After several months wholly focused on resolving the instructional materials issues at my son’s high school, it was time to turn our attention towards the future. We opened a Vocational Rehabilitation case for my son and met with the local university’s disability services director regarding dual enrollment. Both meetings were emotionally draining as I realized that the process of advocating for my son’s needs in the educational and career environments will always be a challenge.
Now that my 16-year-old son is fully transitioned to Braille, Nemeth, cane usage and assistive technology he understands what he needs in order to be successful. He also understands that he is the best person to quickly identify challenges and attempt to solve issues through clear communication. I’m so proud of the growth he’s experienced over the last 6 years of vision loss. I’m learning to step back and let him lead. As a mom who has fought daily for his needs over the last six years this “letting go” is very emotional.
The letting go feels similar to when my oldest typically-sighted son went off to college. All the sudden I was no longer involved in his daily life and I had to trust that he had learned the skills necessary to be successful in college. Thankfully he’s having a great college experience and is approaching his senior year with many career opportunities. Our relationship has changed, and it was hard to let him go, but I’m still a very valuable part of his life. I’m here for advice when he asks for it, but otherwise, I’m his cheerleader. If he needs me to listen, I listen. If he needs me to help him, I help him. Mostly I find he just needs reminders that he can trust his gut and that his feelings are valid. It’s so nice to have a support network that broadens our knowledge base and world-view, but ultimately we are the only ones who can decide what’s best for us in any given situation.
A recent example of letting go is that my boys (ages 21 & 16) just returned from a trip to Canada to spend 5 days with my youngest son’s mentor. Kai’s mentor, Joe, is an accessibility and blindness consultant in the entertainment industry. He took the boys to set, introduced them to the staff and cast and gave Kai many pointers on career and independent living. Joe lost his vision to Retinitis Pigmentosa in college and has gone on to create a wonderful life: college graduate, successful career and marriage and mentor. I’m so grateful for the wisdom of others who have walked this path and I’m so grateful that I’m learning to let go.
While in Canada, the boys road a tandem all over town, ate at interesting restaurants, were introduced to a new industry and professionals, and learned how to implement their knowledge about things like money exchange, customs, hotel check-in/out and transportation.
After years of guiding them day-to-day, I’m embracing my new role as mom-mentor: someone who is here when they need me but who is more focused on my own health, growth, and well-being. Trusting that they will let me know anytime they need my help because we have developed a close relationship based on a foundation of love and support.
Letting go has opened up space in my life for all the repressed emotions to rise back up. I’m surprised by the amount of anger, grief, and frustration that has bubbled to the top. Now that my boys are both becoming independent I’m better able to tend to some of the harder stuff that perhaps I stuffed down at the moment to take care of the challenges at hand. Right now, my personal journey is about allowing myself to process these emotions through a regimen of aggressive self-care. I’m resting, talking to a therapist, swimming, meditating, painting and learning braille.
I’m always here for my boys and my hubs, but right now I’m prioritizing myself and finding my own voice again. Sending love to all the parents who find themselves at different stages on this journey. Don’t forget to reach out for help when you need it — but also remember to value your own thoughts, feelings, and expertise.
Navigating Blindness 