It’s Not About You.

Eye-2I am aware of the shock factor of this photo.  This is my daughter, Poppy, when she first came to us from her birth country of China.  She came to us quickly because of her eye.  From start to finish, her adoption took five months.  That is breakneck speed for an adoption.  Poppy was born with a Descemetocele of her left eye.  This is a benign tumor that was present at birth.  It is likely the reason she was abandoned.  In the first days of life, these tumors can sometimes be removed, and the eye saved.  Poppy lived to the age of 22 months with this tumor.  It grew in a cyclic pattern, growing and growing until it would burst, pressure would release, and the cycle would begin again.  At the most painful part of this cycle, the tumor would grow to a few cell layers thick.  Blinking was enough to rupture the tumor.  This happened an untold number of times in Poppy’s 22 months of life before coming to us.  Her eye would become infected, over and over, almost every time it ruptured.

Poppy held on long enough to get to us, where she received a state of the art surgery to remove her eye and replace it with an implant and donor tissue.  Poppy was in so much pain at the time of the surgery, that the actual process of removing her eye was a relief to her.  24 hours after the surgery, she was up, running around in her usual Poppy way.

Eye

Over the donor tissue that was inserted into her eye socket, Poppy wears a “shield” that looks like a thick contact lens in shape, but the coloring is that of an eye.  It has a pupil and iris painted onto a sclera.  It is made to match her other eye. The process of creating this shield has been 9 months in the making.  Her tumor, which should have been dealt with at days old, stretched her eye socket in ways the Ocularist (eye prosthesis expert) has never had to deal with.  Creating the perfect shield for Poppy has been a challenge.  We’ve had 12 different shields so far.  The latest one isn’t a good fit.  She hates it.  She often takes it out and prefers to wear nothing.

Eye-1Poppy isn’t old enough to understand how others view an empty eye socket, but I am keenly aware.  So are her siblings.  People stare.  All the time.  We often laugh at the inopportune moments that Poppy chooses to remove her eye shield.  She is two-years-old, and she is ALL TWO.  She is rough, loud, dirty and raucous, just the way two-year-olds should be.  She couldn’t care less what people think.  I kind of adore that about her.  She lives large and loves fiercely.

She is our girl, whether she has her “eye in” or her “eye out.”

But, because of the stares, I usually make sure she is “eye in” when we are out.  Yesterday, we went to watch her brothers play soccer.  She had her shield out when I put her into the car asleep.  I transferred her to a stroller figuring that when she woke, I could slip the shield in quickly and no one would notice.

Someone noticed.  As I slipped her shield in, the lady behind us turned to look and let out a loud, “OH MY GOD!” and then, because she had been so loud, many others turned.  Instead of apologizing for her outburst, she decided to defend it by saying “Good lord, that caught me off guard.  I wasn’t ready for that. Phew. Well, look at that! Now that it’s in, you can’t even tell she doesn’t have an eye!  Thank goodness.  That was so awkward.”

I’m so sorry I caught you off guard.  I’m so glad you won’t have to be faced with my daughter’s difference again.  I live to make sure that you don’t have to feel awkward.  Sigh.

Poppy didn’t understand any of what was said.  She was more interested in getting down and playing in the grass.  My older kids, who would have noticed, were already on the field, engrossed in the soccer game, and for my littlest kids, they could care less.  They adore our Poppy and are never shocked by her appearance, even when she had her eye tumor.

We head back to the Ocularist on Friday to work on a better fitting shield to cover Poppy’s prosthesis, but today, she went without a shield at all, because, I don’t care how awkward people feel.  I care about her, and her comfort.  This shield is uncomfortable.  I won’t inflict it upon her anymore just for soccer moms who are caught off guard.

–FullPlateMom, who knows it isn’t about anyone else.  It’s about my sweet, brave girl.

16 Comments Add yours

  1. W HEyboer says:

    I grew up with a guy who was born with no eyeballs. He wore two prosthetic eyes. Once when we were at the lake he proceeded to remove them and placed them in his shoes before water skiing. I still laugh at how people gawked at that!

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  2. Kristine Barr says:

    I don’t know what to say but what you said. Some people have no couth. Even if she reads your blog, I doubt she would get it. It is something you will have to take up with Dolly as she gets older though.

