“I could never do what you do” or “Mykal is lucky to have you” is something I hear often from other parents, and my silent reply is “it’s not like I had a choice” but I take a deep breath, and smile because while having a severely disabled son has challenges every single day, I’m a better person because of it.
From the beginning of my third trimester I started getting unusual pains and felt like my baby was not moving like he should be. The mid-wife & GP continued to reassure me that all was normal despite my continual concerns that something was not right. Despite days going by with no movement and increasing pains especially when I would try to roll over in bed – I didn’t feel like anyone took my concerns seriously.
At 37 weeks, the pains seemed to come regularly, so we travelled through to the closest hospital (1.5 hours away) but they stopped just before we got there and after being examined we were sent home. The next morning I had a major bleed. I rang my mid-wife who advised me to go and see my local midwife. I visited her as soon as I got my daughter up and after she heard baby’s heat-beat she said all was fine. I knew it wasn’t and insisted that I get checked out in hospital. That decision saved Mykal’s life. I waited until a friend was available to drive me and we travelled through to hospital. As soon as the monitor was put on the room flooded with people and I was being prepped for an emergency caesarian. Mykal was born, cold and blue the length of a full term baby but only weighing 4lb15oz, he was skin and bone. He had to be resuscitated and we didn’t know if he would survive. Apparently the pains I was experiencing was the placenta pulling away and as a result he was hardly moving because he was not being fed properly.
At first no one knew if there would be any long term affects from his traumatic birth, but I started noticing very early that something wasn’t right. Again, I was reassured and it was noted that I was probably just overwhelmed with mothering a newborn and another child who wasn’t even one when he was born. Even in my struggle, I had to fight for someone to take notice that it wasn’t me – something was wrong with my baby.
We didn’t get a diagnosis until Mykal was one. An MRI showed that damage had been done to the part of his brain that develops at around 32 weeks gestation, which corresponded with the time I started to become concerned with the pregnancy.
He was eventually diagnosed with Cerebral Palsy when he was one. Mykal has no functional movement, he uses a wheelchair and there are a lot of ‘cant’s’ in his world; can’t sit or move unaided, can’t feed or dress himself, can’t hold a pen, can’t be left alone, can’t go anywhere with steps or on the beach or forest walks and the list goes on.
No one could tell us if Mykal would be able to speak, walk, learn or anything in between. The not knowing what is on the horizon has been a difficult part of the journey. But Mykal is the most incredible young man. His enthusiasm for life is contagious, loves being the center of attention and he is incredibly brave – which he needs to be because of all the surgeries he’s endured and he has to miss out on so many things that other children take for granted every day.
While disability doesn’t define who we are, our family revolves around Mykal’s needs. We employ support workers who are in and out of our house almost every day to help us, we have numerous appointments we have to schedule around work commitments; GP, hospital specialists, therapists (occupational, physio, speech language), nurses, equipment (wheelchairs, hoists, commodes, standing frames), school and that’s not to mention the hospital stays and the convalescences and monitoring/changing his MIC-KEY button & skin issues. Then there’s the recruiting and training of new support workers and the rosters and working around their lives. Holidays have to be carefully planned, the beach is out as are most holiday homes and for us to be able to relax we need a support worker to come away with us which adds to the cost and logistics. Even going out for a meal requires extra effort. Sometimes things go easily, we have a year without surgery and a great teacher, or a few months where no support worker leaves or equipment needs replacing. These are the times when his disability becomes a smaller part of our lives, but other months and years it is overwhelming – especially when Chris and I have jobs and responsibilities, including the needs of our daughter.
While we are blessed to live in NZ with the health system and community that we have here, Mykal’s disability is more disabling due to the way the system is designed, because of people’s attitudes to disability and our environments that are inaccessible. Being an advocate for Mykal is a role I’ve had to pick up for him, as he faces difficulties and restrictions which are unfair and unnecessary. Sometimes getting the support or equipment we need has required more energy than I’ve had and created huge pressure on our family.
I’m a future focused person and while there are a lot of barriers for Mykal to reach his potential, I will continue to advocate for him to have a great life and continue to not accept the status quo because what mother doesn’t want the best for their child? As our kids are talking about what happens when they leave school, we realise our next big hurdle is approaching quickly. Mykal may not have every option open to him, but we’ll do everything we can to find the possibilities for him to have the best life possible.”