The opportunity to be born

This blog is a risk. It’s not something I normally blog about. I could get hateful comments, I could get people unfriending and unfollowing me. But I’m not here to please everyone.

The other day I became aware of the twitter hashtag #shoutyourabortion and it’s like the twitterverse is on fire. I normally don’t go on to Twitter, but I wanted to see what the fuss was all about and quite frankly, the hashtag makes me want to learn what these people have to say.

The two women who started it did so to let other women know they don’t have to feel shame in their abortion, and they want to break that silence and the stigma because not all women feel shame for having an abortion, and you don’t have to feel shame either, if you’ve had an abortion. Abortion is legal in this country, it’s a law that women have the right to access, I’m not here to argue that.

And I’m not here to shame you as a person for having an abortion, if you’ve had one. But my point of view is different. The unfortunate thing is when we have differing opinions on such a divisive topic, we can get nasty. I feel that’s why a lot of Christians might remain silent because they don’t want to be lumped in with the others who are shouting hate at people. Search #shoutyourabortion on Twitter and you can see how people talk to one another… you’re ignorant, go educate yourself, I’m right, you’re wrong. Just another religious nutcase, etc.

How can I be supportive to a woman who’s in a situation where she feels abortion is her best option AND also be supportive to the life that is inside of her? Do those who are in the for abortion category want people like me, who are not for it, to agree with you, even if it goes against every fiber of my being? I’ve never been in that circumstance, but if I feel strongly about something, are you asking me to remain silent? Just as the #shoutyourabortion crowd are not silent, why do I need to be silent because I feel we are #madeforlife?

If my daughter is going to harm herself by pulling on the stove handle, or by walking into the street, am I going to sit idly by and allow it to happen because she feels like this is what she wants to do? No, I want to say something, I want to protect her, I want to tell her there’s another way.

In the case of abortion, I firmly believe, there’s a human life inside of you with its own DNA, with functioning organs that are developing and that there’s a heartbeat inside of that tiny baby. I don’t just believe that, there’s overwhelming evidence that it’s true. Not only that, but through the advancement of sonograms we can see babies smiling, sucking their thumbs, and we also know that they feel pain because they recoil when a needle for a test is put into them. Another body, is inside of your body. There are two bodies here, the woman’s and the tiny, living, heart beating, brain receiving information body inside of the woman’s body. That tiny body is a person BECAUSE of all these things…it has DNA it has a fingerprint. That person will have dreams and a personality, if given the opportunity. Just please process that information and don’t allow it to wash over you like it’s not true.

The disheartening thing from reading the posts with the hashtags, for me, is that so many of the women seem to convey that the reason for their abortions was because having a baby was inconvenient. A lot of things are inconvenient, like making a return at the mall the day after Christmas. And children are a lot of work, but is inconvenience to what you want in life a reason to choose abortion? I’m sure as a child I wasn’t always convenient or fun, but life is not always about what’s convenient. Sometimes we have to do hard things in life. Having a baby you didn’t plan on is a hard choice. Abortion is a hard choice and so is adoption. Adoption is an alternative to not wanting to parent and I wish that more women would consider alternatives to abortion, like adoption.

When Rob and I adopted our daughter Reagan, she forever changed our life. Those who know our story, know that on day four of her life, our daughter was diagnosed with a rare genetic, metabolic disorder. This test is done on newborn screening, after birth, and it’s a fairly new test. It’s become standard just within the last 10 years here in Florida and I’m not sure if all 50 states have these as standard tests. At age 13 months our daughter would suffer a traumatic brain injury, due to her genetic metabolic condition; she lost all her skills, gained a g-tube and we’ve been working hard to help her regain her milestones and skills back ever since April 2014.

But when I look at her, I am so grateful that her birthmom chose adoption. In the midst of a very difficult life circumstance, Reagan’s birthmom chose to give Reagan a chance.

