The Heart (and the surgery)

I can’t believe summer 2019 is coming to a close. What a wild adventure our family has gone on; our hearts have been stretched, broken and uplifted. We’ve stepped outside of our comfort zones, seen new things and watched as Reagan’s grit and personality continues to unfold with every new word she’s able to say.

Going to DC was feral and hard, but Wyoming was redemptive. It wasn’t perfect, it wasn’t everything I hoped it would be and imagined in my mind, but it was amazing. My personal goal for the second half of 2019 is to bond more with Reagan and to deepen our relationship. That’s why DC hurt so bad, there were literal slaps in the face. But I had to push through. As a family, we HAD to keep climbing.

And then we made it to the mountains of Wyoming and I think they are the prettiest mountains I’ve ever seen.

Wyoming photos by Peter Lobozzo

I’m so glad we did these photos. Ever since Reagan was a baby, we’ve had photos taken regularly, and it started when I purchased a year photo package from our lovely friend and photographer Kristen Weaver.

Right after our last photo session (below) everything changed.

Pictures would be different. Life would be different.

Photo by Ashley Blahnik of Dearly Photography

But pictures would be the only thing to help us remember the seasons we were in, the feelings we felt and the things God was doing in our hearts in those moments. And this last photo above, is about six weeks after Reagan’s crisis…her grit never changed.

Photo by Katie Williams

Now I’m obsessed with doing pictures when we go cool places or when big things happen. And who could ever forget the Canada photos when Reagan lost a tooth in the forest?

Whether we were in a valley or climbing a mountain, whether we felt storm clouds or sun rays on our face, the pictures capture the season and remind me of what our family was facing in those moments.

The Wyoming pictures will remind me of how a few weeks before we had some of the toughest weeks with Reagan and a really awful family vacation. It will remind me that we pushed through and got on another plane filled with hope for a better vacation, which we had. And it will remind me that just two short weeks after getting back, Reagan would be having heart surgery.

Yes. On August 8, 2019, Reagan will have heart surgery to repair her Atrial Septal Defect. We’ve always known she’s had this, ever since she was two days old. But if you know our story, you realize that sometimes there are bigger things to overcome than heart surgery, which is kind of crazy. Reagan’s heart surgery has taken a back seat for many years in the hopes that the hole in her heart would close on its own, it did not.

I am scared.

My heart hurts.
Look at this girl.
She’s come so so so so far.
She’s independent.
It is amazing.
It is hard.

Rob calls this her “Sound of Music” photo

Rob and I have allowed our hearts to have emotional and spiritual surgery as God has taught us new things, opened our eyes, minds and hearts to how he views us, how he views her, how he views his children, the world.

Even though I’m scared, God is with me. He’s with our family. One of the most memorized Psalms, Psalm 23, talks about how even when we walk through the valley of the shadow of death, we don’t have to fear any evil, because God is there with us. When things are scary, God will camp with you right there, he’ll prepare a table and sit down with you, while your enemies watch. Life includes shadow of death times, and we’ve had our fair share.

So after fighting infertility, pursing adoption, receiving a genetic disorder diagnosis, going through a metabolic crisis and seizures, being given a rare movement disorder diagnosis, placing a feeding tube, and the myriad of issues that come with all that, combined with my own brain surgery two years ago, we are diving into heart surgery this Thursday and Rob and I really do covet all of your prayers.

Isn’t this life so crazy? Like no one says, “I’d like to say yes to all of those things above.” But God…he just knows what he’s doing. If our family can go through all of that, and still say YES to God, YES to Jesus, and put our faith and trust in His hands, you can do that too. I can trust God with my present and my future and I can trust whether I’m eating in the presence of my enemies or my friends, he’s got me.

I whole heartedly believe Romans 8:28, “And we know that in all things God works for the good of those who love him, who have been called according to his purpose.”

We will always walk forward. Our family motto is: Never Backwards. Always Forward. Always. We will always be standing alongside Reagan as her story unfolds, just as I know so many of you stand with our family as we share this unbelievable journey. Thank you for that. Please pray for Reagan’s heart, her surgical team and our hearts too. Watching this sort of stuff go down with your child is one of the hardest things a parent can do. Thank you for your prayers.


Jackson Hole, WY

If you haven’t read our last vacation re-cap, you can read it by clicking here. That was only three weeks ago, and I’m thinking it was our worst family vacation to date, but here we are facing all our fears again, and traveling even farther with Reagan. It’s amazing we were able to muster up excitement for another trip after our last one.

This time we brought Lauren, our first nanny, who has loved on our family for the last three years and traveled with us to California two years ago to see my family. Lauren is now a speech therapist and has amazing patience, and is loving and firm with Reagan. With her on this trip, surely Reagan will be a complete angel.

Unfortunately that theory was disproven on the plane, before we even left the ground.

I know many of you who read this blog know me well; but even if you don’t know me well, I think you probably know that I don’t hold back. This is especially true in confined airplanes when my child is acting up and I am on the receiving end of dirty looks, nods of disapproval and long stares. So when the woman in first class sitting caddy-corner to me gave a minimum of seven lengthy stares and head shakes at me, I said, “DO YOU HAVE A QUESTION?” I said it with the flight attendant standing in between us, who has obviously dealt with lots of different people, families, kids, disabilities, etc. She was un-phased. I said it loud enough for the rows in front and behind us to hear and staring someone in the eyeballs makes them uncomfortable, not me.

