A little bit about me and my journey, and why I am beginning this blog.

A little bit about me and my journey, and why I am beginning this blog.

Hi, I’m Paige, and I was born prematurely. Throughout my life, I’ve faced unique challenges that I feel a lot of people don’t associate with, or don’t even realize are connected to premature birth. I’m starting this blog to share my journey and raise awareness about the lifelong impact being born early can have, and how you are never really a “former” preemie like we are often called.

Early Days

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Like many preemies, I spent weeks in the NICU. Those first days were filled with uncertainty, and while I don’t remember them, I have heard stories from my family. Much of my early days are, as for many preemies and non alike, are hard to recall but the here is what I do know: I was born 4 months early, I weighed 1 pound 4 ounces and had open heart surgery at only 7 days old. I also had been going blind as I was so early, but my vision with no medical explanation fixed itself. My retina corrected themselves with absolutely no reasons that the late Doctor Patricia Harvey, my eye doctor, could find. I had 20/20 vision all of a sudden, when they had only just begun talking about teaching my immediate family brail so they could teach me when the time came, that’s how far gone my vision was.

When in the NICU still, I was prone to fidgeting (still am lol) and I would pull out my tubes from my nose, which for the longest time growing up left me with two different sized nostrils, but nowadays they are the same - or I’m used to them I’m not really sure. Along with this, I was on a ventilator for 94 days which has since left me with chronic lung disease and scar tissue within my lungs, so any time I get a cold or something more serious like the flu we are very careful to analyze my coughs, how often do I cough etc. because pneumonia is a possibility as it hides in the scar tissue, which if it goes undetected can become a bigger problem. After a ventilator I was on CPAP.

Something that I am hesitant to share, but will as I hope this blog can help other preemie’s - or former preemies as we are called - feel less alone in their struggles. Without getting into too much details, as a result of being born so early I have underdeveloped bowels, which my pediatrician called “Lazy Bowel Syndrome” or STC (slow transit constipation) which, although it can sound similar to IBS, they aren’t one of the same. STC is more about the physical movement of the bowels and may be linked to problems with the nerves or muscles of the digestive system.

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Childhood Challenges

Another set of issues I have as a result of being born prematurely is with my brain. This is where my aftermath of being a preemie is often at times, whereas for some it can be more of a physical thing (i.e. physical disabilities, vision/hearing/dental problems and more). I have learning disabilities, such as a processing disorder, time management issues where I have zero concept of time, so 5 minutes feels like hours to me and vice versa, as well as the fact I struggle to read an analog clock, although even if I could its not like it means anything to me. On top of that I have dyscalculia which is Dyslexia with numbers meaning I get my numbers backwards, and that happens a lot!

I also have Social Anxiety Disorder (SAD) and ADHD, which I was only diagnosed with in the last few months. When I was in school, I had an IEP, which is an Individualized Education Plan. Which without I would not have graduated with honors in high school as I do feel the help and applied classes I took (as well as just the good teachers) contributed to that, besides my hard work I put in. Within my IEP I had a laptop to use as my occupational therapist suggested it, or at the very least a scribe to write things for me as my dominant hand can get extremely sore if I write for too long which leads to illegible writing when, for the most part, I can have neat writing if its something short. This is because of the lack of muscle strength in my hands.

For some time I struggled to jump growing up, due to the processing disorder that I have as a result of being a preemie. That very same processing disorder affects my ability to ride a bike, its too many steps that my brain gets overwhelmed and I cannot figure it out. Often my should have been fun times getting a new bike ended in tears as a little girl because of this.

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The Emotional Impact

As you grow older, its hard to tell from an outside perspective what is connected to that chapter of your life, and what you will simply just grow out of, and this was an issue I had to face often, on an emotional level.

Growing up I was often described as shy, which although was true in ways, in others I never grew out of that shyness. As much as I did want to do dance as a little girl, I barely lasted a week because what I know now was my anxiety that made it extremely hard for me when my dance teachers kept changing every time I was there. I also didn’t want to do things in front of others.

School was in general not my favourite, as I felt I didn’t fit in well with the other kids, for many reasons, but I also loved it in other ways, like field trips to places such as the Safety Village, hanging out with my friends at recess, and other things. As I mentioned I did have an IEP, but due to my anxiety I often did not take to using my laptop because I felt like everyone would have been looking at me and commenting because “why can she use a laptop and I can’t?”. With my math learning disabilities I also for a long time had to do math from a grade or more below my own as I was at that level still. In grade 6 I was doing grade 5 math, with the exception of the odd assignment, because I was still at a grade 5 level. Which, again, triggered my anxiety was I felt like it was noticeable that I was doing something different than everyone else - but I knew logically that I wasn’t the only one, but anxiety doesn’t like to listen to logic now does it?

When I got to high school I was put into applied classes, which meant that most people in it had an IEP also or at least needed extra assistance. This was super helpful to me, but again I didn’t always take the help my IEP offered due to my anxiety. I also missed out on many experiences because my anxiety limited me from field trips, joining teams or clubs and other stuff of that nature. Regardless of this, I pushed myself in my classes to do as best as I could and prove to myself (but also I felt like I needed to prove to others) that just because I had these differences likes an IEP didn’t mean I wasn’t smart, or that I had it easy (or whatever I felt that people were thinking at the time).

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Why this blog matters!

I started this blog because I know there are many out there with similar experiences who may feel alone in their journey. By sharing my story, I hope to connect with others, raise awareness about the challenges preemies face as they grow up, and provide support for those going through similar situations.

I know that everyone’s experiences are different, but there are also many similarities with being preemies, that I want people to be able to see that they are NOT alone, that you can be more than whatever you feel your obstacles are. I explained this blog idea to my parents like this:

when you get a dog you know that you can find various resources to guide you through life with said dog, and what to expect at various points. However I feel like with being preemie, or being a parent/guardian of one that you don’t always have resources to turn too. Sure IEP’s and doctors are great, but those can only do so much, and especially as you age, there’s only so much that you can find and its mainly about preemies, as the very small babies that they are, and like my blog title says, I feel we are always a perpetual preemie, we never change. We may be older, we may not be a small baby in the NICU (if that applies to you), but there will be areas of life that we are behind in (although it may only be temporary), we have long lasting health issues because we were born so early, we have these things that when you look to see where they started from, you can look to your birth date, and that makes us perpetually preemie.

This is just the beginning of my story. I hope you'll stick around as I share more about navigating life as a preemie, and I’d love to hear from you too! Feel free to leave a comment or reach out—I’m excited to build a community together.

If you liked this, please consider subscribing/following, following my social media for the blog so you never miss content or at least sharing! You can find me here, here & of course here!

If you want to support me aside from this, please consider buying me a coffee! I love to enjoy a nice cup of coffee while I write these blogs!

Much love! Hope to see you again soon!

- Paige