Uh, oh...

Gotta go find the gate!

My Champion!

I did it!  I completed the half marathon!  I am so proud of myself!  One month ago I broke two toes and was sad and depressed.  It seemed like God had yet again taken away something near and dear to me.  It didn't make any sense, breaking two of my toes at the worst possible time for Disney World and for my training for the half.  Training had been such a sacrifice for Daddy and me to coordinate, but it was good to take a step away from mom responsibilities for a moment and try to use that time to pray and heal.  But once I broke my toes, my training was over.  I did not run for 4 weeks.  It was a very frustrating and disheartening time because I figured I would barely be able to walk within the maximum allowed time of 4 hours.  I debated about even participating. 

BUT...a few days before the race my toes started feeling less sore and I figured I could try to jog as long as possible and go from there.  So I started the race with my NICU friend Callista running at her pace of 10:30ish...and I kept running...and kept running!  My toes were super cold and didn't warm up until 3 miles, and didn't hurt too bad until the 10k.  But I kept going.  I was close to NCH by this time and I really didn't want to stop, so I kept going.  Shortly after running past the hospital I told Callista to go ahead and I walked on and off during the last 3 miles.  

At the start a mom read my sign on my back and asked about Joshua.  Another man encouraged me saying we were fundraising and running for a great cause.  A woman during the race asked about you too, how early you were, how little, etc.  I got to celebrate your story during the day and just think back on the hard year it was and being so thankful of the outcome.  Thinking of all your NICU friends, all your primary nurses, all the patient champions, all the kids that were on the holiday giving commercial with you last year, thinking of Madi (Cami's twin who passed away)  emotions came in waves throughout the race.  As I neared the finish though I really wish my toes could have cooperated to sprint to the finish.  So I could pound my emotions on the pavement, it was emotional finishing for many reasons, but also because I really did not think I would be able to participate!  I not only finished, but I ran about 90% of it!  with 2 broken toes!  Thank you Lord!  Makes me want to do it again next year...hopefully I'll be healthy!

Right before the start with Cami's mom!

My cheering section!

   

Hugs all around at mile 12

Abby waiting to give me a flower she found

My champion!

I loved the NCH butterflies, kept me focused on why I was running

Thinking back: Opening your eyes!

Today I am thinking back to the day you opened your eyes for the first time.  (You were born with your eyelids fused shut)  I remember Joe dropping me off in the mother's room to pump.  Those early days, I rode to your room in a wheelchair that daddy pushed because I was still recovering from your c-section.  During those days I was also extremely sleep-deprived and dazed.  So as I pumped in the little pumping booth with the curtain drawn I closed my eyes and I had a "vision."  It was weird - I was still awake, my eyes closed, but I was dreaming and I saw you in my minds eye, somehow in the back of my eyelids.  I saw a profile of your little face - it was such a clear picture...and as I was watching you, your eyes fluttered and your little eye opened just a tiny slit and it gave me such a hopeful feeling!

When I was done pumping, bottling, washing my pumping equipment and wheeled back to your NICU room Daddy and I lifted the cover over your isolette and after a few moments I saw it!  I saw exactly what the Lord had shown me just moments before!  And now as I look back on the pictures we took from that day when you first opened your left eye. it is EXACTLY that clear picture in my mind's eye, that was ingrained in my head when I was pumping.

Such a wonderful little blessing during such a hard time!

Joshua Aaron

At the beginning of our 2013-2014 homeschool year Abby and I talked about names.  The names of Jesus and the meanings of our own names and why those names were chosen.  Of all of our children your name has the most meaning to your mom and dad!  The Lord placed your name on my heart!

When I got put on bedrest at 22 weeks, we had no names picked out.  Only a few hours before going to the hospital had we finally looked in the envelope that the OB gave us with your gender.  Another BOY! 

Bedrest was hard, discouraging, and emotional.  I spent a lot of time wrestling with the Lord and during that time the verse Joshua 1:9 came to mind several times.

"Have I not commanded you?  Be strong and courageous.  Do not be afraid; do not be discouraged, for the LORD your God will be with you wherever you go."  Joshua 1:9

The sign I made on bedrest.
And a dreamcatcher from Abby to decorate
my room at Riverside.

God spoke to me through that verse and it gave me courage.  I suggested the name Joshua to Daddy and my reasons why I wanted to name you Joshua and he whole-heartedly agreed. 

That verse became the verse I repeated to myself on several occasions: each time they prepped me for a (possible) c-section or took me down to L&D, or were worried I was going to hemorrhage and eventually when I was taken into the OR.  We also repeated it when you needed to be transferred to NCH and with each and every scary diagnosis along your journey.  I posted the verse in my hospital room at Riverside and we posted it in your room at NCH.  This verse is a command!  God doesn't merely just suggest to be strong and courageous because He is with us, NO!  It is an ORDER, a command from God that we must do because He is with us!  It forced me to be courageous each time everything around seemed to be crumbling apart!

Joshua also means:  The Lord saves or God is my Salvation.  That was our prayer for you - that God would save your life and that we would be able to experience earthly life with you.  We knew that there was nothing we could do for you.  We felt very helpless and had to wholeheartedly rely on the Lord to strengthen and save you!

Joshua was a great warrior in the Bible.  He fought and won many battles - we prayed that with each battle you faced the Lord would help you conquer and overcome.

