Hurray for summer!

I kept telling myself, "I'll blog more when school is out and I have so much free time this summer."  Who was I kidding?  Haven't had a free moment yet.  But what I have had is tons of memories ingrained in my head of my beautiful family.

We spent Saturday of Memorial Day weekend in the country with family.  Jed was so dirty - but had so much fun!  He played with dump trucks, jumped on a trampoline, dug in the dirt and sat on PaPa's 4-wheeler!

Julia just hung out on a blanket - but I'm sure she had fun too.  Especially since she didn't have to wear her patch!

We have been spending a ton of time in the backyard and on the deck.  Jed loves to be outside and I like it too. 

Can't go wrong with a bubble gun and a popsicle!

How do I eat this?

I love bubbles!

Note the construction on the side of our house.  It is actually on both sides so we get to watch bulldozers and tractors on a daily basis.  Endless entertainment.

R.I.P orange popsicle. 

Swimming!

Mommy's popsicle died too.

We've also been to Six Flags (well, Jed and I went) and he loved the water park!  He rode a few rides, but the swimming was more up his alley.  I didn't really get any pics from Six Flags because I kept forgetting to dig the camera out of the diaper bag. 

The kids also got to see their first movie in a theater!  (Well, Julia slept through her first movie).  We saw "Rio" which is one of Jed's favorites.  It is spectacular on the big screen and he only got antsy a few times.  A big thank you to the local movie theater for doing free movies in the mornings during summer!  Such a great way to beat the heat.

Next on the agenda is hitting the neighborhood pool, trying to get out to Purina Farms to see the animals, and definitely doing some story time at the library.  I could really get used to this staying at home thing...



Contact hell

We have officially arrived in contact hell.  Do not pass go, do not collect 200 dollars.  Just grab a flashlight and search.  Search the hall, search the crib and do not go on a walk in the stroller because who knows where it could fall out.  Do not put your child in the nursery at church because you will never find the contact amongst the toys.  You must stay in one room ALL THE TIME in order to locate the contact when it falls out.  This my friends, is contact hell.

Julia got a new contact several weeks ago.  I was really happy because she had been close to 7 weeks without patching/contact because of a lost contact and surgery.  This new contact was falling out daily.  So we switched to glasses for a bit, but she HATES them.  (By the way - getting the glasses was a saga in and of itself.  Her frames had to be shipped to Minneapolis to have the lenses made and then they sent only the lenses back and not the frames.  Lots of drama.)  She really can't see out of the glasses and I imagine wearing a patch and not being able to see would be pretty horrible.  Well, she usually can't see much when she is patched anyway, but it is much worse in her glasses than in her contact.  The eye doc warned us that unilateral aphakic kids don't do well with glasses because it is like looking through a magnifying glass and it turns into "barrel vision." 

So we called our doc to have a different contact made.  It finally arrived and we picked it up yesterday.  Yesterday afternoon it fell out 3 times before I called it quits for the night and didn't put it back in.  Today it has fallen out 3 times - once while she was doing occupational therapy with Nina.  Poor Nina felt so bad, even though it was not her fault.  Thankfully we found it.  Just now, while writing this blog - it popped out again.  I found it on the carpet.

I have decided to try to change my attitude about the contact.  We are going to lose some.  It is inevitable and I need to accept that.  I can't live my life holed up in the house, afraid to go anywhere because I don't want to lose a contact.  We are going to enjoy our summer, go for walks, play outside and even go swimming.

Don't get me wrong - I am still nervous.  I still obsessively check her eye to see if the contact is in.  I worry that any time without her contact is time lost.  And we can't afford to lose time right now when we are possibly looking at another surgery this summer.

But we still will have fun:

Pretending to be gangsters.

And playing with trains:

Trying to crawl.

Eating:

Trying to eat!

He just plays too hard.

Just chillin with brother.

Our next pics will be from out and about because I am determined to have a fun summer.

I'm just praying that this next contact fits better and will stay in.  I feel like I am developing an ulcer over this contact!  So if anyone wants to join me, there is room for friends in contact hell!

Happy Mother's Day

Happy Mother's Day to all the wonderful moms out there.  This mom thing is hard - no lie.  You sign up for this gig and there are no guarantees.  It is so painful, heart wrenching, and scary that your heart wants to burst.  Then it is joyful, beautiful and so amazing your heart wants to burst.

