I remember when we were first told Olivia would need to put a patch over her dominant eye in strengthen her Nemo eye, I was horrified. So, as we all do, I took to Instagram to read about how other families deal with patching a baby/toddler and what types of accounts I could locate with some good advice. I came across one of the most popular and respected instagrams that showed an adorable little boy that was a master patcher – and his mom, of course is a saint. She had posted a video of her little patcher opening the patch all by himself to get ready for patch time and I was completely blown away! As our avid readers know, (hi moms 😉 ) when we put Olivia’s patch on in the mornings, it starts with a cute, catchy little song but almost always continues into a meltdown. I couldn’t even begin to imagine a time where Olivia would feel so comfortable with the patch and her eyes would be strong enough, to focus on such a small object, and open it on her own.
Since Olivia only has one eye with strong vision, she has very little to no depth perception. This makes some fine motor skills sometimes hard for her to grasp. So, in theory, using eyes to focus in on a small patch in front of her and having enough visual acuity and fine motor ability to peel apart the patch should be near impossible for this tiny human. But you guessed it…she took after her fellow patching friend and opened the patch all on her own!!
Now, there are both pros and cons to her new discovery. Pros: this shows that her eyes are getting stronger, her fine motor skills are improving and she isn’t afraid of the patches and what they represent! The cons: as many of you know, patches are really expensive! So we have to be super careful about leaving them around because she WILL open them, and stick them to her clothes, the iPad screen, or even the cat! She is starting to put together that every time I see her steal a patch and open it, it ends up on her eye and results in some serious patching hours – so she has slowed down a bit – our little smart cookie.
Since the surgery, our patching time has been significantly cut short so that her eye can properly heal. She has some residual swelling and redness which has required extra goopy ointment that makes her vision even more blurry. But, we are still hitting our 60 minutes a day until we get the all clear to work our way back up to 3 hours! Olivia is starting to become an active participant in everything patch time so you know what we are going to do…just keep patching :).
I have always heard the phrase – “it takes a village” – but I never truly knew what it meant. When Olivia entered this world and we were faced with our first real challenge as parents with her PFV diagnosis, we were terrified. But I’ll tell you what softened the blow. Our village. We are beyond lucky that not only do we have a village of people behind us but rather an army. I went to that first optomology appointment with my mom by my side. She sat there strong as stone as the doctor informed me that my 2 month old daughter had a cataract in her right eye. She hugged me and squeezed me tight as I melted into a pile of mush as soon as the doctor walked out the door. And she stayed with me, playing with her granddaughter, until my husband could slip away from work and get to the office to take care of us. Countless times, my mom (Pacha) has taken the 3-hour drive to Long Island, NY with a baby that despises the car just as much as she hates napping alone. Without complaint, Pacha and Poppou purchase patches and allergy friendly snacks for our family and Grammy and Grandpa cook up allergy friendly dinners. On those nights when my husband and I need a small reprieve from the worry of food allergies and contact lenses, my sister is over in the blink of an eye to dance to Moana, eat avocados by the spoonful and make Olivia belly laugh over absolutely everything. When Olivia is having a hard time keeping that patch on, we call Olivia’s grandparents to make her smile as she talks to all their puppies and kitties and watches Poppou crash into the phone or grandpa say ‘hello’ in the way only grandpas can ☺. My brother in law makes fires outside to keep Olivia focused on the bright lights and comforted by the warmth as she plays peak-a-boo with all of us. Gigi is always ready to play BeeBo with as much energy as possible and lets Olivia talk to all the kitties on FaceTime. On those especially difficult patch days, Olivia’s Grammy comes over to play with magnets and read books to keep a smile on Olivia’s face and that patch on her nemo. My mother in law is always there on the other end of the phone to talk us through how we are feeling and to remind us that we are doing the right thing for our little girl. When we found out about all of Olivia’s allergies, my mom and mother in law were there to keep us strong and brave. Our friends and their children keep us fun and light. They remind us that everything will be okay and to stay positive.
I know that we are extremely lucky to have such a force field around us. Our family and friends are the source of light on these challenging days. We know we can count on them to stand by our side in the face of adversity. In storm seas, they are our lifeboats. Words cannot express how lucky we are to have people in our lives that love our little girl like they do. I want to encourage anyone reading this post to ask for help. Lean on the people in your life for help on those darker days. Together, we can do this. Together, we can just keep patching.
Whenever Olivia and I are patching out in public, we get a lot of people that come up to us and ask about her eye. For the most part, people are so sweet. They ask if it is an injury or something she was born with, they ask if she keeps her window glasses on while she patches (she doesn’t by the way…) and they ask if she acts differently when her patch is on verse when its off. But the question I get asked the most is whether or not Olivia’s PFV has deterred her in her development. This question is always met with a smile.
I am so proud to say that Olivia’s condition has not slowed down her development in the slightest. At just 4 months old and 1 month into patching, Olivia was babbling up a storm! At 11 months now, she is taking her first steps (with a couple tumbles of course) and constantly calling for momma. While patched, she reaches for objects in front of her with decent accuracy, cruises around the house, ‘reads’ her books – upside down of course – and tracks objects that are placed in front of her. When eating her meals, Olivia can reach in front of her and grab the waffles – our current favorite meal – right off of her plate. She plays peekaboo with her cat, Echo and runs to daddy when she hears the car door slam.
Now all of these milestones probably sound amazing…especially for a child that technically is considered special needs because of her nemo eye. But I will admit that these amazing skills that Olivia is mastering came at a price. While she is patched, my husband and I constantly work with her to track and play with confidence. We encourage her with high pitched yells and exaggerated smiles to walk on that unsteady ground and turn the pages of books because we know that these skills that come easy to other babies, may be harder for her to grasp. When we started patching Olivia at just four months old, the skills listed above were only a dream. Olivia was terrified to have the patch on for longer than 10 minutes. She would cry and thrash around unless we were directly in front of Mickey Mouse Clubhouse. She would be afraid to sit in her high chair and eat her food because she couldn’t see it and would fall asleep minutes into patching just to get a reprieve from the darkness. It was hard and trying but looking back now, pushing her to find the light in an otherwise dark eye has created such a spunky, confident, fierce little girl. She is no longer afraid of the dark but rather embraces the challenge. And that may seem a little too deep for a baby that hasn’t even hit her first birthday yet, but I swear I can see such maturity and strength behind those baby blues.
I want to encourage all of those patching mommas and dads out there to keep patching. I know how hard it is and it’s a practice that doesn’t always get the right result. We all know that sometimes, patching doesn’t really help our littles…but sometimes, it does. Sometimes patching everyday strengthens their eye just enough that they start to see this magical world through both. And if the worst happens and patching doesn’t yield the result we were hoping for, we will know that our little tribe did everything we possibly could to give Olivia her best chance at vision. But no matter what, the way this little girl sees the world is in a way I will be envious of for the rest of my life.