Published on stuff.co.nz 4 February 2015
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.
When the clouds clear and she finds some peace we see her, the real her, the beautiful little girl that loves to give hugs, laughs at Mum and Dad’s dancing, reads books and plays with her Thomas trains.
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, 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 has gone 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.