Friday, June 22, 2012

My Name is LACEY


I am so honored that Jacy asked me to share my experience with you.  I think it only appropriate that I start by saying...

My name is Lacey and I am going blind. 





















Not something I EVER thought I would have said when I was 16 years old.

I had an almost perfect life growing up and had so many ideas of how my life was going to be.  I had hearing loss as a child and wore hearing aids from the time I was 6 years old but this was not going to change my way of life.  

That all changed when I was 19 years old.  I was diagnosed with Ushers Syndrome.

Ushers is a genetic disease with hearing loss starting at birth or younger years and Retinitis Pigmentosa in your teens.  RP is a disease that deteriorates the retinas and eventually leads to blindness.  I am losing my peripheral vision (tunnel vision) gradually, as well as night blindness, and I have very bad depth perception.  Someone with healthy eyes will see 130 degrees.  I now see 15 degrees and eventually, I will be completely blind.  There is no cure or help to slow down the progression of the blindness.

This is how a normal person would see…














And this is how I see… (this is not exact but you get the idea)












I, being a na├»ve 19 year old at the time, did not let this get to me.  My mother and father obviously really struggled with it but I was not going to let this affect my life. I basically ignored it as much as possible.  I still had a lot of sight left and as far as I could tell, it was normal. I did wonder about a few things:  Why do I struggle to walk in the dark?  Why do I always hit my head on things?  Could others really see the people sitting right next to them?  Why did I always run into people at work and out in public?  These questions could go on and on.  But I was not going to let them bother me and get me down.  I HAD A LIFE TO LIVE!

I married a wonderful guy at 21 and lived a completely normal life.  I had 2 daughters and life was good.  As time went on I found myself getting a little nervous driving at night because it was becoming hard to see how far away a car was (or wasn’t).  I found myself tripping over things much more frequently and noticed a big difference in my eyesight.  It was officially starting to affect my “normal” life.

Four years ago, when I found out I was legally blind, I made a decision that has completely changed the way I live my life.  I quit driving.  I must say that this was the lowest point I have ever experienced in my life.  Suddenly, I couldn't go run errands when I wanted, I couldn’t take my children for a quick bite to eat for lunch or take them on fun little outings just to get out of the house for a bit.  How was I going to get the kids to dance, sports, and piano?  The list could go on and on.  I had to depend on others for help with getting to doctor appointments and doing any necessary errands that could not wait until evenings or weekends when my husband was home.  It was so hard to lose my independence and not be able to just hop in the car to go where I wanted to go.  I absolutely hated to ask people to help me.  I did not want to burden them.  It was very depressing.  But I have learned over time that people are very willing to help.  You just have to ask... and I have gotten really used to this.  My children have grown used to walking and riding bikes/scooters whether it be raining, snowing, or nice and sunny, more than most children would have to do.  There are still hard days of feeling frustrated and trapped.  It is still hard to ask people, especially if it is just a trip for pleasure.  But I do feel we have adjusted.  I couldn’t do it without my husband who does so much for me and loves me despite the changes we have had to make.  And also parents, sisters, friends, and neighbors who are so willing to help.  In talking to friends who have Retinitis Pigmentosa they have all said their biggest challenge so far has been to quit driving... so I feel pretty good that I have gotten past this point in my journey.

Ushers Syndrome is genetic, and I have a cousin with the same condition as me.  When I had my two daughters I didn’t really even question if I should have children.  It was just the norm and I couldn’t imagine doing any different.  As the realities of going blind set in, I really struggled with the decision to have any more children.  My girls have not shown any signs of deafness or RP, but what if the next one did?

How could I handle having another baby/toddler and not being able to see them walking right below me?  I met and spoke with a guy who has RP and 6 children.  I asked his thoughts on this matter and I will never forget his response.  He told me that despite his blindness he has lived and enjoyed his life so why should that stop him from having children?  They can enjoy their lives as much as he does whether they end up with RP or not.  My conversation with him changed my thinking.  So much so that I ended up with another healthy baby boy…who is now almost 2 years old.  I cannot imagine my life without this precious little soul.

I have heard from a few people that are blind that they are so glad they lost their sight instantly because it made coping so much easier.  And those with gradual vision loss have said that once their sight was completely gone, it was mentally easier for them.  I’m sure that is probably true but I can’t imagine missing out on the things that I see each day.  I definitely appreciate looking at my sweet children and wonderful husband every day.  I appreciate all the sights around me whether near my home or out traveling.  I will take all the sight I can, for as long as I can. I just have to make the adjustments as they come my way.

There is some promising research and clinical trials in progress that I am hopeful will stop the deterioration and maybe even improve my eyesight some.  I am sure it will come at some point in my life,  I just hope it does before I have no vision remaining. But I will not let this disease get me down.  It may change what "normal" is for me but everyone has their own "normal".

This is just mine... and I love my life!

**Inspiring, right? Remember that the purpose of this series is to open our hearts, to interact, to uplift, to support and to GROW. Lacey will be reading your comments and so, you may comment directly to her if you'd like.
Image credit


22 comments:

  1. Wow, incredible story Lacey. I love your positive outlook on life, you are an inspiration!

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  2. Lacey, you are incredible. I have always whined about my crummy vision(been wearing glasses since I was 7), but I honestly don't know what I would do if I lost my vision. You are so right though, I am always looking for ways to help others, but sometimes I just don't know the best way to do so. Never be afraid to ask! Great reminder for all of us ! And you are helping others by sharing your story !

