When I first discussed the possibility of having children with a doctor, I left in tears. The GP laughed in my face and said, ‘My wife’s pregnant and she is struggling so you will never be able to manage’.
This judgement was made because I have spinal muscular atrophy, a degenerative muscle-wasting disease, and scoliosis, a significant curvature of the spine. I have been unable to stand or walk since I was 13, and am wheelchair bound.
People generally didn’t understand why I, a disabled person, would want to have a child.
They thought I was selfish for wanting a baby and claimed that I wouldn’t be able to cope with the responsibility. It made me feel so angry because there was no way of proving them wrong.
I have taken care of my nieces and nephews since I first became an auntie, aged nine, and have never thought that my wheelchair would make it harder for me to take care of a child. But sometimes, on a very bad day, I would believe my critics were right, and that I should try to be happy without becoming a mother.
I have always wanted children but because of the medical advice I have received, I was convinced that it wasn’t possible. Not only were there questions about how my body would cope with pregnancy, but doctors also thought I couldn’t conceive as my health issues had delayed puberty.
When I met my partner, Jak, we discussed having children as most couples do. Once we were settled and had a house together we felt ready for a baby and so I started researching into the possibility.
By the time my doctor’s appointment came my period was late but the pregnancy tests I had taken were all negative.
Normally my dog is obsessed with my boyfriend but one day he was being clingy with me and, as strange as it sounds, I felt like he knew something. So I said, ‘Come on then let’s go and do another negative pregnancy test’.
I didn’t really want to look at the test results, as I was sure it was going to upset me all day but took a peek – when I saw the plus sign, I was nearly sick.
I called my doctor with so many questions, but she hadn’t dealt with anyone with my disability before and so couldn’t advise me on how the pregnancy would progress.
It put a big confusing blemish on a day where my partner and I should have been ecstatic.
Due to my spine curvature, my torso is squashed and pregnancy further reduced the room in my chest, making me breathless. The additional weight of being heavily pregnant also made moving about difficult and I got pressure bruises on my knees from crawling.
Despite this, my pregnancy was physically perfect, but I was so anxious that I ended up hating every minute of it.
My son was born by caesarean section on the 17 June 2019. I had to be put to sleep for the operation because my spine is too crooked to fit a spinal anaesthetic.
I woke up in the intensive care unit four hours after the surgery and my baby boy, Oscar, was fighting fit.
My partner, Jak, had taken a month off work to help me as I recovered and during that time I began to have doubts about how I would cope on my own. It took two weeks for me to be able to pick Oscar up properly. I blamed my disability but all mothers who have had a c-section need time to heal.
I had become used to being able to just ask Jak to fetch things for me and every time I did this it proved that my doubters were right, I would struggle on my own.
When the day came, I just sat there for the
first hour, holding Oscar and looking at him. When he stirred because he was
hungry I did panic a bit. But I popped him into the buggy, pushed him through
into the kitchen and made him his bottle of milk.
My family and friends had told me to call them if I couldn’t manage, but by the end of that day I wasn’t just coping, I was enjoying it.
Now Oscar is seven months old and I am so grateful that I get to be with him in the day.
I have been forced to adapt every aspect of my life to care for him – but it’s no different from what any other mother does. The way we do things may not be conventional, but they work for us.
I simply put Oscar on my lap and we shuffle
down the stairs in the morning, and I use a baby carrier when we head out to
the shops together. When we are about the house I sit him on my knees and use
arms to slide us across the floor.
Disability equipment is very expensive so we have made a few adaptations ourselves. My father in law added a hinged side door to the cot so I can slide Oscar out onto the floor.
And just like all new mothers, I have good and bad days – but it is not because of my wheelchair.
When people see us out together they do a double-take and I have noticed people whispering about me. But the majority of people are overly positive and comment on how inspirational I am. They mean well but I just want to be treated like everyone else.
If you’re disabled and want to have children, trust your instincts. Only the inhabitant of a disabled body truly knows its limitations.
I knew my disability wouldn’t affect my ability to be a good mother. And when the time is right, I will have another baby and do it all again.
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