Friday, June 7, 2013

Seeing the world through Lucy's eye(s)


Let me take a small moment to introduce you to the sweet little love of my life, Lucy.  Born to us on April 1, 2008, she was 7lbs 14oz 18 inches long and she was a week overdue.  She was a calm newborn, an active baby and has been a feisty toddler.  She was born with red hair, that quickly turned blonde, and and she was instantly the greatest thing that happened to my life.  She was born with ten fingers, ten toes and two eyes, however, only one of those eyes worked.

If you are family or close friends, I am sure you know the trials we have gone through.  The doctors told us nothing was wrong at first, then gave us an incorrect diagnosis, then didn't give us any diagnosis, and then we were just left with questions, but no answers.




What we do know is this, Lucy was born with an underdeveloped optic nerve in her right eye.  The cause is unknown.  The optic nerve in her left eye is also not completely developed, but it is minor compared to her right.  Her doctors told us that she wouldn't be able to see at all.  Some told us they just simply didn't know anything about what she could or couldn't see.  The roller coaster that we have been on for the past four years has been horrible, stressful, and at times, defeating.  Finally, a year ago, we just decided to wait, wait and see what would happen as she got older, and until she was able to talk to doctors to tell them what she could and couldn't see.


Lucy spent three years in the Nevada Early Interventions program being assessed making sure that she was hitting proper milestones.  At three, she was supposed to graduate from the NEI program and transfer into the Clark County School Districts Early Head Start program which is pretty much a preschool for special needs students.  We were denied services from the public school systems because in 2010, the doctors retracted her previous diagnosis of Optic Nerve Hypoplasia and left us without a diagnosis.  The public schools said that because she didn't have a diagnosis that she would be automatically denied and we would need to start filing appeals.

It was horrible when I got that phone call but instead of dealing with the stress of appeals, we decided to keep her at home instead of putting her in preschool.  Shortly after that decision, I got pregnant and we decided I would stay at home and then it was a non issue.


Skipping over a lot of the emotional aspects of our journey, since I could go on for days, we found a doctor here in Washington that is amazing.  He confirmed a lot for us, he gave us some new information that we didn't know.  For instance, he did an ultrasound on her eye and found that her retina had detached from her right eye and he confirmed that she would, in fact, have to have surgery before she started Kindergarden.

Well the time has come, she starts Kindergarden this fall.  her surgery is Monday.  Monday.

This surgery is going to help correct the nystagmus she has and help tighten up her muscles in her right eye so it looks less cross.  Because she has no vision in that eye, it won't ever fully be straight, and periodically throughout her life, she will need this surgery again.

Part of me doesn't want her to have the surgery, because I love her just the way she is.  But I know it needs to be done.  It needs to be done because it should help her see out of her left eye better which will help with safety.  It needs to be done because kids are cruel and although I know that Lucy will be able to overcome 90% of what the world will throw at her, I will do whatever I can to give her the best fighting chance.  If this surgery makes her eyes look more "normal" and stops the nystagmus, then that is what I am going to do for her because I know that down the road, she might struggle less with self confidence, bullies and peers.


And in the mean time, I just try to figure out how to tell my daughter that she will need surgery.  We are sitting her down tomorrow to explain to her what is going to happen.  We decided to wait to tell her until just a day or two before the surgery because I didn't want it to be on her mind for weeks.  I have been struggling with how to tell her.  How to explain it to her in a way that she will understand yet not be scared.

She already knows she has a "broken" eye, and she knows that she needs surgery, although she doesn't know what that means.  But she asks me if the doctor will fix her broken eye, make it so she can use it.  She asks me why her eye is broken.  She makes comments like "I really wish my eye wasn't broken."

How do you answer those questions?  Because I sure as hell know that when she asks me those questions my heart sinks into my toes and I choke up trying to find the right answer.

The date for the surgery has come up so much faster than I expected.  I find myself struggling to keep myself composed when I think about it.  I have also made plans to make this a "special" thing for her.  I bought her some new activities, her nana sent her some books, tomorrow I am taking her shopping for new pjs and some indoor craft projects.  And sunglasses.  I don't know how she will look after this surgery, so I am buying her sunglasses to cover her potential bruising or swelling so we can avoid any questions.  