Reagan’s life and story has impacted thousands of people. Her life has challenged Dr.’s because every single thing she is able to do, she should not be able to do. Her brain was so severely damaged that she should not be able to walk, or move much at all. Her life matters. Everyone’s life matters.Balloons

Some people might choose abortion due to a potential disability. If presented with Reagan’s genetic disorder prior to birth, I can bet a lot of people might select abortion. The information on Glutaric Acidemia Type 1 is insanely scary when you look online. But then I look at my child’s eyes; she is not her disorder. She has a feisty personality, she is defying all odds given to us by the doctors in the hospital. She’s walking more, falling less and trying to talk, eat and drink more. Reagan goes to a regular preschool and is a pretty popular classmate because she likes to give everyone hugs. There’s no way I can know the full impact of her little life but I can guarantee you that anyone who has watched her life story unfold has never witnessed more determination or adversity defying by another person, let alone a two and a half year old. We can’t shield ourselves from pain all our life…pain will come, adversity will come, this is life here on earth.

The only way we know greatness, or great people, is because they were given the opportunity to become great. They were given the opportunity to be born.

Converse heel stretch

The reason we choose one decision over another is because we want to control our life’s outcome and we want it to be the very best. But we can’t control better outcomes. You’ll never know how that unborn life could have impacted you, your loved ones, or the world. You’ll never know how you could have grown as a person through a situation you didn’t think you could handle or didn’t want. You’ll never know how you could have become your very best self by overcoming adversity or seemingly impossible odds, you’ll never know.

If you’ve had an abortion, please hear me…I am not here to judge you or condemn you. And I don’t think you’re a terrible person. The purpose in me writing this, is to offer another viewpoint to a woman who might be considering abortion.

Through Reagan’s life and the difficulty we have gone through with her, one thing I have learned is that your current life situation is not going to last forever. We have mountains and we have valleys. Maybe you’re a woman who’s in a valley right now. You aren’t ready to be a mom, you are financially having a hard time, you have no family or friend support. Or maybe you’re on top of a mountain, and you feel having a child would fling you into a valley. I want to encourage you to make an adoption plan. There are SO many families who, like us, have never been able to conceive, ever. There are people who want to be a mom and a dad but haven’t been blessed in that way. You could bless them with the child you’re not ready to parent. Your life might be tough through the nine months of carrying that pregnancy to term, but you can give the gift of the life inside of your body to a family who will love and take care of that child forever. If you are considering abortion, would you please consider adoption?

Maybe you’re afraid that during those nine months you will feel the baby kick, you’ll start to feel emotions and love. You might catch yourself making dreams for that child and for you, you’ll see them smile on a sonogram and your heart will melt…you might start feeling like, you can do this mom thing to the child growing inside of you. Or maybe you don’t want to go through those feelings and you prefer to just end it with abortion. Can I ask you something? Is it possible to do something even though you don’t want to? Is it possible you could carry a child for nine months, for a family who would give anything to have a child? The #shoutyourabortion movement is really loud, like a clanging gong. But I pray you can listen to the soft voice that is inside of you, the voice who says “I created your inmost being,” and allow what is being knit together the chance to live.  What is being knit together inside of you is #madeforlife.

Psalm 139:13-18

For you created my inmost being;
    you knit me together in my mother’s womb.
I praise you because I am fearfully and wonderfully made;
    your works are wonderful,
    I know that full well.
My frame was not hidden from you
    when I was made in the secret place,
    when I was woven together in the depths of the earth.
Your eyes saw my unformed body;
    all the days ordained for me were written in your book
    before one of them came to be.
How precious to me are your thoughts, God!
    How vast is the sum of them!
Were I to count them,
    they would outnumber the grains of sand—

 

Let’s sleep together

What I mean by that title is…as a family, let’s all go to bed at 8:30 p.m. and…SLEEP!

