Friday, January 4, 2008


I don't think this will be my "issues with motherhood" post, but I was reading Vada's post over on Mormon Mommy Wars and it got me thinking about my own son with disabilities. My youngest son is a year old. He's blind. It was such an odd experience, when even at a month and half old, I could tell that something was wrong with his eyes. I knew it was true, but didn't want it to be true. I kept telling myself that blindness wasn't so bad, that there are worse disabilities to have, that if he was really blind, he's still be able to live a functional life. But when we finally saw an ophthalmologist at six months, we were heart broken to have it confirmed.

I don't know how to express how overwhelming it is to be the parent of a blind child. How painful it is to hear people tell you how special you must be to have received such a child when you know so deeply your own inadequacies. To feel the pressure that such statements put on you to do a stellar job of raising your child. People keep telling me that I'm the perfect mother to have such a child, but only I know how dark my parenting days get sometimes. Only I know how resentful I sometimes get at being a mother when I could have been doing other things right now. Only I know how much I struggle doing little kid things. They couldn't be more wrong when they say things like that. I live in constant fear of having my son grow up and think that he might have been better off had he had a more adequate mommy.

And to make it worse, I know how important it is to do things right. To balance his needs with the needs of my older son who is normal. To make sure I explain enough to this little guy so that he makes those connections that are second nature to my sighted child. And yet I feel like most days are abject failures. Days when I get so scared and overwhelmed that I sit and stare at the computer so that I don't have to deal with all this. I love my boys more than I ever thought possible. I feed them, clean them, clothe them, but sometimes I worry that I'm failing them miserably because I'm not emotionally able to handle their needs. Do they know I love them? I think that's what scares me to death--is that they might doubt that. That they might grow up, look back, and doubt that I was doing my best and that I loved them.


Rich said...

After reading what you just wrote, I have little doubt that you are a good, caring mom, and that both your sons are going to grow up and come to fully know that about you. None of us are perfect. Blindness is a HUGE challenge. I long for the day when we have the technology available to correct disabilities like your son has (I hope we aren't far off), whether we are able to repair damaged eyes with stem cell therapy, or whether it takes the form of Jordi-LaForge (Star Trek TNG) sensory shades. :^) My profoundly deaf (ex) M-I-L received a cochlear implant some years back, and now no longer has to rely on sign language to communicate in person, or use a TDD; she can converse over the phone with little problem (even if everyone sounds a bit like Donald Duck!). Have hope, hang in there, and keep doing what you're doing!

G said...

oh lessie... that almost broke my heart to read!

my first impulse is to write all those things that you said people have already told you (about how good you will do, how lucky he is to have you for a mom, etc...)
and, well, I guess I will let that impulse stand, from what I know of you, your son is very blessed to be in your house.

but that probably doesn't quite cut it when you are at your wit's (and emotion's) end.

so, ditto what rich said; "Hang in there"

Julia said...

Hi, I hope you don't mind the snoop. I linked to you from fMh. I just wanted to say that your post made me cry. My little boy isn't blind so I can't pretend to know what you are going through. However I go through my own "am I doing this right? will he grow up to hate me? how can I do enough for him?" thoughts everyday. My little guy was not in the plan for right now but showed up unannounced anyway. I never want him to feel that or think that I didn't want him. Maybe all mommies go through this to some degree. I wish you the best!

Lessie said...

Rich and G, thanks so much for your comments.

Julia, thanks for stopping by. And thank you for your kindness as well. I'll look for you on fMh.

shukr said...

wow Lessie.

Isn't it awesome, though, that you knew. Mothers, we're amazing, incredible, *insightful* .

I landed into motherhood during teacher training. My son grew in my belly as we commuted to and fro. together. I still love to study and learn and grow. As they get older I'm finding that those cravings are coming in handy, those aspirations and passions are being passed on and I'm channelling them in a new way.

My horizons have opened in a way I could not imagine even as my physical reality appeared to grow smaller, and I'll bet that your insight has grown deeper through your son's not seeing with his eyes.

We all have to doubt and question. It is what keeps us sincere .D

We are doing a fantastic job ,)

Lessie said...

Thanks shukr. It is incredible the insight we have when dealing with our children. And yes, I hope to instill my boys with their own passion for learning. It worries me that they might go through life and never feel the need to explore.

(chandelle) said...

my god, lessie, i feel that way every friggin' day and i don't have a child with a challenge like blindness. my kids are healthy, happy and by all accounts normal - they just happen to have been born with the significant disability of having a largely emotionally-absent, confused and petrified mother. my anger most days scares me, and the sadness when i consider how much i love my children and yet how little ability i have to withstand hours on end with the both of them together. it is so scary and i realize that most of my attempts at something that looks like parenting are futile. it's terrible stuff; a lot of it is humiliating and demeaning, and makes us question our most innate ideals and talents. nothing humbles us like having children. i don't have any advice for you, and i feel slighted in my own struggles because i don't know what it's like to have a child with a disability. i just wanted to let you know that i'm right with ya, babe. but we'll make it.

Anonymous said...

Oh heavens, enjoy your child. I am the parent of a 9-year-old vision impaired son. He was diagnosed with Leber’s Congenital Amaurosis at four-months-old. He is fine. He is healthy and happy and full of options for his future.

It is easy for me to see this now, but when he was one I wasn’t so sure. I often describe my child’s first years of life as a constant repainting of a picture. I tried to create a mental picture of my son’s future, but due to my own misconceptions and lack of knowledge I had no idea what was possible. When he was very small, I wasn’t even sure how exactly he would hit typical milestones—walking, talking. As I am sure you are realizing, vision impaired children certainly take a unique path through early childhood development. This being said, I may have provided the opportunities and possibly the environment for him to learn and explore, but he achieved his goals in his own way when he was ready. I began to add more detail to my picture once I got use to his pace of exploration and achievement. Then I began to worry about socialization. Will he have friends? Again, the play skills and social skills that typically developing children acquire sometimes require extra Mommy intervention for our VI children. I didn’t always know exactly what to do, but I must have sufficed because he has plenty of friends. As he grew, my picture for his future became more and more elaborate. Now, as I said, I see endless options, and looking back, I don’t regret one moment of effort.

No one expects you to have all the answers. It is an unfamiliar experience for most. For this reason, there are countless resources for parents of VI children. I found talking to other parents particularly useful. I also gathered a handful of VI adults to consult. Truly, what my children really needed was for me to relax and be happy. If this is hard for you right now, I suggest you get some help.

Lessie said...

Anonymous, thanks so much for your comment. It's good to hear from someone who has gone through some of the same things. I actually do have a wonderful support network: a vision teacher, occupational therapist, developmental therapist (although I'm thinking about not doing that right now, it doesn't seem to be helping). And my vision teacher has parent groups where we're able to get together and discuss these challenges.

I just still have days when I panic and worry that I'll do more harm than good to my son.

But thanks so much for reassuring me that he'll be fine. That really makes me feel better about his future.