Nemours

I have to say that Rob and I love Nemours…and we go there so much so I’m glad we do love the hospital and the team of people that care for Reagan.

The newest issue of the Nemours Together Magazine features Reagan’s story.  I’ve put the article below so you can see it.

Reagan only page

Ray Ray, our Bay Bay

Seriously so proud of my little girl. Just something I’d like to share, Reagan Elle means “noble girl” and she’s already starting to live up to the meaning of her name.  I don’t know what God has in store for her or for us, but a friend of mine at church recently said to me: “Do you find it crazy that God just planted her in your life? She’s got such an amazing story already and she’s only four months old! AND, God chose you guys…He CHOSE YOU!”

Mind. Blown.

at-t-infinity-mind-blown-o

I often think that God made Reagan with us in mind, and obviously He did b/c He’s God and He doesn’t do anything by accident.  Although we have no DNA connection to Reagan, our inherent mark will be on her life, just as her mark will be on our life, and already is. The way that God made Reagan for us is amazing.  She’s helping us face fears, learn more about us, about God, about prayer, about love, about people, about what’s really important.  Having a child changes your life…and people say that all the time, but you don’t understand what it means until it happens.

She recently had a Nemours visit and her test results were great and I just knew they would be…she’s growing wonderfully and we are upping the protein yet again.  I am praying that God heals her…every night Rob and I hold her together and pray for healing before we put her in her crib.

Verses like this remind me of God’s incredible power to heal:

Luke 6:19
and the people all tried to touch him, because power was coming from him and healing them all.

Matthew 9:35
Jesus went through all the towns and villages, teaching in their synagogues, proclaiming the good news of the kingdom and healing every disease and sickness.

Side note: Jesus healed EVERY DISEASE AND SICKNESS! Jesus had the cure, was the cure, IS the cure! 

One purpose of this blog is to give hope to other families who receive the shocking news that their newborn has Glutaric Acidemia Type 1. And even though Reagan is only four-months old and has lots of growing left to do, plus more Dr. visits and tests, she’s thriving and meeting milestones, I pray, and I ask that you also pray, that this continues.  And I ask that you pray for healing, a complete miracle.

The other night, Reagan slept nine hours.  I know most parents would be ecstatic at how wonderful that would be, but actually, a child with GA-1 can’t “fast” this early on.  Somehow our alarms did not go off for her middle of the night feeding and Reagan didn’t cry at all, she just slept soundly for three hours longer than she should have.  So I let her Dr.’s know and they said, as long as she woke up fine, she’s fine.  The reason it can be dangerous is that if you repeatedly let a child with GA-1, sleep through the night, or “fast” that’s when a crisis could occur b/c they need to break down  something…and without providing her food every six hours, she’ll start to break down her muscles.  By breaking down her muscles, amino acids would build up and that’s what she can’t flush out of her system.  It’s complicated, I know…I just hope that I’m relaying the information correctly.

We’re just so proud of our little Ray Ray.  She makes us laugh, and she is a complete joy in all senses of the word. So it’s easy to understand why I receive these notes on our dry-erase board in the mornings after Rob has fed her.  B/c seriously, SHE IS AMAZING!!

These are the notes i wake up to that Rob writes in the middle of the night :)
These are the notes i wake up to that Rob writes in the middle of the night 🙂

 

Nine Years

Today is our nine-year wedding anniversary!  Being married to Rob is amazing…it’s a beautiful thing when you have a partner who you can talk freely with; share your dreams, fears and thoughts with.  It’s awesome to share your life with someone who loves you for you, doesn’t judge you, draws the very best out of you and wants the very best for you.  Someone who laughs at your corny jokes and all the inside jokes you create too…laughter is the music of life so when you have someone you can always laugh with and take in the amazing adventure of life with, you know you’ve got something special.

my go to adventure partner!
my go to adventure partner!
my preferred person to be ridiculous with.
my preferred person to be ridiculous with.

Strong marriages don’t just get to be strong…the strength of a marriage (or any relationship) is tested through the difficulties and trials they endure…during those times and especially as the result of those times.  What’s left after the trials and difficulties?  Bitterness? Love? Appreciation? Sadness?  What is it?

One thing I learned in pre-marital counseling was to always fight fair…Inevitably, when trials come and arguments arise, will you fight fair?  Will you keep on topic or will you bring something up from a year ago that has festered inside of you.  Will you slam the other person with names or will you treat them with love, even though you are so mad you could scream.  Married couples will argue, but I’m glad I can say I feel our arguments are few and far between; of course I’d be lying if I said we never had an argument.  And, at the end of every single one of our arguments…Every. Single. One. We are hugging each other, forgiving each other, laughing, and moving on.

It sucks when you have an argument close to bedtime…b/c we don’t go to bed angry.  That’s a rule. We never ever have.  But, I remember one time this year…after Reagan arrived…I was so, so tired, and I thought “well, I guess this is the first time we’ll go to bed angry.”  And the argument was totally my fault, through my exhaustion I just got irritated and took my feelings out on Rob, out of the blue.  He was hurt…I hurt him.  But he pursued me…he was not going to let us go to bed angry, and I’m so grateful for that.

