You called…

April 13, 2013 was the first time Rob and I have been able to go church since Reagan was born.  Man, it was amazing to go and see our friends and sing and worship and just be in the place we have called our church home for the past four years or so.  Sure we went to one of the services where the attendance is a little light…which was actually good, I look forward to bringing Reagan to that service…and hope she loves the loud music (at least it will drown out her cries for other attendees until I can get out the door and into the lobby).

The message was the story about the talents…more on that in a minute; first I want to talk about how one song in particular just struck a chord in me.  And my lovely friend Ashley was singing it…when my friends are up there singing, I tend to love the songs even more.

The song is by All Sons and Daughters and it’s called “You have called me higher”.  The message is basically saying…I could sit here and just wait for God to do something. I could remain status quo and stay the same person, never changing, never growing, never letting any walls that are built up inside of me come down. And I could be average, ordinary…and blend in with the rest of the world.

BUT…

God has called me higher, He has called me deeper…and I’ll go where He leads.

Gosh, I totally FEEL God moving in my life.  Walking into church and talking to people who say, “I love reading your blog and hearing about Reagan and what God is doing…I’m praying she will be healed too…” It’s weird that people are following along, but also encouraging and makes me so glad I have the friends and church that I do, and that we all DO life TOGETHER in prayer and friendship.

More than feeling good that what we’re writing makes sense, draws people in and that they’re actually reading and caring about us…I feel that God is using us.  He’s using Reagan…He’s doing something in OUR lives.  The God of this universe has said, “You! Rob and Anne-Marie!! I am calling you higher, deeper…Go where I lead you.”

The amazing thing is that God actually wants this for all of his creation.

Rob and I look at each other and shake our heads sometimes…did we ever think our lives would include adopting a baby? No.  Do we feel like God has led us to this place? Yes.  And we feel like Reagan couldn’t be anywhere else but in our arms.  I look at her sometimes and just think:

“You don’t realize what has happened to lead you to us. The decision your birthmother made when she picked us. The decisions we made exactly nine months prior to your birth to pursue adoption. You don’t know how many people are praying for you, and how God has chosen to shine a light right on your life and your precious, unfolding story.

staring. learning.

You don’t know yet that someone else carried you and then placed you in my arms. You just know that your daddy and I love you, and we care so much about you that it brings us to tears to think of the orchestrating that God did to make your story land in our lap.  You don’t know yet…but everyone is watching.”

Everyone is watching…and the master, He is also watching.

The message in church was the story about the talents.  The value of a “talent” translated would be about 20 years wages back then…close to $400,000 today.  So, the master goes off and gives talents to his servants…he entrusts those talents to them.  It would be like giving an investor this money to do something with.  Imagine giving one investor $2 million, another $800,000 and yet another investor $400,000.

“For the kingdom of heaven is like a man traveling to a far country, who called his own servants and delivered his goods to them. And to one he gave five talents, to another two, and to another one, to each according to his own ability; and immediately he went on a journey. Then he who had received the five talents went and traded with them, and made another five talents. And likewise he who had received two gained two more also. But he who had received one went and dug in the ground, and hid his lord’s money.” Matthew 25:14-18

Could you imagine if you gave your money to an investor and he just buried it? You entrusted something of value to him…and he did not care for it the way he should have…the way you would have.

God has entrusted Rob and I to care for Reagan, and she’s worth far more than any monetary amount.  To whom much is given, much is expected…I feel that any parent must feel this responsibility.  B/c no matter how a child comes into your life…the entrusting involved is at the highest level.

God gives all of us talents, gifts, things we’re good at.  Are we going to bury them?  God also provides a way for you do what he’s called you to do, to multiply those talents and gifts.  You might not know what that looks like, and it’s OK.  I don’t know what it looks like half the time either, but I was reminded to let God lead…and I will follow the leader.

