Why start this blog?

My husband Adam and I are 37-year old first-time parents to one adorable infant son called Aaron. Despite being born via emergency c-section this past May, Aaron has been reasonably healthy the first five months of his life.

When Aaron was about two months old I noticed he had a squint (lazy eye) in some of his photos and upon closer attention, could see it in person on occasion. Sometimes if something was particularly exciting, both eyes would roll around as if his mind was blown with amazement.

I raised it with the health visitor in July who promised to refer us to an orthoptist. It took three months and multiple chases to finally get the screening appointment scheduled and along the way Adam and I noticed some other things about Aaron's vision that were cast off as arbitrary, things like:

• Cloudy eye (diagnosed over the phone to the GP as conjunctivitis as Aaron poked himself in the eye)
• Occasional watery, red eyes (they look like allergies, the poor kid gets a rash if he spends too much time outside in a light breeze)
• Eye rubbing/eyes frequently closed even during activities like baths, changing, etc. (we assumed he was tired - most days we're lucky to get him to take three 30 minute naps)
• Dislike of bright lights/sunlight (I myself want sunglasses even if it's cloudy, so...)

I knew squint if untreated could cause some vision problems and though we weren't taking the list above as serious symptoms, I was eager to get Aaron seen by professionals.

Fast forward to the screening appointment in October, where I walked in with Aaron expecting recommendations for patching, glasses and exercises. Instead I walked out with more questions than answers, a rising suspicion that Aaron's condition was the incredibly rare congenital glaucoma and another appointment to take place the next day.

To answer the question 'why start this blog'...

It's for our friends and family who want to share in the journey as we work to help our baby boy live with congenital glaucoma.

It's for all other parents, who hopefully after reading this will believe even more firmly in their instincts as moms and dads and not hesitate to raise things or push the issues with health professionals, even if they feel silly. I wish now I had pushed even harder to get Aaron's appointment and maybe if I'd mentioned any of the above we'd have been seen in August vs. October.

And it's for other parents of children with congenital glaucoma, I hope they will take comfort that they are not alone in dealing with this horrible but treatable disease. We've struggled to find much online to read or many support groups given how rare congenital glaucoma seems to be.

Our journey has only just begun. I have no idea where it will lead or how much damage has been done but Adam, Aaron and I are taking it one day at a time and keeping the most positive outlook we can until it doesn't make sense to do so.

Thanks for reading.