Dear Emma

I wrote this post for my favorite site, Little Four Eyes! You can check it out here, or I've pasted it below!

Dear Emma,
Someday, you might be reading this blog and wondering why I wrote all of this for your brother. Well, now that you’re at the wise old age of 3 months, it’s high time I explain a few things to you. After all, by this age, Jack had already had 2 surgeries and was wearing glasses!

First off, I love you baby girl, but you are a terrible sleeper. It’s enough for me to put on matching shoes every day!

But that’s not the only reason. You see, your brother was born with cataracts. They’re kind of like special beauty marks on your eyes, except that he couldn’t see past them! He had to have two surgeries to remove them and now he wears his glasses, or the special contacts that go on his eyes.

You were born into the world of eye doctor appointments, glasses and contact lenses. You were 10 days old when your eyes were dilated for the first time. The doctor and your mommy and daddy wanted to make sure that if you had cataracts too, we caught them right away. So far, so good – you’ve already had 2 eye doctor appointments and several trips to the pediatrician!

You’ve never known your brother without glasses. Now that you’re grabbing things, they’re one of your favorite things to grab when he comes in for one of his many kisses a day. You’re very lucky for many reasons. One is that you don’t have cataracts, but I think you are the luckiest because you have a brother that did. Your brother is the strongest, bravest, neatest kid I’ve ever met. He is such a good big brother and loves you so much.

You may be wondering why you have to keep going to the eye doctor, or why you keep getting those special dilating drops once a year. Well, it’s because we know. We are now highly educated in the field of eyes…baptism by fire, some may call it. We know what to look for in pictures if your eyes cross, we rejoice when your pictures come out with red eye in them. We feel guilty for staring at your face, relieved there aren’t a pair of glasses on them. (Don’t get me wrong, Jack pulls off glasses better than anyone I know, but there’s just something about staring at his glasses-free face sometimes.) We constantly panic when we think we see a white fleck in your eye, only to be a reflection.

There was a time when we were scared we couldn’t have you, for fear that what Jack was going through was so bad, we couldn’t possibly do it again. At the end of the day, our family has so much love to give, and the good news is, not only could we do it again, I have pure faith that you would be a fighter, just like him.

So if you ever wonder why Jack has a blog and you don’t, please know that you a big part of his story, and “eye” love you, too!
Love,
Mommy and Daddy

An update

I'm three!

This is a couple of weeks late because I was trying to forget about the 2 and a half hour trip to the ophthalmologist. They always warn you the appointment could be up to 2 hours because of dilation, but when our appointment is at 10 and Jack wasn't dilated until 11:15....on top of the 2 month old and 3 year old....ok, clearly not over it yet!

Anyways, this was a 2-for-1 visit. The doctor would like to check Baby E during Jack's 6 month check ups just to keep an eye (pun totally intended) on things. So far, so good! Baby E is exactly the age now that Jack was when we discovered his cataracts, so we were holding our breath a little. We've also noticed that she is sooooooo much more social than he ever was at this age. Hindsight is always 20/20 (again, with the eye references!) but he couldn't see us at this point and therefore, couldn't really interact.

So, here's where we stand with Jack. Because he is now 3 and starting preschool soon, he will be going to bifocals. Up until this point, his vision was a corrected compromise. Far away wasn't perfect and up close wasn't perfect, but for his age, that was about right. Now that he will be reading, writing, etc., the doctor wants to be sure that his vision is clear for both.

My loves!

Now to the glasses...we don't have them yet, but the optometrist has warned us that doing bifocals at this strength of prescription is not a cosmetically easy thing to do. It requires something called a lenticular lens, where they won't be able to grind down the lenses, leaving part of the bifocal rather thick. (Thicker than they are now, if you've seen Jack's glasses up close.) Because of this, plus the fact that Jack is much more active (swimming, soccer, etc.) and starting preschool, we are going to give contacts another shot. It's been 18 months since we did it last. The hope is that being 3 brings a bit more understanding, less physical restraining, and the ability to accept bribes. So far, we've had him watching daddy put his contacts in, saving an old pair to play with, and watching other young children have theirs put in and taken out. I'm definitely open to suggestions! Hopefully, we have them in the next week or 2. (Edit: Jack just watched Monsters, Inc. for the first time, and we made a huge deal when Mike puts his contact in before work.  He got a kick out of that!)