Tuesday Reagan had her Nemours appt. and b/c she’s doing well eating (she has about 150g of food/day) and b/c she’s growing like a weed, and b/c she’s been able to tolerate seven oz. of formula via G-tube at most of her feedings, we requested to increase her food allotment and lower her formula volume by two oz. so we could try to fit all 28 oz. of formula in during the day and eliminate her feeding at night.

Well HALLELUJAH our team at Nemours agreed. They have been so pleased with her progress and so have we. It has been a loooooong road these past eight months. It has been the deepest valley I have ever known in life and I’m pretty sure I can say the same for Rob. So getting the news that we can go to bed at whatever time we want and sleep…is like the best Christmas present ever.

So, on Tuesday night, when I rocked Reagan for what is hopefully the last time while she’s feeding at 10:30 p.m. I got a little sad. Aside from being beyond exhausted for these past eight months and running on fumes I have loved rocking her. She’s still, she’s peaceful, and we fall asleep together rocking. She smells so good. She is so beautiful. I have brushed her hair, rubbed her feet, kissed her forehead and soothed her cries. [Full disclosure: I’ve also been thrown up on].

Our bond was strengthened during those night feedings. I needed them to reconnect, to learn about Reagan again. For the first few months Rob read all the Psalms and all the gospels. And as I type this I am actually getting tears in my eyes b/c those were some of the most special moments as a family. They were quiet, they were deep, it was just us (and Bauer tapping his paws in and out of Reagan’s room).

This last night, Reagan held on to my finger, just like she did when we met for the first time. She rarely does this.

2013-02-19 11.43.41

As she held my finger, I felt her heart beating. I will always remember that. The last week and a half, Reagan’s been sleeping through the night in her crib. She used to wake up about 20-30 minutes before her night feeding so I’d end up rocking her for almost an hour as it would take time for her to calm down and for Rob to get her formula ready. Her feeding would take 20-30 minutes depending on how much she needed to finish out her allotment for the day. Adding to our exhaustion these past few months, Reagan would wake up at 2 or 3 a.m. and cry for an hour and then be up at 5 or 6 a.m., coupled with just a 40 minute nap during the day. But this past week, she’s just been sleeping. It’s like she was letting us know, I’m ready to sleep again. I’m ready to keep growing and becoming a big girl.

I am so proud of her. I am proud of Rob and I. I am so thankful that God has helped us through these last eight months. There is no way we would have made it out alive and still loving each other without God. #prayerworks

In America…

Today Rob took Reagan to therapy and I was able to get a glorious nap, which helped to make up for my 5 a.m. wake up call. While in the waiting room, he spoke to a little boy’s grandmother about the little boy who was there for therapy.

The grandmother told Rob that he was five and was adopted just a year prior at four years of age. When he was born, he was only one pound. One. Pound. He was not expected to live and spent an entire year in the NICU. His parents did not want him. So after being in the NICU for a year, he was transferred to a state run children’s home. The home wasn’t a facility, but more like a single family home. He was tube fed the entire time he was there, so for four years, he had never had food in his mouth. And the children’s home never let him walk either. So at four…he could not walk, never had food…and the care takers at the children’s home also thought he couldn’t learn anything. Turns out, he just couldn’t see very well…glasses fixed that.

When the parents adopted him he walked within two months. He was running in the waiting room today. He also eats food…started out with baby food and is currently still on purees while they are trying solid foods. He still can’t swallow liquids, so he gets all his liquid through the G-tube. As far as learning…once he had glasses, he could understand more clearly what was going on. Rob said he may have had a breathing tube at one time…he had a little trouble talking, and that was probably one of the therapies he was going to.

