In the third and final part of their story, Jenni Derksen chronicles her family’s experiences as they continue to deal with little Benji’s vision impairment, and as they embark on a new phase of their lives. Here is the conclusion of the Derksen story in her own words.
This past summer, Benjamin went for a special test at the Alberta Children’s Hospital that helps give an approximate acuity for a small child’s vision. The results were that his vision is most likely 20/200. Perfect vision is 20/20 and legal blindness begins at 20/200. Admittedly, we felt a little confused because we felt he was doing better than this. At the same time, this information helped us accept the things with which he was struggling since learning to walk.
Since having more occupational therapy appointments with the CNIB, we learned vocal cues to help Benji navigate the world around him safely. For example, “little up Benji” or “big down Benji” lets him know to take a little step up for a ledge, or a big step down for a large curb. The occupational therapist also thought that Benji should be assessed for a white cane to help him explore new spaces. The assessment showed that Benji would benefit from a cane, and the CNIB provided him with his first tiny white cane this summer. They also recommended we help him choose a name for the cane in order to make it fun. He quickly chose “Bob”, and then aptly renamed it “Walkie”. Walkie has also been used to hit his siblings, and once as a plunger. Give a two-year-old a stick, right? It has definitely been an interesting process watching Benji adapt to his cane because he now likes to run fast and the cane slows him down. However, if he is in a new situation, he will always start out with his Walkie.
To be honest, learning about Benji’s diagnosis and parenting three small children was completely draining, and I was finding that I desperately needed a creative outlet and a mental distraction. I had been crocheting for about five years, and had dabbled selling my items during that time. After careful consideration, and some trial and error, we launched Jack & Julie Co, an Etsy site marketed via Instagram. Jack & Julie Co was named after two teenagers who had truly encouraged our family and impacted our small children’s lives. I made chunky crocheted hats with different pom-pom options and I also crocheted blankets. I wasn’t sure what to expect, but around 300 hats were sold that winter.
I soon found myself wanting to pour my heart into my shop and give back to an organization that had given so much to us. In the spring of 2016, we released the SEE hat. The SEE hat is a snapback cap with a leather label hand-stamped with the word “SEE”. We sold these hats over the summer and sent a portion of the proceeds to the CNIB children’s department and used our Instagram account to connect with families who had children with low vision or any form of vision loss. We shared stories and photos, and we wanted to show that kids often need to wear glasses and that doing so is okay and even trendy! We also connected with other families who had a member with albinism, and started a network of encouragement for ourselves and others. It was overwhelming to feel the support within our own small town of Didsbury, and many friends and family members purchased SEE hats and sent encouragement our way.
The SEE hat support that was most unexpected and touching was that of the Didsbury Fire Department. Russell had joined the volunteer fire department in October of 2014 as an attempt to find something outside of the home that he truly enjoyed. It didn’t take long for him to love his new role. With over 30 members, the volunteer fire department is a great group of men and women who keep the community safe in addition to supporting each other. Many members purchased a SEE hat and were educated about Benji’s albinism and the role of the CNIB. Many of the members proudly wore the hats around town and even in Paris, France! Our family can’t always say that it’s easy to watch Russell run out the door when the pager buzzes. It can be horribly inconvenient, especially when we are about to leave for a family trip, or when a baby is about to be put in the bathtub. But we remind ourselves that at that moment, someone else needs him too. And to be honest, he needs them.
Since joining the volunteer fire department, Russell has been taking courses to become a more equipped firefighter, and he has received lots of encouragement in his efforts to develop his skills. I have to say that heis the most incredible dad to our kids, and he has kept us all on emotional solid ground while going through Benjamin’s initial diagnosis, white cane training, and some of his current gastrointestinal issues for which we hope to consult with a specialist soon. He also hand-stamps every single SEE label when he isn’t busy washing dishes and supporting the family in the busy seasons of Jack & Julie Co.
While all this was going on, Benji and Faith had both recently broken their glasses and needed to find something new. They received their current glasses after we connected with Dr. Danielle Gordon from My Optometrist in Calgary through Instagram. Benji is now a patient of another optometrist at My Optometrist Calgary, Dr. Ryan Kloepfer. As it turns out, Dr. Ryan and Dr. Robare brothers, and Dr. Ryan was equally as wonderful with our kids. Can you imagine three kids under 5 years of age in one exam room? He confirmed Faith’s continued need for glasses, and that she may need to patch one eye to strengthen the other later in life. He also found that Benji still needed the same prescription. The opticians were so patient and kind, and they understood exactly what we needed. Once the glasses arrived, they made sure to fit them properly so there would be no sliding or movement of their frames while the kids were enjoying life. We also ordered prescription sunglasses for Benji and Faith, and non-prescription sunglasses for Jude so that he could feel included in the glasses brigade. They are still all wearing these glasses and love them as much as the day they got them. Benjamin and Faith are now both brand enthusiasts for My Optometrist Calgary, and My Optometrist Calgary enthusiastically supports Jack & Julie Co’s SEE hat campaign. How wonderful!
This fall, Jack & Julie Co has grown exponentially, and we have connected with a few more families to help us support the CNIB through our SEE winter hats. These hats feature our signature SEE label on cozy, chunky crocheted toques. We want each child in glasses, legally blind or not, to feel supported in their journey. Sadly, older generations were bullied for wearing glasses as kids, and our goal is to make sure that this generation of children can recognize their full potential despite vision issues, and to make glasses cool!