Two years ago today I was told that I was going to be having my baby in 24 hours. I was 34 weeks and 6 days pregnant. The radiographer and the obstetrician both assured me that the baby would be fine… after all, she was almost 11 pounds.
What could possibly go wrong?
Oh how I wish I had known…
I wish I had known that minutes after my daughter was born she would have a seizure and stop breathing. I wish I had known that the next 8 months of our lives would be utter chaos and turmoil as we flitted from one specialty to another, one admission to another, one complication to another, before everything culminated in a diagnosis that rocked the foundations of our world.
I wish I had known then how drastically our lives were about to change… that I would never again feel like a competent and able parent when it came to my daughter… that I would sacrifice everything for a better chance at life for her… that my older daughters would miss out on a normal childhood… that I would become an expert in medical conditions that I never knew existed, and had no desire to know about…
Oh how I wish I had known…
While in hindsight I probably wouldn’t have changed anything, perhaps it would have made me a bit more prepared… for the constant battle to gain access to a health system that seems to constantly shut us out… for the heartbreak I would come to feel as I cradled my daughter as she screamed from a pain I could not ease… for the loneliness I would feel as I walked this path, virtually alone… and for the fear I would come to feel every night as I fell asleep wondering if my child would wake the next morning.
Yes… two years ago today, I was told my life was going to change. I just had no idea how much.
Now… on the eve of Nicola’s second birthday and I look back over the past two years, and I can’t help but marvel at how far she has come. She has survived odds that have seemed insurmountable. She has lived with complaints that drive grown adults to tears, yet she does so with a brave face and a smile, because in her little life she has never known any different.
I watch her interact with her sisters, laugh with them, touch them, play tea parties and ponies with them, and I can’t help but smile. I watch her signing ‘hello Daddy’ or ‘hello Mummy’ and it fills my heart with happiness that I never knew was possible.
It is so confronting, seeing other children her age, or even seeing her sisters, and knowing that Nicola will never really be like that… but Nicola is… well… she’s Nicola. Nicola is different, and that’s ok… because that makes her who she is.
And who she is... is perfection incarnate.