So, all in all, it was a good visit. A few changes in the pipeline, but no major adjustments. It looks like we can start talking about implants (IOLs) when Jack turns 5, so still a ways to go!!!!

Aaaaaaaaaaand exhale...

Jack is proud to announce the arrival of his new sister, Baby E!  She arrived on April 30, and besides not wanting to sleep longer than 30 minutes at a time at night, we are over the moon with her arrival!  We knew getting into this that there was a chance that she could have cataracts as well, and were prepared to deal with it if we had to.  Key words: if we had to. To be honest, it didn't cross my mind much during the pregnancy.  I'd start to think about it, and immediately push the thoughts away because there wasn't anything I could do about it.  As soon as she was born, though, I found myself peering into her eyes, wondering if there was anything in there. 

 The on-call pediatrician came the night she was born.  She was unfamiliar with our particular case, but we gave her the heads up and she did a fairly thourough exam of her eyes.  D and I held our breaths for what felt like the longest 10 seconds of our life.  Red eye reflex? Check.  Aaaaaaaaaaand exhale.....

The day after we came home was our first official check-up with our pediatrician - the doctor who knows everything about our case and actually initially diagnosed Jack.  She made sure to check and double check Baby E's eyes, and again, saw that red eye reflex.  Aaaaaaaaaaaaand exhale again. 

Then came the day I had been dreading since we found out I was pregnant - Baby E's first trip to the opthamologist.  The doctor had instructed us to come in as soon as possible once the baby was born. I just kept thinking, "Do we have to?" I was so tempted to push the appointment back so I could just enjoy her little face and not be peering into her eyes looking for the white specs, or think about what she would look like with pink glasses.  I just wanted her to be a blank slate and for me to be able to leave it that way.  At the end of the day, I knew it had to be done, so off we went. 

It was a loooooong appointment, but Baby E (and big brother) did great! They even dilated her eyes, which I was shocked at for some reason.  Anyways, D and I held our breath until the doctor said,"No cataracts."  Holy cow, those are the most joyous words I've ever heard.  There were a few other doctors visiting and there seemed to be a discussion (you know, the ones doctors have like you're not still in the room) about whether or not this meant we were off the hook.  Our doctor seems to think that Jack's cataracts were there from birth...just not large enough to be spotted by the pediatrician.  She was confident that since Baby E was clear, that they wouldn't just develop.  The other doctors disagreed somewhat.  We know we're not in the clear, but this was a huge step.  Baby  E will be monitored at all of big brother's appointments, and we know our awesome pediatrician will be keeping an eye on her as well.  Until then, we will appreciate clearing this hurdle and move along!

After the stress of that appointment, a glass of wine at lunch was JUST what the doctor ordered!

They were right! (And not crazy.)

Days before Jack’s first surgery, we were put in contact with a local family who had been through the same process.  They graciously called us and told us about their experiences and answered our many, many questions.  I sat sobbing on the couch while I listened to stories of anesthesia, doctor visits, patching, glasses, and lost contacts.  My heart was broken into a million pieces and the whole conversation was a blur, except for one thing in particular that still stands out to me.  At one point, they shared that even though at the time, things seemed so bad, once they had gotten through it all, it didn’t stop them from having more children, knowing that another child could have cataracts.  Well, that blew me away.  When D hung up the phone, I about laughed.  “Are they CRAZY?  There’s no way I could go through this again!” was all I could think. 

Well, G and J, thank you for your wisdom.  You were right (and not crazy). :)



 

I’m not worried about the numbers.  The chance of Jack having cataracts was one is a kazillion, the chances of his little brother or sister having it is a little smaller, like one in a bazillion.  So even though we are praying hard that we don’t have to do it again, we could if we had to.  And if we do, let’s hope it’s a boy so I can get some more use out of all these blue frames!!!!

Beauty is in the eye of the (2 year old) beholder

This picture was taken just moments after someone (a grandmother, nonetheless!) asked me if Jack would be able to get "more fashionable glasses" when he's older.  Perhaps you felt the world shake as my heart broke into a million tiny pieces.  I fought back the tears as  Jack ran happily around one of our new favorite indoor playgrounds.  It didn't phase him one bit. I felt sorry for him, and let's be honest, myself, until I was able to snap this picture.  I finally realized that when Jack looks in the mirror, this is what he sees.  Pure happiness - enjoying a day out with mom, jungle gyms and more importantly, a room dedicated to train tables. He really does not care that he wears glasses.  It's all he's known since he was 3 months old, so why would he think any differently?