And now to find a middle name... I was thinking of other names that would go with Joshua and thought Joshua Aaron had a nice ring to it.  When I looked up the meaning of Aaron in the baby name book, I knew that the Lord had put that name in my head and on my heart because Aaron had the perfect meaning.  Aaron means "bringer of light" and it was also our prayer that somehow through this whole awful situation that your story would be a light to others who heard it.  We prayed that the Lord would be glorified no matter what happened, whether you lived or died, whether you were healthy or handicapped.  Even before you were born, you were shining light to others who had not prayed for a long time.  They began lifting you up and speaking to the Lord again.  And as we continued to tell your story there is no denying the hand that the Lord had in healing you!

Joshua Aaron, my strong, courageous warrior, may you bring Jesus' light to those you meet each day of your life.   I love you; your name could not be more perfect for you and the story God has written for your life.

Thinking back: Heart surgery

One year ago I went to the hospital to spend the night to hold you to prepare you for your heart surgery.  Emotional as I often am, I called a friend on the way to the hospital for emotional support.  I was nervous about the kangaroo session with a night nurse I didn't know and overall nervous about what the next day would hold.  This friend replied by asking, "Well, is it necessary for you to go in and hold him?"  Ummm...YES!  What kind of question was that?!

This was one of the many insensitive comments that people said to us throughout the journey.  The "friends" that "seemed" to walk by my side more out of pity or obligation than to be a loving, compassionate shoulder to cry on like I so desperately needed!

I could not verbally express my feelings at this time last year, but I was so scared that you would not make it through the surgery or that in the days to come you would pass away.  You were very fragile, not even three pounds.  This PDA ligation used to be a more common surgery, but in recent years at Children's they have been able to close the hole using medication instead of surgery.  Our group of doctors had only had two patients in the past year that had undergone this surgery.  One had passed away.  50% is not very good odds and I was scared!

So, YES! I HAD to hold you, for as long as they would allow me to hold you!  I couldn't forgive myself if I chose sleep over possibly my last chance to hold you.  What kind of mother would even contemplate that idea?!  What kind of friend suggests that idea?  I didn't realize how great my love for you was then - I was just operating in fear and instinct.

The day before your surgery

Right before your surgery

But now one year later on the eve of your heart surgery anniversary, you laid snuggled on my chest sound asleep and I gave you the biggest hug and allowed the tears to stream down my face.  Tears of love, tears of joy, tears of longing for a true friend in Columbus.  I love you so much Joshua.  My love has never felt so strong or so deep for any of my children as it does for you now.  It is amazing how far the Lord has brought you and what you have overcome with His strength.  I absolutely love your little glasses on you.  To me it is a symbol of strength and courage for all you have been through and all you have overcome.  It makes me feel so good to see this very tangible thing that I was able to do for you and how you thanked me with that beautiful smile.

I love you Joshua  - to the moon and back - sleep peacefully tonight my son.

Thank you Lord for this overwhelming, overflowing, down deep to the innermost part of my heart, this love I feel for Joshua.

My little four eyes (day 2)

This morning the most amazing thing happened...I got you up, nursed you, then put on your new glasses.  As you sat there looking at me through your glasses your whole face LIT UP!!!  Your eyebrows raised and you gave me the biggest, brightest smile I had ever seen.  Then you looked around the room and looked back at me and your smile got even bigger!  It brought tears to my eyes seeing the joy on your face as you realized you could see clearly!  Thank you Lord for this special moment!

I was a little worried that throughout the day you would be tugging at your glasses like the day before, but we had NO issues with you taking them off!  The biggest problems it looks like we will have is keeping them clean!  They get filthy between baby food, spit up smudges, and just general baby crusty.  When you get tired you aren't able to rub your eyes, poor little boy.  You go to rub them and then hit the glasses and get frustrated.  I'm so happy that you are able to see now!  

You look super cute to me with the glasses on, but when I take them off I miss your little baby face.

My little four eyes (day 1)

We got the call today that your glasses came in!  Your siblings were super excited for you and Abby wanted to pick them up right away!  So out we went later in the afternoon after the rain had stopped to pick them up.

Wow, when Daddy and I look through your glasses they are strong!  We cannot see a thing out of them!

Here you are in your new glasses!  I'm a little concerned that you are going to grow out of them quickly!  They seem a little small, but the next size seemed too big.

Yummy puffs!

At the ophthalmologist you were cranky and did not like the glasses.  You tried to take them off every chance you could.  I took them off on the car ride home.

We've gotten differing advice on how to handle your "adjustment period."  The person who sold us the glasses said to try to put them on in 15 minute increments and see how you do.  She said it will take a couple weeks to adjust to.  Your HMG PT said to start putting them on while you are eating because your hands will be occupied, then go from there.  The Ophthalmologist says you will enjoy seeing so much that you will not want to take them off.  Well, I guess we'll see in the next few days how you do!

In the evening, Mommy spent some time on the floor playing with you with your glasses.  You didn't seem to mind them too much, but you weren't particularly smiley either.  I think you could see better?  You seemed to have a better attention span as you played.  We'll see how you like them tomorrow.

We got the walker out the other day.
You can take a few steps if we help you
push the walker really slowly.

There's a smile!  You are so serious with these glasses!

You are very, very observant!  You are
playing more with this table than you ever
have!  You definitely notice all of the detail!

Bedtime for the boys!

Look at you!

Before Abby and I left for Disney World you had pulled up to a stand once or twice.  It was a huge struggle and took lots of balance and strength.  But while I was gone you improved by leaps and bounds and now look at you!  You are pulling up on EVERYTHING that you see!  Play table, the couch, me, my leg, your siblings, other toys...

You can see it in your eyes that you want to move in this upright position.  You want to cruise, to walk...it won't be long now!  Look at you!