I am the pram – A new Mum’s story

The phrase I hear disabled parents often say, is that they have had to ‘fight, fight, fight.’ In the run up to becoming pregnant, I had a period of eighteen months of being housebound as social work refused to ramp our property, which was very frightening. Not only did this lead to us moving home to fight our case, but it also exposed us to the system at its worst. I conceived about a month after we finally got our ramp and were then able to buy the electric power chair that reintroduced me to the outside world again.

Morning sickness plus learning how to drive a chair was not an easy learning curve! Neither were all the extra appointments I had to have as I had continual UTI’s and other issues that needed checked throughout the pregnancy.  The joy I had expecting our son was indescribable. All the extra hormones actually seemed to benefit both the CFS/M.E. and fibromyalgia I suffer from. I had some of my best and worst days health wise, which made the experience a continual rollercoaster.

From the very first appointment we had with our midwife we were fighting for an appropriate care plan for during and after the birth. I spoke to so many people, and yet it took the whole nine months to get a plan agreed in writing.  I would love to say this had a positive outcome, but unfortunately I was let down dreadfully after the birth.  My son was born by emergency c-section, and the team involved at that time could not have been better.  Again, the extremes of best and worst times came into play.  After an amazing experience in theatre, I then had a hellish time trying to cope with nurses who blatantly ignored the care plan we’d agreed.  I was torn between the miracle of meeting our little boy, and the exhausting process of arguing over toileting issues, and the lack of care I was being given.  We came home to further difficulties from social work who insisted on pointless assessments despite my full co-operation before the birth.  It’s alarming how often I needed to explain to professionals what their role should be.

I’d spent an enormous amount of time organising the house and the additional childcare necessary to support us in advance, which was all worth it.  Sadly, the negative experiences drained me so much that I think it made it even harder to recover from the post section infections I had.  We opened ourselves up as a family to any positive help available from friends and family, and were frank about the challenges we were meeting.

I’d had such mixed experiences using the power chair, especially with public transport, I was really uncertain about taking my baby with me.  Once my pain levels after the c-section allowed it.  I used a normal baby carrier on my chest to transport him with me.

The sensation and unique experience of having my son face to face on my lad, whilst independently wheeling him, was heavenly.  I know of no other experience that has given me so much pleasure.  Our little lad is a friendly chap who loves to meet new people, so he also enjoys going out and about, and attracting so much attention!

It is my hope that over time disabled parents will be respected for their skills and strengths. We need to be appreciated for the hard work we do making our families work together as a team, whilst also having our vulnerabilities and needs recognised and protected.

 

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