All Sons and Daughters Lyrics and video below

I could just sit
I could just sit and wait for all Your goodness
Hope to feel Your presence
And I could just stay
I could just stay right where I am and hope to feel You
Hope to feel something again

And I could hold on
I could hold on to who I am and never let You
Change me from the inside
And I could be safe
I could be safe here in Your arms and never leave home
Never let these walls down

But You have called me higher
You have called me deeper
And I’ll go where You will lead me Lord
You have called me higher
You have called me deeper
And I’ll go where You lead me Lord
Where You lead me
Where You lead me Lord

And I could hold on
I could hold on to who I am and never let You
Change me from the inside
And I could be safe
I could be safe here in Your arms and never leave home
Never let these walls down

But You have called me higher
You have called me deeper
And I’ll go where You will lead me Lord
You have called me higher
You have called me deeper
And I’ll go where You lead me Lord
Where You lead me

Pinterest!!

I don’t really know what happened and it all happened so fast.  I love my mom and I love her enthusiasm about everything life has to offer…but truth be told, I got such a kick out of her Pinterest addiction, I just found it hilarious, so obviously I had to record her talking about it.

Me and my mommy :)
Me and my mommy

She told me about how to make a cake with two ingredients (I doubt it, Mom), and how she cleans her floors and clothes with some recipe from Pinterest.  “Really Mom? You clean your clothes with your own mixture?  Have you heard of Tide?” Even my mom’s massive passion for Pinterest could not get me to start “pinning.” I checked out my mom’s Pinterest board and until recently, everything was pinned to a board called “Salad in a Jar” which is why there are 1,385 pins onto that board. Oh mommy…I don’t think that’s how you Pinterest.  My mom has more followers than me, and she’s following 1,500+ people. She’s all about Pinterest.

I tried Pinterest when it first started, but I was too busy to get involved.  Recently though after Reagan’s 4 a.m. feeding, I lie awake in my bed with the monitor close by to make sure her sleep actually sticks. There’s not much FB or Instagram activity at 4 a.m., plus my E! News app doesn’t have any newer stories in Hollywood since I last checked…and I really don’t care about Justin Bieber’s latest concert debacle.

Sooo….I open up the Pinterest app that I’ve had on my phone FOREVER and never used and hope my password is stored.

Hmmm…what should I explore?

Rob mentioned wanting to make over our office into a more functional space as well as have it double as a yoga studio for me.  Loved that idea, let’s search “yoga office” not much pulls up but I find a few things and put them on my office inspiration board.  One day, maybe our office makeover will happen and my photo will be THE photo that people say “YES, I will do this…how amazing is that office, which also doubles as a Zen yoga studio.”

Then Rob nonchalantly mentions that next year when we get our adoption tax credit (which is quite sizeable, but no where close to the actual adoption cost), he wants to put in a pool.  “Oh, do you now?” Let’s explore some pool and patio ideas, on Pinterest and while I’m at it, I would like to convert our patio into AC’d space with retractable doors to the expansive lanai we will surely install.  Thanks Pinterest for holding on to that photo I found so I remember my idea two years from now when it might be a reality for us to do.  Until then, Pinterest is fun for dreaming if you can’t do.

I now understand my mom’s delight but I think it’s impossible for me to match the excitement she displays in this video. Only about five people have seen or even know about this video that I took of my mom after a glass (or two) of wine during happy hour at Outback.  I begged and begged my mom to let me post it.  I showed my cousins in San Francisco, who live just a stone’s throw from Pinterest headquarters, and they said it should go to Pinterest…that it would go viral (I truly believe it might) and that Pinterest should make my mom the spokesperson.  I kinda feel like it’s the type of video that should land my mom on the Today’s show drinking hour with Kathie Lee and Hoda.  Almost six months after I recorded it, she finally gave me her blessing and said I could post it, so here it is, and please, show her some love b/c I’m pretty sure she’s captured the essence of Pinterest and all its Pinners in this short two and a half minute video. Everyone, this is my mom and she’s fantastic!

 

 

 

Believe.

This post is going to be all over the place, but I have a lot to get out and this is my place to share my feelings and update everyone who is following Reagan’s story.  So, here we go.