I was so upset. I have a screaming child, who’s pulling hair, trying to bite and I have to discipline her in a 3’ aisle with 150 people listening, watching and this lady, openly judging. We are doing our best, I promise you we are doing our best. I can’t always control my child because she’s her own human being, with her own feelings and emotions and personality. Did you know her name (Reagan Elle) means little king? And she really embodies that meaning, don’t you think?

For the duration of the flight, I had Bloody Mary’s, and had one too many. Our plane was an hour late to take off, they were screwing things on and off right by our row, and adding extra gas that they forgot was needed. Our connection was only 45 minutes to begin with, so we had all resigned ourselves to the fact that we’d miss our flight, we’d rent a car in Salt Lake and drive five hours to Jackson Hole. Rob even received an update from Delta that they re-booked us while we were in the air to a flight the next day at 11 a.m.

So many things out of our control. I had my mom and a few friends praying we would make our connection. In the air though, I thought it was an impossibility. I didn’t even pray it would happen.

But…when we landed at 8:01 p.m., and the flight attendant opened the doors at 8:07 p.m. and our flight was boarding one terminal over, we made a last minute decision that I would run and try to hold the plane. I never regretted that extra Bloody Mary (or two) more than in that moment.

As I ran off the plane I was asking the gate attendant who was running in front of me if she could help. She said yes and hopped in front of her computer, I told her, “We’re on flight 965, can you hold it?”

She said: “I can’t hold it. It’s boarding now; your best bet is to run.”

As I started running, I heard on the overhead speakers: “Final boarding for Delta flight 965. All passengers please proceed to gate F-3 now.”

I ran. I had so many bags. I had so much tomato juice and vodka in me. I don’t work out. And every time I had to walk, I felt like I was failing my family. I have to make it. Failure is NOT an option. I kept repeating to myself, ”You have to make it! YOU HAVE TO MAKE IT!

I saw the gate and I breathlessly and pathetically asked: “Did I make it? Can we get on this plane? I have to get on this plane and my child has special needs and I will die if we can’t get on this plane.”

The gate behind where you walk onto the gangway was closed. But was the plane door closed? It was not. A guy called from across the terminal, “Are you flying to Jackson Hole?”


And when I looked up, Lauren was running with all the rolling suitcases behind her. And then I saw Rob briskly walking with Reagan. Rob told me he ran with Reagan, carrying her all through the airport while she said, “I’m tired, Daddy. Daddy my legs are tired. Daddy, you’re tired.”

We made our flight. We sat down, buckled up and they pushed back. Our flight to Salt Lake was 34 minutes and I feel like that’s how long it took me to catch my breath.

Jackson Hole is beautiful. I am so thankful to have an extra set of hands here so we can try to enjoy ourselves — it helps so much. It allows Rob and I to reset, take a break, be a couple and then be better at parenting Reagan. Gosh, we need that so much. Having an extra person who knows Reagan and our family so well allows us margin.

Margin is so crucial in life, even more so with families who have children with special needs. And I think that is what bothered me so much about the mean looks from the lady on the plane. She has no idea. None. I typed up something on my phone that I wanted to write down and hand to her that gave an explanation as to what she was witnessing, which was only a snippet of our life. She has no idea that the fact that we go on vacation is a miracle in and of itself. I wanted to explain. I wanted to educate, but I didn’t. Instead, I tried to think of her as someone’s mom or grandmother who just doesn’t understand.

And Reagan calmed down and was a dream the rest of the flight, because we made the decision that Rob would sit next to her, in the middle seat. Rob was so uncomfortable and hot, but Reagan was perfect. And Lauren became our bartender.

This flight is one of our greatest memories and stories from a vacation ever. Every time we think about it we can’t stop laughing.

And it was still hard and it required pushing through a really horrible previous vacation and a rough take off, but this memory, it is one of my absolute favorites. It hasn’t been smooth this entire time, but is anything ever smooth and perfect? No. But I’m so glad to be here with Rob and Reagan and Lauren, and my California family.

Bonding with a Feral Child

God has been working with me to process our recent family trip to Washington, DC. It was a tough trip. There were beautiful moments and memories, clouded with really tough behaviors from our girl. The stroke and brain damage she had five years ago still lives with us every single day.

The part of our brains that allows us to control our impulses was damaged in Reagan’s brain. Because of that, it makes processing normal things very hard for Reagan. As an example, being told her shoes are on the wrong feet, might make her scream at the top of her lungs, clench her teeth and storm off. Transitioning from one thing to another, could result in a 15-45 minute meltdown, complete with screaming, hitting and saying things like: “That’s rude, Mommy! You’re a mean mommy.”

Our first night in our hotel had me in tears. I tried for an hour to get my overly tired and extremely strong willed child to go to sleep. It was 10:30 p.m. and no matter what, she wouldn’t listen, talked back and hit me. I hate writing this. I cried so hard, in front of her, and my sobs is what finally put her to sleep and me into a state of shock.

The next morning we walked to Nordstrom Rack to reward myself with a new pair of shoes for keeping my cool the night before, even if I was in tears.

