Behind the SmileDial

NOWHERE IS STILL A DESTINATION

Kelly “Boy” Dugan

It was only when I realised I needed nothing that I realised I had

EVERYTHING.

Kelly “Boy” Dugan

The Higher the hope

The Further the

F

A

L

L

Kelly “Boy” Dugan

Hey Lord it’s me again, thought I’d give you another call
You see, I been leaving messages but I don’t hear from you at all?
What’s the point in calling Lord if your not ever there?
What’s the point in leaving messages if you don’t seem to care?
You see, my babies dying my girl is crying …
There must be something you can do?
I keep leaving messages but I never hear from you
I am falling apart Lord, we are splitting at the seams
What’s the pointing in calling, if you don’t clear your message machine?

Kelly “Boy” Dugan

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

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.

Kelly Dugan