April 2, 2013

I spoke with Reagan’s dietician…after an increase in her protein intake b/c of her prior test results, the next round of tests showed her Lysine levels still low at 28, they’re up from 16 from the last tests, but they like to see them in the 45-90 range.

This is good news b/c the Dr.’s prefer to see this level low…when it’s low, it means her tolerance for protein is higher…so we are upping her protein intake again!

All her amino acid levels were great…the only other level that was high was her carnatine level which is what her medicine is…so they are lowering the dosage on that.  It sounded as though since it was high, she’s using all of the medicine and just peeing out any excess.  (??? I’m not a Dr. and I don’t pretend to be one in real life).

While I don’t understand the science behind any of this, what I do know is my baby girl is growing and they are upping her protein.  I love this type of good news…and two test results in a row, with good news, is what mamma likes.

But, leave it to Satan to make you doubt God almost within the same breath b/c as I was giving Rob Reagan’s test results, Rob let me know our insurance cancelled our policy b/c we didn’t make a payment.  Our payments are on auto-pay so how could this happen?  Long story short, it seemed like a billing issue on their end, and even though it cancelled on 4/1 at midnight (just 12 hours prior to our call…nice April fools joke) they were telling us that they would need to re-underwrite us and determine if it was “worth renewing us based on our claims.” Yeah, um, no! We met our deductible within the first week of Reagan being here; I can tell you we would not pass the underwriting process.

I got on my knees to pray…without our insurance, paying for Reagan’s care would be extremely challenging.  Each time blood is sent to the lab, which is every two weeks at our Nemours appt, the cost is $600-$800, but somehow our insurance covers almost all of it…the bills we receive are about $20-$40.  Totally God.  As self-employed folks, Rob and I picked a plan four years ago that we thought would be acceptable and affordable.  It wasn’t the best, it had a high deductible, but if we ended up in the hospital with a crazy problem, we’d be covered.

So, the good news is Rob spoke with someone else at the insurance co. who said it really wasn’t a big deal and they re-instated us right away. Another answered prayer.  I shot a laser beam up to God that day and boy did he deliver.

April 9

Next apt. at Nemours…Reagan is now 8lbs 15oz, she’s gained almost 3lbs since birth and she’s eating ALL of her allotted formula recipe for a 24 hr. period, plus a feeding of her RX formula.  Let me explain…

For a 24 hr. period, Rob and I have a batch of formula that we have to make…it includes a certain gram count of Enfamil and a certain gram count of her RX formula.  If she eats all of it, then she can ONLY have her RX formula as to not give her too much protein.  Rob and I log every single feeding and provide the food log to our dietician at each visit.

We keep track of what Reagan eats and what she discards for every single feeding.
We keep track of what Reagan eats and what she discards for every single feeding.

The dietician has been floored by how much she’s eating due to her size and weight. But Reagan is doing exactly what they want down to a T as far as weight gain.  I love it when her Dr. and dietician have huge smiles on their face b/c they are so happy with Reagan.

“Her tone is great, she’s gaining perfectly.” – Reagan’s geneticist.

“I can’t believe what a thirsty girl she is! She’s eating 24oz which is a lot for her age and size.” – Reagan’s dietician.

Great apt. overall…but the last part to every apt. is to have Reagan’s blood drawn; this is the worst part.

Poor baby...she was not happy about this.
Poor baby. She was not happy about this.

They had to draw blood from both of Reagan’s arms b/c nothing was coming out…they finally got it, but I’m sure the entire hall could hear her cries.  Whenever I used to hear a baby’s cries at the Dr., I’d think, “that poor baby is not too happy.” And watching it is heart wrenching.  Bright red face, cries that empty her lungs and then turn into silent cries until she takes a HUGE breath only to empty it all out again.  It took about ten minutes to draw one vile of blood.