Parenting a child with complex special needs is so hard. It’s rewarding and heartbreaking, amazing and terrible, hopeful and hopeless — all at the same time. I’m amazed that Reagan can say, “you’re a mean mommy” but sad that those are the words she chooses when I have to correct her behavior. I know, parents all over the world have heard these words, we’re no different, except that we are walking against the crowd.

On July 4th, I was walking on Pennsylvania Ave outside our hotel with Reagan screaming in her stroller. Everyone was walking toward the parade that was about to start, and we were walking in the opposite direction and I couldn’t help but think this is our life, upstream, away from the cool parade, distant from the traditional path. It made me sad, but I also know God set us apart for something different.

While reading in 1 Kings 17, Elijah (yeah the guy who doesn’t die) has some bleak things he’s dealing with. First of all, God’s directed him to drink from a tiny brook that’s about to dry up, and also, God said that the ravens will be bringing him food. Cool cool cool…yeah, just up in this deserted place with barely any water and the birds bringing me food, this is exactly how I pictured life. Then the brook runs dry and God’s like go to this new place and you’ll find a widow who can help. The widow is literally gathering sticks to cook her last meal for her and her son and tells Elijah after their meal she expects they will die because they have nothing else left. (You truly should read this story, it’s CRAZY and amazing).

Elijah, the ever so kind gentleman, says, “Go home and do what you said, but first, make a small loaf of bread for me, then bring it to me, then make something for you and your son.”

If this is all Elijah said can you imagine the look of shock the woman would have had plastered all over her face? But he continues, “For this is what the Lord the God of Israel says: ‘ The jar of flour will not be used up and the jug of oil will not run dry until the day the Lord sends rain on the land.'”

The woman had scraps, and God made her scraps last three years.

Can I tell you that the days and nights before this photo was taken I had nothing in me? Can I share that we were about to enter The White House and I was freaking out that she would scream and secret service would ask us to leave? And true story, one minute from getting inside The White House, Reagan said she had to pee. There are no bathrooms. Guys we are parenting on FUMES!

What I am continually learning is that even when what is visible seems like there’s no way out, that it’s too much to bear or that circumstances are impossible, there’s more on the other side that I can’t see. And the same goes for how things look on social media. I didn’t post a lot of our awesome and beautiful vacation photos because the story behind them was not was was pictured. Behind every great picture we took, was a frustrated mom and dad trying to get their kid to listen, eat, not hit us and go to bed at a reasonable hour.

I can either look at my current situation, with Reagan not listening to me, hitting me and scratching me and think, “Well, this is our life, and how it will always be, and there’s nothing more that God has.” OR I an look at my current position through the lens of God who has unfailing love for me. I can stand firm in the fact that either God knows what he’s doing or he doesn’t. And he for sure does know what he’s doing. And he for sure knows more than I do. And I can FOR SURE trust him.

It’s taken me several days to recover from the rollercoaster that was our DC family vacation. And I’ve come to the conclusion that some kids are feral, they are wild, they beat to their own drum that isn’t sold on regular store shelves, it’s in the beyond, section. We’re good parents, and her behavior isn’t an indication of our parenting skills. Oh my gosh, PLEASE remember this when you see a feral kid in public doing a crazy dance, making dinosaur sounds and yelling at their parents. They are FERAL. They are WILD and God made them to be a loud drum, with startling cymbals and a lot of BASS. I don’t know what God knows about our feral child, but he made her and I’ve got to trust that he knows what he’s doing.

Also shout out to friends who love us, and still want to hang out, and plan future vacations with us, even if Reagan pulls their kid’s hair.

Every Inch will be a Future Milestone

Reagan is starting to talk more.

It. Is. Amazing.

She’s six, and has just starting stringing multiple words together. This is something we (collectively, my family and anyone else who has prayed) have prayed diligently for, for over five years. Have you ever wanted something so badly you didn’t think you would be able to breathe until it happened? For our family, this is that thing.

The other day I was blow drying my hair and she came up to me and said, “What are you doing?” I’m blow drying my hair, child. You know what I’m doing. The bigger picture is that she initiated the conversation. She wants to talk and she’ll tell me “I want to talk, Mommy.”

She told us that she wanted a basketball and told Rob she wants to play basketball with him. I never want to forget this moment in time because it’s an active miracle displaying in front of us.

Things Reagan says:
“I play basketball after school.”
“I play basketball, it’s easy.”
“I no dance anymore. I dance a long time. Three years, Mommy.”
“I want to change after school, and go to playground.”
“I want to play with Kelly. I want a sleepover at Kelly’s.”
“I had P.E. today, not art.”
“I’m not your girlfriend.”
“I no have school today, it’s Saturday. Daddy no work on Saturday.”
“Sunday is church.”
“Tuesday is speech.”
“Go away, Mommy.”

She’s also coined some cute nicknames for us; I’m “Mommy Dolly” and Rob is “Daddy Chicken” she says he “bok boks all daaaaay”.

Speech. If you have it, you likely take it for granted. Being able to have your thoughts heard through your own expression, and even making those you’re with laugh, is one of the greatest ways we have to connect with one another. And Reagan is just starting to explore that. But it didn’t come out of the blue. She’s put in the work.

