And Then A Whole Year Passed

Last year, I was a little emotional around this time of the year. The one year mark of Amelia's diagnosis was looming over me and I realized I hadn't allowed myself to fully grieve and process what that meant. Some of that was because I simply didn't want to, but, in retrospect, it was largely because I didn't feel entitled to.

I knew of so many others who were dealing with very traumatic losses and life-threatening illnesses that I felt it wasn't OK for me to grieve. I mean, Amelia has ONE good eye, right? You can certainly live life with one eye. What's the big deal?

I see now that this logic is flawed. There is no litmus test for pain. If your child is hurting, you are allowed to hurt along with them. If your child has been given a challenge, it's OK to grieve for that. It's OK to feel like they got ripped off. It's OK to wonder why it happened to them.

It's OK to be sad.

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When Amelia was two months old, Jason and I noticed that she didn't seem to focus on anything. I noted that she always looked to the left when she was laying on her changing table or on the floor. Her eyes seemed to cross a lot. We were midly concerned.

I mentioned our concerns at Amelia's two month check up and was told by the doctor (NOT my beloved Dr. J or Dr. P)that she was fine and it was normal and I was over-analyzing things. I left her office feeling uneasy.

They don't call it mother's intuition for nothing.

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A week later, I made an appointment with Dr. P. Normally, Dr. P is a boisterous, funny guy but that day he was very serious. He laid Amelia on the exam table, took one look at her eyes and said, "I'm very concerned. I'm going to make a phone call."

Less than ten minutes later, we were sitting in Dr. H's office hearing him diagnose Amelia with a rare eye condition practically NO ONE has ever heard of.

Less than ten minutes after that, we were in a retina specialist's office, listening to him confirm the diagnosis and trying to get our brains around the idea that our infant was blind in one eye.


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Easily the worst day of my life. But two years later, I can honestly say that the fear of not knowing what to expect was much worse than actually experiencing it.

Not that it's been a picnic. Did you know my toddler wears a contact? I probably don't need to spell out what a nightmare that is. But we manage. Sometimes I have to take her to the doctor just to get her contact back in. This doesn't seem strange to me anymore.

It's just what we do.

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Some days, I still feel sad. I feel sad that my baby has to wear a contact in an eye that can't see. I feel sad that she wears glasses as protection for her good eye rather than for vision correction. I feel sad that her eye isn't growing normally and that she's at a high risk for complications like glaucoma. I feel sad that other kids notice her difference. But mostly? Mostly, I feel just like I did when the other girls were toddlers.

Tired. And so in love.

And compared to a year ago, that's major progress.

Touched By An Angel

When you have a baby who wears glasses, you get a lot of attention from strangers. Most people comment on how cute Amelia is in her pink plastic glasses (can't argue with that one) and sometimes they ask how we knew she needed them. A lot of times they'll want to know how we keep them on her or how the doctor knows what her prescription should be. Occasionally, a person will tell me about their nephew/neighbor/grand-daughter/brother's best friend's cousin's baby, etc... who has a lazy eye and wears glasses. One time a waiter at TGI Friday's told me about the time he took a firework to the eye during a bottle rocket war and had to wear a patch for three months. He said he knew EXACTLY how Amelia feels. Because, clearly, a grown man getting injured during a fight with pyrotechnics is very similar to a baby being born blind in one eye.

Anyway. The point is, we get a lot of attention.

So today, when we were leaving a restaurant after lunch, I didn't think it was strange when a man got up from his table and stopped my mom, who was carrying Amelia. I paused, expecting him to ask one of the typical questions we get. But he didn't ask any questions. Instead, he laid his hands on Amelia's head and prayed for her vision to be restored in the name of Jesus.

So. Yeah. Did not see that one coming.

At first I was completely weirded out by the whole thing. A stranger touching my baby? And praying over her as if he knew her? It was just too much. But at the same time I was also deeply touched. Moved to tears, even.

You see, it was a Friday morning, exactly a year ago that we sat in Dr. H's office and heard the term "PHPV" for the first time. It was exactly a year ago that our fears that something was wrong with Amelia's vision were confirmed. And today, a year later, I found myself driving to Dr. H's office for yet another appointment for a contact that doesn't fit right. It was the last place I wanted to go today.

I mentioned previously that I had been growing anxious as this day approached. Anxious because it brings back to the surface all those feelings and emotions that we experienced that day and in the weeks that followed--shock, sadness, anger, confusion, disappointment, worry, grief. And lately, we've been coming to terms with the fact that Amelia's vision is just not improving. And, according to her doctor, most likely won't.

