I have had a number of articles printed all over the world recently, each of these has been an expression of my emotions on this journey of raising a kid that is a different type of perfect. One article “My Daughter Is A Different Type Of Perfect” went viral and we lost count of how many times we estimate it had been shared after half a million, half a million!. Wow if only I charged $1 per view.
Each story (like this one) is written in my spare room, my office where I run my charity SmileDial. Each story tales only moments to write, I do not think of content, plot or any outcome I just write what is in my head. Words just fall out as fast as I can type them (with one finger typing is a long process).
Many of the words that have fallen out my head deal with the struggles families like mine face, they talk about the bad times, the feelings of being alone and the reality that some days bare just shit, yip shit. It is so easy for me to write with my one finger about the bad times as these times bring so many emotions to the fore, it is easy to bitch and moan, easier than writing about good stuff. I have a tendency to be a little “dark” at the best of times, my name actually translates to the The Dark Robed Dark One, cool. I paint, or I used to when I had time mostly using black and white as my colours (my son tells me black is a shade not a colour?). I like dark stuff, always have.
What my writing has not expressed is the amazing joy raising a child with special needs can bring, perhaps I need to take time to look at these beautiful moments and maybe I should buy some bright yellow paint for my next painting, oh god no please allow me to stay dark in some places bright yellow paint is not my thing. Every parent has great moments with their child, amazing moments, life is awesome and beautiful and perfect (oh look a butterfly) moments. Having a child with special needs is no different, the moments may be but the joy we get from them is no different and in some cases even more magical and butterfly like. Butter fly moments, awesome that can be the title of this blog post.
I have a 17 year old son, I love him with all my heart and I am so proud of him. He was born premmie and spent a few weeks in an incubator after his birth but otherwise he is just a normal teenager. I experienced his first words, steps, food, pooh on a potty and all the standard stuff, I recall potty training him by peeing with him on the lawn outside oh the butterfly moments. I have watched him grow into an amazing young man and soon he will go into the world to find his life and begin his paths. This is the way of the world, this is the way things should be and this is the wonderment of having children.
My different type of perfect daughter is well, different. She is three and a half and has not taken that first step yet, she speaks only a few words and well there is all types of things going on and so many “normal” milestones have passed without her achieving them but then again they are not her milestones, they are the “normal” milestones. My daughter has her own milestones, her own goals and we adjust the rules and timeframes to suit her, we can do that if we want.
When my daughter reaches a milestone we cheer like it is um, 1999? and we feel such joy it can bring us to tears (not me I do not cry I am dark remember). These moments are all the more poignant because often we never expected these milestones to come at all, if you believe it will not happen then it does you tend to get excited “Holy shit did she just do that, come here and look at this, do it again, DO IT AGAIN! Woo Hoo good girl!”. That may be because she just opened her hand, the one that does not work well, these tiny triumphs that mean so much. Woo Hoo.
I spoke to a dad recently about his child with special needs, we spoke about how we love our children. He said he loved his different type of perfect child in a different way but could not explain why or how. We often do love our kids differently, not more or less than each other but different. I love my 17 year old son with all my heart and soul as I do his little sister. I guess the love I have for her is different because my role in her life is different, she is so much ore vulnerable and needs me in different ways. My son had the luxury of being able to be independent, a luxury my daughter does not have. He will soon be a man living his life as he sees fit, my daughter will require me to be with her for many many years (maybe forever) to help her do so many things. This is the reason the love is different, my son no longer needs me to be there all the time, my daughter depends on me being there al the time.
Everyday I hope for a moment, a woo hoo moment with my daughter. These come on a regular basis and each moment can be tiny and pass quickly. As I type I can hear her singing with her mum in the living room, she is having a good morning and not screaming WOO HOO (for her and us). This morning she gave me a hug when she got out of bed, she signed I love you last night, I heard her laugh this morning butterfly moments come always.