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  3. Kristine Barr says:

    oops Poppy

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  4. Alicia says:

    Good job, brave momma! Keep loving those kids and teaching them to be themselves!

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  5. Christina says:

    I saw this on the mighty, the first picture I saw was an beautiful 2 year old girl. I don’t get why people say things or act in ways they do. No person is born the same, this was how I viewed life since I was a child long before special needs parenting became my normal. You are doing an awesome job.

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  6. callylynn says:

    My nephew is 2yrs old born with Bilateral Anopthalmia or absence of the eyes, he has been going through a socket stretching process since 6months old, he is amazing and inspiring! Wouldn’t change him for the world he is a blessing.

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  7. Catrina Frost says:

    I am crying my eyes out for so many reasons. because of your love and your heart for your daughter and her bravery! For your fight as well as hers. For the cruelty we as parents of visually impaired children have to face and try our best to protect our children from while teaching them to love and embrace others. I am crying because my daughter is like yours totally oblivious to the looks and the comments for now. I wish I could wrap my arms around you! Your daughter is perfect in every way and absolutely beautiful! Vision impairment awareness is needed more and more to educate the public. Thank you for sharing your daughter and your journey!!
    ~Catrina xoxo
    Cailee’s Corner (on Facebook)

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  8. Melony says:

    Thank you for sharing your daughter’s story ❤ We have a Poppy too 🙂

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  9. Chris says:

    I hope things are going well for your family. My husband went through similar things after he lost an eye when he was 2. He always had difficulty with people knowing about his eye until he was an adult and I know the support of his family got him through. With his prosthetic very few are ever able to tell that he doesn’t have two functioning eyes. His doctors in Indianapolis are some of the best in their field and he is so lucky to have them.

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  10. APS221 says:

    I’m happy to read that Poppy is doing well, and isn’t letting her eye, or lack thereof, get in the way of having fun. I was surprised when I learned the great Peter Falk had one eye. I hadn’t noticed when watching “Columbo” or any of his movies.

    However, I think the expression “could care less” is incorrect. The expression is “couldn’t care less.” If you could care less, the you would actually care about something. If you don’t care about something, then you could not care any less about it.

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  11. victor says:

    My adopted daughter from Korea was born with microphthalmia (small eye). Had she had surgery right at birth she may have had sight in the eye, but unfortunately that did not happen. We adopted her at 6 months. She went regularly to an occularist to make sure her facial bone structure was not affected. She too has a prosthesis. It is not actually an eye ball but as you described a shell placed over her small eye that has a very natural looking image of an eye. It is virtually undetectable. To be honest, we had a good experiences and seldom had people comment, even during the phase when only a clear shell was in place.

    My daughter is 20 now. She drives, is active in sports and looks beautiful. The key was regular visits to keep her prosthesis current and effective. She often hated it, but as she got older she thought nothing of it.

    Good luck – I’m sure your daughter will be equally successful.

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  12. Miranda says:

    I believe you meant Poppy “couldn’t care less.” That was just bugging me…

    How absolutely rude of woman. We expect that sort of behavior from children but not fully formed adults. Besides, she had no business speaking to you. She could have just been caught off guard and kept her mouth shut like a normal person. I once went to a Halloween party and a girl was dressed as a pinata. I thought she was pulling something out of her costume and up into the air but it turned out to just be her nub hand. And I was caught off guard and I know I must have made a face and I felt extremely rude and horrible about it. Sometimes these things happen because we are human but you don’t go blabbing about it!! OH GOD WHERE IS YOUR HAND! WHY DIDN’T YOU WARN ME YOU DIDN’T HAVE A HAND! I mean, come on.

    Poppy will grow up with confidence because of her supportive family and that is wonderful.

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  13. Jess says:

    Your daughter is absolutely gorgeous! I’m a mom to three adopted kiddos, and we get stares because our children are Black and my husband and I are White. I’m praying for your sweet baby.

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  14. Ira says:

    I think that made you stronger. I also have daughter 15 months with 1 eye. Sometimes i see embarassement on the faces, but i learned not to be affected by them, i continue with head up. I love her, i accept her, she made me to see clearer that is realy important. i am her mother and my job is to care her psycological comfort.
    thank you for your story, you are good brave mother

    Like

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