Memoirs of a Blind Mom…Sometimes It’s Just Hard

This is another repost from our family site. I was very reluctant at first to post it there, but as I mention below, I think sometimes there is value in being true to ourselves and not always presenting the “Pinterest Version” to everyone. I thihnk sometimes being authentic can be really valuable. So, even though I’m feeling really vulnerable putting this out there, here goes as I hope maybe it will be helpful to someone. (Originally posted in Fall 2015).

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I wrote this a few weeks ago and then started having second thoughts about posting it. I don’t want to be whiny or complain because I truly have so many blessings. I fear that this will sound like I am doing just that. But then I reconsidered because I think admitting our weaknesses is also important, and perhaps the sharing of my experiences will help another. Plus, sometimes having a good cry makes you just feel better. So with that, I share this post with you.

I had a major meltdown this week. I get frustrated and upset from time to time, but this was pretty out of character for me. I slammed my useless laptop hard with my hand after entertaining a brief but serious thought of throwing it out the back door, began yelling to my husband about my frustrations, stormed up the stairs to my room and flung myself down in a puddle of tears in our rocking chair for a self-imposed time out. Yes, I do have the occasional meltdown from time to time, particularly when I’m feeling especially frustrated, over extended, and over tired, but not like this one. I don’t usually get so upset. I’m a little embarrassed to admit this all now, so why am I writing it and posting it on the Internet for all to see? Good question.

 

On this particular afternoon, I became increasingly frustrated and impatient with a task I was trying to do on the computer. But, like any good parent knows, the meltdown is usually caused by some bigger underlying issue. Yes, I was feeling overwhelmed, and yes, I stayed up too late the night before, but the real issue was much deeper and has been growing for a while now. I was struggling with the computer because I was having difficulty once again accessing a website that was inaccessible for a screen reader. What should have or would have taken someone thirty seconds had been frustrating me for over ten minutes. It was a little thing, but this kind of “little thing” happens all the time. It seemed so unfair! I just wanted to read something really quick, but once again, because I was blind, I couldn’t access it. My anger really didn’t have anything to do with the computer, even though sometimes I joke that my personal “Hell” would be spending an eternity trying to fix them. Instead, it had to do more with the fact that sometimes it’s just hard to be blind and I hate it…yes, I actually just admitted that. Yes, me, Miss Positivity, blind organization chapter president and advocate for all things blindness thinks that. I never admit that, even really to myself. I don’t allow myself to. All my life I’ve been taught to be positive, find the silver lining, count my blessings, make lemons out of lemonade, and just “Pollyanna” up through the hard times. I’m supposed to be strong and not show my weakness, put on a good brave face and soldier on. But frankly, it’s just hard. It’s something I can’t change and have no control over.

I remember how I went through a bit of a grieving period when I first went blind as a teenager. Over the years I’ve noticed that every time I encounter a new phase of life, I go through another sort of grieving process all over again—turning sixteen and not being able to get my license like my friends, watching my siblings get theirs, moving away to college and worrying how I’d find my way around campus, seeing friends of mine get engaged and wonder if I’d ever get married because after all, who would want to marry and raise a family with a blind girl? Failing an internship at a children’s hospital because I’d walk into hospital rooms to offer child life services to patients only to find I’d just given my shpill to an empty bed, and then wondering what kind of career I’d ever really be able to do? Now as a young mom I find myself going through this process once again, only this time it seems to be hitting me harder than usual.

 

As a mom, I greave now for little things like not being able to hold my child on my lap and read aloud to them. Instead we have to read at my desk with a magnifier, listen to someone else’s interpretation of how a story should be read on an audio book, or worse yet, try to read braille to them and hope they don’t get bored before I finish the first line. I miss that we can’t jump in the car after dark and go for a ride—something my family did all the time while I was growing up, especially at Christmas time to look at lights. I long to be able to take them on bike rides, hikes, camping trips, or or road trips cross country without having to worry about coordinating for a sighted guide or driver to accompany us and working around someone else’s schedule.

I hate that I sometimes dread taking my children for walks around the neighborhood or to the park because I have to be a little “extra vigilant than most parents so as not to lose them. What should be fun and enjoyable often ends up being extremely stressful for me. I constantly worry as I try to keep track of them and often feel quite anxious when they get more than a few feet away from me (out of my visual field) or out of ear shot with their bells on. I often come home with real headaches as result.

I leave playgroups with other moms feeling sad and sometimes embarrassed that I have to take the bus, or cab, or rely on the kindness of others to chauffer us around. I admit that I’ve even been jealous before of moms with their minivans or SUV’s full of properly and permanently installed car seats while I juggle mine on my arms and pray we’ll make it home safely without an anchor strap because I can’t remember all the various ways to properly attach it for every make and model of vehicle in which we may happen to ride on a given day.

 

I cringe every time I let my four-year-old daughter leave the house in a miss-match outfit of her own choosing for fear that others will look at her with pity that her “poor blind mom couldn’t match her clothes” rather than seeing how I’m really allowing her the freedom of self-expression. I fight off nagging fears in the back of my mind when one of my children has a bump or bruise that might be mistaken for negligence because of my “lack of sight and inability to care for them.”

 

It frustrates me sometimes that decisions such as where we live or how many children we will have are governed by blindness. It frustrates me that I worry about what others are thinking when we go out in public as a family. Do they look at our children with pity, or silently label us as irresponsible for bringing children into “our situation?” It frustrates me that I’m often reminded by passengers on the train that I’m carrying a small child on my back and to be careful when I sit down…as if I didn’t notice the extra weight on my back, or that I’ve had someone accuse me of suffocating my child in a front-carrying pack because he was afraid I couldn’t see if my child’s face was covered or not. . Frankly, it’s all a little emotionally exhausting sometimes.

 

So, despite my randtings, I know that deep down I truly am blessed and have so many wonderful things going for me. I could write pages about all the great things I still can enjoy despite my challenge, the blessings I enjoy, the wonderful acts of service that have been shown to us by others, or some of the unique experiences or opportunities I’ve been given because of my blindess, but for now, I just need others to know that it’s hard sometimes. I confess I am weak and occasionally host my own pity party. So for what it’s worth, thanks for listening.