The Blog

Sad News

Posted by on Apr 21, 2017 in Life with a CP Baby | 9 comments

This is Stacie’s husband, Gareth.

I’m afraid I have sad news to pass on. After her long struggle with leukaemia, Stacie died on Good Friday. She died at home, with her loving family around her.

Stacie’s illness became more and more debilitating over the past year. She nonetheless lived life with the same passionate independence that defined her. After learning in October that all routes to a cure were blocked, she determined to see family, renew friendships and live as best she could until she could endure no more. She did this and more. Her decline, when it came, was thankfully swift.

Stacie was much loved and admired. She touched the lives of many as a teacher, writer and disability rights campaigner. To me she was the woman I loved, my remarkable wife for seventeen years, a loving mother to May and Ieuan. 

After May’s birth this blog was a very important part of Stacie’s life. It was a place where she could share all that she discovered in being the mother of a profoundly disabled little girl like May. That meant documenting great pleasure; sometimes it meant documenting great pain. Stacie was an expert at writing with generosity about a life few people lead. That’s why many people read this blog.

This blog also meant documenting, ever more, frustration in the face of a more general intransigence in attitudes to the disabled. I think Stacie has always been clear that May’s condition meant that we have often been treated as a family with great kindness and care. This is how our society likes to think of itself with regards to the disabled. We have also been treated with insouciance and, at times, disregard by those who ought to have known better. This experience is the broader truth of our society today, the dark mirror to its charity.

A woman of Stacie’s integrity couldn’t stand for that. Hence her campaigning and her stubborn refusal to accept that this was as good as it was ever going to get.

For those who are able to attend, Stacie’s funeral will be held at the West Norwood crematorium, next week, on Thursday 27th April. The ceremony will begin at 2.45pm. We will celebrate her life, and all are welcome.

I will publish a fuller obituary here in the weeks to come.

I keep watching these videos and they make me cry

Posted by on Jul 16, 2016 in Hot Air, Life with a CP Baby | 1 comment

I keep watching these videos and they make me cry

Either I am really hormonal or there is something genuinely wrong with how people view disability. Or both. Maybe it’s both.

I keep watching videos in my Facebook feed about people with disabilities being accepted — not being accepted despite their disabilities but because of their normal “I am actually a human being just like you” qualities. (more…)

So, I had this conversation with my son…

Posted by on Mar 22, 2016 in Ieuan, Life with a CP Baby, Seizures, Success! | 5 comments

So, I had this conversation with my son…

Last night, I put my son to bed, said goodnight 15 times and after several hugs and requests for water was finally released downstairs. And then, I heard this:

“Mama?”

“Yes?”

“I want May to be like me.” (more…)

Disability, abortion and “that woman” Katie Price

Posted by on Mar 4, 2016 in Hot Air, Life with a CP Baby | 4 comments

Disability, abortion and “that woman” Katie Price

Glamour model Katie Price has done it again. And by again, I mean risen again in my estimations. I only call her a glamour model because that is what she is known for. But, for me, she is at the forefront of the most honest, heartfelt and real conversations we have about disabled children. (more…)

Breaking news (and I was there): Tories defeated in House of Lords over ESA

Posted by on Jan 28, 2016 in A bit of praise, So-called experts, Success! | 0 comments

Breaking news (and I was there): Tories defeated in House of Lords over ESA

Ah, the poor government. It can be rough when things don’t go your way.

Like this week when they were defeated in the courts over the Bedroom Tax. Or, when the House of Lords voted that they needed to keep income as a measure of child poverty. (Stupid House of Lords *kicks can* thinks income has something to do with to poverty!) (more…)

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

Posted by on Dec 9, 2015 in Hot Air, Leukemia, So-called experts | 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.

(more…)

You gotta see this: May standing

Posted by on Nov 28, 2015 in Hip surgery, Life with a CP Baby, May's History, Success! | 4 comments

You gotta see this: May standing

As a child with special needs grows, sometimes it can feel like her development plateaus. Or at least, the time between developmental milestones is long or the worry is she won’t hit another. (more…)

We are finally moving! (Plus a major giveaway…)

Posted by on Sep 21, 2015 in A bit of praise, Giveaway, Housing, Life with a CP Baby, Success! | 8 comments

We are finally moving! (Plus a major giveaway…)

Three years ago, I signed us up for an accessible house on the housing register. Last week, we received the keys for our new home. I raced my 4-year  old, Ieuan, in the house and up the stairs. The one flight of stairs. One flight — not four — with step-free access so we can wheel May from her school bus right into our kitchen. (more…)

Time to share some sunshine…

Posted by on Jul 23, 2015 in A bit of praise, Fun with May, Hip surgery, Ieuan, Leukemia, Physio, Success! | 6 comments

Time to share some sunshine…

Four months ago, I could barely walk across my kitchen.

One month ago, I marched, along with thousands of others, from the Bank of England to Parliament Square. A march of protest against austerity, but for me another protest too: against ill health with the physical proof that I could walk the length of the march.

So, did I make it? (more…)

I have some major news to share

Posted by on Jun 22, 2015 in Ieuan, Success! | 18 comments

I have some major news to share

For the two months, I’ve kept quiet about something. A few of my friends know, and certainly my family does, but the story still seems so outlandish to me that I’ve barely said anything to anyone about it. (more…)