This is marriage.  Pursuing your spouse, even when you don’t want to. Loving them.  Talking to them and working at your marriage.  This is how marriages are built and how they are strengthened and how they make it to 60+ years.

Those verses in the Bible are true…and they are read at almost every single wedding.  I hope that we always live them to one another…

I Corinthians 13:4-8
Love suffers long and is kind; love does not envy; love does not parade itself, is not puffed up; does not behave rudely, does not seek its own, is not provoked, thinks no evil; does not rejoice in iniquity, but rejoices in the truth; bears all things, believes all things, hopes all things, endures all things. Love never fails.

Love. Never. Fails.

Want to know why love never fails? B/c God is love, and God cannot fail.

We decided when we were approaching our one-year anniversary that we’d do the traditional gifts…and years one and two (paper and cotton) we each got something for the other person…but on year three, we decided we’d start picking out the gift together as a way to really celebrate and make each anniversary more memorable.  So throughout our house you can see the gifts we purchased together for our anniversary.  Year three was leather, so we splurged on our Restoration Hardware couch…this was probably the thing that pushed us to picking things together b/c we eyed the couch for a few years.  So our tradition continues and the gift for nine years of marriage is pottery.  Rob and I painted some pottery last night and we decided on his and hers garden gnomes!

 

Rob is very serious about his gnome.
Rob is very serious about his gnome.
My polka dotted gnome. She also has creepy eyes.
My polka dotted gnome. She also has creepy eyes.
The final product!!!
The final product!!!

Pottery reminds me of God.  God is the potter, we are the clay, and He molds us into what he wants us to be.  I think of all the molding God had done over the last nine years in our marriage.  Shaping us, refining us, moving us in one way or another.  All that shaping and molding has brought us to where we are…nine years, happily married and adoptive parents.  It’s a painful process to be molded, but the end result is beautiful.  I am so thankful for the nine years I have spent as Mrs. Wurzel and I can’t wait for what the future holds.

Happy anniversary to us!!!

A Loose Grip

The title of this blog is a complete oxymoron, but there’s good reason.  Let me explain…

In my mind, I feel the need to control every situation for Reagan.  Who am I going to let be around her…who have THOSE people been around…and so on and so forth.  You would call that a tight grip, a short leash, neurotic maybe, if she didn’t have the GA-1 diagnosis and I didn’t have a good reason for it.

But recently a dear friend from college, Denise, asked if she could stay with Rob and I for the weekend.  We’ve always offered our place before, and now…she’s taking us up on it.  Whoa. That’s my first thought.

Denise: Do you mind if I stay with you this weekend while I’m in Orlando?

My internal thoughts: [Um…oh wow, are we ready for that? Who’s Denise been around…how do I answer this nicely? Can I question her past few days of people interaction without sounding like I’m giving an interrogation].

Me: Let me ask Rob.

As I chatted with Rob and told him my fears, he calmly reminds me that we can’t live in fear.  Our Dr.’s remind us that we can’t live in a bubble…I keep asking myself why we can’t do that…even though I’m an extreme extrovert, I can make this sacrifice.  But the thing is, it’s just not possible.  Reagan needs to experience LIFE, like a normal baby, toddler, child, teenager, adult, etc.  God knew what he was doing when He put our family together.

My thoughts continue to wander…every night when I pray for Reagan, I pray that God protects her.  And recently I realized, am I really trusting God if I pray for Him to protect her and yet, I try to keep my grip on every circumstance and scenario that presents itself to us? The reality is that I’m not trusting God to protect her.  Yes, I need to be cautious, but at some point, I have to loosen my grip to try and control EVERYTHING and start trusting God for her safety.  Guess who controls everything? Not me. That’d be God. And I can’t think of anyone else who wants the very best for Reagan than the One who created her.

This impromptu houseguest is something that is helping me 1) realize my fears and also that I’m doubting God and 2) it’s giving me the opportunity to face my fears and trust God.

Isaiah 41:10
So do not fear, for I am with you; do not be dismayed, for I am your God. I will strengthen you and help you; I will uphold you with my righteous right hand.

2 Timothy 1:7
For God has not given us a spirit of fear and timidity, but of power, love, and self-discipline.

In all my decisions surrounding Reagan, it’s a ripple effect in my mind…if I do this, how will that affect her…if I go here, what if this happens? If I bring her to that, what if something unexpected that I didn’t plan for arises? … and on and on and on.

I was reminded recently that even if I try and I think of all possible scenarios, I can’t predict what will happen.

Case and point: My recent mall trip to return one item and exchange another.  I thought, I can bring Reagan, I can do this, and I’ll be fast, 30 minutes in the mall tops. Plus, I can fool her…I’ll put a night time diaper on her, those hold so much pee, she won’t even know if she has a wet diaper.  I’m such a GENIUS! Bonus: Reagan has already pooped like three times today, there is NO WAY she has more in there.  I’ll feed her before I go, but still take some food just in case, and she should be totally fine. I’ve accounted for everything...