April 12

Results from April 9 are in…her Lysine level is still low, at only 27.  I feel like doing the chicken dance b/c my daughter wants MORE protein!! All her other levels were great too and the carnatine level is coming down due to a decrease in her medicine. 🙂

The in-between time

In between April 2 and today…I’ve received a couple notes from a girl I went to high school with.  I haven’t seen her in probably 10+ years, but we’ve exchanged notes a few times.  I love seeing how God has brought my classmates to him, like he did with me.  People change a lot btw high school and “real life” and God is after EVERYONE, he doesn’t want to leave anyone behind, like the Shepard who goes after the one lost lamb.

On my birthday, she said that God laid it on her heart to ask what I needed prayer for.  I unloaded a lot of stuff…I am praying for God to heal Reagan, to specifically heal her gene b/c only God can do that…but what if that’s not his will?  What if his will is for her to have GA-1 and to deal with it? Am I unfaithful if I ask for healing, but then say, “but if you don’t want to, I understand, can you help us live with it then?”

My friend wisely responded with the truth that you can’t ask God for things and say “I trust you…” while in the same breath basically say you really don’t.  It’s like praying with a half portion of faith.

So then what do I pray?

My friend emailed me this ask God to give you clarity about what His will is, period. His will not for your life or your daughter’s life…but just His will period. You have to trust and believe that God has purpose for all of this…”

Jesus taught us how to pray when he gave us the “Our Father” prayer…”Thy Kingdom come, Thy will be done, on Earth as it is in Heaven.” That’s praying for God’s will, and praying for yours to align with his.

Even still I will pray for a miracle, specifically for God to heal her gene, I pray it with knowledge that he can, b/c I know he is able…and I also pray for his will.  They seem like strange prayers, b/c they could be completely opposite, although, I pray they are one in the same. Jesus did the same thing…he prayed to avoid the crucifixion if possible, but he also prayed for God’s will.

“…My Father, if it be possible, let this cup pass from me; 
nevertheless, not as I will, but as you will.” – Matthew 26:39

God gave him clarity, and made his will known, and Jesus abided and made his will the same as it was in Heaven and he died for all of mankind so that we could be adopted into the Kingdom of God.

I am so proud of Reagan…and I’m proud to be her momma.  I’m also glad that we have a God who walks alongside us in every aspect of our lives, who understands our pain and who wants to be our Rock.  Our God is a God who provides.  This verse is so comforting b/c God has always provided for us, even when we are faithless and doubt him, he is faithful to us…always.

“For this reason I say to you, do not be worried about your life, as to what you will eat or what you will drink; nor for your body, as to what you will put on. Is not life more than food, and the body more than clothing? Look at the birds of the air, that they do not sow, nor reap nor gather into barns, and yet your heavenly Father feeds them. Are you not worth much more than they? And who of you by being worried can add a single hour to his life?” – Matthew 6:25-27

Then, my friend sent me this message a few days later.  I was filled with so much encouragement…

Hi…so while I was spending quiet time with God, I opened my Bible to this verse and God told me to share it with you. “But when Jesus heard this, He answered him, “Do not be afraid any longer; only BELIEVE and she will be made well”- Luke 8:50 xo

I am no stranger to God using people to give me a message in pivotal moments of my life.  In college, a friend of mine came up to me at a retreat and told me that the relationship I was in with a past boyfriend needed to end.  I knew this, and I prayed for God to give me clarity about this specific aspect of my life during that weekend retreat. I remember praying that quick prayer as clear as if I did it yesterday…I prayed it in the parking lot walking up to the gymnasium.  Boy did God show up, not only did a friend of mine tell me that message from God (totally unprompted…and she didn’t know much of my relationship) but I also received two other messages from people I did not know at that retreat saying the same thing.

When God prompts you to say or do something, you know it.  The feeling and the urge is unmistakable…and the messages I received that weekend were clear and left zero room for interpretation.  In a nutshell, I needed to make an about face and start heading full speed toward Jesus…in order to do that, the relationships not glorifying to God needed to go.  I knew this, but each break up conversation was like the George Costanza break-up with Maura. (leave it to me to find a Seinfeld reference in every aspect of my life)

(if you’re reading on your phone, click here for the youtube link)

Eventually it ended and it felt amazing to follow Jesus and make such a life altering, eternally significant decision.