But today, a stranger reminded me that in spite of medical evidence that says otherwise, I can still hope for something better for Amelia. I can still pray for something better. I'm ashamed to say I had forgotten that.

So to the man who prayed over my baby in a crowded Mexican restaurant today: Thank you. But dude, seriously, next time give a little heads up before you touch a stranger's baby.

Hello...Hello...Hello... Is There Anybody Out There?

Sooooo....It's been a while. I'd love to offer up all the usual reasons for a blogging lapse--busy, busy, oh so busy!, sick kids, school demands, Spring Break, marathon training, preschool teaching, soccer, tennis, gymnastics, teething baby, the final season of Lost, etc...--but the real reason is actually harder to pinpoint. It's just that...I haven't really wanted to write much lately. And it's not because of a lack of material (anyone interested in hearing about our two trips to the ER in two days? What about our family vacay at Disney World? Anyone? Anyone? Bueller? Bueller?). I think I've just been processing a lot of things lately.

Not to be dramatic (oh, who am I kidding, of course I'm being dramatic), but as the one year mark of Amelia's PHPV journey approaches, I find myself increasingly anxious and prone to the teary-eye. Just thinking about that day causes my heart to race. I can remember every detail, from what I was wearing to what the weather was like to what I said when I called Jason at work and told him to meet me at the eye doctor. I recall all the minute details of that day, yet I kept the hard stuff--the emotions--locked away.

In the last year, I don't think I have fully let myself grieve over the enormity of what Amelia is facing. I think I have denied myself that because, as so many well-meaning people have pointed out, at least it's not cancer! She still has one good eye! What's the big deal?? To some extent (maybe a great extent), they're right. But the fact of the matter is, pain is pain. And if "is it cancer?" is the litmus test by which we allow ourselves to feel pain, most of us would fall short. Thankfully. But that doesn't mean it doesn't hurt.

Trust me when I tell you that nothing will shake you to the core like hearing your child has been given a "challenge". Your mind will go places you don't want it to go. You will google the same thing over and over looking for more, better, different, information. You will constantly question whether you are doing enough, whether you have the right doctors, the right treatment, the right plan, and, if you are a mother, if you somehow caused it. You will ask hard questions. You will look for answers that don't exist. You will worry. You will wonder...

But then you will look at your child, and you will forget. You will see only her joyful spirit and not her "challenge". You will see the way she adapts to her surroundings. You will note that she doesn't consider herself "challenged". You will be thankful.

And you will finally decide it's no longer time to grieve.

There Are No Stupid Questions

Top Ten Things Strangers Have Asked or Said About Amelia's Glasses(and the responses I would like to give)

10. Are those real glasses?
No--I just like putting Mr. Potato Head glasses on my baby.

9. Is she wearing glasses?
No. You must be seeing things.

8. How did you know she needed them?
This is actually a legitimate question, and one that I totally don't mind answering. So no sarcastic response is necessary.

7. Does she wear those to help her see?
No....I just think they make her look smarter.

6. Does she keep them on?
Again. Completely legitimate question, thus no internal eye-rolling on this one.

5. Marge! Get over here! You gotta check out this baby with glasses.
Yeah.... This is for real. I wish I were making this up, but we were approached by an older gentleman in Branson who got such a kick out of Amelia's glasses that he called over his wife to share in the fun.

4. Those are REAL glasses? SER-iously? They're REAL? How can they even TELL how strong the glasses need to be on a BABY?
I sense your skepticism, teenage girl, but I'm guessing you're not an EYE DOCTOR. My daughter's EYE DOCTOR is pretty adept at this sort of thing, what with all his MEDICAL TRAINING and EXPERIENCE.

3. Where did you get those precious glasses??
Are you familiar with Forever 21?

2. DUDE! Nice Shades!
Um...technically they aren't shades, pizza guy. But I like your enthusiasm.


And the number one question I get asked about Amelia's glasses...

1. Are those REAL glasses????
They're real. And they're SPECTACULAR.

The Patch

We started patching Amelia's good eye last week. I have been dreading this particular part of her treatment since the day she got diagnosed. I know it's for the best. I know it's her only shot to gain some vision in that eye. I know she'll be fine. I know that, eventually, this will be just a small blip on the radar for her. I know.

