In part one of their story, the Derksens shared their experiences surrounding their youngest son Benji’s diagnosis of albinism and the first steps they took to help him. Here is the second part of their story in their own words.
It’s interesting how much parents can research and educate themselves on a diagnosis when it pertains to their child. We read books, articles, and joined Facebook groups in an attempt to get a glimpse of what this diagnosis could mean for Benji and his future. It all went by so fast, but felt so slow. We were encouraged by our family and friends, and their support showed us that he would be just fine. He had so many people cheering for him, praying for him, and supporting us. It was at once one of the saddest times, and yet one of the most peaceful times.
As Benji grew, he continued to gain comfort with his vision. Although he started reaching for toys at a later stage than our other children, he was equally as excitable. He could even find small objects on the floor or on his playmat. We also began to notice differences when it came to his mobility. Many children crawl, or express interest in crawling, before they turn one. Benji did not. He even eventually stopped reaching for small objects, and would instead sit in the middle of a room and cry. As parents, we found this equally frustrating and saddening. We felt helpless trying to teach him to crawl or to find something to play with while trying to take care of the other kids.
After recognizing Benji’s frustrations, and with Dr. Stephanie on maternity leave, we booked an appointment at our local optometry clinic. We saw Dr. Rob Kloepfer and explained the situation. He was very thorough and cautious in diagnosing a need for glasses. After consulting with Dr. Stephanie, Dr. Rob suggested getting some prescription glasses for Benji’s farsightedness. At that time, Benji was also in the midst of 3.5 months in a head shape helmet. The helmet in combination with the glasses brought some stares and made it interesting being in public.
Dr. Rob also recommended glasses for our eldest child, Faith. She had been farsighted for quite some time, and although a little farsightedness is typical for small children, Faith fell outside of the expected range for her age. We ordered Faith’s first pair of glasses and were thrilled, as was she. Faith could finally colour in the lines, and she was so proud since she had previously been teased for her “scribbling”. The excitement faded once she realized she had to wear them to school every day, but she was comforted by seeing many of her classmates going through the same thing, and nowshe loves choosing glasses.
For Benji, the prescription, although quite strong, does not fully correct his vision. He still has nystagmus, light sensitivity, and all of the other difficulties that come with albinism. However, Benji received his first pair of prescription glasses on May 19, 2015. We will never forget this day. It was two days before his first birthday, and after trying them on at the clinic, he started laughing when he saw his sister, grabbing at the debit machine, and trying to scramble out of my arms. It was an exciting time. After going home with his first pair of glasses, Benji became a new boy. He had so much more determination and he seemed happier. He learned to crawl the very next day. We are still so thankful for that first pair.
Since then, Benji has tried out a few different frames and has enjoyed every pair. He asks for his glasses when he gets up each morning, and will ask for sunglasses when going outside. Benjamin seems to know his need for glasses and has rarely refused to wear them. People would often stop us and ask how we get him to keep them on. We didn’t have an answer, it was all him. Since his first birthday, Benji gets stopped by adults continuously to admire him and his cute glasses. He doesn’t understand the big deal and just laughs. Small children are often curious about his glasses and try to take them off of his face. He has learned to say “No, mine gasses” and walk away.
Benji finally learned to walk when he was 18 months old. Understandably, he was terrified of it at first. With two active siblings, it was a busy world around him and crawling was safe. He was very slow and unsteady when he started moving his little feet and he needed quite a bit of help. He eventually learned how to move about quite comfortably at home, but he tripped often when we went out. As it turns out, albinism also alters depth perception. So for example, he couldn’t tell if a change in the flooring was a stair or if it was flat, he didn’t see curbs to step up or down, and ramps were all together confusing. We took him out around town to practice often, but the curbs and doorways were still a problem.