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  3. Thanks for sharing your story Lacey! What a great positive attitude you have amidst challenging trials. I am sure you are an example to all who know you and especially to your children! You have a beautiful family!

    Jacy - I'm loving this idea already!!! Can't wait to read more about all these wonderful, inspiring women you are connecting with!

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  4. What an inspirational first post to this new series! I'm humbled by your positive outlook, Lacey!

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  5. Thank you for sharing, Lacey! You have such a beautiful life and are such a beautiful person. Heavenly Father had to give you a one-of-a-kind trial, because you're just so strong!

    (Thank you Jacy for putting these together!)

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  6. And reading this post one more time...you're willingness to embrace your life and love it is such an example for me ! Thank you for sharing your story !

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  7. Dear Lacey,

    Your strength, courage, and perseverance is truly inspiring. It is an honor to be able to call you my friend and my sister! You are such an example to everyone who you come in contact with.

    "The marvelous richness of human experience would lose something of rewarding joy if there were no limitation to overcome. The hilltop hour would not be half so wonderful if there were no dark valleys to traverse." - Helen Keller

    Sincerely,
    V Clemons

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    1. Thank you Vanet! You are such an amazing person. I have been so lucky to have so many wonderful examples in my life....you are definitely one of those ladies to me.
      I love every Helen Keller quotes. Thank you! Loves!

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  8. Thank you all for your sweet comments. I will be sure to come back and read these comments when I am having one of those frustrating days. We all have them, right?
    Thanks again Jacy for allowing me to share my story.

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  9. Wow, Lacey, I had no idea. I don't even remember ever noticing that you had a hearing aid. What an amazing woman you are. I'm so glad that you get to see your children. I know mine are the thing I would miss most if I'd never gotten the chance to see them. I hope that research comes sooner rather than later, too.

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    1. Oh, by the way, this is Hanna Adams (maiden name) from the old 22nd ward :)

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  10. Loved this! Lacey, you're awesome! Thanks for sharing!

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  11. I'm so proud that Lacey is my sister!!! Lace, your positive attitude always rubs off on me. I know that when I'm having a tough time you always make me feel better. It's funny that we both depend on each other for a "lift" from time to time.

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  12. Lacey,
    Where do I begin? You are my oldest friend since birth, and I must say that I feel terrible that I have never known the extent of this disease, until just recently. How does that happen? Well, it happens when someone like yourself is such a positive person, one that does not dwell on the negative, and certainly one that does not want to draw attention to herself. It happens because you have refused to define yourself by something that could be so consuming, and so dramatic. I cannot even begin to describe how much I admire you, and always have. You've had a way of just taking something, absorbing only the necessary, and laughing off all the rest. You have a way of being an easy friend - one that I can open up to and talk openly about the things in my heart, and pick up where we have left off - even after many years.
    Thank you for being in my life, and thank you for opening up about this and sharing what your "normal" is. It allows others to learn and grow. I believe that everyone has a disability, whether it be physical or mental. Some are just more apparent. No child is supposed to grow up with perfection in the home - that is a disservice to them, and it's not what God intended. You provide more love, nurture, and hope in your home for your family than most people ever get! They truly are blessed to have you. You're amazing by the way...
    I love you Lacey!
    -Jamie

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    1. Wow! I feel so loved. Thank you for all your amazing compliments. I feel so blessed to have had a friend in you my entire life! Love you!!

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  13. Lacey- you are amazing! This is Kenzee's friend, Amber. What an awesome attitude you have. You are such an inspiration to so many. Your family is blessed to have you in their lives!

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  14. I worked with Lacey in Orem years ago (when she was pregnant with Ryan) and she is awesome! She is so smart and taught me so much! (accounting wise & in life).

    Thanks for the story!!!

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  15. Lacey,
    I am at a loss for words. I am so terribly sorry for this loss. I can't even imagine what you are feeling and going through on a daily basis. You are amazing. You and your beautiful family are in our prayers. And please, I know we don't live too far away, so if you ever need me to come and get you for errands or anything...let me know. Lots of love, Niki

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  16. Lacy- you are such an amazing woman! Thank you so much for sharing Your story. It has inspired me to never let things get in my way and to follow my dreams. I knew you had some struggles but the pics you posted on how you view things have really put that into perspective. I feel like a jerk for turning the lights off at Zumba for cool down. I appologize if that has ever made things difficult or made you feel uncomfortable, but I applaud you for how much you do because it's never gotten in your way! For those of you that don't know, lacy is a dancing queen! She is truly amazing inside and out! You have one of the sweetest sisters in the entire world and I love Ryan to death! Thoughts and prayers to you and your family that there is a breakthrough for your sight! I love ya and keep on keepin on!!! :)

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  17. Lacey - I am so grateful that our paths have crossed. Thank you for this inspiring, uplifting post. Cheering you on and thanks so much for doing the same to me. Much love.

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  18. Lace! You are a rockstar. I just love these stories, because it give me hope. We all need to live life a little better. Love you!

    AnnDee

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  19. Lacey, I love your family picture!!! I am so grateful to have you as a friend. You inspire me to take my challenges and learn from them instead of letting them get me down. I can't wait till our next girls weekend!! :)

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