I'm currently Scotland's Mum of the Year, which was a shock but has helped raised my profile as a campaigner for the rights of carers. One of our wonderful twin daughters has severe medical problems which means she is unable to walk or talk and her life is at risk 24 hours a day. But the "Twincesses", Katie and her sister Holly, are our inspiration. Join me on a journey which will never be predictable!
- Read more about Clare and her family
It’s a few weeks since Katie’s surgery, and so much has happened since.
She got home after six days in hospital and I have to say the first week or two she seemed to be doing amazingly well for what she had just been through.
We are on the surgical ward after Katie going through major surgery. The procedure is called a fundelplaction where basically the stomach is stretched and wrapped tightly and neatly around the osephagus and then stitched together.
This will hopefully stop or curtail the volume and pain of the reflux the Katie suffers from. She has had this since the first weeks of her life and the pain she suffers from... well it's heartbreaking to watch, even with all the medicines she is on (gaviscon, domperidone and omeprazole) some days these don't even touch it!
Yes, our babies are starting Primary 1. The best bit is they are both going to mainstream classes. I can remember as far back as the girls still being wee and we were just told all about Katie's conditions and her prognosis and thinking then: what will we do when they start school?
And if Holly is at mainstream and Katie is at a special needs school, who's would we go to first? Wee things like that were worrying me then, now they will both be going to the same school on the same day.
A key element of that, as I'll explain later, is transport, and the issue of a ramp or drive outside our new home.
But first, let's rewind to another trauma: we had prepared and organised for the BIG move. The new house was ready, adapted (and this includes decorated as well, we were given access to paint, lay carpets etc, giving plenty of time for the fumes and dust to settle).
Last year, the council offered us a local house that had become empty. By the time we went to visit, we had already driven past many times wondering if, and that was a big if, we could imagine building a life in there?
On the day of the viewing, I could sense the curtain twitchers as we pulled up outside. As we walked up the steep and many steps, my stomach was churning. Inside I was trying to convince myself not to like it, to make our decision easier.
This blog is not about Shakespeare, it's about the decision to move out of our bought house and into a council house, just to be able to give Katie, my daughter who has bulbar palsy, some quality of life.
A few years ago the Occupational Therapist (OT) from the council did an assessment on Katie’s needs and highlighted all the things we would need to give Katie a quality of life. The list included a wet room, a chair lift, a ramp and her own downstairs bedroom.
The Twincesses are nearly five and like all families our kids are our life. We would do anything for our children and that’s exactly what I am going to be blogging about.
You see one of our girls has a life-threatening condition (bulbar palsy) and requires 24-hour care. She also has quadriplegic cerebral palsy and is unable to walk, talk and her life-threatening condition means she is unable to swallow and protect her airway and she is a silent aspirator which means she is always at risk of choking - hence the 24-hour care!