I was curious as to how much work, so I got some data from a few of Reagan’s speech therapists. Reagan has had speech therapy since she came home from the hospital at 14 months old. For five years we have belabored everything that has to do with feeding, textures, oral motor skills and the ability to move your tongue from side to side, up and down, strengthening all her muscles and teaching them to work together. The amount of coordination that you don’t even think about in order to say a word like “think” is seriously above my pay grade. We worked on saying “I want” for six months. We’ve worked on saying the ‘F’ sound for six months, not saying the word ‘F’ making that sound and the placement of your mouth, lips and teeth to do so.

Reagan just started whispering and that’s been years in the making.

Five years. 19.5 days. 467 hours. 2 hours a week. 28,020 minutes.

I love love love hearing things like: “She’s talking now! You can understand her!” But when we are asked, “What did you guys do?” That’s a question that has so many puzzle pieces to it.

In a nutshell, we did one moment at a time and tried to follow the path God placed before us as best as possible. We didn’t execute our moments flawlessly. We moved what felt like an inch a day, and many days we collapsed at the end, even good days. And all that focus added up to 28,020 minutes of hard work for two specific goals: talking and eating.

I recently finished a book called Pound the Stone. The premise is that the path to mastery doesn’t just happen, it takes constant work and grit, and on your way to whatever goal you want to achieve, it will often feel like what you’re doing isn’t even making a difference. In the opening, it talks about a stone worker hammering away at a rock, 100 times without as much as a crack showing in it. But at the 101st hit, the rock splits in two. It wasn’t that the last hit was more magical than all the others before it, it was because of the 100 previous hits that it was able to open on the 101st. Small things matter. Ordinary things matter. Inches matter, it’s why they are measured in football; inches always mean a future milestone.

Here’s a glimpse at the hard work Reagan puts in at speech therapy.

On the surface, it doesn’t look like much and it’s certainly not finessed, smooth talking. It looks like a lot of work, it doesn’t look fun and it for sure isn’t what Reagan wants to do after a full day of school. But, this is the hard work that only a handful of people see and understand, and these moments in a little 8×8 therapy room, are the inches we are taking toward our big milestone goals. I’m so proud of Reagan and everyone who is gritting it out on the path with us.

Is your back against a wall?

We’re coming up on the FIVE YEAR anniversary of Reagan’s crisis. It happened April 8, 2014. Back then, things looked grim, like they were over. But oh, how God can take the really awful things and make them really awesome. Only God can take a locust destroyed land, and restore it, as if the locusts were never there.

It’s not every day we talk about locusts, but I got wrapped up in reading Exodus 10 and the surrounding chapters this morning. It says one day God blew in a strong east wind all day and night, and in the morning locusts “invaded” Egypt and “covered all the ground until it was black.”

Can you imagine?!

Let me briefly unpack what happens next. Pharaoh was angry, he summons Moses, says he’s sorry, asks for the locusts to leave, and then God brings a strong west wind and they all blow away into the Red Sea until not one locust was left in Egypt.

The plague of the locusts was actually the eighth plague out of ten that God brought to Egypt leading up to the mass exodus of the Israelites out of slavery from Egypt. I know when we go through hardships, like a locust eating hardship, we’re often we’re quick to blame God.

“How can He do this to me?”
If he was a loving God, he would never do this.”

Those questions are human and valid, but they come from a place that lacks the full knowledge of what God knows. When looking at the 10 plagues and the exodus from Egypt, God gave Pharaoh nine solid chances to let his people go, it was the 10th plague when Pharaoh had enough and couldn’t take it anymore and finally let the Israelites go.

Want to know what’s even more crazy? When the Israelites are set free, God doesn’t take them on the shortest path out of Egypt, he takes the long, scenic route. He took them around the desert and he had good reason, it says in Exodus 13:17-18 that God knew if they went the shortest way, they could face war and then run back into Egypt and into slavery.

Ugh…reading this, for me was super impactful. I really feel like our family has really gone off the beaten path to get to where we are. But God knew something we didn’t. In order for our family to get here, with our faith, with our marriage, with our ability to communicate and enter into someone else’s hard space and speak some of God’s hardest truths, with confidence, we had to walk that path. We had to go the long way around.

It gets better though, for the Israelites and for you! I’m telling you, read the plagues in Exodus and about God’s deliverance of Israel, the Bible is for sure not boring in these chapters.

Good news, the Israelites escape, even though they went the long way, but now their backs are literally against a wall, a wall of water known as the Red Sea, and it looks like it’s over because the entire Egyptian army is racing toward them. But God made a way. He said:

The Egyptians you see today, you will never see again. The Lord will fight for you; you need only to be still.” – Exodus 14:13-14

What if that was our stance toward every arrow that is flung in our direction? In sickness, in financial trouble, in marital woes, with our children, with our enemies. The Israelites stood there looking back, and God said, don’t you worry about that army of 600 of Pharaoh’s finest chariots loaded up with officers and his entire army of troops coming after you; I’ll fight that battle, you just be still.

I’ll fight the battle with Reagan, just be faithful to me, Rob and Anne-Marie.
The Lord will fight and she’ll walk again. You be still.
The Lord will fight and she’ll eat again. You be still.
The Lord will fight and she’ll talk again. You be still.
The Lord will fight and she’ll read. You be still.
The Lord will fight and she’ll smile and laugh, and we will take the long way to get there.

The thing that’s cool about going the long way, is you will only see beautiful things, gain wonderful wisdom and walk with confidence when you go the long way.