I've carried such a burden on my shoulders since the day we found out he had cataracts. When we are at the grocery store, Jack sits there happily munching his free cookie (thank you, Harris Teeter) while I am constantly looking over my shouder to see if that woman is still staring, or if I can hear the child ask his mom why that baby is wearing glasses. The momma bear instinct just kicks in, and no matter what, it can't be quelled.

Don't get me wrong. I'm not mourning for a child without glasses. In fact, when Jack pulls them off at night, he's just not the same kid. I wonder to myself if, without glasses, he would be as funny, or as loving or as smart. I just think his resilience has made him into this super awesome kid! Now I know there may come a day when he looks in the mirror and sees what everyone has been staring at all these years. Be careful because the earth will shake when my heart breaks again. But, I pray that this smart and funny kid will just have so much to offer the world, that it won't a bit of difference. And let's be honest, there's a lot less to stare at when you see a five year old wearing glasses as opposed to a five month old.

So until then, Jack, keep making us laugh and giving us hugs. You can tell me, "Jack so silly" until the cows come home. We love you so much!

Happiness is...

...having your toddler shush you during "Twinkle Twinkle" because you've taught him all the words and he wants to sing it alone.

A lot of times, my blog is about all the negatives that we face...the lost contacts or the rude comments. That's only because those are the things that move me and compel me to come running to the blog. Truth be told, those days are few and far between. We are LUCKY.

This past weekend, I was able to participate in completing a garden for the angel baby of a friend from college. There's something very humbling about being out in the early morning, surrounded by the strength and love of other people and the wonders of God's earth on a beautiful day when the sun wasn't supposed to shine.

Since the ultimate purpose of this blog is to provide a resource for parents of children born with cataracts, please know that a year and a half later, we are feeling LUCKY. The worst part of our day was that Jack didn't take a very good nap and was a whiny mess by the end of the night. Sure, his glasses were foggy from all of his whining, but on than that, being a child with cataracts did not make his day any different from other typical almost 2 year olds. So yes, visit my early posts for a preview of what's to come. The beginning is scary.

But at the end of the day, we are thankful for this, glasses or not!

They're not goggles!!!!!

    For those of you who follow the blog regularly, you'll remember how excited we were that Jack's prescription had gone down. We don't notice anymore, but every now and then, we still get the comment, "Those make his eyes look huge!!" Well, yes. Yes, they do. His prescription is about 10 times stronger than the average person walking around. Anyways, when we got the new lenses, we noticed a difference right away. They were so much thinner! In our eyes, they almost looked like regular glasses, but I guess we need our eyes checked as well, because the comments keep flowing in!

     The most recent barrage we've gotten refers to them as goggles. We were at the pool, and I overheard a young child say to her mom, "Look, that baby has goggles." She and her mom proceeded to go back and forth a few times debating on whether they were goggles or glasses. We were standing about 2 feet away, so when I say overheard, I really mean we could have been part of the conversation. This happens a lot, but parents typically try to change the subject and get their young child off of the topic all together. In these instances, I wish people would JUST ASK. Don't ask if they're real. If you find someone who puts fake glasses on their toddler, please send them my way because I'd like to find an example. Ask how we knew he needed them. Tell him that you like his glasses. Don't whisper right next to us, because last time I checked, glasses were not for people with hearing issues. I CAN STILL HEAR YOU!!

    Ok, so we were at the pool for that one, so I'll give the benefit of the doubt. But 2 days later, we had the same comment about him wearing his swim goggles, and this time, we were at Church! Ok, we've had our days with Jack where he refuses to wear anything but an Elmo shirt, or his Brobee shoes, but trust me, I would draw the line at letting him wear swim goggles to Church.

    So most of this post is ranting about the bad stuff, but there's so many bright spots as well. Jack made a friend at the park the other day. He came right up to Jack and asked, " What's on his face?" My heart sank for a second as I started to go into the whole, "Those are glasses...they help him see" rant, but then I realized this little guy was looking straight past Jack's glasses, and pointing to the giant cut on his head. (He lost a battle with a patio chair.)

    Moral of the story is that while we are very wrapped up and in tune with what people are saying, Jack is so incredibly normal. He has the same bumps and bruises as any other almost 2 year old, and they haven't slowed him down a bit!! (The bruises OR the glasses!)