Two years

Dec. 15th.  For most people, this date simply means they have 10 more days to shop.  For me, it is a day I will never forget.  Two years ago, on December 15th, I spent 4 hours at Children's Hospital with Julia (and my Dad - Thank you Dad!) and found out that my perfect 8 week old little girl was blind due to a cataract, needed surgery and would wear a contact and patch.  In some ways, it was a glorious day.  I had spent the night worrying that she had cancer or something equally as terrible, so to hear that it was "just" a cataract was a relief.  But it was emotional, and scary, and I will always remember.

This is the day of the appointment.

 

Now that two years have passed and we have adjusted to this EYE world, I can realize that I have so much to be thankful for.  I know that I probably should have done a Thanksgiving post, but I never got around to it.  This two year journey has been wonderful and horrible at the same time.  But I couldn't have done it with the support of so many different people.  So in honor of the two year anniversary of her diagnosis, I wanted to express my thanks.

 

 

My family - Thank you for all your support and prayers.  For keeping Jed overnight so that we could get to early morning surgeries.  I can't count how many times my mom has driven me to appointments with Julia and been my rock when I got bad news.  Thank you for loving Julia so well.  I know I can always count on my family, and for that, I am extremely grateful.

 

 

 

Imoms - I couldn't have done this without you.  That night, I got on the internet, and the reality of what we were facing became real.  I read about patching and contacts and knew that this wasn't going to be easy.  But I connected with you all, and saw my story in your blogs.  Then it was emails and instagram and knowing that I was never alone in this crazy EYE world.  From the depths of my soul, thank you.  I love knowing that out there, somewhere, is another mom that has experienced these emotions.  I remember that and don't feel so alone.

 

 

 

Technology - yes, this is a weird thank you, but I am so grateful for technology.  For the tiny instruments that allowed a surgeon to remove a cataract from an infant.  For the contacts and research that helps the doctors know what to do.  I know that even 25 years ago, her outcome could have been much different.

 

 

 

First Steps - I am so thankful for the OT, speech and vision specialist that have helped Julia meet her milestones.  And for the glasses!  First Steps has provided Julia with glasses that would have been very expensive for us to pay for.

 

 



Prayers - I am so thankful for the prayers from my friends, family and church.  My church family has been so accepting of Julia and her patch.  They pray for her and love her and accept her.

 



I know this is a cheesy blog post, but my heart really does swell when I think of how much we have been through in the last two years.

- 4 surgeries (with one more scheduled)
- 4 pairs of glasses (with more than 8 prescription changes)
- countless boxes of patches
- 20+ appointments with the Eye Clinic
- Thousands of tears
- Millions of smiles, laughs and hugs



Obviously, Julia is no worse for the wear.  She has come through everything like a champ, and I am sure she will continue to tackle any obstacle that comes her way. 

Birthday!

Can you believe my little girl is 2 years old?  Seriously, I am wiping away the tears as I think about how quickly time passes and how much my baby has accomplished in two short years.

From this:

 

To this:

 

To this:

 

I seriously love this picture of her.  It is refreshing to see her without her glasses.  And even though her eyes look different and you can see the "problems" with them, all I see is a lovable, sweet, happy little girl playing with a naked baby.  Because what little girl doesn't like to play with a naked baby doll?

 

Julia's birthday was a smashing success.  My husband and I have decided that the cost of paying for a party is a worthwhile trade off for the craziness of cleaning, cooking, and prepping for a party.  So we had her bash at Pump it up.

 

Julia loved the slides and the bouncy houses.

 

Seriously, we all had a blast.

 

Even the grownups!

 

 

I had an epic mom fail moment when I realized (the morning of the party) that the store I ordered her cake from didn't open until 9:30 and the party started at 10:00.  So we grabbed a cake from the grocery store and called it done.  And really, it must have been meant to be, because there was a pink camo cake in the cake section!

 

Turning two also means starting preschool!  Julia will be attending United Services two days a week.  She spends the morning in a special education room that is provided by First Steps.  They have speech activities, PT, OT, all kinds of things to help her continue to develop.  The amazing thing is that she does not touch her patch AT.ALL. when she is there!  She fights me tooth and nail, but will leave it on at school!

 

 

Notice her holding the patch in her hand?  That is where the patch spends most of its time nowadays...except at school, like mentioned above.  She really does like school.  The only hard part is drop off.  She didn't cry the first day, but now she realizes I am leaving and cries when I try to sneak out.  It is heart breaking.  But just one of those things that you file under the "times it is hard to be a mom."  Of course, that file is SUPER big and I am realizing there are lots and lots of those moments on a daily basis.  When Julia says, "No patchy!" and buries her head in my lap to avoid getting stuck with an eye sticker - that is definitely one of those moments.   When you see your daughter struggle to navigate a trunk or treat event because she is patched - another moment.  When she takes off her diaper and poops on the floor - another moment (and yes, that really happened - you can stop laughing at the mental image now.)

