A Love Letter to Parents of Children with Nystagmus

I have had the opportunity to view a lot of blogs popping up about nystagmus (yay!), and I noticed that the majority seem to be by parents and not by people who actually have nystagmus.

At first I was rather surprised. And then I thought about it. For the most part, children don’t really notice the nystagmus. They don’t know the difference between what they see and what is “normal.” I myself did not even know what it looked like until I was a young adult. And when I did finally see it, it freaked me out! Even though I knew a decent amount about the condition and have lived with it forever, it was still unnerving.

And now I know why there are more blogs by parents than by my fellow shifty-eyed friends. It can be scary as hell to see the first time, and I can’t even imagine what it feels like to discover it in your newborn, especially when you have no idea what it is. And you know what? I officially give you permission to feel the following:

Scared

Because holy crap, their eyes are not supposed to move like that! In the beginning, parents can go into a headspin about all the different things they think it could signify: loss of sight, neurological disorders, etc. etc. This is a condition that is not widely known, nor is there a great effort to educate the public.

Mad

Because this is not what you signed up for. You signed up for a normal child, not one with a disability. Yes, this is a common emotion, and that is totally ok. Be mad! It sucks! but then I promise after a while, you will realize that your child is totally normal, and that this is not necessarily a “disability.” I encourage you to experience this emotion as a part of processing the diagnosis, but I also encourage you to after a while, be open to the fact that this may not be as big a deal as you think it will be.

Frustrated at the lack of information

And let me tell you, I am with you on this one. I think it’s especially hard on parents. You want to be as informed as possible so that you can help your child deal with it. And you know what? You and I together, along with all of our other shifty-eyed friends and parents, we can change the lack of information out there. Write your blogs, talk to the few people who are conducting research. And talk to people like me and to other parents who are going through the same thing. In this way, we can get our own “research.” We can learn from each other.

But I hope that after a while, you step back from all of the hard core scouring of the internet and enjoy time with your child. Because it will make you crazy. And because, look! Your baby is so freakin’ cute! It is WAY more fun to play with them than to be glued to the computer screen! And oftentimes, it is more beneficial to them in the long run. They know there is nothing “wrong” with them; they just want to spend time with Mom and Dad!

Frustrated at some doctor’s “bedside manner” or lack thereof

Man, I’ve heard some awful stories. My own pediatric ophthalmologist was a saint, and I associated going to the eye doctor with watching Yogi Bear cartoons and getting a toy afterwards if I did not cry (As a side note, bribing works. I’m still able to take eye drops without a problem). But not everyone is so lucky. Also, many eye doctors are dismissive. My secret belief is that it’s because they only know enough about the condition to diagnose it and rule out other more “serious” conditions. Which is frustrating.

Ashamed

This one is the extremely large and sensitive elephant in the room. Many, let me repeat that, MANY parents experience shame of their child. They feel ashamed when someone looks at them funny or makes a comment. They don’t want people to see their babies. They wish their children were like other children.

And this comes with a huge amount of guilt.

Parents, I want you to know that it is TOTALLY NORMAL to feel this way, and so, so common. And you know what? It will go away, I promise. Please do not beat yourself up over this. I have nystagmus, and I do not blame you at all. You are human beings. The only thing I ask is that if you do experience this, you never let on to your kids, even once the feeling goes away. If my parents felt ashamed, they never ever told me, even after I grew up. And I think that it’s because of this that I can look at it more objectively now. But please, find an outlet. Blog! Talk to others who have felt the same way! It’s amazing how a little understanding can help heal all wounds.

*          *          *

So Parents, thus ends my love letter to you, and it is a love letter. You have a tough job, way tougher than us shifty-eyed people do. I so admire you and appreciate all that you go through for your children. Remember to relax and enjoy them.

I will end with a little note from me to you: It’s going to be ok 🙂

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27 thoughts on “A Love Letter to Parents of Children with Nystagmus

  1. Thanks for the post – Sam is 8 months old and we are still getting over the initial shock,,,,,

    It’s nice to hear that it will be ok,,,,,,,,,,

    Linda

  2. Thank you very much for your letter. Our son was diagnosed at 2 months with ocular albinism and has nystagmus. Finding this out 2 month ago, I still am going through many things you described. Your words are encouraging and uplifting. Thank you again 🙂

  3. Thanks for sharing! My 11 month old son has nystagmus and it’s so great to hear from someone who has it. It’s so hard to find information and when I do, it’s often negative. I appreciate your positive words on the subject!

