I wrote the below Facebook post a month or so ago. It had over 15,000 views, and so I thought I would share it here on my blog as well.
It was 5 years ago this month, we saw our first specialist. It was then the doctor slumped back in his chair, after examining our 3 month old baby. The look on his face, and his words still ring in my head. “Your baby is blind, and I don’t …know why.” We began our new life with Gavin that day. I wish the person I am today, could have talked to the devastated, lost, withdrawn, depressed, and confused mom I was then. I would have told her, it gets better, and your son who was born blind will have all the opportunities that your older son has. His life will fill you with the greatest joy, and his spirit will bring people to your life that will enrich you. The blind community that you know nothing about, will become your family. You will learn the way you see life through Gavin’s eyes will make the world much clearer. His cane, Braille, therapists, meetings, it will all become part of you, because it’s part of him. And you will one day be ok with it. You will still feel sadness, but the miracle that is your son will bring happiness and fill your heart with little miracles everyday! The only thing that will now bring tears to your eyes, is hearing his angelic voice ring through your home. This month 5 years ago, the saddest thing we thought happened to our little family. Little did I know, our life was to be special, and that was the start of a new, better life that I couldn’t imagine any different.”
I have met many families who are just now going down this road with their child. To them, I wanted to write the below:
Dear confused and sad mom and dad,
I know how you feel. As you hold your baby, the quiet tears may fall. You may be trying to picture a year down the road, or a kindergartner, or a high schooler, that will be blind. It may be very cloudy, because it seems as though it’s hard to look at tomorrow. For us LCA parents, we know there is not treatment (lots of hope). This is the deck of cards we were given. As difficult as it is to understand it, this is what it is.
You will hear it all. “At least your baby is only blind,“ “At least he can hear.” If that makes you angry, it’s ok… it made me angry too. Logically we know all of this, but our child is relative to OUR LIVES, and it is heartbreaking. Gavin was the second person in my whole life I met that was blind. I had not a clue where to begin with making sure my emotions were in check enough to deal with all the work that came with this, and figuring out early intervention, the medical aspect, and everything in between.
Raising a child who is blind, may be a process of acceptance. Many people, many, many people will share their journey with you. But the waters need to be navigated by you, to get to a place of understanding and acceptance. Logically, your brain knows your baby will grow up to be a happy independent adult. Your heart and the part of you being your child’s mom, needs to process this to catch up to your logic. Your emotions need to find their way back to your heart to fully get a grasp. Gavin is 5, and I am still learning. The crying is not everyday like it was for the first 2 years. But yesterday, I was very sad as I tried to explain a bee to Gavin. He wanted to touch/see it. He wanted to understand them. He did not get it. I knew he would, it would take some time. That was the logic talking to me. The mom in me, wept. It was hard, and these types of situations always will be, it’s just what it is.
IEP’s, meetings, doctor appointments, therapy, therapists, specialists, braille, white canes… this is your new family, and a part of your new life. Your new team that will help guide your child. Don’t be afraid. But don’t stop being your child’s best advocate. Your baby needs early intervention, and you as a parent, need to find your groove with your child. You need to learn what makes them upset when they can’t tell you. Loud noises, open spaces, too many voices in one room, echo’s in an empty hall, car horns, loud pitches in music, over stimulating toys, under stimulating toys, too many things to play with, not enough movement, too much movement, and the list goes on. Our children who are blind, learn very different. Stay close to their cues, and listen to your gut, don’t dismiss your instinct.
Open your ears and your hearts to those who have gone down this road. Put yourself out there, not one question is too dumb. The blind community has helped to heal my broken heart. They have shown me what I needed to see. They have taught me that even though you don’t understand, and you go through all the emotions to try to just fix it, that it is ok – and this is it. Get comfortable with interacting with adults who are also blind.