But for now, it's agonizing. When she wakes up all smiley and bright-eyed, it feels wrong to patch her one good eye, knowing that I'm essentially making her blind by doing it. It's frustrating for her, not being able to see. She lasts about an hour with the patch on, then goes to sleep. I understand this fight or flight response. Sometimes I wish I could just go to sleep too.

There have been some glimmers of hope though. When her good eye is patched, she reaches for toys held up in front of her. She smiles at me and laughs at her sisters. She seems to see something, although her doctor doesn't seem quite as impressed by this as Jason and I are.

Claire and Arden don't like it when Amelia's eye is patched. They want to be able to see all of her sweet face, as do I. I think it bothers them to see her having to do something that is difficult for her. Claire told me not to take Amelia's picture when she's wearing the patch. She said people would laugh at her. I told her they wouldn't. She asked what if they did. I said I would punch them in the face.

And I wonder where Arden gets her aggressive streak from.

I've had several kids ask about the patch. The first, a precious preschooler with pigtails that looked like pom poms, was fascinated with Amelia's pink and green camo patch. She wanted to know what was wrong with Amelia's ear. Claire, with the authority that only comes with being five years old, rolled her eyes and said, "it's not her EAR. It's her EYE. And there's nothing WRONG with it. It's learning how to SEE."

Not quite right, but I appreciated her enthusiasm. At least I won't have to worry about Amelia's sisters taking up for her.

Where We're At

*****UPDATE*****
Yesterday, we took Amelia to Little Rock for a follow-up appointment. The news was good! Amelia's retina has improved beyond what her surgeon had expected could be possible based on what he saw during her surgery. Don't misunderstand--her condition is still far from good, but this small victory feels huge to us. Dr. B was hesitant to tell us what this means in terms of her prognosis, but said "Let's just see what the Good Lord does with her."

Sounds like a good plan to us.


Over the last several weeks, I've started at least five posts on Amelia's eye condition. They all remain unfinished, and all signs point to them staying that way. For some reason, I've found it much harder to write about this experience than to actually live it.

The short story is that, while Amelia handled the surgery very well (probably better than her parents), her eye was in much worse shape than her doctors had originally thought. Some day, I'll recount the horror I felt when her surgeon emerged from the OR not 15 minutes after taking her back and asked me where Jason was (um.... Starbucks?) because he needed to talk to us. I think I'm still suffering from post traumatic stress disorder from that one, so I'll save it for another post.

For now, Amelia's prognosis remains uncertain. Her lens had to be removed and her retina was partially detached. These two unexpected events open up a new set of possible complications for her and make it difficult to know what her long term vision will be. We will hopefully find out more when we go back to Little Rock later this week.

The good news is that our sweet girl is as sweet as ever. And, other than a red, irritated eye, she's pretty much back to normal. Now we wait, which is proving to be the hardest part of all.

Surgery.

Amelia's surgery is tomorrow morning. Please pray for our sweet girl. We'll keep you posted.

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Time stood still on Friday.

That was the day that we were told Amelia has PHPV, a congenital eye disease that has left her with little, if any, vision in her right eye.

Time stood still.

Surgery will be performed in the few next weeks. Surgery on the beautiful brown eye of my precious baby. Surgery that may or may not improve her chances of ever having useful vision in that eye. Yet, surgery that we have to try because if we don't, we'll never know.

Time stood still.

After surgery, Amelia will begin an aggressive regimen of eye patching and glasses. She will most likely have to wear a patch on her "good" eye for 6-8 hours each day in the hopes that her "bad" eye will regain some vision. She will also wear glasses from now on. This therapy may or may not improve her chances of ever having useful vision in her right eye.

Time stood still.

Children with PHPV are predisposed to glaucoma and cataracts, things we will have to watch for over the years. She will also be at risk for retina detachment.

Time stood still.

We don't know what to expect. We don't know whether Amelia will ever see more than light and shadows in her right eye. We don't know if she'll have glaucoma, develop a cataract, or experience any other complication. We don't know so many things.

But we do know this: we will do whatever it takes to ensure that Amelia has the best treatment and the best chance for usable vision. We know that Amelia is loved by and being prayed for by so many people. We know that she is exactly the way God intended her to be, that she is fearfully and wonderfully made, and that God has a plan for her that is much bigger than this eye disease.

As we await our consult at Arkansas Children's Hospital, please pray for the following specific things:
--That her lens will not have to removed during surgery
--That we will make the best choices for her treatment
--That we will have peace through this process


I praise you because I am fearfully and wonderfully made; your works are wonderful. I know that full well.
Psalm 130:14