Updated: Sep 27, 2021
Where do you start when you’re told your child is blind?
So, you just found out, or suspect, that your child is visually impaired. If you’re anything like us, the news that your child is blind is absolutely heartbreaking, shocking, scary, and overwhelming.
Now that the first year, which I’d consider the hardest year of our lives thus far, is behind us, I've thought of the top 10 things we've learned & wish we would’ve known from the very beginning.
1. TRUST YOUR GUT. Our doctor suggested that we wait until Madelynn was 6 months old to see a specialist. Being brand new parents, we just followed along with the doctor’s orders. After some encouragement from our parents & deciding to go with our guts, we pushed our doctor to send us to a pediatric ophthalmologist at 10 weeks instead of the suggested 6 months. Had we listened to our doctor and waited 6 months, we could’ve potentially lost both of Madelynn’s eyes completely. Parents typically know when something just isn’t right with their child. Listen to that feeling & act on it. Worst case scenario, you see a specialist and they say everything’s fine.
2. LET YOURSELF GRIEVE. Take time to process your emotions. Feel the grief. Let yourself be scared and uncertain. Cry all of the tears that you need to. Let it all out. It’s ok to feel like life’s not fair. It’s ok to wonder what could’ve caused this if the doctors are unsure. It’s ok to worry about your child’s future. Your child’s life will probably look much different than you imagined. I’d guess that no one dreams of their child having to use a cane and learn Braille. Something that I still get hung up on is knowing that it could be worse. We could be facing additional disabilities. And while that’s true, it doesn’t take away from the validity of your feelings. These feelings will come and go in waves throughout your child’s life. With each new milestone, your worries will be less & you will know that your child will be able to do anything they want to in this world. But here’s the most important part of this step: don’t sit in these feelings forever. Continue to move forward because your child is counting on it.
3. GET A SECOND OPINION. I don’t care how much you love your doctor. Do your research and find the best of the best until you receive an answer that you can live with. You don’t ever want to look back and question if you did everything you possibly could’ve to fight for your child. This step can be very overwhelming. A lot of people will want to help you navigate this journey and you will be so appreciative for each of them. They’ll throw a lot of doctors' names your way. Write them all down and research each one. There’s no distance we wouldn’t have traveled to see the best ophthalmologist out there. We started with one in Houston that was closest to home and that many people, including doctors, spoke highly of, but had more options that we were looking into in multiple states in case this doctor didn’t work out. I’ll never forget what one of Madelynn’s post op nurses told us after Madelynn’s first eye exam under anesthesia. She said, “You’ve taken in a lot of information and hard news today. Remember that although these doctors are smart, they are not God. Don’t stop until you’ve been given an answer you can live with, and remember that God can do anything.”
4. FIND OUT ABOUT YOUR STATE’S EARLY INTERVENTION SERVICES. These services may be free depending on your income. One of the very first things that we did was get in touch with Louisiana’s program, Early Steps, to have Madelynn evaluated for services. We knew that she needed this to stay on track developmentally. These therapists do so much more than keep your child on track, though. They’re there for you through every high and every low of your journey and help you network with other families facing similar challenges. They provide your child with so many tools in their toolbox that they will use their entire lives. We met Madelynn’s TVI (teacher of the visually impaired) very early on in our journey. She has helped us immerse ourselves in the blind community and has been there to walk us through every challenge we have faced & celebrated every milestone with us. If you have great therapists on your team, it will impact your journey much more than you could ever imagine.
5. JOIN NFB. Join the National Federation for the Blind. They have a national chapter as well as state chapters that you can join. They host yearly conferences that teach families about all of the resources available to them and allows them to network. We’ve joined their conferences virtually since we joined the organization during COVID, and we look forward to being able to attend a conference in person! You can get canes, Braille books, activities for your kid, and so much more by joining their organization. You’ll find that the visually impaired community is tight-knit & supportive! We’ve yet to find anyone that isn’t happy to help us in our journey.
6. FIND FAMILIES THAT UNDERSTAND. It’s important to expose your child to children without disabilities so that they can learn to socialize with all kids, but finding families that have walked the path and truly understand what you’re going through is invaluable. They’re there to listen to every sad and happy thought, share their own journeys and experiences, and mentor you through yours. You’ll each be able to share what has worked for you and your kids, as well as resources, toys, and other tools that will help your kid. We met a family very early on in our journey that has a child not much older than Madelynn who is also visually impaired. They gave us hope early on and understood our fears. Finding them gave us some amazing friends and gave the girls the gift of having a friend to grow up with that relates to them.
7. HIGH EXPECTATIONS. NEVER expect less of your child because they’re disabled. It’s not about whether or not she can do something, it’s about how to adjust things so that she can do them. We don’t assume Madelynn can’t do something. We have sad moments sometimes when she can’t do things the same way as sighted kids, but we never let that stop us from finding a way for her to be able to do them. You should have high expectations of your child and every single person in your child’s life. Anyone who doesn’t understand this or thinks you’re being overprotective doesn’t understand what it’s like to be a parent of a child that’s disabled. Everyone that comes into their life has the very important job of pouring into your child to allow them to flourish. If surrounded by the right people, they’ll flourish beyond anything you could’ve imagined - trust me!
8. BE THANKFUL. You may not feel very thankful right now, and that’s ok. You’ve been dealt a difficult hand. But I can tell you honestly that there’s nothing I would change about Madelynn. Do I wish she could see? Of course I do. But in just 20 months, she has taught us so much and made our world that much better because of who she is, disability and all. Her blindness doesn’t define her, but it’s a huge part of who she is and our family’s lives. It sounds cliche, but God wouldn’t give you something you couldn’t handle. This child was given to you exactly as they are for a reason.
9. FEEL THE BEAUTY. You’ve been given an opportunity to live a life more beautiful than you could’ve ever imagined. You’ll become so appreciative of the kind people and organizations that will show you how beautiful and wonderful humans can be. It makes me so emotional and grateful any time that I meet someone whose kindness changes our lives. I’m more appreciative than I could express for the people that choose to include, accommodate, and love Madelynn. Sure, you’ll meet people who don’t understand. But those that do, or at least try to understand, will change your life and will remind you of all the good in this world.
10. THE LEARNING NEVER ENDS. We’re only 20 months into this journey and have learned so much and still have so far to go. We learn right alongside Madelynn every single day. There are so many things about blindness that we didn’t know before we knew Madelynn. We still have so much to learn about blindness, the blind community, and helping her through each phase of her life. We will continue to advocate for her and be involved in the blind community and in every detail of her world so that we can raise her to grow into a competent, independent, and confident blind woman. The work that we do now sets the stage for her future.
I know that the future may seem uncertain, scary, & much different than you ever imagined it would be right now. Hang in there, it gets better & more beautiful than you can imagine. I promise!
Here's a quick chart of the top 10 things we've learned & wish we would've known from the start. Feel free to save it to refer back to it!
Don't forget to shop our collections & read about why we started this boutique before you leave our site! Everything we do is done with the blind community in mind & the goal of making the shopping experience inclusive of blind parents. 💜🤍