Posts Tagged "motherhood"

It could have easily been me. My life rationed away.

Posted on Dec 9, 2015 | 3 comments

It could have easily been me. My life rationed away.

I read a deeply disturbing article last night. I should have been asleep, but instead I scrolled through The Guardian’s web site and accidentally landed on a story that resonated all too closely to my own life. “A 22-year-old woman with relapsed acute myeloid leukaemia died after being denied a second allogeneic stem cell transplant,” the article in The Guardian on NHS rationing read. “Her doctor said her late relapse and good response to salvage chemotherapy meant there was a 50% chance that a further transplant would have cured the disease. However, the local GP-led...

Read More

The joy of parenting a special needs child caught on video

Posted on May 30, 2015 | 4 comments

The joy of parenting a special needs child caught on video

I almost didn’t use the phrase “Parenting a special needs child” in the title of this post. Don’t get me wrong. I have no objection to the term “special needs child”. I live in reality. I call it like it is. But, sometimes there is no special needs in the equation. Sometimes, like this video shows, children are just children. They have temper tantrums. They get sick. And hell yes, they shriek with joy and giggles sometimes. When May shrieks with joy and giggles, as her mama, I don’t blink back bittersweet tears and think: “Ah, bless. She is so...

Read More

This is not a joke.

Posted on Feb 15, 2015 | 0 comments

This is not a joke.

A photo to illustrate the lunacy we are up against. This family spent two years campaigning for access to their own home. “We weren’t fighting for a massive steel ramp – we just wanted to improve Katie’s quality of life,” her mother said. Mother’s anger after council install ‘slalom’ ramp for disabled daughter in front garden http://t.co/TI0w9kt0f8 pic.twitter.com/IAVRsnfL71 — Telegraph News (@TelegraphNews) February 13, 2014   What’s the craziest thing you know of that a council has done to “help” a disabled...

Read More

Kids all access… Tower Bridge

Posted on Jan 19, 2015 | 0 comments

Kids all access… Tower Bridge

When you are confined to a wheelchair, it is hard to imagine climbing to the greatest heights. What am I talking about??? We live in LONDON. Wheelchairs top any view if there’s a lift or a wheel involved. A big wheel – the London Eye.  This weekend we hit new heights going to the Tower Bridge Exhibition. The exhibition allows you to take a lift up to the top of Tower Bridge and walk across a glass walkway over the Thames river. The views are incredible. My three-year old especially enjoyed “the show” which was a film in which  life-sized historical figures bickered...

Read More

The Special Needs Sleep Guide or “Sleep? What the hell is that?”

Posted on Jan 7, 2015 | 2 comments

The Special Needs Sleep Guide or “Sleep? What the hell is that?”

It’s 5.30 AM. Why am I up, you ask? If you are a parent to child with special needs you probably already know. May woke at 2.30 and mewed/cried/sobbed for attention until 3.45. I’m trying to retrain her to soothe herself to sleep so I let her “cry-it-out” a method of sleep training used on babies. You let them cry and extend the amount of time in between going in to comfort them. I lay with May the first time, but after that I held her hand or stroked her face. I left her alone and I waited in my bed for the first sound of her complaints which always seemed to...

Read More