The struggles of raising a child with a special need are immense but the rewards are amazing, they come maybe less often and slowly but they come. I love my children, each has shown me so much each in a different way.
I am going to sing with my daughter now, today is a good day and I want to play with her.
Each Child is as it should be
There is a plan for everyone and everything
Even when all seems random there is purpose
If a child cannot walk, carry them
If a child cannot speak, find a way to hear them
If a child cannot live, remember them
You can ask why but there is no answer
Accept the now and live for tomorrow
Remember good days especially on bad
Never say you can’t
You will as long as you must
Never give up hope
That is all you have
Enjoy the tiny triumphs
Wish on as many stars as you want
The stars are endless
Hold those you love tight
Tell them when everything is not ok
Accept help, it does not make you weak
It makes you stronger
Never compare your child to others
This is a road thwart with disappointment
Cheer for what your child achieves
Do not feel sad for what they cannot
Know they adore you, unconditionally
You have been chosen because you can
A child’s soul knows no disability
It is as pure as any other
Your child does not know they are different
They will ask why one day,
Answer with the truth,
They are a different type of perfect
When they ask cross that bridge
Do not worry for that time now
Just another bridge in this journey
There are many bridges
Each leads somewhere
Even those that lead nowhere
Nowhere is still a destination
Some over fire some over water
Some stained with tears, others laughter
Hold the rail and walk straight and strong
Keep going, just keep going
Especially when you think you can’t
Find what makes you smile
Tears will come, as will anger
You are tired and your heart is broken
Ypur heart will break again and again
Until the tiny pieces fall like sand through your hands
Surround yourself with friends
They can help you pick up the pieces
Find light in the darkness
You need to open your eyes to find it
It is there, among the tears
In the pieces of your heart
In your child’s laughter
I have a child with special needs. I am that guy, we are that family.
The ones you see at the park and you think, “I wonder what is wrong with that kid”. That is us.
I knew nothing about people with special needs until I had one, a child with brain injuries, a “special needs” kid.
I hate all these terms: special needs, disabled, brain damaged. All these terms seem like dirty labels and the words fall out of my mouth like chewing on dry sand.
It seems stupid that we have to label anything that is different with a term deemed politically correct, yet each term is nothing but another way to let people know my daughter is “different”.
I like the term a different kind of perfect. My daughter has Cerebal palsy and she is a different type of perfect.
People tell us we are amazing for what we do for our daughter. They say we are strong and she came to the right place.
They say these things when we catch up with friends or family, usually on a day when we are having a good day. That is the only reason we left the house (could leave the house).
They see her when she is ok, when the pain is under control and she is happy and smiling. When she is like this we have a moment to catch our breath, be normal.
What they do not see is the times when I am not strong, when it is all too much and I want to scream at her to stop: “Please can you just stop and be normal, please.”
They do not see her when she has screamed for hours, days or sometimes weeks. They do not see the times when we can just hold ourselves together and we are not strong.
I wonder if they notice how we have changed. Do they see that behind our eyes there is a deep sorrow? A sorrow that has been there so long it is impossible to comprehend being the people we once were.
Sometimes it feels like the light inside us has gone and we just stumble from one day to the next waiting to see what type of day awaits us.
I worry about her, I worry about my partner and I worry about me. How long can we do this, is this forever?
How can people do what we do and not go insane? Years and years facing the impossible and fighting to get through today knowing the same awaits tomorrow.
We cling to the good moments as much as we can. These moments are sometimes so fleeting and rare but when we have them we see a glimpse of what could or should have been.
When she smiles or laughs, when we can open the windows in our house on a hot day – on bad days the screams are so loud we are scared the neighbours will hear.
We are not strong or awesome, we are just people who have to do whateer it takes to get through the day.
We yell, we say awful things in whispers or under our breath, too scared to say them out loud. Moments when we just wish our kids were normal and we are not those people with the special needs kid.
I try to forget she is different. At home, in our own space it is easy to believe this. As soon as we venture out past our gate these illusions are shattered.