I believed God had something better for my life.  And boy did he, as evidenced by the eleven amazing years that has followed that decision and with the blessing of having Rob in my life, glued to my side.

my favorite.
my favorite.

God always knows what he’s doing. And with Reagan, the messages I’ve been receiving have been pretty clear, not only from my friend, but from my mom. She has been telling me her word from God in regard to Reagan is to “Not worry”. She hears it over and over, “do not worry, do not worry, do not worry.” And so, I try not to worry about Reagan and her diagnosis.  And with each test result and increase in protein prescribed, I wonder…”Is God healing her gene?” So I’m going to ask you all to pray that specific prayer.  Please heal Reagan’s gene…make the Dr.’s baffled.  And please pray for clarity and for God’s will.

A Father’s Thoughts cont.

this is very true for me
this is very true for me

Terrified.  Angry.  Sad.

Never did I think those would be the three feelings I had 4-days into being a parent, but there I was.

You have to understand, I’m just like you.  I live life on the positive side, love to laugh, and see God’s beauty in everything from the obvious sunrise/sunrise to the unapparent processes that sustain life like photosynthesis.

And while I can certainly see God’s beauty in my daughter and her adoption story, her diagnosis is just tough to deal with when I take the time to stop and think about it.

You see, it is difficult for anyone to put themselves in our shoes to understand what we are going through…unless you’ve been there.

Unless you’ve received similar bad news from doctors about your child within their first few days of life, you can’t understand what it’s like.  Unless you’ve prayed similar prayers that your child can hopefully be able to walk, talk, play and have friends, you can’t understand what it’s like.  Unless you’ve had to shop at a medical supply store or contact a laboratory to find and order a certain prescription food for your child, you can’t understand what it’s like.  Unless you’ve had to measure, weigh, plan, and log all meals for your child because they can’t eat what everyone else can, you can’t understand what it’s like. Unless you’ve had “congratulations” change abruptly to “I’m so sorry” shortly after your child has arrived, you can’t understand what it’s like.

You can’t understand what it is like to feel fear, anger, and sadness all at the same time for your new child, unless you’ve been there.  But that’s ok.  I sincerely hope no one ever has to be there.

However, if you ever do find yourself there, you are not alone.

It is vitally important to process through all of your feelings and emotions when dealing with something of this magnitude.

You see, I think we all get too caught up in all of the silver linings in life’s struggles.  While it is a romantic notion to look at the comforting and hopeful aspects of an unhappy situation, I think you only hold yourself back from fully experiencing life…struggles and all.  And if you hold yourself back, you are also holding back a part of you from those in your life.

Holding back from those in your life is simply just trying to a live lie.  I have struggles and hardships in my life, and I know you do too.  If you tell me you don’t or try to make it seem how perfect your life is, you’re lying….not just to me, but to yourself and those in your life.  And lying to yourself is a slippery slope no one wants to go down; it only ends in disaster.

In order to be fully involved in my daughter’s story and at the same time be fully honest with myself and the feelings I am experiencing and to be the best father for her, I have to be transparent with my feelings and not just live in the silver linings of her story.

While those silver linings are nice things to think about, I liken them more to a rock that I’m holding onto so I don’t get swept downstream in this raging river that is my daughter’s life.

You might think that these rocks would be something to keep holding onto in order to be strong for my daughter and wife during these tough times, and I would have agreed with you until I discovered a flaw in that line of thinking.  If I continue to hold onto these rocks, I’ll never know what is downstream.  I’ll never know where this raging river leads.  I’ll never fully experience my daughter’s beautiful story.

Also, I’m no river expert, but when you have a bunch of rocks in the middle of a raging river, that usually creates rapids.  So I am allowing the river’s current to take me wherever it leads. It’s important for me to write out all of my feelings, not just the silver linings.

choosing to go into her unknown
choosing to go into her unknown

Life isn’t best lived by staying in the rapids.  So I’m choosing to go downstream into the unknown.