Five years ago, I firmly believed it was impossible for Reagan to re-gain anything back. You know what else looked impossible? Escaping Pharaoh’s army.

Did you know that the Red Sea has a maximum depth measured at 8,200 feet and has an average depth of 1,640 feet? Neither did I. God made a way for the Israelites by splitting the sea and they walked across on DRY LAND. The Bible is super clear that the land was dry.

“Then Moses stretched out his hand over the sea, and all that night the Lord drove the sea back with a strong east wind and turned it into dry land. The waters were divided, and the Israelites went through the sea on dry ground, with a wall of water on their right and on their left.”
– Exodus 14:21-22

If you feel like you’re drowning, or in a place that seems hopeless and a place where you future feels less than sure, remember what God has already done, and if you can’t remember what he’s done in your life, man…Exodus is a really cool place to be reminded of what God can do, what He has done and that putting your faith in Him is a great place to start.

If you’re thinking, “Yeah but that was so long ago, he won’t do that for me.” Then look at my family, because if God can restore us and Reagan, he can restore you too. He can take whatever you are struggling with and turn it into something beautiful that has a purpose. The path to restoration might not look how you want it to, it never does to be honest. You’re most likely on the scenic route, where you’ll see really beautiful things and learn something you never could with a shortcut. Then and only then, will you walk confidently out of your hopeless situation feeling hopeful, strong and a lot wiser.

When Things Aren’t Actually Good.

I have been struggling with how to write this, what to say, what not to say and also how much to share.

We share a lot. I feel like everyone who reads this knows everything about our story. But some things feel sacred or maybe I just want to keep the new harder things secret. Didn’t God give us this incredible story; this “good ground” and platform, through our daughter, to share her miracle-witnessing story? Am I being prideful, vacillating between sharing and not?

As I was talking to my friend Jessie, she told me that she remembers some really transparent, vulnerable, hard blog that I wrote years ago, it didn’t have a positive spin, it was raw and emotional, she said it stuck with her. She pointed to that, and knowing where we are now, was able to visibly see the growth, the miracles and the progress in our story. An unlikely field, that had good soil beneath it, ready to produce a crop where it once seemed improbable.

Let’s dive in. We are dealing with a lot of new and really hard things. We all have problems, but even when you find a solution for old problems, new problems will arise from solutions to your old problems. Perfect and problem free living isn’t the reality of this world.

Reagan is off of three neurological medications, which is great! She was put on the medications over four years ago to help protect her from any potential future seizures and also help her mind and body figure out how to work together, to overcome her uncontrollable movements. As a result of removing three neurological medications, with precise weaning and over the course of eight months, a new problem found its way in: intense emotions and outbursts that can last a really long time.

The neurological medications she was on, likely had some of her emotions “sedated” for lack of a better word. Maybe she wasn’t feeling all her emotions, and now she’s feeling them times a thousand. We think she’s even more aware of how she feels when her peers want to play with her. We recently learned from her teacher that she’s starting to withdraw when her classmates want to include her in imaginative and dramatic play. Reagan is creative and silly and funny but it’s still hard for Reagan to verbalize fast enough and in a way others can understand, so she opts to not play and removes herself from the playground or from the situation. And, it’s possible she’s not feeling confident in her ability to use all her words with friends, yet. She knows people have a hard time understanding her and it frustrates the heck out of her. I wonder if instead of dealing with the frustration and hurt of trying to engage, she chooses to withdraw. In her mind, maybe this is a win? She doesn’t have an outburst or tantrum at school, and continues being the “good girl” that she’s expected to be and the kind and courteous girl that her teachers know.

I’ve cried a lot of tears recently because Reagan is social, but she’s adapting against her natural personality so that she doesn’t get frustrated or caught not knowing how to participate. This was not something we were expecting, but I guess it shouldn’t come as a surprise. Even though she’s social, social interactions with her peers are becoming more complex, and this is another area we need to catch up, an area we didn’t think we’d need to worry about.

Reagan is also having a hard time reading and sounding words out, she can’t say all of her sounds to begin with, so combining letters and sounds to make out a word that the teacher can understand is hard too. Even though she’s talking so much more and we can understand her more, this is another area she needs to work harder at to catch up to her peers.

She has to fight so much to even sit still enough to learn, combine that with difficulty talking, writing and other school related things, the distance between her and her peers is a constant push and pull. Contrasted with earlier in Kindergarten, when Reagan would correctly choose an answer for reading or math, now she’s having a hard time, and we wonder if she’s grasping the material.

She can’t write legibly, and truly, this is the VERY last thing I care about, but it’s also a way a teacher could test a student’s knowledge. It’s not possible to test Reagan’s knowledge through her writing numbers or letters, yet.

It’s hard for Reagan to manipulate a mouse and computer. Touch screen would be a bit easier, but the school doesn’t have that, even if they did, Reagan’s fine motor accuracy is not great and she gets frustrated now with her iPad if she messes up in selecting something for a game.

Did I mention Reagan is a perfectionist? When she would use her talker (which she adamantly refuses now) she would start to put a sentence in, and if she made one mistake, would erase the whole thing and start over. She gets frustrated if one of her baby bottles that is rounded on the bottom, won’t stay up straight. Also, why can’t these toys be made FLAT to stand up normally? Fine motor movements, specifically with her fingers and hands can be a challenge, so things are constantly dropping and falling. Reagan’s gross motor skills are good enough to get around, but she also runs into doors, and steps on our feet with her converse more times than we have patience for.

