I had my appointment with the anaesthetist today and I can’t decide if it’s calmed me down or made me more anxious! They now have a plan which is great, it’s just that some of the plan isn’t really what I’d choose. The most important … Continue reading Better The Devil You Know
We had another counselling session this week. I say ‘we’ but actually it’s all very focussed on me and Paul is more of a bystander. I had hoped that it would include us working through things together more although Paul and I feel that we … Continue reading Is Counselling Useful? Part Two / Trying To Regain My Independence
As I’ve mentioned before, I was born with Holt-Oram Syndrome. Holt-Oram is a genetic condition although I’m the first in my family to have it. It’s quite a rare condition affecting 1 in 100,000 people. It is caused by a mutation in the TBX5 gene … Continue reading Playing The Numbers Game
One of the things that I find really difficult is the bureaucracy and pigeonholing that goes along with disability. As a person with a disability I am expected to fit into a neat little box. There doesn’t seem to be any human element to decision … Continue reading One Size Fits All?
Sometimes it can be hard dating when you have a disability. When I was younger I was much more self-conscious. I found it hard to believe that someone would want to be with me and so I stayed in problem relationships for longer than I … Continue reading My Husband, My Hero
As I’ve mentioned in previous posts I was born with Holt-Oram Syndrome. I run an online support group for people with the condition. It’s a rare condition affecting approximately 1 in 100000 individuals. It’s genetic and is caused by a mutation of the TBX5 gene. I didn’t … Continue reading The Celebrity of Disability
I have a condition called Holt-Oram Syndrome. It affected the growth of my arms before I was born. I have no thumbs, short arms, a lack of dexterity and no biceps / triceps. This occasionally makes things harder to manage although I tend to find my own ways of doing things. The idea of becoming a mum was something I found a little daunting. I find that it usually takes me a while to find a way to manage something new so dealing with so many new things at once seemed like a challenge. I decided I wanted to make things as easy as possible on myself and started to research more manageable options.Babygrows and their fiddly poppers were a concern. I’ve seen people with ‘normal’ hands struggle so knew I needed to find an alternative. It took a while but eventually I found these Velcro babygrows from Hook and Loopy.
Another option that I found during my search is the magnetic babygrow from magnificent baby. It looks amazing, I’d love to get my hands on one but they seem to be a little hard to find in the UK. I have contacted the company and they are hoping to set up distribution to the UK soon so fingers crossed they will soon be available.
The easiest non-popper babygrow to find seems to be the zip up babygrow. They are available from a range of different shops, including Boden, Gap and Hatley. They are a little more expensive than traditional babygrows but I decided that they’re worth it if they make life a little easier.
The pram was something that really worried me. There were so many different elements that might make it hard to manage. The height of the handle, the brake, the folding mechanism, the weight, the ease of steering etc. Eventually, after trying a lot of prams, I found the Bugaboo Cameleon 3. It ticks all the boxes and looks pretty good too! I also have to say that the customer service has been amazing.
The car seat was even harder to find. They’re heavy, they’re awkward and they have childproof buckles which makes them hard for those lacking opposable thumbs! After months of searching and many tears we found the Cybex Aton Q.
Cots were another problem. We wanted to have our baby in the room with us to start with and we discovered the babybay which adds on to the side of a normal bed so that you can co-sleep without the danger. It has a removable side which makes access really easy.
Bathing the baby was also something which I was worried about managing, until I found the changing unit from Cosatto. It has a bath under the changing unit. The whole thing is on wheels and there’s a draining tube so you can take it to the bathroom and empty the water out without having to lift a heavy bath full of water.
I also thought that this bath support from Mothercare would be useful to help deal with a slippery wriggly baby.