  4. Thankyou for such a lovely letter it has brought a great deal of comfort to us. Scarlett is 8 months old and was first diagnosed with nystagmus when she was 2 months x

  5. Pingback: The first week » Living with Nystagmus

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  7. Thank you! Edward was just diagnosed at four months but I had noticed his eyes since he was two months. I just didn’t want to think about anything being wrong with my baby because honestly, he looks normal to me even with the shifty eyes. I’m glad I found out but at the same time the first time I went online to research nystagmus, I flipped out! I was thinking everyone is going to make fun of him and his dad is going to be so disappointed at finding out he can’t play sports BUT I’m glad I found this site. It makes me feel a lot less worried for his future. Thanks again.

  8. hello im trying to contact the young man whom was able to join the military i have been temporary disqualified everytime i try and i will not let that stop me i would like to know how you won your fight and if your willing to help me out on mines well i hope this gets to you or someone who can help me thank you however for being able to spread hope just the thought of someone being able to make it gives me a strong will to fight!!!

  9. Hi, thank you for the very good and encouraging words.
    My baby was diagnosed at 3 months.

    I am currently writting a book on Nystagmus, i would like to hear some of your stories and add them in to the book. Please email me at cathrin@hicklings.co.za if you are interested in doing this…..

    will give you more details over email……

    thanks

  10. Dear Johanna.

    Thank you for a magnificent letter!

    My 22-month-old daughter (who is also named Johanna!) has CN and we discovered it when she was three months old. It was a shock for us – her parents – and personally I went into a state of depression mixed with the feelings you describe so well in your letter.
    I started to blog in order to vent some of my locked-up emotions and it was truly cathartic, but after a couple of months without posting entries I visited the blog and I couldn’t believe my eyes. I felt so ashamed of what I had written and I felt that it had nothing to do with what I was experiencing now.
    In a spontaneous act I deleted most of my blog entries and began focusing only on the practical matters regarding my daughter’s nystagmus.
    I don’t regret having deleted the posts, but neither do I feel ashamed of them anymore. Those were my feelings at that particular time and telling the world about them was necessary.

    Reading your letter only reaffirms how important it is not to keep those unwanted feelings locked up inside.

    Thank you for being so understanding and tolerant!

    With love from a Danish mother.

    • I know exactly how you feel. My daughter was recently diagnosed, she is 5 months old. It’s so scary when there is no way to fix something.

  11. I have literally stumbled on to this blog and I must say….Jo, You are amazing.

    I am a 65 year old “shifty-eyed” woman who as lived with nystagmus all my life. I still find it funny that when I type nystagmus… there is a red line under it as if I misspelled a word.

    I have been able to accommodate my self for 45 years as an accountant… working with numbers… knowing that I will transpose or totally misread what ever I might be keying… I had total control over my environment in which I worked… until recently. I lost my mean of living due to the nystagmus. I never told anyone at work about it so they did not take in to account the work environment or need for accommodation (which is minimal). Nor did they care to even discuss possible issues with my work.

    All that is needed is slight magnification, good lighting, printed reports in a larger font of 12 best at 14 (not 6 or 8) to check my work against a hard copy, yellow highlight fields in which to key data (computers are wonderful that way) and a little extra time to validate keying. Yet, I was dismissed for … of all reasons….too many transpositions. I have had this experience a few other times and took the “blame” as I wasn’t careful enough, smart enough, worthy enough, and my self esteem tanked. Even at 65, those old school yard feelings emerge.

    NONE of my coping strategies were in place…

    Now I am regrouping to try and understand exactly what it is I need to do to make myself marketable. in this economy and being 65.

    I did not know that what I have lived with all my life was a medical disability until 3 days ago. I just thought it was something I had that very few people had but it was no big thing… until I realized that people did not understand it nor cared to understand it. I have met one … that’s right …one other person in my life that also was “shifty-eyed”.

    Your parents must have done something very right. You are funny, smart, graceful in your writings and a true pleasure to “bump” into.

    To those parents of those little “shifty-eyes” , please, please, while your children are young, learn all you can about their strengths and guide them to their passions. Accounting may not be the best field for those of us with nystagmus.

  12. Thank you for writing your letter. It is beautiful and made me cry! It is so nice to hear words of acknowledgement and encouragement!

    I am so happy I found your blog!

    xoxo, Mother of a beautiful little boy with “shift-eyes!”

