A few weeks from now, we will celebrate my daughter's fifth birthday.
This is a milestone for any parent, and I think back to 13 years ago when my son reached this milestone. I recall watching him walk away from me -- his backpack starting at the top of his back and finishing at the back of his knees -- with a sense of pride mixed with fear and, of course, a sadness that my boy was growing up.
He did not share such emotion, and amidst his excitement he did not even give me a kiss or say goodbye. He was ready and had no time to hug his teary-faced Dad... he just walked with a sense of purpose through the school gate.
In a few weeks my daughter Lucia will head off to school. Again I am full of pride, fear and sadness, yet this time these emotions run deeper and fear seems to be the overwhelming one. You see, this time it is different because my daughter is different. She is a different type of perfect. She has special needs.
My daughter has many labels, and it is only when I really need to that I let the medical jargon come out of my mouth. But now is such a time. Cerebral palsy, a brain injury that affects the left side of her body, partial paralysis, brain damaged, special needs, disabled... call it what you like. The term I use is a "different type of perfect" because that is what she is.
Five years ago, the doctor delivering my daughter had a "bad day". We all have bad days at work, but unfortunately, in his line of work, a bad day can cause a ripple effect that creates waves for many years and, in my daughter's case, a lifetime.
We are five years into this lifetime now, and looking back on those early days I have no idea how we made it to discussing her first day of school. Such things were a million miles away... dreams we were too scared to even dream in a time when we were trying to get through the next 30 minutes.
But here we are, five years since the day we clung on by the skin of our teeth until we thought we could not hold on any longer. The anger, the sorrow, the pain... being forced to become people we never knew we could be. We are almost there. I don't know how we did it, but we are here, getting ready to take our daughter to her first day at school.
How do I prepare my child for the bullying she may face because she is different?
My daughter will go to a "normal" school, she will sit in a "normal" class with "normal" kids because we are lucky enough that she can. I often explain to people that her brain is perfect except for the little (but important) bits that control the left side of her body. Besides movement and speech issues she is a "normal" little girl. She is excited about school, she has friends there that will look after her and I am sure she will be fine -- these are the same thoughts I had when my son started.
But behind the excitement of making it to this stage there is also a feeling of fear that I cannot shake. "What if?" questions that cannot be answered.
I wonder if someone will bully her for being in a wheelchair. I wonder if she will fall behind in her work because she cannot express the words and thoughts in her head. I wonder if she will be accepted and I wonder if she will face, for the first time, a glaring realisation that she is different.
How do I prepare my child for such things?
I try to focus on the positive (a trait that is a necessity when raising a child with special needs), but late at night, when everyone else is asleep, I let my other thoughts out. I have no choice but to face my fears -- these are my issues, not hers.
I am fearful she will come home in tears because she has been teased. I am fearful that I will have to hold my little girl as she becomes aware that she is not like the other kids. For the past five years I have not thought such things, as these thoughts were less important at the time.
I have faced challenges on her behalf for five years -- she has not had to deal with the doctor's prognoses and medical jargon... we took those fears for her.
I know that soon she will have to face these things herself, and her ability to do so is out of my hands. If I discuss with her what can go wrong, I am only placing a fear into her that does not exist yet. Maybe my fears will be unfounded and I will not have to hold her as she cries. Yet I must prepare myself if that happens.
As with every other step in our journey, nothing is as simple as it seems or should be. It is a shame that so many milestones she faces are tinged with a fear for the outcomes.
But for each emotion that is diminished by this terrible fear there is one that is stronger and brighter: pride. Pride for her to be at this stage and pride for her mother and I for working so hard for so long to get her there.
As I walk away, there will be tears in my eyes and fear in my heart but there will be an amazing feeling of accomplishment that will shine brighter than any negative thoughts.
She did it. We did it.
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This is an edited version of an article which first appeared on stuff.co.nz.