The grandmother said, taking care of him is so hard, but worth it. Everyone is amazed at what he is doing. And to think, he was just left in a crib…no one took the time to help him walk, figure out if he needed glasses, or tried to feed him actual food. No one took the time. No one took an interest. No one showed him love. He just laid there, like in a third world orphanage…except it’s in America…and somewhere in Florida. Apparently in America, we don’t want orphanages to be seen, I couldn’t even tell you where the nearest American orphanage is. B/c this is America and if we can just block that reality from our minds, then it’s not happening, right? Not letting a child walk? Not letting them try food? What a travesty.

Blueberries
blueberries baby!

Reagan could have been that baby. Reagan could have been forgotten, unloved and passed over. I think about that all the time. I don’t mention a lot about Reagan’s birth mother, b/c that story is for Reagan to know and it will be her decision what she wants share with others. But her birth mother knew she could not care for Reagan and she made a very  brave choice to place her with a family who she hoped and prayed would care for her and provide her with anything she might need.

June 8th marked two months since Reagan’s crisis and yesterday during her nap she was in a full straddle face down. Rob and I watched the monitor wondering, “what the heck is she doing?” She started moving her arms, and her hands and got them in position to push up and sit…she did it twice. It was HUGE. She sat for a few seconds and then spilled over, but she is re-learning. When she sits, she wobbles, but catches herself when she falls forward, catches herself a little bit when going to the side…and when she falls back on to us, she tries to pull herself back up, and often does so successfully.

She is getting her skills back. And that’s b/c you are praying…we are all praying to Jehova Rapha, which means the Lord who heals you.

…I am the Lord who heals you. – EXODUS 15:26 

 

Life’s Blimp View

The other day I decided to look at Reagan’s adoption video…with her birthday coming up, I think I was getting sentimental about the day she was born and wanted to relive those first few moments. I was shocked that in just a year, almost 20,000 people have viewed it.

Before the adoption video, I did the infertility video…and in two years, almost 12,000 people have viewed that. I have no idea what made me start sharing things so personal in my life.  It’s not for the “view count” I really think I just needed a way to express how I was feeling, the videos are an outpouring of my heart and from tears shed to show that life is hard…there’s real struggles people face and I know I’m not the only one. You can feel alone in infertility…you can feel alone when dealing with something that most people don’t have to. One way to not feel alone, is to talk about it, the videos for me helped to open conversations not just for me, but for others who are dealing with tough stuff.

If I were to look back at that first infertility video…and how I made it one afternoon just sitting in a puddle of my own tears, wondering when my time was supposed to come, there’s no way that back then I could even fathom making a video for my one year old to celebrate her first year.

What has unfolded in our lives, has always been the plan God had in store, but I didn’t know…and how could I? God is the only one who has the blimp view of life and can see the beginning, the middle and the end of the parade. And he knew, that we needed to go through painful years of infertility to have what it takes to care for Reagan. And if I watch all three videos in a row, I get that blimp view except I’m looking back at the start of parade vs. God who can also look forward. And looking back I can say God is good. But not only that…I need to have faith that says, “look forward and know that God is good.”

As I look back on this past year, I am looking back with huge smiles and tears of joy, truth be told, I was scared to death for what the year would hold. I was holding my breath and on the edge of my seat. I feel like this video for Reagan’s first year is a sigh of relief. And I hope we go through many years with her where we can look back with a big smile, such pride and unbelief at how amazing she is. This is her story…we’re just watching it unfold.

What a Year

As Reagan’s first birthday approaches, I have so much to reflect on over this past year. Looking back, I don’t know how we did it. She has never been sick, even though I was sick for about a month, and Rob somehow had a fever for a brief moment. We’ve figured out her food, even on days that she doesn’t want to eat b/c of her teeth wanting to break free, we’ve adapted the menu to make sure she gets what she’s supposed to.

Truth be told…there’s been a lot of tears (like A LOT of tears) in between the victories. Now I know why God says don’t worry about tomorrow, b/c today has enough. That statement has never felt more true to me than during this past year being a mom to Reagan. I worry constantly about her.