And yet she says, “sorry” so clearly. A word that’s hard to say, because of the ‘s’ and she says it in a kind voice, over and over and over. Our feet get stepped on a lot, and Bauer often yelps when he gets fallen on and stepped on. But she’s really sorry, she can’t help it or control it. We’re all frustrated, exhausted and sorry.

I want to be honest with those who follow our journey because my goodness, Reagan has come so far and we never want to forget that and we always want to acknowledge what God has restored. But the truth is, we’re constantly playing catch up with what she’s supposed to be doing for someone her age. We still feed her sometimes, because if we always left it up to her, we’d be too far away from her dietary goals, even as we’ve allowed ourselves to become somewhat relaxed, we can’t be TOO relaxed.

Excuse me while I indulge in a gymnastics illustration. We live our life on a balance beam. The balance beam is four inches wide and four feet off the ground. The room for error is unforgiving and mistakes on the beam are obvious and glaring, our life includes so much falling, failing and frustration and we just can’t seem to master anything on our beam of life. Meanwhile other people seem to be doing a flawless floor routine, with stable legs on a flat even surface. It doesn’t look like any of their obstacles are even challenging. I think to myself, “Do other people even have obstacles?” Of course they do, I know we are not unique. Our problems are different but no one is problem free.

When people say: “Reagan is doing SO GOOD!” or “How is Reagan? She seems like she’s doing amazing!” I don’t want to disappoint their high high expectation, so I say, she is doing amazing while adding, she’s a real sassy pants, because that’s cute and adorable, so the banter continues, “who isn’t sassy, she’s just knows what she wants!”

This is why I’m sharing our new, hard realities. Because behind the smile is a raging storm and that’s the truth.

From where we came from, she’s succeeding beyond what we ever thought would be possible. But I’d be lying if I said “yes she’s doing great” and didn’t fill in some color and details. Things are still really hard. Short of a full restorative miracle, I imagine things could always be a struggle.

I say all that BECAUSE I am CLINGING, like every single day to Romans 8:28. I put it in three different translations below because I want to KNOW this truth in my soul, and I want YOU to know it.

When I’m crying because I had to carry her out of HomeGoods like a football, or when she pulled a different Mom’s hair at a Dr. appt. and I had to discipline her (Reagan, not the mom) in a Nemours lobby, amongst people coming and going, swirling about, I need to truly know that God is working something good out of it. When I lose it and all of my cool and scream back at Reagan within the walls of our home, where no one is watching except God and the dog, I need to know, God can work that out for good too. I want to remember, our daughter is good ground that God has GIVEN to us to tend.

Here’s what Romans 8:28 says:

And we know that in ALL THINGS God works for the good of those who love him, who have been called according to his purpose. Romans 8:28 (NIV)

And we know that God causes EVERYTHING to work together for the good of those who love God and are called according to his purpose for them.Romans 8:28 (NLT)

And we know that for those who love God ALL THINGS work together for good, for those who are called according to his purpose. (English Standard)

He doesn’t work out Tuesday’s mess ups but not Wednesday’s. He’s not going to put only part of our story on display and keep hidden a different part (this part). No, he’s taking ALL of it, EVERY outburst and tear, and he’s working that jazz out, FOR GOOD because we love him. He’s called us to this.

We all have our own God given field to reap and sow in. Rob and I so much want to sow good things into Reagan. And we know God can, will and IS using her story. When I get mad at God that this is our path, I am reminded of Romans 9:20-21:

But who are you, a human being, to talk back to God? “Shall what is formed say to the one who formed it, ‘Why did you make me like this?’” Does not the potter have the right to make out of the same lump of clay some pottery for special purposes and some for common use?”

I don’t know what kind of pottery we are, but the way God made us and our family is no accident. It’s not what I thought my path would be, but I know that God WILL work ALL things hard. messy and seemingly impossible things in front of us for good. God’s got so much good waiting for us, even when our feelings say the opposite. Which is why we can’t rely on our feelings, we HAVE to rely on our faith and God’s word. It’s the only thing that’s true in this whole entire world.

A 2018 Sunset

As 2018 winds down, Rob and I sat down to reflect what this past year has looked like. And more importantly, we wanted to document things we never want to forget from this past year.

I’m not a scrapbooker, we rarely print pictures. Social media documents our progress and this blog knits the highs and lows into a tapestry of our life.

And so this is where our family keeps some of our sacred memories and moments and we share them with you.

I never want to forget

When Reagan would blame everything on her elbow. She’d take a full cup of water, purposefully dump it on her bathroom counter, and point to her elbow and laugh. Or take her plate and dump all her food on the table, as I watched, she would calmly say, “Elbow” with pure comedic genius.

When she learned my mom’s name, Thelma, and started calling her by her first name.

Then she started calling Daddy, “Daddy Robert” and giving us her signature mischievous grin.

She started adding “ie” to words. Do you want a snack Reagan? “Chippies. Orange chippies!!” Which means she wants cheddar and sour cream ruffles. And Huggies. She comes toward us with arms wide open saying she wants a hug, “HUGGIE PEAS!!”

