Embarking on a Journey into the Unknown
It was my 4th year teaching special education, and I was expecting my second child, a baby girl. I was absolutely ecstatic for everything that having a girl would bring to my life. I excitedly anticipated the opportunity to rewatch all the Disney princess movies, do her hair in ribbons and curls, and to buy all of the adorable girl outfits. What I did NOT anticipate was multiple surgeries before she turned two, a strict regimen of eye drops, going through boxes and boxes of eye patches, and insertion/removal of specialty contact lenses from my infant’s eye.
I distinctly remember sitting in the eye clinic after hours and hearing… “Sutton, your five-week-old baby girl, has what is called an anterior polar congenital cataract in her left eye. It prohibits any vision development in that eye and will require surgery to remove the clouded lens. We have a long road ahead of us, and we will do everything it takes to give her the best possible visual outcome for her future.”
I was in instant tears. I was a special education teacher, and so I knew first-hand that this had the potential to impact her development. I spent my evening holding my girl, looking into her beautiful silver-tinted pupil, and wondering: “What did I do wrong for her to have been born with a cataract?” I cried for her future, I cried for our future, and I cried for the unknown.
The unknown. That is what it was. There was very little information available to me in a web search. While I was able to research what a congenital cataract was, there was very little information as to what to expect and where we would go from there. I posted to a couple of Facebook pages where I eventually came in contact with another mama, many years ahead of me on their cataract journey, who was able to add me to a Facebook page for families of kiddos with congenital cataracts. It is HERE that I learned so much from the mamas who had become experts in their child’s vision care. It was here that I learned that the outcome itself is unknown, that we could do everything right, and that she may never develop any vision in that eye… Or she could develop glaucoma or even lose her eye… Or the best outcome, her vision would develop as hoped with no hiccups moving forward. It was here that I learned that no matter the outcome, we would be okay.
Documenting the Journey
The unknown was the scariest part of our diagnosis, and some days, it still is. Sutton received her first surgery at six weeks old, and I opted to document EVERYTHING from there on out. I wanted to document all that I learned from our experience so that another mama in my shoes could walk a little stronger into the unknown than I had. This is where our Instagram account, @seesuttonsea, was created. Sutton’s middle name is “Sea,” and I was determined for others to follow along her journey and to “See Sutton See (Sea)”.
I began by talking about how we prepared for the surgery itself, items that I purchased (Hello jammies with built-in hand covers!), and everything that I learned during the first surgery. I documented the troubles that we encountered and how we solved those troubles. For example, we had to tape an eye shield onto her baby-fresh skin, and I felt so bad pulling it off every time we administered eye drops (I didn’t even know to expect eye drops, but duh!). To solve this issue, we laid a layer of tape directly onto her skin and then taped the eye shield to the tape so that we only pulled the shield off of the first layer of tape, not off of her skin, each time she was due for eye drops. Her skin was so thankful.
I also documented an array of strategies I used that were recommended by the occupational therapists and physical therapists that I worked with daily for my students, being a special education teacher. Some of the strategies recommended included things like placing her finger foods in all quadrants of her high chair tray so that she would visually and tactually scan using multiple visual fields as well as encouraging fine motor development and taping toys onto a lit window/door for her to stand at and reach in all directions to remove them encouraging fine and gross motor development.
I was ultimately so blessed to have an array of professionals that I worked with daily who allowed me to lean on them for support and suggestions that I was able to document and share. It’s always so amazing to see other families taking these strategies and utilizing them with their own children. I’ve received message after message from families worldwide asking questions, sharing successes, and simply connecting to others on this journey. I soon returned to school to become a Teacher for the Blind or Visually Impaired and love connecting with families on a different level, having navigated the world of vision.
Making connections with other families is key to becoming confident with the unknown. Seeing families become confident as they navigate their child’s vision needs and supporting them as they work through the same grief process is very rewarding.
As you navigate into the unknown, reach out for support from other families on the journey. We are all here to share with one another, learn from one another, and see that no matter the outcome, we can not only do this, we can rock this!
Sincerely, a Patch Momster.