Every morning when I wake her up…I feel her forehead and cheeks as I kiss her to see if she feels warm and might have a fever. Every morning.  She doesn’t know I’m checking that…she thinks I’m lovin’ on her as she flies out of her crib in my arms.

Every time she doesn’t drink her bottle or eat her food, I worry about how much the deficiency will affect her diet that day. She doesn’t understand why I make her laugh before I give her a huge heaping bite of food, I do it b/c I have to get it in and a laughing mouth is just easier…she probably just thinks I’m funny.

As I reflect on the day she was born, and then her diagnosis a few days later, I remember the polar opposite flood of emotions. I can remember both the beautiful and the ugly so vividly.

And then the reality of the unknown and all the uncertainty that life brings seemed to have parked itself right in the middle of my house and it lay heavy on my heart.

Worry seemed to be my drumbeat. And I didn’t like it. It’s still beating even now…a slow, steady beat of worry inside of me.

Is that b/c I’m a parent? Aside from all the details of what and why I’m worrying, is this just parenthood?

A year ago, I had no idea what to expect. Now, I watch in awe as Reagan continues to thrive. She’s an amazing sleeper, and at 11 ½ months, we’ve finally been given the all clear to let her sleep 12 hours uninterrupted, without feeding her. She’s walking along surfaces and holds her hand out for our support as she rushes into us to give us a hug.  She blabs…blab la bla. She laughs with so much heart!! And she claps and jumps on her bed and in the bath; she’s a total handful.

Reagan has enriched our lives so much since joining our family. And on days when the tears won’t stop (hers or mine) or the naps that won’t take or the fussing never ends, I know…I KNOW, that God put her in our lives for a reason. There are days that are hard, but every day God has new mercies, thank goodness for that. Thank goodness that today’s trouble is gone when I go to sleep and that a new day is coming. And the days are good.

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

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.

A Father’s Thoughts

It was the kind of news that is etched into your memory forever. Like watching your child being born, except the complete opposite of emotions.  Perhaps it is more like remembering where you were and what you were doing when the attacks on 9/11 happened.  Because that’s what it felt like, and that’s what it was, an attack.

An attack on our 4-day old daughter’s health and future.  An attack on my wife and I and the joy we had waited four long years to be a part of.

And there was nothing I could do…

It was a normal sunny Saturday afternoon to the rest of the world. But for us, this was our first Saturday with our new daughter.  And this was her first Saturday, ever.

There had been a lot of firsts for me that amazing week.  First time watching a childbirth; first time cutting an umbilical cord; first time laying my eyes on my new daughter; first time changing a diaper; first time feeding a baby…first time after first time, but mainly, our first child had arrived as promised for our adoption.

Promised not only by the birthmother that had selected Anne-Marie and I from hundreds of other prospective parents, but a child that had been promised by God.  The path to this promise wasn’t exactly how Anne-Marie and I had pictured years ago when we first started dreaming of starting a family, but it was exactly how God had planned it all along.

Finding that path wasn’t easy. Following that path wasn’t easy. But for some reason, I thought that path would eventually begin to ease. I couldn’t have been more wrong.

That Saturday afternoon, my wife received a text from our daughter’s birthmother.  The message was vague, but said enough to make the both of us start to worry.

“Doctor called about baby…worried about some test results…his #…please call me”

Questions immediately began to swirl in my mind, and I’m certain my wife’s. What doctor? Why did they call her? What tests were we waiting for results on? What could be wrong from those tests? Why would we call you (the birthmother) when we have the doctor’s number?

Anne-Marie immediately dialed the doctor’s phone number as she walked into another room as I stayed to watch our daughter meet her grandmother for the first time. There was so much joy in the room that I stayed behind in, but I could tell that the joy was being sucked out of the room my wife had gone into as she spoke with the doctor and his nurses.

Why did I stay behind?  I need to be with my wife. She needs me to be there by her side. My daughter needs me to be there by my wife’s side and not next to her, even if Reagan doesn’t know it yet.

