What being a Dad means to me
Being a dad for some people is a lifelong dream, potentially you might even say their meaning of life is to produce new life. I need to be honest and admit for me it wasn’t. Not because I didn’t want to be a dad or didn’t like children but because since I can remember I was told the chance of me passing on my dodgy DNA was very high (50%) and I didn’t want to inflict the struggles I’ve needed to overcome to someone else by choice.
Here comes the science bit. I suffer from a genetic mutation (no, I’m not a member of the X-Men) which is called MPS4 B. This was diagnosed when I was about 7 years old and in the late 80’s medical advances hadn’t come on as much as they have now and I was told I would be wheelchair bound by the age of 20, probably dead by the age of 40 and I if I was lucky enough to find someone who would partner up with me, let alone have a child, then I would pass on my disability to them. So, despite the fact I love kids I wrote off any chances of ever having my own family and didn’t have it as a goal in my life. This never really upset me or played a part in how happy I was, and I led a very satisfying life being an Uncle and Godfather and I thought this would be the closest I would get ever to having kids.
Now, I’ve always been a stubborn sod and don’t really like doing what I’m told. I had managed to get to the ripe old age of 32, I wasn’t wheelchair bound, I was relatively healthy with no signs I was going to kick the bucket any time soon and guess what, I managed to somehow find someone who wanted to spend the rest of their life with me! That left the last thing I was told I shouldn’t be able to do or achieve and this was the big one, have a baby.
My partner Mel convinced me to get back on the medical radar and speak to my specialist again. This was something I had avoided doing my whole adult life thus far, my thinking was that if I don’t see a doctor then I’m not disabled, that’s how it works right? (That’s a whole other story for another blog and we do not have enough time to go into that now!) I went to them with many of my previous assumptions around genetics and passing my disability on to any potential children. Straight away, I was told that the odds of having a “normal” baby were far better than 50/50 and the only way it could happen was if Mel had the same gene defect as me AND even then, there was still a good chance we would have a healthy baby. To be sure my specialist planned for Mel to have some genetic testing and we played a waiting game to see what come back.
The time between the testing and results was a time of reflection for me. How had I of all people found someone who wanted to have a child with me? Did I deserve that? Why had she picked me? If the test comes back that Mel has the defect, will she leave me? I was so close to having something I never thought I would, and it could be over before its even started? It was an exciting and nervous time but being an optimist and a believer in positive mental attitude, deep down I knew we would get positive news and that we would be ok.
After what felt like forever, we got the results back and it was the news we were hoping for! Mel didn’t carry the gene and this pretty much guaranteed that if we were to have children they would not have my condition. I felt so relieved and it opened the doors to the rest of our lives! Despite the fact we knew planning for and having a baby would never be an easy process, at least we wouldn’t have that hurdle to overcome. I had proved them wrong again and done another thing I was never supposed to be able to do.
When you have something you never thought you would it makes you cherish it even more. I didn’t think I would have the opportunity to be a father and I must thank Mel for that. I see being a Dad as an opportunity to role model the changes and positivity you wish you could see in society to a person who can make a difference.
Our health visitor asked us what we wanted to get out of being parents and my answer was to raise someone to make a positive contribution to society. Having Florence has made me less closed minded, more accepting and understanding of different points of view and ways of life because that’s how I want Florence to live her life. I want to show Florence the world and for her to see it with her eyes wide open, without her having the narrowed mindedness of my cynical perspective. I want to raise her to remain curious and to understand that different isn’t wrong and different isn’t scary, difference is to be embraced and learned from. I want her to be able to be whoever or whatever she wants to be without any insecurities holding her back and for the world to reap the benefits of what I know Florence has inside her and the difference she can make to the world will be significant, I am confident of that. Florence will have a head start on this journey from growing up living with a parent with a disability as she doesn’t know that it’s different or unusual. She will see a father who can overcome anything, who is adaptable, who works hard to provide for their family and does his upmost to show no barriers are impossible to overcome and this makes me so proud.
Her accepting me without knowing any difference makes me feel like her superhero, this is who I want to be to her and what she gives me in return is the feeling of invincibility when I am with her! The exact opposite side of that coin can be said as well. When I watch her do the simplest of things like feeding herself, crawling or putting cups inside each other it makes me weak at the knees and I’ve lost count of the amount of times I’ve cried with pride by just watching her.
I am motivated to have a relationship with Florence of mutual respect, trust and honesty. I don’t want her to ever be in a position where she is scared to tell me about her mistakes for fear of my reaction. I want to know about the things that have gone wrong and for her to know I will support her in trying to fix them rather than her feel she needs to keep secrets or that she needs to lie or hide away from errors. I want to raise her in a way that means I don’t dread her leaving the house, not because of who she’s with or what she’s doing but because she is able to identify right from wrong and to see the good in everyone and the people who can add value to her life. I won’t judge her as I don’t want her to judge other people, I want her to see things from all viewpoints and if she can make a difference to other peoples lives in a positive way then that is the correct route to take.
The title of Dad is the proudest thing in my life, but it must be earned and learned. I will make mistakes along the way, but Florence so far had been the best compass for keeping me on the right track. When times have been hard in the first year of fatherhood it has been important to keep reminding myself that it isn’t always because of my disability or my physical limitations but because being a parent is hard for everyone. If it was easy we wouldn’t get the rewards from it.
I am not that disabled guy anymore, I now am Florence’s Dad!
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