It’s My Birthday!!

I’ve always been a big birthday person.  To me, birthdays are seriously special days.  They say, I made it through the year; I’m entering into a new year of my life…people should celebrate me, love me, cherish me and dote on me all day.  This is MY day!!

My whole life I can’t remember a bad birthday, it’s b/c I love them so much, I think that the people around me can’t help but get excited.  One year when I was little, my mom made a life-size drawing of me so that all my little five-year-old friends could play “pin the nose on Anne-Marie.” When I was 10 my parents set up a volleyball net in our front yard and we also had three-legged relays.  I know there were a few Disney birthday weeks.  One year, my parents took a friend and me to a cheerleading competition in Daytona Beach, b/c that’s what I wanted to do.

Your birthday is YOUR day.  You do what you want…this is my birthday motto.

Last night though, I had a revelation…well, it wasn’t like I hadn’t noticed this before…but I told Rob that having a child makes nothing about us, it makes things about her, especially during the newborn stage.  What would happen to MY day?  MY birthday? Would it ever be the same?

Typically, the countdown to THE DAY starts about a week before the day arrives.  I tell Rob what I want during the month of March, usually a few weeks beforehand.  The past few years my birthday wishes have consisted of a mini-shopping spree at Anthropologie.

My heart beats a little faster when I see an Anthro storefront.
My heart beats a little faster when I see an Anthro storefront.

It’s my favorite store ever…and during my birthday month I get 15% off.  My entire family knows, this is what I want…I only want to go shopping and I want to descend on the mother ship and spend money on amazing clothes. Shallow? I don’t know, but I do know it makes me happy to have brand new clothes to cut the tags off of.

one of my lovely anthro tops. it's like liquid sunshine.
one of my lovely anthro tops. it’s like liquid sunshine.

When I was younger, my mom and I would go shopping for my birthday and when I’d get home, I’d have a fashion show for my dad to see what all the days expenditures looked like.

me and my dad...another favorite anthro top and necklace. my dad was happy to pass that tradition to Rob, I'm sure of it. :)
me and my dad…another favorite anthro top and necklace. my dad was happy to pass that tradition to Rob, I’m sure of it. 🙂

But this year, we have a baby…I can’t take her with me.  She’s too little and with her condition it’s too big of a risk.  Plus, the only crying I want in Anthropologie is me crying b/c something is either too tight, they don’t have my size or is too expensive and I have to go out of the dressing room to find another option.

Like normal, I told Rob about my standing birthday wish.  He said, “I thought you might want to get a massage instead.” Most women would be ecstatic.  My first thought was, “Oh no…is my awesome wardrobe going to dwindle? Will I trade fashionable outfits in for a back that feels like it’s fully functioning and not like it’s been beat with a police baton?” Is this the first step to “mom jeans”?

How do you know if you're on a path to mom jeans? You can't chance it...the Anthro birthday tradition must continue!
How do you know if you’re on a path to mom jeans? You can’t chance it…the Anthro birthday tradition must continue!

Rob had a point.  My back was killing me, I’d done a lot of tossing and turning and reaching into the bassinet from weird angles to shove a pacifier into Reagan’s mouth.  It’s not that I didn’t want a massage…I could certainly use one.  But in my mind, motherhood for me always included looking awesome with the latest cool clothes from my favorite store.  And sure, I purchase items throughout the year, but April…April is my month.  It’s my shopping spree.

I can understand at this point you might be thinking “what a snob Anne-Marie is…” and if it were any other month, I might agree with you.

There was really only one thing to do.  Let Rob know that I’d love to have a massage, as well as a toned down mini-mini shopping spree at Anthropologie, give him a huge smile and pepper in some funny jokes so that he says OK.  I asked Rob what he thought of me wanting both things for my birthday…

“Do you think I’m greedy?”

“No…greedy isn’t the word”

He said, “I think you’re a princess, and I think I’m in trouble when Reagan learns from you.”

Annnnd…the tradition continues.  Happy birthday to me.  And thank you to my most amazing husband for loving me.