  13. Wonderful words! I have 3 year old twin boys with ocular albinism and nystagmus. I have another boy who just turned 2 months and the signs just started so it looks like we will be making a visit to our PO again soon. Although this runs in our family no one really knew much about it so I have done the research myself and am feeling content that we are doIng everything we can for our boys and that they are smart, happy, and capable little guys! Thanks for the positive words!

  14. Thanks for creating this blog. My grandson who will be 6 soon recently came to live with us and we noticed this rapid involuntary eye movement. It comes and goes so I am not sure if this is what people with nysatgmus usually experience or not? He has been to an opthalmologist and and ENT but no signifcant findings. Also it has changed from horizontal eye movement only to fluttering eyelids and shaking of the head and neck. It is really scary, not sure how to find the right type of doctor who has knowledge and experience with this condition.

  15. Thanks for your post -it brought me to tears. My son is now 6 and has INS. I knew from the moment he was born that his eyes were different. I remember I kept saying that something was wrong and everyone, including the staff, said that this rapid movement is normal and to wait it out. A new world has opened up to us and we are learning more and more and often grow more confused. This morning our oldest asked why his brother looks out of the corner of his eyes and turns his head to see… thus, the conversation about Nystagmus opened up. My 6 year old has only known that his eyes are different so he learned this morning why. I am certain that there will be many more conversations. It was somewhat of a relief but scary too. Not sure why – just was. I suppose I liked that he did not know. Kept him more protected. Anyway, thanks.

  16. I am reading this blog, crying my eyes out. You are an amazing women and the other brave people who, also share their lives. As a parent of a child with nystagmus, we realise their limitaions. It has made me realise that it is OK to have nystagmus.
    “You turned out great…”
    Many thanks and keep it up.
    Your blog is definately making a differene.

  17. I am 40 years old and have had it for my whole life I have never let it afect me. or what I wanted to do. I am maried and have 4 kids. all boys and 3 out of the 4 have it also I have a job were 20 people work under me. I trend to find if you act like there is no probem then other people see it as not being a problem.

    • Thank you for sharing with us, my three year old has congenital nystagmus but he has to head tilt for any distance vision. Do you have any experience with a head tilt?

      • people with nystagmus have a null point ( best focal point ) the head tilt is to find the null point its quite normal in nystagmus

  18. Would someone with congenital/latent nystagmus be able to tell me why my 7 yr old daughter has difficulty in doing handstands/ cartwheel. What it feels like when you do them? She is the only one who is unable to do them in her class. Why she is unable to go into a revolving restaurant? And do you know when your eyes are moving? Is it blurry or clear? Thanks

  19. I just found your blog and I have really have enjoyed reading your posts. My son is 4 months and was diagnosed 2 weeks ago, so we are still trying to get over the initial shock. Now, I am trying to find out as much as I can about the condition. As a mother, it is difficult reading about how it will effect him his whole life. I don’t feel a sense of shame (although maybe that will come with age), but I feel an overwhelming feeling that I need to protect him from anyone’s criticism! I know how mean kids can be. Please tell me, how did your parents give you the confidence you need to cope with this condition? I struggled with my confidence throughout my life and I have no disability. I want more than anything to teach him the tools he needs to be the best person he can be. Thank you again for making this information available.

  20. My daughter who is four has it and although I can relate to some of the things that you have put here like scared when you first find out, etc i have never, and will never be ashamed of my child.

  21. Hi Jo. Your blog is so informative that I am requesting your permission to either include your blog as a document on our website http://www.nystagmusawareaustralia.com We have recently started this website to unite people with Nystagmus. (my husband is 62 and has had nystagmus since birth). We have members who are parents of children with nystagmus and I am sure that your blog will help them understand their feelings of guilt, pity,anger and sadness. Please be assured that if we can use your blog it will be your name that appears as the author.

  22. Hello for Norway. So Nice to find You’re blog. I havnet red to much og it yet, but I will. I have a fore year old son born with this condition, and like You say, there is not many answers to get out there. To times a year we go to a spesialist, and she tells us that it looks fine, and” I see You in 6 months again”. I want to know how this effects Markus in his daly life. He is a very happy boy, but is there thing we as parentes should be awere Of? Can he play football, is it hard for him to read, is he just a frustrated 4 year old ho dosent like to sit still, ore is something bothering him? 🙂 in What way will this effekt him? Will he get mor tired at school? As a mom I just wont to know if my little boy is doing ok, and that he will be ok:) he is a very smart boy and seems very fine, but I feel that it’s hard for him to consentrate over time, he dosent like writing his name, he dosent like painting and so on.. Hope You can give a little worried mum
    Som positive and helping answers. Sincerely Lise Mette Whelan

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