A year ago, I remember vividly sitting here, on holiday, a week after finding out the doctors fatal prognosis for Ethan. We were devastated. We sat here crying with my brother and sister-in-law, in total dispair. Then I remember thinking for he first time, what if our baby does survive, but he can’t move his arms or legs? How will he walk? How will he eat? Play? Draw? And so many more things.
It’s amazing what difference a year can make. Today marks the one year anniversary that we were told our baby would die at birth. It was one of the saddest days of our lives, but a day that has led us on the most incredible journey. Rather than look back sadly on this day, we have decided that from now on the 22nd of May should be a celebration. It is Happy Ethan Day!
It’s so easy to worry isn’t it? All parents worry about their children, don’t they? I know my Mum and Dad still worry about me, even though I’m now 34. Having a child with a disability, I think, probably comes with even greater worry, or maybe just different worries. My worries aren’t necessarily about right now - they’re more about Ethan’s future and revolve so much around what he will be able to do independently.
It’s been 8 weeks since I sat nervously, but excitedly, the night before Ethan had his first set of casts. He was to begin the Ponseti procedure, which is primarily used to correct talipes, more commonly known as clubfoot, but for Ethan it would also help to correct the extensive contractures of his knees as well as his feet. He would begin the process of serial casting the next day and would have to have the casts changed once to twice a week.
Ethan has brought us so much joy in his first 4 months. It is hard to remember the times before he was born and he gives us a new perspective of life. I have just enjoyed my 34th Birthday and I took the day off work to spend with Laura and Ethan. Despite Ethan being a little unsettled (perhaps a little congested), Ethan still found his smiles and giggles throughout the day.
“Your baby is very poorly and will not survive past birth” It is hard to convey the joy and excitement we felt when we found out we were pregnant. It had been a long journey for us, a story for another time, but to know that we were soon to have a new member to our little family was something we had only been able to dream about. Those first 12 weeks of nervous excitement as you wait for that first scan passed by angonizingly slowly.
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