Well, the screaming started about 15 minutes in…OK, I’ll hold you for a little bit before we go to the next store.  Now let’s go in your stroller…oh, you want to scream the entire way? Maybe you’re hungry…let’s stop at Starbucks and get hot water to heat up your food.  Ahhh…I figured it out, you were hungry, small delay in my expected 30-minute mall trip, but no big deal.  Now you’re fed, let’s press on.  Did you not get enough food…b/c now you’re screaming in Baby Gap and I’m not quite sure why.  Also, there’s a strange lady trying to touch your arm as if she can soothe you.

My response:

Ok, let’s power walk to the car…and while we’re on our way, let’s tell the mall about the new octave you learned about in your voice!  WOW! I am now on the receiving end of those people who give dirty looks to those parents who have screaming babies…(disclaimer: I am also one of those people, see above)…if I could have given myself a dirty look, I would have.  Instead, I gave everyone else a dirty look to MOVE! GET OUT OF MY WAY!!! I’m trying to get out of here…my baby is fed, she has a night time diaper on, and there is NO WAY she has pooped in that night time diaper, she’s just cranky, OK?!!?!

Whew…finally in the car, luckily my mom was in attendance, and also a witness to the crazy in case you want to pepper her with questions for a good laugh, and she helped to soothe Reagan while in the car.

Back home, I decide to change her…well, what do you know.  POOP! Do you see my problem? I was clinging to MY pre-determined expectations and MY wanting to control the situation and I gave no room for any deviation to MY plans.  Except, I have this one constant variable…my daughter, and I can’t control what she does.

I keep learning this lesson.  God keeps putting me in these situations and I realize, I can’t control everything…or anything really…other than my reaction to what I’m presented with.

So this weekend, my friend Denise stayed with me…and we hung out with Reagan, I even let her hold her. Please don’t be mad if I’ve delayed giving you the joy of holding Ray Ray, just love this precious pic below like I do…

Look at these sleeping beauties! They both just woke up.
Look at these sleeping beauties! They both just woke up.

I love Denise, she always encourages me, challenges me and makes me want to strengthen my walk with the Lord.  We had such a fun time…she joined me to show a property, we cruised around UCF and briefly took in a bar mitzvah (but seriously, we did…Congrats Nick, we’re all sooo proud of you!!)

And before she left, she shared a verse that gave me major perspective and further cemented that I am not in control of anything…

Psalm 115:3
But our God is in heaven;
He does whatever He pleases.

And there you have it…God does what he pleases, and God is good, I’ll keep working to loosen my grip.

Never Fully Dressed without a Smile

Annie was one of my all time favorite movies growing up. I watched it over and over…I think that’s why the tune has such a special place in my heart.

Who cares what they’re wearing on Main Street of Saville Row
It’s what you wear from ear to ear
And not from head to toe.
That Maaaahaaaahaaaattters!!!!

Speaking of what you’re wearing…You know those kids who dress themselves…and their parents let them go out in public with that jazz?

Meet E, daughter of Dan and Rebekah.

Where could I get leggings like this? But seriously...
Where could I get leggings like this? But seriously…

Do you ever think, “how did THAT happen?”

This outfit is a perfect 10!!
This outfit is a perfect 10!!

I actually LOVE…let me repeat LOVE it when THAT happens.

Wanna know why?

B/c I still do it.

So this morning I greeted Rob in the kitchen with this outfit to take Bauer out…our conversation went something like this.

Just dressing myself like a big girl this morning.
Just dressing myself like a big girl this morning.

Rob: You look crazy, Anne-Marie! CRAZY!

Me: So what?

[what I’m actually thinking]

tumblr_lgb298chS01qarkuho1_500

Rob: Why do you wear boots to take Bauer out, it’s like 85 degrees outside?

Me: I don’t want to walk in the grass and get my feet wet.

Rob: And your hair…

Me:

tumblr_lgb298chS01qarkuho1_500

The thing with kids, is they have no concept of other people’s opinions yet.

More evidence...
More evidence…

If we could learn to be more like E, and be unapologetically our good natured selves, the smiles we’d put on other people’s faces would grow exponentially. I don’t know where the confidence in my insane morning outfit comes from, I’m not worried that my neighbors will see me, most of them already have since this is the standard Bauer walking outfit once I’m in my PJs.  And it never fails, Rob shakes his head and has a hearty laugh…he knows I’m just being myself and I’m not apologizing for it.

So, I’m off to go show some property in my nice, bright, Navajo inspired outfit.

Did you know I'm part Native American?
Did you know I’m part Native American?

As Rob so kindly put it: “I like your shorts. If you were in the woods with those shorts on, you wouldn’t get shot, b/c people would be able to see you.”  Either way, I’m fully dressed…I’ve got my smile 🙂

Thank you to Rebekah for sharing these priceless photos of E and giving me permission to share her awesomeness on this blog…here are a few more.

Evelyn 3
We love your style E!

Evelyn 4 Evelyn 6