I left the calmness and joy of my daughter, and began to walk into the next room.  There was heaviness in the air as I walked closer to my wife as she furiously took notes on whatever the person she was speaking to was saying.  She glanced at me as I was trying to read the notes she was taking. The glance said it all, something wasn’t right. Something wasn’t right with our daughter.

A cry from our daughter came from the other room, and I looked back. Everything was ok there, but it wasn’t where I stood. I began to wonder, what could be wrong? How serious is this? She had just been tested the previous day for a heart murmur that had been cleared. Her EKG and echocardiogram both showed everything was ok. What more could there be?

Never ask that question.  Whether it’s good or bad, there can always be more.

When her conversation finished and Anne-Marie had hung up the phone, she began to explain to me what the doctors had told her.  She did a great job trying to relay the information she had just been told back to me, but I couldn’t understand what she was saying. It wasn’t because she was speaking unclearly or hadn’t taken good enough notes, but to me what she was saying all sounded like a foreign language.

The news was that my new 4-day old perfect daughter had been diagnosed with a rare genetic disorder called Glutaric Acidemia Type 1.  After Anne-Marie explained the basics of the science behind the disorder, she then began to speak about the risks and possible outcomes.

I was…

Terrified.  Easily the most frightened I had been up unto that point in life.

Angry.  How could this happen?  To us?  To her?  After all my wife and I had been through up unto this point, why? Why, why, WHY?

Sad.

I still am.

I’m actually still all three.

Lean not on your own understanding

After putting our adoption story out there for the world, as well as our daughter’s diagnosis of GA-1, we received tons of emails, texts and phone calls.  The outpouring of love was amazing and Rob and I were truly touched by it all.

So many people had those initial feelings that Rob and I did of, “this is not fair” and “why is this happening to you guys after all you’ve been through?” Rob and I put the video and blog out when we were ready…I told him, “we’re going to end up consoling people b/c they are going to have the same feelings we had initially…” b/c it’s a shock. However, there were more sentiments of “you guys are so faithful…what a testimony, God is using you, we are blessed to call you friends, we can’t wait to see Reagan’s story unfold.”

I definitely feel like God is using us…I don’t know quite in what way (lean not on your own understanding), but I get that he’s handpicked Reagan and us for something special. Rob and I were talking, and we agreed that it’s weird for people to call us faithful.  Many times in the past few weeks, we’ve felt totally faithless.

For instance, sometimes I want Reagan to be two years old…b/c if you can get through the first two years without any major health scares with this disorder, it’s a huge hurdle overcome, reason being is that in the first two years, there’s so much development happening cognitively as well as physically, emotionally, and socially.

And then I want Reagan to be five or six and starting school.  B/c once you’re that age, you will have a better idea what, if any effects, the disorder will or has had.  By school age, the culmination of her social and motor skills, and all skills needed to attend school will be present.  We’ll be able to see our deck of cards more clearly.

I’ve also caught myself looking online at stories from families who have a child with this disorder and it makes me so upset.  While most children can fight an ear infection, cold, virus or fever on their own…they can spell disaster for Reagan.  The reason we have to be vigilant at the first sign of sickness is b/c when you get sick, your body starts to break down proteins…well, she can’t break them down like everyone else and instead, acid will begin to build up and it can attack the brain.  Everyone’s story is different and Rob reminds me that the stories I read online are not our story…we only have Reagan’s story and it’s still unfolding.

But what is her story? What is the outcome? I want to know.

The video I made was done with the purpose to tell the beginning of her story, but it’s also to remind me of those verses, it’s just as helpful for me to watch it…it’s like my very own pep talk to myself.

Even though I want a full disclosure from God and I want it now, I’m not going to get it.  I can’t control everything…a life lesson I am learning at every corner.  Only God is in control of her story, and I pray that her story is a beacon of light.

