I guess the same can be said for having any child, whether they have special needs or not... but the big difference is that when you have a child with special needs, you usually feel all of these emotions at once... and they conflict and battle within, trapping you in a hair raising, spine tingling emotional roller coaster as each emotion battles for ultimate supremacy.
When you have a child with a rare condition that is considered life threatening, it feels like each one of those emotions is intensified a thousand times over.
We become hardened and battle weary, at least to the outside observer. We hide our scars along with our tears behind a false facade of determination, yet behind every smile and laugh, there is always that little bit of doubt, that little fear... that little voice whispering in the deepest, darkest recesses of your mind where only your worst nightmares dwell.
I remember when Nicola was 3 weeks old. We had done our journey in NeoNatal Intensive Care Unit and Special Care Nursery and we were being discharged to "Parentcraft" for 24 hours of observation. This strange ritual was allegedly to make sure we were capable of parenting a baby before being discharged, something I found somewhat ludicrous considering that I already had two other babies at home waiting for me.
We were sitting in Special Care Nursery and they were doing her discharge assessment and then Dr Az turned around and told me that he thought she had a heart murmur.
Well, that was it. I broke down and I just sobbed. My baby had a heart murmur, she had a defective heart... after 3 weeks of all tests coming back 'normal' or with nothing found that to be told there was actually something wrong just shattered me, and really, in the grand scheme of things, it wasn't even something overly serious!
Oh how we change...
Since then we have endured countless more diagnosis', not to mention surgeries, and procedures. I have held my daugher as she battled at the brink of death, I have fought doctors who didn't believe in her, and I have seen her defy odds and create miracles that no one can explain to me...
I have experienced a level of intensity of my own emotions that I never knew to be possible... an intensity so totally overwhelming that it is actually terrifying.
I have laughed when I wanted to cry, I have cried when I wanted to scream, I have held fast to hopes that seemed impossible... and I have lived with the mantra, "There but for the grace of God go I!"
If I could take everything I have learned in the past 18 months and turn it into one statement to give to any one who is about to embark on this journey, it would be simply 'do not be afraid of the darkness'.
No matter how dark moments of my life may be, they are only moments, and those moments shall pass. There is always a light to look toward...
"I will love the light for it shows me the way.
Yet I will endure the darkness for it shows me the stars..."
With Love...
