Years ago I had seriously considered starting my own blog, I just had no idea how to do it or who would read it. I think the idea came to me in 2012 which would put Chrissa at age 2 or 2 1/2 years old. It was around that time when I finally felt like I wanted to talk about what I was going through and the ONH diagnosis. Wow, that was over a decade ago, Chrissa just turned 13 last month! Time flies! I remember feeling fairly comfortable enough to start conversations about vision loss and it was then I also started looking for resources about ONH specifically. I wanted more than what Early Intervention services offered, I wanted to connect directly with other parents of kids with ONH. I quickly found that I had to explain and educate most people on what ONH is; my family, our friends, pediatricians, some early interventionists, even some eye techs and optometrists! I was shocked at how rare ONH was. No one was talking about it. And here I was just 27 years old, a first time mom- not a doctor, not a nurse, no medical degree whatsoever, just me- trying to explain our situation all while trying to find legit resources to learn from. Honestly, I wasn’t even sure if the information I had researched and found about ONH (from the internet) was accurate. I say this because I was reading articles and research papers that said conflicting things. Some said a child affected with ONH would have developmental delays, physical disabilities and total blindness, while others stated the opposite. I read some articles where children with ONH were reportedly hitting all developmental milestones and markers on time and with little to no sign of vision loss. I was upset about it, it was so confusing to me. So, I decided to explain what was going on to my friends, family and our pediatrician as best as I could, from my own personal perspective and hand on experiences with Chrissa. We enrolled in Early Intervention services when Chrissa was 6 months old which was some of the best guidance we have received to date! It was life changing for us (yes, I meant to type us, because I too was a grateful recipient of family services) and I personally think that ALL children with ONH can benefit from Early Intervention Services.
Today, I think back on these first experiences and all the emotions involved and I’m thankful for it all because it’s shaped me into the mom, advocate and person that I am today. During those first few years of Chrissa’s life I felt guilty, I felt confused, I felt depression at times and a lot of loneliness. and I realize now, this was most likely very true for many us parents. ONH truly is a spectrum of its own. Although similarities are apparent case by case, no two people will ever be affected exactly the same. Each has their own version of ONH within the medical definition. Each a warrior. and that’s why ONH Awareness was formed. Each of us has a child affected very differently from the other. Together, Dallas, Erin and I found the need to form this nonprofit for that exact purpose. We hope to educate, advocate, connect, and support families and communites affected by Optic Nerve Hypoplasia.
One that note, I’ll end my first of many blogs to come (because I have a safe, supportive place to post blogs now) with this: Parenthood is a wild ride with or without adding a disability and ONH is journey of its very own. You will learn to navigate this condition in your own ways and in good time. If you are ever struggling or feeling alone, you have a place to come where we ALL get it. We are here for you. We are here for your children. We hope you feel a little better off knowing that you are not alone. There’s a community here. Each of you reading this has a story to share and someday you may, or may not, want to share it with us. ONH Awareness is here to meet you wherever you are in your journey.
Thank you for being here and reading this!
Peace, Love, and ONH Awareness,
Joanna – Chrissa’s mama
VP/Treasurer