So-called experts

Upcoming hip surgery grrrr: Part II

Posted on Nov 23, 2014 | 1 comment

Upcoming hip surgery grrrr: Part II

It’s a universal truth that all parents want to receive as little information possible about their child being cut open and stitched back together. Right? Oh, joy. It’s surgery season. May will receive surgery on her hips this coming Monday. Previously, you may recall that the hospital was refusing to allow us to do her blood test at our local hospital. They relented, thankfully. What would have been hours in the car and pushing her across the length of a huge hospital when I am weak and my immune system is suppressed, turned into a 15 minute drive and 30 minutes in the hospital....

Read More

What’s happening to May’s hips?

Posted on Nov 11, 2014 | 2 comments

What’s happening to May’s hips?

A year and a half ago, May had a major hip operation. She recovered well. There were some lingering issues — like she still crosses her legs and you can see one of the metal pieces holding her hip bone in place under her skin. Not nice and not ideal, but much better than the pain she had been in. Why did she need surgery at three years old? You probably shouldn’t read this if you are squeamish. In recent months, May has not been doing as well. At the time of her dental surgery, we suspected her pain wasn’t entirely in her mouth and that theory has been proven right. She can...

Read More

What you don’t know about my husband

Posted on Oct 13, 2014 | 3 comments

What you don’t know about my husband

I am the face of this blog. As such, people often tell me how much they admire my dedication to May. What people don’t realize is that my husband deserves much of the credit. My husband is May’s main caregiver. Her bather. Her chef. Her afternoon sleeping companion. She’s watched a full Tour de France. Twice. All because she spends so much time with him. “This is the song that proved May has better taste in music than you, Stacie,” is a typical aside in our conversation. And May does genuinely has a more eclectic taste in music than I do. Why? Because she spends...

Read More

A toothy tale of incompetence and negligence

Posted on Sep 9, 2014 | 6 comments

A toothy tale of incompetence and negligence

May was just wheeled into surgery. I’m sat amongst the other parents awaiting our children’s fate. I’ve said it before, but praise be all parents who pack a bag for their child to take them – not on holiday – but to the hospital where someone will drug them and cut them open with a knife.  

Read More

Today I’ll be speaking at Parliament about this…

Posted on Jun 17, 2014 | 6 comments

Today I’ll be speaking at Parliament about this…

Disabled children are almost completely denied child care in Britain. That means their mothers can not return to work. That means they are denied the access to early years education that is a right for every other child in the country. These children cost more; they take more time, more supervision, more training and even changes to the infrastructure of buildings. At this time, the government does not provide extra funding which leaves families like mine scrambling for child care and often needing to quit their jobs as a result. It is a human rights issue that is seriously putting children...

Read More