As I sit and write this I am in Ward 25A of Auckland’s Starship hospital. I am one of the dozens of parents who will be bunking in next to their sick child tonight. We are referred to here as ‘frequent flyers’. This is our second long-term stay already this year, on the back of eight stays last year. We are by no means the longest residents here but it is fair to say we have had our fair share of Subway from the level 5 food court.
Our son Devon has Cerebral Palsy level 5. The worst kind. His underlying condition is called Polymicrogyria, or PMG for short. I can’t really be bothered going through what that is but if you consult with Dr Google he can sum it up for you.
I will never forget the day we found out. Devon was only 9 days old and was still not feeding. He had a nasal-gastric tube down his nose getting some formula into him but was still not interested in latching to the breast. He had a pretty dramatic entry to this world where he basically got stuck and had to be yanked clear. As a result, his head and face were badly bruised and painful. This was the explanation as to why he wasn’t feeding but even if that was the case after 9 days he should be latching. The doctors decided he needed an MRI to see if there was another reason, sadly there was.
My wife and I were called into a small interview room in the PICU ward at Auckland Hospital with 4 specialists. The lead doctor said “There is no easy way to say this so I will just come out and say it. Devon has a severe brain malformation”. My wife burst into tears immediately. I, on the other hand went silent as I tried to process the information. This kind of stuff doesn’t happen to me. This is the kind of thing you read about in a woman’s magazine about that amazing family that have the special needs kid but still run marathons and climb Mt Everest. I can’t father a special needs child. I am not that person.
“What does this mean?” I asked them. “Devon will most likely never walk and never talk” was the reply.
We walked away from that meeting in a tailspin with tears flowing down our cheeks but tried to cling onto to any ounce of hope we could. “Maybe it won’t be that bad”? we thought. “Maybe he will just be a bit delayed developmentally?” PMG has all sorts of different levels and those with the mild PMG can live quite normal lives. “Maybe that is what our son will be like?” It is not.
The first year was tough. We had friends who had children around the same time as us and we could see them rolling, sitting, crawling while our son just lay on his back. More and more people got involved in our lives. Physio’s, a Paediatrician, nurses, speech language therapists, occupational therapists, dietician, eye specialists, orthodontics, orthopaedics, a para-professional, wheelchair specialists. There was a point where every second day we had someone coming to see us or we had to go to them about Devon.
The list of conditions Devon has is truly mind boggling. To give you an idea he has Nystagmus in his eyes. He can only see to about 6-7 metres and can only ever see through one eye at a time but that wouldn’t even be in the top 10 concerns we have about him.
That fact is even though that first year was tough they will only get tougher. While TDB (typically developing babies) get easier and easier to look after as they grow and gain independence our boy will get more difficult. As he grows he gets harder to manage, he needs more support equipment, he gets heavier. Already we have a wheelchair, standing frame, bathing equipment, suction pump, sensory room and a paediatric bed. Soon we will be having to add a hoist and a mobility van to our collection.
How do we get by? By taking each day as it comes, crossing each bridge as we get to it. It is the only way. If I thought too far into the future about how I will be changing his nappies for the rest of my life or how I will manage him when he hits puberty I think I would break down. Don’t get me wrong there are dark days. Days where you catch a glimpse of his worsening scoliosis or when he accidently pulls out his feeding tube and his stomach contents spill out everywhere or when he vomits uncontrollably but thankfully I have my wife for support. When I am down she is up and vice versa. The method I have found that works best though is not to think about it.
I do on occasion think about what I miss out on. I won’t get to kick a ball with him in the backyard or teach him the perfect cover drive. I won’t be teaching him to shave or how to talk to girls. I won’t be having a beer with him when he graduates or asking him how the wife and kids are.
Every now and then I think about how I have been robbed and how I would give everything I have for him to be ‘normal’ but that’s simply not possible. He will never walk a step. He will never say a word.
That all being said I am not after sympathy at all. Please do not feel sorry for me. I am surrounded right now by parents in far worse situations. We all have sh** to deal with in our lives. It is all relative.
Whenever I tell my story to people the most common response is “Ï don’t know what to say”. That’s ok. You don’t need to say anything as there is nothing you really can say. I get it. I wouldn’t know what to say either. So, let’s talk about sport instead aye?
In this game of life, we have to play with the hand that gets dealt to us. We all hope we get a straight flush but sometimes you get dealt a pair of two’s, or worse. That is what we are doing. Playing with the hand we have been dealt.
Despite all his issues I love my boy very much. He is a delightful young man. His smile lights up a room. He has every right to be the grumpiest so and so of all time with what he has to go through, but he isn’t. He loves music, rides in the car, books and Paw Patrol. He is ticklish and has the most infectious laugh of anyone I know.
My wife and I are not extraordinary people. We are very much everyday people that have been put in an extraordinary situation. I always get a bit uncomfortable when someone says what an amazing job I am doing raising Dev. I don’t think I am doing an amazing job at all. I think I am doing what any parent would do in these circumstances. It is not easy by any stretch but it’s amazing what you can do when you have no choice.
MIKE ROKE IS TECHNICAL PRODUCER FOR ALISON MAU, DRIVE 3-6PM ON RADIOLIVE
source: data archive