Every time we see other kids, other families doing normal things, a little part of me aches and I wish that we were not the ones with a child with special needs.
Our daughter has taught us many things. It is important to keep positive and seek for the joy when you can find it, that can be the only thing keeping your head above the water.
I am tired, I am having a bad patch and I am unsure if I want to scream, get drunk or most likely just pull myself together and get on with it.
That is why people think we are strong, because we just get on with it, we have no other choice. Keep going, just keep going.
If I was strong, I would not have bad days. If I was strong, I could deal with the emotions in my life. I don’t. I bury them and pretend they are not there.
I have no time for self pity and I do not have the luxury of having time out. I have no choice but to take a deep breath and keep going.
I am not amazing, I am grumpy, I am tired, I am scraping through one day to the next. I am just a person that became the parent to a different type of perfect child and sometimes I wish I wasn’t.
Sometimes I wish things were different, my life was how it was supposed to be (or is this how it is supposed to be for me?).
People say God has a plan and he never gives you anything you are not strong enough to deal with. If there is a God, I want to talk to him as I have a few things to tell him about his plan.
I wonder what today will bring. Will we have a good day? I hope we have a good day.
One good day can carry me through a week of bad days. As long as we have a good day I can regather myself, take a deep breath and start again.
Who knows what we will face today, tomorrow or forever, only time will tell.
I am that guy at the park with the daughter with special needs. I am the parent to a beautiful daughter who is a different type of perfect.
Ground hog day. Over and over again today, the same as yesterday, and tomorrow no doubt will be the same as all the days before. More screaming and another day listening to my daughter scream my name. They said she may never talk, so far they are almost right, but she can speak a few words: Mumma, Daddy, Nana are spoken clearly, other words are not clear. We can understand them but no-one else can. I want so much for her to talk. Now I curse the fact she can speak my name as when she screams she now screams DADDY or MUMMA. Hearing your child scream your name as they are in pain is one of the challenges we face, one of the many with this child who is a different type of perfect. For three and a half years we have searched for answers. We still are searching and we have yet to find why my daughter is in so much pain. Out of all the challenges we face with her this is the hardest. She is in pain and screaming my name and there is nothing I can do to help her. This is a nightmare that continues every day. I can accept her other disabilities; her partial paralysis, her eye problems, the fact she cannot walk, she may never talk, her multiple allergies or that she may never lead an independent life. These things are ok, I am at peace with these things, but I can never be at peace when she is screaming my name and I cannot help her. I just want to make her ok. I want her to stop, I want her to give us a good day, we have not had a good day in a long time. A day where we can have a tiny triumph, something that will show us she is getting a little better. Anything, an extra step in her walker, playing music by hitting pots on the kitchen floor, laughing for a day, not a moment between the screams. Just one full day when she is ok. I want this for her but I am arrogant enough to want this for me as well, some normal in this abnormal world I live in.