Reagan tries to discipline Bauer when he barks. “No barking Bauer! Sit down Bauer!” Bauer doesn’t listen, which makes me so gleeful, because it gives Reagan just a taste of how annoying it is when someone doesn’t want to listen to you. She also wants Bauer on her bed for bedtime stories and to stay until she falls asleep, and he totally obliges.

She drives her power wheel with no hands and rarely does she look forward. She totally understands how to put it in reverse and turn the wheel, but has determined that driving with hands is 100% overrated.

We are always always impressed that Reagan has her dance routines memorized. And while she isn’t on beat, she knows the moves, and does all of them to the best of her ability. If she’s not feeling a particular costume accessory, like gloves, well…let’s just say it became our Waterloo.

Why you might ask? Why? Why? Why? Why? We’ve entered the why phase. Is it going away anytime soon? No. Why? Well I’d tell you to ask Reagan but then you’ll be 45 why questions in and forget where you started in the first place.

Getting the award for Most Talkative in dance class. (What?! How?! So excited for this one).

Asking to play with her friends by name.

Reagan has come into her own, fashion-wise. She LOVES picking out her outfits, changing them after school, after dance, after painting, after being outside, after her first nightgown, after getting food on any part of her outfit…you get the picture. More than that though, she dresses herself.

Her bravery. This year she connected the dots when she was at the hospital for a blood draw.

One thing I wish I didn’t have to write, but am going to anyway. Reagan’s extreme strong will has broken us more than we’d like to admit. On our very first Kindergarten school field trip to the zoo, Rob was one of the chaperones and I volunteered so we could help each other out. Turns out, we needed one another more than anything. Reagan became frustrated at lunch, and the talking back turned into screams and a meltdown that prevented us from moving forward more than once. We ended up having to leave the field trip, apart from her class and our hearts were so broken and burdened by what this means for our girl, who sometimes has such a hard time with emotional outbursts and behaviors. I cried for days and both of our spirits were so low.

Luckily, we have amazing friends who sat down with us and brainstormed how we could get her attention to a correct this behavior. Since clothes are the #1 thing she loves, we told her that for talking back and screaming when we ask her to do something, her punishment will be having batches of clothes taken away. It was a hot button item for Reagan and one fateful Tuesday morning in December, the plan was put into place when she started talking back to me. I came out with a handful of princess dresses and put them in a trash bag in front of her. Her reaction definitely let me know I had her attention. Unfortunately, her will of steel was still in full force. At the end of the day, three trash bags of clothes and four drawers were removed from her room. I honestly felt for all of us. I don’t want to do this, it makes me cry that we have to. Reagan can earn her items back with good behavior. We are filling up a mason jar of fuzzy pom-poms, affectionately called “warm fuzzies“. Reagan can earn warm fuzzies for listening, having good behavior and being kind. In just a day, the jar was half-full.

This brings me to another thing we are keeping in mind. Reagan is being weaned off many neurological medications. She’s currently off of two completely. Everyone’s parenting journey is different, and while I’m being super candid about ours, her struggles aren’t lost on us. In the same respect, we still have to parent and discipline. Even though she has trouble speaking, is being weaned from medications, has a genetic disorder and suffers from irreversible brain damage, she still has to be disciplined. And that is something we struggle with. Is it too much, not enough? I don’t know, she’s our first and only child and so we’re doing about as much right as we are messing up. But we’re doing all we can.

Reagan loves art. She started coloring more in the lines and her art table is a place of peace and calm. Art helps Reagan calm down, and she loves to create things.

We’re adding a larger patio to our house, Reagan tells everyone it’s for her bubbles.

We had a friend make a new table and bench, before it came Reagan would sign “different” and tell everyone “new table“.

Reagan used to sign “kind” and now she says we are “kind Mommy and kind Daddy.”

Reagan prays at night, she asks God to help her to talk. And she prays for her friends and Mommy and Daddy and MéMé and Bauer.

After a particularly tough day of discipline, she read her Bible until falling asleep.

Her love and loyalty to the little friends she’s made and kept for the three years she’s known them.

She helps with family art projects and the art that Rob makes for our house.

It’s not green or blue, it’s “Aqua” and she’ll correct you.

Reagan saying Obama for umbrella.

When we ask Reagan a question, the answer is always no. Then we wait, and she’ll tell us what she really means. We’re working on having her first answer be the one she wants to say.
“Do you want pizza, Reagan?”
“Yeah…yeah!!! YEAH DADDY!!”

The only word she can say that starts with an S is Snoopy.

Reagan’s first haircut in a real salon.

Loves playing hide and seek but is terrible at it. She says, “I’m here!”

If someone else burps, she says “Excuse Me” for them.

One of my most favorite memories is Reagan being a flower girl in a wedding. She walked down the aisle by herself, she held her flowers up to the sky at the altar, and walked into the reception like everyone was there for her exclusively.

Her confidence.

She climbed a ladder to the top of a playground all by herself.

Her love for Santa and for Halloween. But she never eats her halloween candy.

This year we were able to be at the beach for hours and she would cry when we had to leave.

Losing three teeth and only finding one.

Positive flying experiences.

Reagan saying “I’m a miracle.”