I have always wanted to be a mom.  I don't think I will ever forget the emotional roller coaster of trying to get pregnant.  I know my journey was no where near as difficult and challenging as others.  But I do know that the month after month of negative pregnancy tests was hard.  It didn't take long to get pregnant with Jed.  Julia was another story.  She seems to have been difficult from the very beginning!  And in between the two we had a miscarriage.  It was heartbreaking and painful and I still think of that baby.  But then I squeeze my two little ones and my heart continues to beat.

During my pregnancies I was an anxious mess.  I was so worried of losing my baby.  Even past the first trimester - I was afraid of losing them.  The end was the worst.  I was terrified to make it to 39 weeks and then have a cord accident or some other freak occurance and lose my baby.  I was so focused on making it through the pregnancy that I never stopped to think about after.  It never occurred to me that my baby would have any special needs or health problems. 

Julia's eye took us by surprize.  And I still sometimes feel guilt.  When I am low, and feeling like I can't do anything right - it is then that I feel like I failed.  I couldn't even grow a "healthy" baby.  I somehow failed my beautiful girl in the second trimester.  When the tiny blood vessels in her eye were supposed to dissapate, my body failed.  Her eye didn't form the way it should.  Rationally I know that this is not my fault, that there was nothing I could have done different.  Julia just happened to be the 1 in 10,000 who are born with a cataract.  But the emotional part of me doesn't understand that and longs to have done something different.

But here we are.  We have a rambunctious two year old boy whose smile lights a room.  He is funny and smart and handsome.  And we have a beautiful 7 month old who is starting to crawl and really starting to smile.  She is perfect and made our family complete.

I often hear people say, "if I could go back, I wouldn't change anything.  The struggle made me who I am today."  I will freely admit that I am not there yet.  If I was able to go back and change things for Julia so that she didn't have to have surgeries, wear a contact or suffer through patching - I would.  In a heartbeat, I would.  Maybe when she is older she will be able to say the struggle made her the strong woman she is - but right now I would do anything to make things easier for my baby.  That is the heart of a mom. 

Happy Mother's Day!

beautiful things

Things have been challenging lately.  Several of my "imom" friends are dealing with surgeries - scary surgeries.  Well, all surgery on your baby is scary, but the thought of losing vision, when you have fought so very hard to preserve it, is terrifying.  And I don't have the right words to say.  I'm not sure how to help.  And I remember being in the same situation - you go to the eye doctor expecting a routine appointment (although deep down inside you are worried but would never say it out loud) and instead of "normal" you are scheduling your baby for another surgery.

I remember driving home from that appointment and I called my sister and cried.  I cried for Julia - for the pain she has had to endure and the bravery she has shown at such a young age.  I cried for myself - what had I done wrong?  Why me?  Why Julia?  What was going to happen?  Would my baby be able to see out of both eyes?

My sister was wonderful and just let me cry.  She didn't try to fix it or make it better, she just listened.  So far all of you wondering how you can help a friend in a similar situation, here is some advice.

Don't say:

- It is going to be okay.  You don't know that and can't guarantee it.  A better choice of words: I know this is difficult and the future is scary, but I will walk with you to the other side.

- It could be worse.  She/He could have cancer, heart disease, etc.  We know it could be worse.  We visit hospitals all the time with our children and we see other kids in terrible health situations.  But we don't need to hear this right now.  Because right now it is "worse" for us.  It is our baby and we are scared and angry and upset.  A better choice of words:  This is horrible.  It is not fair that your child is going through this.  It is okay to be upset, afraid, and angry.  How are you really feeling?

- At least she/he has a good eye.  Again, we know this.  And while we are thankful for this - it doesn't help to be reminded in this moment.  We are scared, sad, and angry about the other eye (leg, arm, whatever the case may be).  A better choice of words: What is her prognosis?  Do you want to tell me about the situation?  How can I help you while you go through this?

I think most of all we just want to be validated.  We may feel like our world is crashing down around us and we need someone to understand that.  To hear us vent, be scared and rant about how unfair this whole situation is.  Someone to listen.

I know that I have felt lots of emotions surrounding Julia and her "eye."  It has been a roller coaster ride that is neverending.  I have wondered, "Did I do something during the pregnancy?"  "What did I do to make God angry?"  "Why is this happening?"

