Marie has Osteogenesis Imperfecta, and in 2013 she became a parent through surrogacy. We talk to Marie about how her disability affects her life, the process she went through to become a mum, and what it’s like being a disabled mother.
Please tell Disability Horizons readers a bit about yourself.
I am Marie, I am 31 years old and I have a disability called Osteogenesis Imperfecta (genetic Brittle Bone). But despite this I have lived a very full life.
When I left school I went to the job centre, where I was told that there was nothing for me. So I went out and got a job myself, and have worked in various capacities since. I have also learnt to drive a highly adapted vehicle, which has given me great independence.
I met my sweetheart, Dan, in 2001. We’ve since bought our own place together, paying half for the mortgage deposit each, I’ve graduated from the Open University, and when we got married in 2013, we made the biggest announcement you could possibly imagine – that we were to be parents through the miracle of surrogacy.
What daily challenges do you face being a disabled mother?
I need Dan, my PA or whoever is with me to lift my son. But once he is within my reach, I am able to wash him, dress him, change his nappy, feed him and play with him. In a few months he will be walking and the need for lifting will go away.
What do you enjoy most about being a mother?
I have always dreamt of being a mum so naturally I love that my dream came true! I just enjoy everything – playing with my son and making him smile and giggle. I simply adore every second of it.
What advice would you give to other disabled people who wish to be become parents?
I would say look at all the options open to you. I was advised not to carry a baby to term, not just because of my brittle bones, but mostly because of respiratory and heart concerns. Look into surrogacy and look into adoption, each case is different and you may be successful.
Can you talk us through the process you had to go through to get a surrogate?
Originally a very close friend of ours was going to be our surrogate, but she developed a back problem, which meant she could no longer help us. We then decided to join a surrogacy organisation, we waited about a year, but then actually found our surrogate through a mutual friend. All in all we waited many years for our dream to come true. We originally spoke of having children in 2009 and our dream came true in 2013.
Do you have any practical parenting tips to help other disabled parents?
Every disability is different, so what may work for me may not work for everyone else. Trust your own instincts and don’t try and push yourself too far. If you know you can’t do something then ask for help. Help is out there for disabled people to be parents, schemes such as Direct Payments, which you can be assessed for by your local council. You will be amazed how many people appear when you have a baby!
By Marie
If you’re a disabled parent, or are disabled and thinking about having children, here are some useful disabled parenting advice websites:
Disability, pregnancy and parenting
NHS: Help for disabiled parents
Support for parents with disabilities
Check out…
• Working for the BBC: from homelessness to success
• Challenging impaired perceptions of disability
• The great mobility scooter debate
Are you a disabiled parent? We’d love to hear about your life as a disabled parent, and to share tips with our community. Get in touch by messaging us on Facebook, tweeting us @DHorizons, emailing us at editor@disabilityhorizons.com or leaving your comments below.
Marie is an inspiration to every disabled person and many able bodied could take a leaf from her book. She has fought for everything she has managed to achieve in her life and I am sure she will instil the same grit & determination in her son. Yes she needs help but then don’t we all in some way, well done you are a remarkable young lady!
I am a disabled parent to almost-five-year-old twin boy and girl. My ex left at the end of 2011 and took the children. It took me most of 2013 to take her through the family court to establish my parental rights and responsibility as she took the view that once she left I would not be capable of looking after the children overnight. My contact went from daily to supervised contact! One problem being that I attempted suicide at the loss of my family and the fact that the woman I loved, who said she wanted children with me, was then able to merely look at me as a disability and a risk to the children, this being after I would have sole charge of them when they were babies when she went off into town with her mates. Eventually I won the right to look after my children and have them stay with me for overnight visits unsupervised! It is not easy, but we get by and the three of us manage very well indeed. I have a walking disability as a result of childhood rheumatoid arthritis, followed by multiple joint replacements, a few fractures and failed joints later I went into renal failure. My health is precarious but I am focussed and committed to my children.
I’m a single parent and wheelchair user with boy/girl twins, aged 10. I wouldn’t trade the practical hardships for anything in the world. The three of us have an unshakeable bond and I’m astounded by my kids’ empathy and ingenuity from an early age. You’re doing a great job and it certainly sounds like the only disability here is your ex’s attitude and lack of respect. Keep aiming for the stars!
I’ve been a disabled parent for just over 19 years. I was born with brittle bones. I use a wheelchair and my children never sat in a pram. To be exact, we did not even own a pram. They always sat on my feet or on my lap. My daughter was just a few hours old when she had her first ride on my lap as I took her from the baby room to meet her mother.
Disability is normal to my children to the point where my daughter came from play school and asked me why the other kids’ dads did not have wheelchairs too. I tried to take part in every possible activity with my children. I attended father and daughter dances and we went for a few lessons in wheelchair dancing before. Some of the other girls were so impressed that they also wanted to dance with me. lol
When my son was born he was treated the same as his sister. I tried to raise them as independently as possible. If they asked to be picked up, I would say no, they should climb up themselves. If we went shopping and I could not reach something on a shelf, they would climb on my lap, stand up and pass it on to me. We have had a lot of fun over the years and still do. My children look at life and people differently than others. They care more, are more liable to offer assistance when they see people struggling and care more when they see people sad.
My wife left after 14 years of marriage claiming that my disability was the problem. We had no fights over custody as she admitted that I am a good father. She got married more than a year later and wanted to move with her husband. It was agreed that the children will give her a test year where they go and live with her and if they were not happy they can come back to live with me.
After a year my son demanded to come back but my daughter was in her semi final year of school and could not change subjects when she moved back so she stayed with her mother. She has since finished school and visit me as often as she can. My son is 17 now and still living with me. He visits his mother during the holidays and says he is always happy to be back.
I can not imagine life without my children. We share interest in quite a few things like reading, movies, camping, coffee, humor, animals etc.
It has never been easy but it has always been worth it. When I compare my children to their peers , I am grateful and see myself as blessed because of their different approach to life, people in general and even animals. My children are kind, good natured and have good manners. They are never ashamed to be seen with me or to introduce me as their father.
In 2012 we traveled to Lisbon from South Africa and they both spoke at a conference on my disability as how they experience life as children with a disabled parent. At that time my daughter was 13 an my son was 11.
I’ve traveled a lot with my children and we always managed. Where I find it difficult with accessibility they are always prepared to assist me. In fact some time they have arguments as who should assist and when.
I recently fractured all the ribs on my right side and was immobile for quite a while. My daughter, who has her licence now, is always willing to jump in the car and do an errand for me and I am often amazed to see how mature their approach to life has become. I was recently hospitalized in ICU for a month and could hand my bank card to my son (16 years old (they both know my password)) and trust him to pay what needs to be paid when his grandmother took him to town and he never failed to bring good coffee with when they came to visit me. My son was still in primary school when the headmaster said he has never seen such a mature child of his age.
The challenges are enormous some times but with planning, creativity and grace from God we have managed and enjoyed each other and continue to do so.
Philip