Motherhood and OI

I am Joanna, and I am 46 years old.  I have type 5 OI, am of restricted growth (3’7”), and am a full time powered wheelchair user.  I am married to Richard, also a wheelchair user with cerebral palsy, and mum to 13 year old Jacob who has OI, and 9 year old Molly, who does not.

Being a mum was always my dream.  As a child I was well aware of the realities of being a disabled woman wanting to be a mum, and I questioned whether this would be able to happen, whether by me carrying my own child or by adoption.  Thankfully, seeing other successes within the OI community, and having a very supportive medical team, meant that by the time I was married and ready to start a family, we knew we would go ahead.

“there was no doubt in our minds that a life with OI is a life worth living and enjoying.”

We did encounter some negative comments, some from people close to us which particularly hurt, and I am sure there have been many more comments made that we haven’t heard, but generally our decision to have children has been supported by those important to us.

We knew that there was a 50% chance of passing OI to my children.  We also knew that this wouldn’t prevent us from having children – I am having a wonderful life, and of course I know of the pain and physical and practical difficulties that may lay ahead for any child with OI, but I also know that given the choice I would have wanted to have been born – there was no doubt in our minds that a life with OI is a life worth living and enjoying.

Jacob has OI, and there have been difficult, and sad times, but mostly amazing times, and never once have we regretted that decision.  And most importantly, he shares it.  He is amazing, and along with his fabulous sister, fills our hearts every day.  Unexpectedly, we were more shaken when we found out that Molly didn’t have OI.  Not because we wanted her to have it, but because we were well aware that this would be a new challenge for us and for her – being brought up in a house full of disabled people comes with its own unique experiences and we need to be aware of this too.

“As any mother, all I want is to be able to keep my children happy and safe.”

The anxiety around being able to do this over the past couple of years, during a worldwide pandemic and concerns around war and the state of the world, has been real.  And if I am honest, I think the anxiety is compounded by internalised ableism – was it fair to have had children if we can’t do what others can do, to do all that is possible keep them safe?  But once I have finished catastrophizing, I know most parents are feeling a variation of this at the moment, and all we can do is everything we can, and trust others if and when we need to.

I have loved absolutely every stage of being a mum – from pregnancy to babies to where we are today (although ask me again when more hormones come into play!).  There is nothing the four of us love more than just being together.  There have been practical and emotional challenges, but we have always found a way – us disableds are the best planners, organisers, and problems solvers there are – we have to be!

Like any parent, our measure of success will be the adults our children become.  I just want them to be happy, secure, and love and be loved.  I just hope they are able to look back at their childhood with smiles and say; “mum and dad? They did alright”.