A couple weeks ago at church I heard a new worship song.  Here are the lyrics:

All this pain
I wonder if I’ll ever find my way
I wonder if my life could really change at all
All this earth
Could all that is lost ever be found
Could a garden come up from this ground at all

You make beautiful things
You make beautiful things out of the dust
You make beautiful things
You make beautiful things out of us

All around
Hope is springing up from this old ground
Out of chaos life is being found in You

You make beautiful things
You make beautiful things out of the dust
You make beautiful things
You make beautiful things out of us

You make me new, You are making me new
You make me new, You are making me new
You are making me new

And I realized, God is making me new.  He is making beautiful things out of the dust.  Don't get me wrong, it isn't easy or fun.  This is the challenge my daughter has and I am going to let God make something beautiful out of it.  I have never liked the Christian platitude that "He turns a mess into a message."  When I am in a "mess," the last thing I need to hear is that God is going to use it for his glory.  Really?  God gave me pain and suffering on purpose so that He can have a message?  He made my daughter suffer so that He can have a testimony.  I don't buy it.  I'm not sure why some people suffer in certain ways but I know that this journey is changing me.  And I am going to try to let it change me for the better.  Not for a "message" or "testimony" but because He cares about me.  God loves me and wants my life to be a garden springing out of the chaos of this world.  So in the chaos, pain, hurt and fear - I will find beauty in the dust:

He is making something beautiful out of us:

And if you want to listen to the song, here is a link:

You Make Beautiful Things - song

More waiting.

We are waiting again.  Waiting and waiting and waiting.  I am tired of waiting.  It seems like I want time to go faster so I can be on the other side of this "eye thing."  But I don't want time to go faster because I want to soak up every moment of my little girl being a baby.

We went to the eye doc today.  The great news is that her eye has healed wonderfully from the surgery and all the inflammation is gone.  Which means no more drops!  So the contact is in and we start patching tomorrow.  During the last surgery the doc "opened" her pupil a bit so now it is nice and round.  It is still smaller than the other eye, but looks so good.  The only down side is that now it seems like it is harder to see if her contact is still in.  Or maybe I am just out of practice since she hasn't worn it in 7 weeks!

The bad news is that she has developed a pretty bad case of esotropia.  That is when the eye "wanders" toward the center.  I knew her eye was turning in quite a bit (see previous post).  But, even the doc was surprized at how bad it has gotten.  So we are going to see if now that she has the contact and can patch if the turn will correct.  If it doesn't, she will be having another surgery. 

That's where the waiting comes in.  Nothing we can do for the next 8 weeks except patch and wait.  It is so hard to be constantly on edge, worrying and watching to make sure a tiny contact stays in a little eye.  I know losing a contact is not the end of the world, but I feel responsible for constantly checking, checking, checking to make sure it is in.

I tend to be stressed and anxious and I am tired of feeling that way.  I want to enjoy my baby - all her milestones (rolling, crawling, babbling) and not worry about her "eye."  So I have a new goal.  I plan on trying to stay in the moment and just enjoy the time with my family and try not to worry about the next appointment. So those of you that see me in person can help me with this!

Emotional

I seem to be an emotional wreck lately.  I've been stressed and edgy which turns me into a "cry at the drop of a hat" kind of person.  This last surgery for Julia took a toll on my emotions and I still don't feel quite right.  My biggest fear now is that we have been 7 weeks (YES, SEVEN weeks) without a contact or patch.  Her eye is constantly turned in now. My mind begins to race and I begin to think that we are missing the window - that this critical time when her brain should be connecting with her eye is flying past and we are MISSING it.  Then I obsess and worry and cry and sometimes turn into an OCD crazy person.   (My poor husband gets the brunt of that last one).

Her poor little eye.

I want to be in control.  I want a plan.  I want to make a list and check everything off, one by one. 

