his grasp. Then I open it and he pulls it out of the envelope for me, gives it back to me to read.
“Being a mum to a disabled child is a 24/7 job. That’s why respite at Douglas House in Oxford is so important to us as a family. He is looked after, and most importantly loved, as well as we can do it. We wouldn’t let him go otherwise.
“As Lawrie can’t communicate verbally it is doubly important that we feel we can leave him in total safety. The fact that he starts chatting and shrieking the minute he is wheeled through the doors is confirmation for us that he’s happy and excited about his stay.
“We know that one day Lawrie’s body will fail him. That’s why each birthday, Christmas, Father’s and Mother’s Day is so important.”
Visit www.helenanddouglas.org.uk for information.