An Unexpected Journey

On October 15, 2002 our lives changed forever. It was Tuesday, the day after Thanksgiving, I remember it well as I was sad that we weren’t able to be home in Riverhead with our family that weekend and enjoy Mom’s outstanding turkey dinner with all the trimmings. I had been in hospital a number of days prior to that due to pregnancy complications. Little did I know when I went for a fetal assessment Tuesday morning that later that day we would be blessed with a beautiful baby girl. You can imagine the shock as I was just one day shy of 26 weeks in my pregnancy. This was October, I wasn’t due until January. There was little time to prepare and call family as I was scheduled for surgery in the early afternoon. Nurses and doctors came and went from my room as I was prepped for surgery, providing me with stats and probabilities that I wasn’t ready to hear and most likely didn’t understand. In the blink of an eye we were in the delivery room, John was by my side the entire time. I couldn’t believe it when they said “It’s a girl.” John managed to get a quick peek at her but I did not. She was quickly whisked away by the resuscitation team from the NICU. It’s not how I imagined it. It’s not like you see on TV where the mom gives birth, the baby cries, she gets to hold and kiss him or her and nestle them into her chest. Instead it was quiet. No baby, no crying, no kisses, no cuddles. But as I lay on the table waiting for the surgical team to finish up I could hear crying, loud crying coming from nearby. It was the sound I was desperate to hear, it was her.

Charlotte Clare weighed a whopping 542 grams or 1 lb 3oz and was 31.5 centimeters long. It is nearly impossible to imagine how tiny she was. I have a hard time remembering or believing it myself sometimes. Although, one look at her pictures and it all comes back to me.

She spent 4 months in hospital in various levels of care given by the some of the best doctors, nurses and other heath care professionals, all of whom I like to refer to as angels on earth.

Finally the day came when we got to bring Charlotte home. Our family and friends gathered at the house to welcome us home. HOME!

And then she grew, and grew and grew!

As Charlotte got older she decided to try and raise some money for the Janeway. So, she and some of her friends sold cookies from our driveway and collected donations from family and friends as well. They did quite well!

And remember those angels on earth I mentioned earlier? Well, here are a few of them who cared for Charlotte. We spent four months with them day in, day out. They comforted us through tears, answered our million questions, took pictures when we couldn’t be there, celebrated the milestones, provided advice and supplied us with ice cream whenever we wanted.

So, my question to you is : How do you go from this…

…to this?

One word: JANEWAY.

For almost 18 years the Janeway Children’s Health and Rehabilitation Centre has been like a second home to us. Early on when Charlotte was younger there were countless appointments, follow ups and procedures: Audiology, Ophthalmology, Cardiology, Orthopedics, you name it, she’s seen it! Many of those appointments have dwindled over the years but she still visits from time to time. That will likely end soon when she turns 18 in October. Her most recent trip there has been to Ophthalmology, where it was determined that Charlotte had glaucoma. In a nutshell, the pressure was too high in the eye which can damage the optic nerve. If left untreated it can cause blindness. Dr. Dorothy Bautista, an ophthalmologist who has been treating Charlotte since Charlotte was a baby, has to be one of the most patient and kindest people we’ve ever encountered. In fact, the entire ophthalmology team is outstanding. The amount of care and concern shown by her has been amazing. She quickly got the ball rolling treating Charlotte’s glaucoma with everything from medications and eye drops to arranging to have laser treatment done by another ophthalmologist from outside the Janeway to lower the eye pressure. Unfortunately, those measures were unsuccessful so Charlotte’s last resort was to go to Halifax to have surgery. One minute we are sitting in a doctor’s office discussing options, the next we are at home making arrangements to fly to Halifax. It probably was a good thing that everything happened so quickly as it didn’t give us too much time to dwell on the situation and worry.

We decided to make the best of the situation and used it to our advantage to explore Halifax as best we could in the middle of a pandemic. There were lots of outdoor activities we took part in. We visited parks, public gardens, and spectacular Peggy’s Cove just to name a few. Lots of fresh air was had. 🙂 I spose you didn’t think I went there and didn’t take any pictures did ya? LOL Here are a few from our visit. (*some pictures are taken with my iphone)

Maybe you’re wondering why I’m telling you this. What’s the point of it all? Well, the way I look at it is that life itself is an unexpected journey. Who knows what paths we will take and who will be there to help and guide us along the way. I am eternally grateful that we live in a place that provides top notch medical care and we are thankful every day for the Janeway being there for us whenever we stumbled and needed help to get back up. Unfortunately, not every child will get a happy ending. This year is unlike any we’ve experienced before. So many worthwhile events were cancelled because of the pandemic, the Janeway Telethon being one of them. Fortunately, it will now go ahead on October 3rd and 4th. Please check out their website https://janewayfoundation.nf.ca/telethon/telethon-launch/ to see what they’re up to and please donate if you can because every birthday we can give a child is a gift in itself!

Until Next Time,

Andrea