We see what she could be if the pain would stop, these fleeting moments of tiny triumphs. Then these moments pass, the clouds roll back in and I become that dad again, the dad to the little girl trapped in a body riddled with pain. I have started counting number plates. Every time there is a car in front of me I have to add the numbers up. I started doing this about eight months ago. At first it was a game to keep me amused at the traffic lights but it has taken a turn. Recently a car turned before I had finished counting, I had to turn as well so I could finish the plate. Oh dear, that does not seem right. Every parent to a child that is a different type of perfect must have some “issues” in their heads, none of us can deal with what we do and not have it affect us at a deep mental level. Each of us began our journey with a prognosis delivered to us by a doctor with a clipboard. I am sure the doctors do not like the part of the job when they have to tell a parent your child has cancer, Cerebal Palsy, Down Syndrome or any number of things that make our kids a different type of perfect. This is the first step in a journey that none of us were expecting, that happens to other people not us. How did we become those parents, are you sure? Please check your notes again. The nursery we had ready for our baby will stay empty, we will be in neo natal intensive care for weeks, months or sometimes years. The dream of holding your baby, taking them home, showing them to friends and family is gone. Instead you sit in an intensive care unit with your head fogging the plastic box holding your child as you cry and ask over and over again, why? We are so very lucky that we bought our baby home, too often parents are given a brown paper bag with PATIENT PROPERTY written on the side. In this bag are your child’s belongings, the few things they have acquired. A teddy bear from a distant relative, a gown they wore, a congratulations card from a friend. These things are presented to parents who are going home to a nursery that will become a shrine not a child’s room. I fight for my daughter, that is my job and I will fight to the death for her and my other child. I fought the hospital that covered up their terrible mistakes that caused my daughter’s injuries. I fought for three years before they said sorry, three years of fighting a system that worked so hard to remove themselves from blame. I have a two-paragraph letter saying sorry for what they did, two paragraphs written by someone who sees my daughter as a statistic and my eagerness for answers as something to talk about with the hospital lawyer. They broke my daughter, they broke my daughter. So I count number plates. This is the manifestation of the past three-and-a-half years. Counting number plates is ok, it does not affect anyone else, it helps me feel better (I think that is why I do it) and it could be worse. My partner and I are beating the odds, we are still together when 85 per cent of couples in our situation aren’t. We are in the 15 per cent that fight through this as a team, we are there to hold each other up. I feel for the solo mums or dads who have to face this alone. How can anybody do this alone? I started a charity to support families like mine (SmileDial, support that I needed so badly (need so badly) but could not find. In three years, I have spoken to thousands of families and do you know what I have found people need the most? Connections with others. Raising a child that is a different type of perfect is difficult and it is lonely, people feel lost and often there is no where for them to go. Imagine not being able to leave the house because your child is too ill, they scream every time you leave the house or the stares from people are so daunting it is easier to hide. I took my daughter to the park when she was young, we were sitting on the ground and another little girl came over. My daughter was giving her a hug when the girl’s mother stormed over and dragged her child away telling her “you can’t play with this one”. This one? I have worked so hard to help families like mine, I have a Kiwibank New Zealander of the year medal in my office, I have countless newspaper articles written about my work and a recent article I wrote went “viral”. What I don’t have is financial support. In April, my money runs out and my charity will close. It seems the little hard-working charities do not get the support they need even though they are on the front lines, we are in the trenches. We are people, we all had “normal” lives once. We were professionals, we would go out with friends and we would live lives just like everyone else. Now we are not “normal” we fight for answers. We are tired like you would never believe, we are sad to a depth that reaches deep into our hearts. Every day our hearts break a little more until the pieces are like grains of sand. We wait for the tiny triumphs, we pray to every conceivable god that today will be a good day and often we are wrong. If you know someone who has a child that is a different type of perfect reach out to them. Visit them with a pre-cooked meal, buy a treat like ice-cream, maybe take a bottle of wine over and wait until the kids are asleep and drink it with them. Stay as long as it takes, put up with the screaming, or the medications, or the therapy. While you wait, vacuum the house. I know it is hard to be in a place where the child is a different type of perfect, you can stay for a day or a night (we are here every day and every night). Don’t assume the child screaming at the shops is a brat. Maybe they have an invisible special need that makes them sensitive to sound and a song on the radio has set them off. Don’t give a dirty look, smile and ask if you can help. You can put up with the noise for 10 minutes, we are here every day and every night. Every single person is a fall and knock on the head away from being a different type of perfect. Thank your lucky stars I am the parent to a kid that is a different type of perfect, thank your lucky stars it was my daughter in that delivery room where a doctor screwed up. Thank your lucky stars you are not hoping for a tiny triumph and counting number plates. I should mention that I love my daughter and my other child very deeply. I can accept all her different type of perfect challenges, I really am at peace with what we face except for the pain. If the pain stops I can breath and my girl can become all that she will be. In my dreams she walks, runs, talks and I only want to walk her down the aisle one day. I want her to say I love you daddy. I want to hear my name being spoken with love not called out in pain. Kelly “Boy” Dugan
Loneliness, the hardest part of being a parent to a child that is a different type of perfect. Loneliness is a terrible thing and so common in families like mine, families that have a child with a special need. I am lonely, a different type of lonely but lonely none the less. In a room full of people I am lonely, at home with my family I am lonely and even when I do go out I am lonely.
