Evangeline's story. Our journey with T18

  Today I set out to run between 3-5kms and ended up running 7.7km around the whole Estuary. I know it isn't exactly a marathon and it may not seem like very far to the ultramarathon runners out there, but I’m pretty proud of that effort. Ironically there was a time when I use to run the Estuary as my “short training run” back when I was training for a half marathon. To be honest I didn’t feel super motivated to run today, so I put on a Francis Chan Sermon to distract myself. To my surprise I felt good while running. I got to the 3km mark and was barely puffing so instead of turning around and heading back to my car, I decided to try run the whole Estuary. I figured I could always walk if I got too tired. To my surprise at the 5k mark I was still feeling good, so I challenged myself to run to the roadside. I got to the roadside and still had energy so then I ran across the bridge by Briscoes. At that point I stopped to walk as I was only a few 100 meters from my car. The furthest...

Tomorrow the 5 th of May is “International Bereaved Mother’s Day.” Did you even know that was a thing? I didn’t. Sadly, there are many mums like me who find out this day exists when it becomes a day for them to remember and celebrate the baby/ babies they lost, or the babies they have longed for, but their desire to be a mum is not yet realized. This week it has been 4 months since Evangeline entered the world, for a very short stay before going to her forever home with Jesus, where we will be reunited one day. It is amazing how 4 months feels like an eternity but also like I blinked, and it was gone. January 3 rd and 4 th will be forever etched in my mind, but life didn’t stop that day it continues to move forward. During the few weeks between our trip to Fiji and returning to work, I felt my mind begin to clear. The grief fog I was under felt a little lighter as my mind began to make space for something else. Something I know well, and have done for over 10 years- teaching. It...

    Imagine a world where no special needs children exist? I'm sure many could advocate for why they think that is a good thing, but let me tell you what we would lose. We would lose the joy and laughter a child with special needs can bring. We would miss out on the lessons taught around acceptance, inclusivity and empathy. Yet isn't that the goal of prenatal genetic testing? To terminate children with extra chromosomes? Before they even get the chance to change the world for the better? I don't know about you but that's not actually a world I  want to be apart of.  Yet already in countries like Iceland there is a 100% abortion rate for children with Down Syndrome. I think it goes without saying that means 100% abortion rate for children like my sweet Evangeline with an extra 18th Chromosome too. I grew up in a time before prenatal genetic testing (I think it's been around about 10 years in NZ), that means that I went to school with several special needs children. I...

Have you ever been in a situation with someone who has gone through a tragedy, received a diagnosis, lost a loved one, wrestled with depression, miscarried or separated in their marriage and not known what to say?  We all have right. I'm the first to admit, in situations where I can't personally relate, I haven't always known what to say, and I have for sure said the wrong things at times too. I'm writing this blog today to tell those who ever have had someone let you in on their pain, their grief, their heartbreak, or share their struggle with you, don't avoid it, say something. The worst thing you can possibly say is nothing at all. Even if all you say is "I am so sorry you’re going through this, or "there really are no words."  Trust me it is better than awkward silence or changing the subject. Which communicates, unintentionally, a lack of care or that the persons feelings are not valid or are not worthy of being shared One thing that has surprise...

Today is Edward Syndrome awareness day. Today is about raising awareness of what Edward Syndrome is, celebrating children like Evangeline and changing the narrative of Edwards Syndrome being "Fatal" and children with Edwards Syndrome being "incompatible with life." It is also about fighting for equal rights for children with this diagnosis. Until October last year I had never heard of Trisomy 18/ Edwards Syndrome. Now I'm part of an online community that shares their stories, shares medical tips, comforts each other after a loss, writes books, creates charities and offers hope to other parents who receive a diagnosis. Without this online community, I would have believed that a baby with Trisomy 18 can not survive. We were given outdated information by Wellington Hospital, that was literally written in the 80's we have come a long way in medical advancements since the 80's! Google is not much more hopeful. It was hard to hold out hope to meet Evangeline a...

  It has been 8 weeks since the day we said goodbye to our precious baby girl. The day she passed seems like a distant memory already, but maybe that is because it is too painful to fully remember the heart wrenching moment where we placed Evangeline's tiny little body in the funeral directors car knowing it was our final moment with her. Watching that car drive away broke our hearts like nothing else could. A week later we picked up her cremated body in a tiny pink teddy bear urn. As I held that urn I felt two things; disbelief and sorrow. I wanted to sob my heart out but at the same time I almost couldn't believe that the teddy bear held the ashes of our baby girl. Over that first month we had many reminders from receiving her birth certificate and then her death certificate. Receiving cards, and gifts from friends and charities. Having her photos arrive in the mail. Each of these things reminded us this wasn't some bad dream but this is reality. I felt strangely numb the...

Evangeline’s Memorial was on Saturday the 3 rd  of February, 1 month after she was born. We had a small private ceremony to honor her short but impactful life. What follows is the speech I shared with friends and family. It hit me as I sat down to write about our beautiful daughter Evangeline that this isn’t the usual funeral speech, or even one I ever thought I’d have to write. I don’t have years of memories to choose from. We don’t know what kind of person she would have been, what her personality would have been like, what she would have liked and disliked. I can’t stand here and talk about her quirks or tell funny stories about the things she did. To be honest the lack of memories is one of the saddest parts of all. When I saw those two pink lines on the pregnancy test, I began to imagine our future as parents, the sleepless nights, the new learning, our lives forever changed. I imagined what our baby would be like, and wondered if our first baby would be a girl or a boy. I...