I have been criticized by other adults that I am "making a big deal out of nothing" by preparing like I have for this surgery.  But the fact is, when you are a parent, even when your kids are sick, you feel awful and will do anything to help them feel better.  When your kid needs to have SURGERY, it's ten times worse.  The mom guilt sets in.  I would do anything, anything in the whole world, to take her place.  But I can't, so instead, I am doing what I can to make this into a positive experience for her.  If it means she gets a little extra spoiling, then so be it.  

As you can see and read, she is a spirited little girl with energy to rival any hurricane.  We are very lucky to have her.  And honestly, who can worry when you look at this face all day...


So I ask you to please just keep her in your thoughts on Monday.  She'll be happy to know she's got the whole internet behind her.

15 comments:

  1. Hugs, Randi! Thank you for sharing. I know Nora's situation isn't as complicated as Lucy's but I understand how scary it is when your child needs surgery. I'm here if you need to talk!

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  2. My son was born with an incredibly rare genetic disorder. No one at the hospital where he was born noticed. We were sent home after 3 days like nothing was out of the ordinary. Once home we noticed some small stuff and some bigger stuff too. His index fingers on both hands were curled up and turned so they looked like a second thumb. He was physically unable to straighten them. He also lost a pound off his birth weight. Despite constant feeding it took him 6 weeks to gain that 1 pound back. It took one year and about 500 doctor and specialist visits along with multiple er visits before we had a diagnosis. 7 years later and we are still finding pieces of the disorder that we didn't know about. My son is the size of a 5 year old and will never get above 5'4" (at best). He has had 4 surgeries (eye, ear and hand) and his fingers still don't extend or straighten. He gets asked about these things everyday, but we work on teaching him about every child's uniqueness and normalize as much as possible. We found an amazing pediatrician and specialist who aren't bent on amputating his fingers (one dr recommended this when he was only 6 months old) and the Dr visits have become fewer and father between. I know what you are going through and I wish you the best of luck on your upcoming surgery.

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  3. Lucy will certainly be in my thoughts and prayers....as will the rest of her loved ones. I would do the same things you are doing....and I don't believe a child can be spoiler....they are just given extra love when it's called for.

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  4. she is so beautiful. prayers for the best outcome possible. your cousin, sandy

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  5. Randi,
    Don't listen to anyone telling you you're making too big of a deal out of it. It's our job as parents to worry and want the best for our kids. I can completely understand some of the feelings you're going through. My oldest had surgery last year and my youngest got very sick when he was days old and almost (should have) died. That being said, we pulled through it, and you WILL too! You'll be happy she had the surgery, because just like it's your job to worry, its' also your job to do anything you can to make your children's life better and happier. I think you're brave and should be commended and doing what you think is best for her! I had eye surgery myself when I was six. If it's any comfort to you, I wasn't traumatized at all by it. I mostly just remember the popsicles I got when I woke up and all the gifts that were sent to me during my recovery. That's despite not being able to open my eyes for days! You will be ok, Mama, and so will she! I wish you all the best!
    HUGS
    Brianna

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  6. Thank you so much for sharing this story! I think you are doing what any mother would do and that is try to make it the best situation since you can't change places with her. I hope all goes well on Monday!

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  7. Your daughter is beautiful, and as the photos show, very happy. God bless you and yours. Prayers going up.

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  8. I will definitely keep Lucy in my prayers and I will offer up the Mass I attend on Sunday for the family. Be strong and of good cheer my friend.

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  9. I applaud you for being such caring parents. Lucy is such a cutie and I am hoping for the best outcome for her. Take care...

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  10. Forget those that say negative things! Surgery is a big deal! Breaks my heart she thinks a part of her is 'broken'. Love and light to lil Lucy and your family and will keep her and your family in our thoughts and prayers for a speedy recovery from Monday's surgery.
    btw we live up in Everett :)

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  11. Prayers said and will continue. Do not listen to words of negativity. Listen to your heart (God speaks to you there.) Only you can know how to best handle this situation for your family. Blessings.

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  12. Louie is the best!!!

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  13. my daughter has the same thing...she is only 1 right now

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  14. my daughter was born with the same thing...she is one now

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  15. I dont know what I will do if she is insecure or hurt...i find myself over protective of the ggood eye and fear something willl happen to it

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