This is a different type of lonely and as I write I am already thinking is lonely the best word to describe what I am feeling?. Other words spring to mind like lost, floating and maybe lost in a strange thick fog all of which describe my feeling in one way or another, maybe all of the above is the best description. I am almost four years into this journey of being a parent to a child with special needs, the things that were so alien in the beginning are now the normal, a different type of normal raising a kid that is a different type of perfect. May that is the word I need, different? I am different?.
There is no doubt I am different than I once was, that guy the “before” guy was different in so many ways. Perhaps my loneliness is a side effect of the changes I have seen happen to me, I say seen as none of these changes were made consciously I did not make an effort to become “this guy”. I seldom reflect on who I was, that is a million years ago now and that guy is just a character in a photo album, like a twin I have not seen for many years. Every person changes especially when they become a parent but they can still hold on to a little piece of who they once were. Eventually the baby grows, the parents can go out and enjoy the lives they once had and be the people they once were. Eventually they become almost the entire person they once were, this is a luxury that I do not have. I cannot step back into the “before” days, I cannot hold on to a piece of the past and I cannot recognise the twin me in the photos. This is the centre of my loneliness, this is what the psychologists will dig for this is the reason I am lonely, this is why so many of us parents to child with special needs feel this way.
My phone seldom rings anymore. If it does it is from people I have met after my daughters birth, my new friends the people who are like me, we are the “others”. The ones who cannot go out, the ones who spend to much time in hospitals, the ones who bury their children or the ones who are lucky enough to have their children with them but facing hurdles only us “others” can comprehend or understand. It is the “others” who call me, message me or ask how it is going, the “before” friends seldom call anymore, loneliness?. I get why people do not call, what is the point in asking me to go out when the answer is 99% of the time I cant, what is the point in visiting when I am too busy looking after my daughter to sit in the sun and drink beers with you, why would anyone want to hang out with me when they also know I am not that guy anymore, the “before” guy is gone and that is who they want to visit. Sorry but my twin is not home, can I make you a coffee?
The “before” guy was great, I miss him as well. He would always be at the bar or concert and no doubt keen as to come to your BBQ, he was funny and people seemed to like him. My home was always full of people, I lived at that house where there was always something going on, people would turn up with cases of beer, bottles of red wine and stay all day and all night. The house was full of laughter and friends, I was happy and I was not aware that I was only going to be the “before” guy for a little while. Now as I write this I do so as the “after” guy.
Being lonely is almost a self imposed exile from the “normal” world. I have nothing in common with most people now, I do not know what to say and seem to have lost my ability to socialize I feel it is all a front. I feel like a bad actor playing the role of “before” me, I feel like I have to be that guy. Sometimes look at myself like an out of body experience and think wow, what a dick. I am trying so hard to fit in where I just don’t anymore. The reality is I am lonely, this is perhaps because my “before” me was always surrounded by friends and laughter and now this is all changed. My life is now full of screams from my child, visits from therapists, talking to others like me and trying to get through one more F**king day.
Being this guy is difficult, the only people who understand these words and these feelings are the “others” facing similar journeys. This is a unique life we all lead and trying to explain the depths of our struggles can never be expressed in mere words. Others can see into our lives for brief moments, they can see the struggles but they then also get to say good bye and as soon as the door closes behind them they can venture into their “normal” lives. They will soon forget the sounds of the screams, the smell of the hospitals and the look of frustration in our eyes. Even when for that moment they are in my world with me I feel alone, I know they will soon be gone and I will face this by myself.