1.  Cataract surgery - check
2.  Wear contact - check
3. Patch her stronger eye - check
4. Get an IOL - check
5.  Julia can see - check

See how easy that would be?  Why can't it work that way?  Instead we have had -

1.  Cataract surgery - check
2. Can't find a contact to fit - check
3.  Finally find a contact - check
4.  Take out contact because of eye infection - check
5.  One month later lose the contact  - check
6.  Fight with insurance to pay for another contact - check
7.  Get a spare contact (that isn't the right prescription but is at least something) - check
8.  Lose the spare contact - check
8.  Have another surgery - check
9.  Wait what seems like forever to put contact back in - check
10.  Watch your daughter's eye slowly turn in more and more - check

To take back some semblence of control I asked the PO about glasses.  The first doc said no - that it would be a waste because the prescription for her aphakic eye (the eye with no lens) would be so high that it would be like looking through a magnifying glass.  Because the images would be so big, the brain would shut it off anyway.  Keep in mind this was the surgeon.

I sat on this for a couple weeks and then decided I wanted another opinion.  So I talked with the PO that handles Julia's vision - the doctor that determines her presciptions, fits her for contacts and helps with patching.  He said that we can do glasses but that it is the least successful option and most kids only tolerate them when patched.  I said that I didn't care - I needed something.  So off to the optical shop we went and got these:

But of course they are pink (I just couldn't find a picture of the pink ones).  They are really cute and hopefully will be in soon.  We will find out on Wednesday when we see the doc if we can put her contact back in.  We are caught in a horrible catch 22.  She desperately needs to wear the contact to restore her vision.  But in order to avoid a repeat of the scar tissue and regrowth, she desperately needs drops.  Lots of drops.  All day long.  If she wears the contact, the drops don't get into her eye - they are soaked into the contact.  Which puts her eye at risk and also ruins the contact.  But she needs the contact to regain vision and she needs her eye to not grow scar tissue to regain vision too!  Ack!  It is such a love/hate relationship.  I hate that she cannot wear her contact right now.  But I do love that I don't have to worry about losing it or putting it in.  Maybe I should just try to enjoy this time of no contact and no patch.  But then the eye keeps turning and turning.

I know it is vanity to be upset at an eye turning in.  But as a mom, I just want my little girl to be happy, accepted and "normal" (whatever that is).  The stares with a patch are bad enough.  But I also catch glances now because of the eye turn. 

The kids had their pictures taken and even the photographer commented on her eye.  It was so obvious in the pictures that I came home and cried.  Again - I know it is vanity, but my heart hurts for everything she has to go through.  At daycare today, when I was picking up the kids, I had to put in her eyedrops.  Another mom commented, "She handles that so well.  She must be used to the drops."  I don't want my daughter to be "used to eye drops!"

I guess I am having a small (okay big) pity party.  Maybe I didn't "grieve" when I found out about her condition.  I was so focused on getting through the initial surgery and getting a contact that I didn't really "feel" anything.  Now that we are just waiting and waiting, I am "feeling" a lot!  And I am angry, upset, terrified and angry.  Did I mention I was angry?  And upset?  And crying at the drop of a hat?

But all these emotions are worth it.  I wouldn't trade them because with all these emotions I got a beautiful little girl.  A sweet, happy, loveable, kissable, squeezable little girl.  Who right now doesn't know that her eye is turning and just loves smiles, hugs, kisses and her brother.

Turning Two!

My little boy has turned 2.  He is no longer that snuggly, small baby that falls asleep in your arms and needs you every minute of the day.  He is a little boy - a rough and tumble, "I do it," climb on everything, big laughs, name all the construction equipment little boy.  He says "I love you Mommy" and my heart melts as much as it did the first time I saw the little flicker of a heartbeat on an ultrasound.  He asks for the "sunshine song" every night before bed.  I wish I could permanently imprint every single moment in my mind - I never want to forget his smiles, his laughs, his funny sayings, his adventurous spirit.  He still snuggles, still wants to be held, and occasionally falls asleep in my arms.  He doesn't need me every minute of the day, but I am still there for every minute.  Watching, remembering, trying to capture time as it flies by. 

It seems like just yesterday that I was counting down the days to the end of my pregnancy, waddling around, and going through labor.  Wasn't he just laid on my chest in the hospital?  The little 8 lb bundle is now a 29 pound little boy with an attitude and a brilliant mind.

There is something special about a mother-son relationship.  I cherish it.  It is beyond anything I could have ever imagined. 

36 weeks pregnant

Newborn

One year old

Two years old!

Eating cake.

I love my sweet boy.