I get it. I am raising one son who is fully sighted, and active, playing soccer, running around the playground with his friends. And I am raising a totally blind son (minimal light perception only), who I wonder would he have been doing the same if it wasn’t for the blindness? I couldn’t have helped but get sad this past weekend because many of my friends were at opening baseball ceremonies for their kids. I can’t help but allow my mind to wonder, and ask, “Would that have been Gavin out there in his uniform, with a team, running the bases unassisted, catching a ball on first base all on his own?” It’s ok to have those thoughts… you’re a mom and it’s normal. I feel like for so long, I was quiet with my emotions, and only my husband saw me cry, and knew why. Because I didn’t want to be that mom who was perceived by everyone else that I am not grateful that I have a healthy baby, and he is only blind. I felt like my emotions weren’t validated, not because of anyone saying anything to me, but just me. But it’s still relative to me and my family, and there are times where it can be just downright sad.
Having said all of that, I don’t know if I could imagine my son anything other than who he is?
Odd coming from me, because we have founded a non-profit for research for Gavin’s gene mutation that has caused his blindness? Not really. Troy and I have found our lives work with this. If a cure comes in 5 or 10 or 20 years, and Gavin doesn’t want it, we would never have regretted going down this road. And I will still be working for it. LCA, is not only a part of my family’s DNA, but it has become emotionally attached to us. If you’re reading this with a baby in your arms who is recently diagnosed, it may sound weird. But you will get to know your child more in the upcoming years, and come to a point where you understand, respect the life that was given to your baby. And that your child may not want the choice to regain their sight. What a mix of emotions right!?
Cry when you need to cry. Be sad when you want to be sad. But pick yourself up and take glory in all the amazing miracles that is your child! They are waiting for you.
Try not to let it bother you too much, when you feel as though people don’t understand. No one will ever, EVER understand unless you have traveled this road. Don’t let it detour you.
Tell your family what you need from them. Don’t change your vocabulary around your baby. Talk about colors, the sunset, all the intangibles that will be very difficult to explain. Do it anyway.
Surround yourself with the circle that is going to support your decisions. You will need more support than you may think you do. Start a journal, and don’t just take pictures, TAKE VIDEO of your baby! Take video of your baby laughing, blabbing, playing. You want them to know what they sounded like when they were babies.
Find online support, find your community. Late at night, you may need some words of wisdom to get a restful sleep, and reassure you. Reading through past blogs, posts from the communities I am a part of, has helped during those late nights when my mind was searching for answers.
My most important point to get across. Love your baby, even if you don’t know today how you will find the courage to raise your child who is blind. Because believe me, I had many moments like that when Gavin was just months old. How am I going to do this? You will, and you will find your way.
You know what else, it gets easier…and harder. Remember the logic versus the mom. It’s a constant. It’s not as prevalent, it may not rule your life like it did when your child was small, and you were trying to just understand it all.
Let me give you a glimpse of where we are with Gavin today, at a mighty 5 year old! I say mighty, because he is the most stubborn little thing I have ever seen! He will start kindergarten next year. He is learning/writing braille, he is becoming quite the little musician/singer. Our days are fun! We laugh, we love, we are family. All the craziness that comes with that, makes me so grateful for this beautiful life we have. When Gavin was diagnosed, I was depressed, sad, confused. Every emotion you can think of. That has since passed, but those emotions sit there. I can feel them, but they don’t surface all too often. When I see Gavin struggle with trying to pick up on the social cues, I get bummed. That is our biggest struggle at this moment. So when I say it gets easier, and harder, it’s because there are always new phases that you have to find how to navigate. But you will have the solid foundation under your grasp, once you travel those first few years of acceptance. You will get there… but make sure to get there with your group, your support and your family and friends. Bring them with you, share with them how you’re feeling.
I look at Gavin now, and I see the most fascinating little boy I have ever known. I look at Landon, my oldest, and I see the most fascinating little boy I have ever known.
Yes, that’s a mom talking. But that’s my point.
This is your life, and the beautiful lesson that comes with it, is this is all much bigger and better than your comprehension of what you believed and wanted your child to be.
Love, respect and accept. What a journey this has been!
With love and understanding,