I am not the “before” guy, I am the “after” guy and I am lonely, lost in a fog and floating from one moment to the next.
Kelly “Boy ” Dugan
So peaceful here
Watching you sleep
Quiet now in slumber
I wish to stroke your face
Hold your tiny hand
So close to me
Yet a million miles away
The machines beep
Each sound a beating heart
How long now?
A day, a night a lifetime?
My breath fogs the glass
Between me and you
Tubes, oh so many tubes
For one so little
You are strong
I whisper again
Don’t wake now
To see my tears
Stay in your dreams
Run with unicorns
Until you wake
To find me
Yet a million miles away
Here my love always
This picture was taken just before students rioted outside Pusan University Korea. We stumbled across thousands (yip thousands) of riot police who were more than happy to get some pics with us. The riot fizzled out but we had an amazing few hours. A matter of weeks after this picture was taken I was arrested for working illegally, I had no Visa. I was placed under house arrest for one week before being flown home, I was escorted to the airport by armed police, interrogated in a Karaoke bar and my boss turned out to be a crime lord who demanded I pay him $1000 before leaving Korea. That is a long story that I will tell eventually.
A Christchurch family are frustrated they had to fight for almost three years to receive a formal apology from the Canterbury District Health Board after their baby was disabled during a botched delivery.
Health and Disability Commissioner Anthony Hill released a report this week criticising a junior doctor and the board for failing to provide appropriate care to the first-time mother during the birth of her daughter in August 2011.
The family, who did not want to be named to protect their daughter’s identity, said the report “sugarcoated” the extent of her injuries, and they were angry it had taken so long for their complaint to be resolved.
Their daughter suffered a fractured collarbone during her complex instrument birth, as well as a brain bleed and severe lack of oxygen.
She had since been diagnosed with cerebral palsy, and would need multiple operations to improve her vision.
It was likely she would also need surgery on her weakened left leg, and her parents feared she might never learn to walk or talk.
They hoped she would learn those skills, but said her future was still uncertain.
“We’re already on a rollercoaster for the rest of our lives. We didn’t need to be on this one to fight for answers,” her mother said.
The family said they had forgiven the obstetric registrar involved and respected him for his efforts to apologise directly and complete further training.
“My problem has always been not with the hospital or the staff; it’s been with the procedures for finding out what went wrong. I think it’s our right to know that,” her father said.
The board completed two internal reviews into the incident soon after the baby’s birth but the family were concerned they contained incorrect details and took their concerns to the commissioner.
Hill’s original report was rejected by the board and the debate went “round and round in circles for a long time”, the father said.
The final report still failed to acknowledge the extent of their daughter’s injuries, he said.
“It’s like a guy getting his leg blown off and [they’re] saying he stubbed his toe or slightly injured his leg. I just want it to be accurate.
“Mistakes happen; it’s how you deal with those mistakes. We shouldn’t have to fight so hard to get an apology.”
The board admitted it failed to protect the mother and baby and to support the doctor involved, leading to a “tragic” outcome.
“We deeply regret that on this occasion we did not reach the standard of care that the families of Canterbury are entitled to expect and that we endeavour to provide,” chief medical officer Nigel Millar said.
The board had since introduced new guidelines for the supervision of registrars, a new training programme for staff carrying out instrument deliveries, and weekly meetings for reviewing complex labours that result in emergency caesarean sections.
Action for Maternity spokeswoman Jenn Hooper said her charitable trust had helped about 650 families with similar experiences fight for answers since 2011, including the family of Casey Nathan, 20, and her son, Kymani, both of whom died after the birth in 2012.
She called for the creation of a perinatal database to record what happened to mothers and babies, estimating it would cost $5 million to “take the blindfold off”.
My daughter is not DISabled perhaps the perceptions of society are the only things that make her seem less ENabled (by societies standards).
Perhaps her being excused from the “normal” existence of us “normal” people is an amazing freedom we will never know? I know people in wheelchairs who live more than most if us ever will.