A Christchurch father has written a heartbreaking and honest account of what it is like to raise a child with special needs.
Kelly Dugan, whose four-year-old daughter Lucia has Cerebral Palsy, says he wrote the piece to share his story, and show the emotions and challenges families in a similar position struggle with.
Cerebral Palsy is a disorder which affects movement and posture that little Lucia developed during her birth. Symptoms can be different for everyone, but it affects the left side of Lucia’s body.
Kelly says the moment his little girl was diagnosed changed everything for their family.
“The impact on our family was massive and to this day we adjust every aspect of our lives to ensure we can provide everything she needs now and maybe forever.”
After experiencing what life is like with a child that is a “different type of perfect”, Kelly started SmileDial to help other families cope. The organisation provides support and understanding to families around the country, which the dedicated dad says was lacking when Lucia was born.
“I wrote this to show other families they are not alone in the way they feel and it is OK to feel such frustration – and joy. I hope this lets them know they are not alone and also gives others who do not know our struggles an insight into our lives.”
Here is Kelly and Lucia’s story:
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 cerebral 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.
No-one understands the pain and the sorrow we have for our children, they will never understand what challenges we face everyday.
We are not strong or awesome, we are just people who have to do whatever it takes to get through today.
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.
To find out more about SmileDial, click here
