Blindness and the Sixteenth Birthday

Last week was Kai’s 16th birthday.  I remember when we first heard the words “your son is going blind” and the feelings of dread and loss that swept over me when I realized he would not be able to drive.  It’s been 6 years since diagnosis, but right now we are feeling the diagnosis and loss acutely — like a fresh wound.

With his mastery of orientation and mobility (O&M) skills, he’s become a fast walker and stays super active: skimming, skating and drumming. He attends advanced placement courses independently utilizing technology and Braille. He lives such an active, engaged life that his friends often forget that he’s blind. Which explains why so many of them ask: “When are you getting your license?” To which he chuckles and says, “Think about that for a moment.” After an awkward silence, they typically reply with something like, “Duh, I’m sorry” or “Ah, man, I forget that you can’t drive.”

Kai is so capable that we often forget that he is blind. I need to repeat that for myself: “My son has become so capable and well adjusted that we often forget that he’s blind.”

This week, he and I have had several emotion-filled discussions about “not being able to drive.” I do my best not to problem solve because we both know there are options, but the grief needs a voice — an outlet.

When I think back to the beginning of this journey I can barely believe all that has happened over the last 6 years, most of which I never anticipated. But his 16th birthday stood out in the beginning as something that would be a huge hurdle, and it’s here now.  So, for this moment, we are going to talk and cry and be angry.  Thankfully, after feelings are expressed and shared, their intensity begins to fade.

Later, I initiate a discussion about Uber and Lyft and mass-transit systems. He remembers how great the Metro system was in DC, and I tell him about MAX in Portland. Yes, there are options, but there is also grief.  I need to be careful not to skip over the grief by “silver-lining” it. Grief is important and needs a voice. If it’s not felt it becomes stuck in the body and creates issues later. I know this from experience.

On the big day, we are able to get on with the business of celebrating this milestone. Sixteen doesn’t mean driving, but it’s become a grand celebration of his independence. All those hours of cane, Braille, and technology training pay off. And Kai’s birthday weekend is celebrated at his favorite place, the beach.  Skimming the days away then “chillin’ on the beach with friends” after dark. Eating cupcakes and caramel apples — and laughing, so much laughing. He’s thrilled about his gift: a fully tactile and gorgeous Bradley watch. At one point over the weekend, he quietly tells me, “Please video a few skims, but then make yourself scarce…” I laugh and I’m so proud of the young man he is becoming. I begin to relax and feel my grip loosening again.  We made it over this hurdle and found new reasons to celebrate the milestone.

“I need to be careful not to skip over the grief by “silver-lining” it. Grief is important and needs a voice.” – Kim Owens

 

sixteen
Image Description: A crowded beach and a group of young men and women holding skimboards and looking out at the ocean. Kai is wearing a bright yellow “Blind Athlete” shirt.

18 thoughts on “Blindness and the Sixteenth Birthday

  1. Having a blind daughter who just turned 16 last week, I relate to much if what you’ve shared in your post. This has definitely been one of the more challenging milestones that we’ve faced, as our daughter works to find her path to adulthood.

    Liked by 1 person

  2. It’s funny but even I was given my diagnosis and told that my eyes have retinitis pigmentosa and that I am going to go blind when I was 16 years old. I fainted in the hospital. But I am living I am doing well. Stay strong dear. Life is not easy both for the patient suffering with this horrible disease or with the caregiver. God knows I put my parents through so much. Sending you hugs. God bless

    Liked by 1 person

      1. Yes. But honestly as I grew older, all the visits to eyes hospitals would send me into panic. You step into that building with hope and come out listening to the words that sorry there is no cure. It Breaks my heart even today
        I think besides anything, mental strength and emotional support is very important for the child.

        Liked by 1 person

      2. I agree. My son wonders why we bother to travel to his annual appointments anymore as his glasses no longer serve a purpose and we are always told the same thing…. it can be so heartbreaking. Thank you for reaching out. I have no idea of you are on Instagram or not but his page is @kai.owens and he loves hearing from other people with RP who breaking barriers. Thanks again! And please keep in touch.

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      3. Hahaha I stop going to the hospital from past 2 years. It’s totally useless anyways. And no I am not on Instagram. Just wordpress. No social media. Students and college and books keeps me so occupied that I hardly get time for social media. But WordPress is a fantasy land for me. . Yes I will stay in touch. And you can reach out to me anytime.♥️♥️♥️🤗

        Liked by 1 person

      1. I study Humanities, psychology and finished my PhD in psychology this year itself. Just a few months back I got placed in a government job based on my own merit and no reservation of handicapped. So today I am a proud psychology professor in India. My parents never give up on me. They were really really really involved with my studies. I cannot be even begin to tell you how much. The road has been very difficult but I made them proud and I want you to remember that no matter what, stay with your child. Always

        Liked by 1 person

      2. Yes stay with him. I know I am telling you all my story here but I just feel it’s necessary to share. Because even though my parents always wanted to make me financially independent since the day of my diagnosis and now that I have finally managed to be properly placed in a job, there are still so many challenges because the world does not easily accept blind people. And so once again I have to hold my parents hands. The job is there alright but we can never really be independent. The society has to accept blind professors and there are students of every sort. But things get easier, there are happy and sad moments in a day.

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      3. A meeting was held quite far from Earth!
        It’s time again for another birth.
        Said the Angels to the LORD above,
        This Special Child will need much love.
         
        His progress may be very slow,
        Accomplishments he may not show.
        And he’ll require extra care
        From the folks he meets down there.
         
        He may not run or laugh or play,
        His thoughts may seem quite far away,
        In many ways he won’t adapt,
        And he’ll be known as handicapped.
         
        So let’s be careful where he’s sent,
        We want his life to be content.
        Please LORD, find the parents who
        Will do a special job for you.
         
        They will not realize right away
        The leading role they’re asked to play,
        But with this child sent from above
        Comes stronger faith and richer love.
         
        And soon they’ll know the privilege given
        In caring for their gift from Heaven.
        Their precious charge, so meek and mild,
        Is HEAVEN’S VERY SPECIAL CHILD.
         
         
        by Edna Massionilla
        December 1981
        The Optomist- newsletter for PROUD
        Parents Regional Outreach for Understanding Down’s Inc.

        Liked by 1 person

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