 

But even with that super big "hard to be a mom" file, there is an even bigger "being a mom is fabulous" file.  With moments like these:  watching your daughter jump in a bouncy house and grin from ear to ear, hearing your son ask your daughter if she is his "best friend" and then hearing her say yes, and watching your daughter pick up a small toy off the floor (and you almost cry because you realize she can see the toy).  Those are the moments.  Happy Birthday Julia.  It has been a roller coaster couple of years, but I have loved every moment. 



 

 



 

 









 

 

 

Random

So, I woke up at 3:30 am because I am sooooo excited about leaving for vacation today!  My kids get to ride in an airplane (and I get to try to keep them from irritating the whole plane)!  Jed is thrilled and can't wait to ride in the airplane and get on the boat (we are going on a cruise).  I really don't think he understands what "vacation" is, but he has asked multiple times a day for the last week, "are we going on vacation now?"  And then threw a tantrum when I said no.  So today is finally the day!  We are packed and ready to head out - which resulted in me being awake at 3:30 in anticipation. 

So I figured I would post some random pics from the last month to catch everyone up on our summer adventures.  Just to let you know, if you are the praying type, please pray for us.  Julia is MAJORLY fighting patching.  We have gone through 80 patches in 2 1/2 weeks.  It is so hard.  Thankfully the glasses aren't a struggle - she wears those willingly, and even uses the bifocal.  But patching, phew...this has to be one of the hardest (if not THE hardest thing I have done).

Fourth of July

They really enjoyed the parade.  Jed will still "play" parade and wave his little flag and tell me to throw candy at him.

Watching daddy shoot off fireworks in our driveway.

My beautiful girl without her glasses.  I love her little specs, I really do.  But sometimes I like to look at her face without any accessories.

We spend lots of mornings at the park (that is his favorite Duck Dynasty t-shirt).

Waiting for eyes to dilate at the eye doc.

Julia had "school" four times this summer through early intervention.  She loved it!

 

 

Fishing trip

This is what Julia did while Daddy and Jed fished.

I caught one!

More snacks.

Sigh...my boys.

Fun on the 4-wheeler.

A big shout out to "Uncle Matt" for letting us visit for the day and fish in his lake.  The kids had a blast and Jed still talks about the 4 fish he caught (and how he threw them back). 

We made cloud dough.  Messy but fun.

Cloud dough before it got crazy.

 

Zoo

Jellyfish.  So pretty.

Digging in the children's zoo.

Brushing the goats.

Feeding a stingray.

Harassing a chimp.

Riding a train.

Another shout out to my mom who went to the zoo with us.  She was a huge help!  I couldn't have managed both kids without her.

 

Just hanging inside.  This is a lot of our summer too.  Just trying to beat the heat and have fun indoors.

 

So there you have it.  The highlights of the last few weeks all jammed into one post.  It is hard to believe that when we return from vacation, I have one day off and then I go back to work.  Jed is starting two day a week preschool (big tears from mom) and Julia will start two days a week in her "school" when she turns two.  Summer always goes too fast.  I am thankful for my job that allows me to spend two months of the year with my kids, but also grateful to go back and be with my students.  Win-win situation for everyone.





 

Picking, Pool and Popsicles...with a Patch!

We've been enjoying our summer immensely.  I've been trying to find things to keep my munchkins busy.  It hasn't been easy.  Monday, we went strawberry picking.  It was a lot of fun and the kids enjoyed it.

 

Jed seemed to enjoy picking them.  Julia spent most of the time eating them!

 

 

 

Here are some more pics.  Julia actually left her patch on while picking.  Patching has become quite a struggle again so finding anything to keep her occupied and keep her hands off her face is a bonus.

 

 

 

 

Jed finally ate one!

 

 

After putting the strawberries safely in our fridge, we headed to the pool.  The water was still chilly, so we didn't stay too long.  But the kids had fun (although Julia is not a fan of the water).  Jed found several frogs and splashed around while Julia ate snacks and sat with Mom.

 

A new patch, but keeping it on!

After coming home from the pool (and taking a nap), we went onto the deck for popsicles.  This is a messy affair, so we had baths right after (with glow sticks) but I didn't take pics of the bath.

This is one of my favorite pics of Jed.

So that was our Monday!  We've been to the playground, painting, gone to Chick-Fil-A and a million other things.  I literally try to plan 10 things for the day to keep them occupied and try (quite desperately) to get Julia to keep her patch on.  She has become such a stinker and will simply rip it off and hand it to me.  Then she runs! 

So if anyone has advice for how to keep her patch on, let me know.  I'm not sure what else to try.  And any ideas for activities, give me those too! 

I'll keep you posted on our summer adventures!