A little secret I’ll share with you…during the first two weeks Reagan was home, when we kept this diagnosis close to the vest, several things happened. Our photographer posted online about a local family in Central Florida who went in for a 36-week ultrasound, and the heartbeat was gone.  I couldn’t even imagine.  The day we arrived at the hospital for Reagan’s birth, I had so much anticipation for the monitors to be hooked up to our birthmom.  I’d never heard Reagan’s heartbeat, until the day she was born.  It was such a HUGE relief, and an even bigger relief when she cried.  She was carried nine months in the womb of a stranger whose world God selected to collide with ours.

Not only did I read this woman’s blog of her infant loss, I’d heard of another woman that gave birth at a local hospital whose baby never took a breath.  Heartbreaking, again.

But, there’s a third story; from a friend of mine I went to college with. She entered my life for only a season and made a HUGE impact on my life back in 2001.  She is one of the few people that God used to totally change the trajectory of my life. I can think of a handful of people that God placed around me in college to pull me close to him and draw me away from the life I was living.

My friend was nine months pregnant and I remember looking at her FB page and seeing all the encouraging posts, “we can’t wait until she gets here!” and “you’re doing great!”…

A few days go by, and I go back to check her page out and it is filled with condolences; she lost the baby.  She gave birth at home to a 10 lb baby, but the baby wasn’t breathing.  My friend had also lost a lot of blood and both mom and baby were rushed to the hospital.  The baby never made it.

How could this happen three times in the course of two weeks and I hear about each of these stories?  In those first raw moments of digesting Reagan’s diagnosis and going through emotions I never thought existed, I would see these stories on social media (among other stories of suffering from people I don’t know that would, seemingly randomly, appear on my wall).  Seeing other people’s suffering and comparing it to mine, I felt like our deck of cards was not so bad.

But why did I need to compare our deck to someone else’s?

What I began to realize in those first two weeks is that we all have suffering…that’s part of the deal when you’re on this side of Heaven.  We live in an imperfect world.  Instead of worrying about “what are people going to think” I just started to lean on God…not on my own understanding.  What else can you do when you can’t understand the plan?  It’s not my plan, it’s God’s plan, and I’m just walking along.

I know that might be construed as faithfulness, but like I said, there were times I just wanted to fast forward to the future, or hit the rewind button b/c I felt like we were living a nightmare. When I look online at other stories from children with GA-1, those nightmare feelings re-surface…I have fear, so much fear for the future.  And then I remember that FEAR is a LIAR.

Isaiah 41:13 “For I am the Lord your God, who upholds your right hand, Who says to you, ‘Do not fear, I will help you.’
Isaiah 41:13
“For I am the Lord your God, who upholds your right hand, Who says to you, ‘Do not fear, I will help you.’

Instead of giving in to the fear, Rob and I make conscious decisions to enjoy what God has given and blessed us with, right now. Even though I want glimpses of the future, I want to enjoy and savor this stage.  It’s a dichotomy.  She’s the cutest teeniest tiny baby…and I know this stage goes by so fast and everyone says to savor it, so we are.  We love those big eyes looking right up at ours when we feed her and change her…and we love watching her sleep…and in the light of day, we even love the midnight feedings, or 3 a.m., 4 a.m. and 5 a.m. (aren’t you full yet?) feedings.

We both try not to think about the disorder and I feel like we’re getting into our groove as parents.  I say that as if we’re pros…we’re just a month in.

Rob and I truly appreciate your prayers, texts, calls, FB messages, etc.  We are taking things one day at a time…one test result to the next and trying to rely on God for each moment.

*Praise Report – Reagan’s first test results came back after being on the diet and her Lysine levels were low.  This is good, they prefer them to be low vs. high…but b/c they are low, the dietician is upping her protein intake.  It’s way too early to say, but maybe Reagan will be more tolerant of proteins as she gets older.  In addition, ALL of her amino acid levels were perfect!