I recently read a passage from Streams in the Desert by L.B. Cowan. It talks about taking the things the enemy has used to wear you down and bring against you, the war that he’s waging against youto take that suffering, and turn it into spoils.

Romans 8:37 says that we are more than conquerers through Christ Jesus. And being more than a conquerer in war, means driving the enemy from your field, taking all the food, supplies, ammunitionit’s the spoils. And so much war has waged in our life, on our field, through our daughter Reagan. And with Jesus, we are fighting back, taking our spoils and being more than conquerers.

L.B. Cowan compares the storms of life this way: “Like the eagle, who sits on a crag and watches the sky as it is filling with blackness, and the forked lightnings are playing up and down, and he is sitting perfectly still, turning one eye and then the other toward the storm. But he never moves until he begins to feel the burst of the breeze and knows that the hurricane has struck him; with a scream, he swings his breast to the storm and uses the storm to go up to the sky; away he goes, borne upward upon it.”

There are many times that I hate our storm and the war we have to fight. But knowing that the storm can help me go higher, and knowing that there are spoils from the war being waged that we can appropriate for our family, allows me to look back and see, that we’ve actually done that, and continue to do that.

All the things I don’t want to forget this year…these are our spoils, and we’re not done.

Our Wheat Field

A single grain of wheat will never be more than a single grain of wheat unless it drops into the ground and dies. Because then it sprouts and produces a great harvest of wheat—all because one grain died.

I’ve been thinking on those words for a few days now and what they mean in our life. When Reagan had her crisis, it was like a grain in our life died. And that seed that dropped into the dirt was filled with our hopes, dreams and expectations, and it was buried deep, as deep as death is buried. And with it, all our aspirations for our family and even our lives, were put into that grave.

This is what loss feels like, or hardship or turmoil, or when you feel boxed in by a bad circumstance. But isn’t that what it’s like when we plant a seed for our garden? It’s boxed in with nowhere to go. The difference between being planted and being buried is perspective. The seed doesn’t know it’s being planted, from the seeds perspective, we buried it. It has to go really deep, it needs to be buried and it needs to stay underground for a while if it is to last and produce fruit or beautiful flowers, the roots need to establish themselves, and that can take time.

Maybe as someone watching, you’ve seen our tree limbs, but I’m telling you, we’ve been underground, for a while, our root system is deep and I feel like now is the time that we’re just starting to sprout. We’re sprouting fast and strong, in joy and splendor, like a tall oak tree, with limbs reaching far and wide and a tree growing tall and strong.

Our prayer has always been full restoration of Reagan. God says he hates robbery and wrongdoing, and I’ve been reminding him of that lately. And I’ve been standing strong on his promises declaring healing and blessings and double portions onto our life.

When I look back at what we have gone through, I know God was always working. Yes, he allowed something terrible to happen to Reagan and to our family…but he was also many steps and years ahead. Knowing that through her crisis, while we felt buried, he was planting something deep in our family. He had to grow our family’s root system and refine us, so that when we popped up for air, we were ready and strong. (By the way, did you know our last name, Wurzel, is German for root?).

Maybe you think we were sprouting a while ago, but for us, it feels like it’s just starting.

We have cried so many tears. But our tears weren’t in vain, we sowed them as seeds, meaning we gave them to God. God, you do something with this mess, with these tears and with all our despair.

And he has. And he continues to do so. He will never stop.

Here’s some shouts of glee:
Reagan is half way weaned off one of her medications.
While we’ve been teaching Reagan sign language, she’s shown more interest in using her words and has been talking A LOT more. Please pray for better clarity and pronunciation in her speaking.
Reagan is doing GREAT in Kindergarten.
She’s been talking that she wants her friends to come over and play, and even have a sleep over (what?!).

Our tears have sprouted into a harvest, one we could have never predicted. If you told me 4 1/2 years ago Reagan would be in regular Kindergarten I would have said you’re crazy, because 4 1/2 years ago, we were looking at medical daycares for her. Those tears were sown super deep, buried as deep as death. And now…we have a Kindergarten harvest and we are shouting with glee that we’re here. I know God isn’t done, and there’s so much more to come.


De-emphasizing GA-1

This blog is written by both Rob and Anne-Marie. Indented and italicized paragraphs are written by Rob. 

We visited the Clinic for Special Children, in Lancaster, PA. There’s a reason we decided to come here, in the middle of Pennsylvania, Amish community. There’s a man here, Dr. Strauss, a world-renowned specialist in GA-1. He helped create and redesign the formula Reagan drinks, he’s helped with the protocol for treatment and during our meeting, he said things that turned our world upside-down and kept it spinning long after we left.

In the middle of this corn field, is a cutting edge facility filled with people who have seen more GA-1 patients than anyone. You see, the Amish are more prone to genetic disorders due to their small genetic profile. And Dr. Strauss has treated hundreds of children with GA-1 not just in the Amish community, but throughout the world.

He eloquently explained GA-1 and the part of the brain that GA-1 attacks, comparing sections of the “basal ganglia island” to a pizza, with a cheese part and a crust part. He explained that there’s only one type of cell, “located in the crust” and this is the only location in the entire body where this type of cell is located, and that GA-1 only seeks out this type of cell.

After looking at Reagan’s MRI and going through the history of how her crisis unfolded, he confirmed that the manner in which she collapsed is how GA-1 works and that it’s a terrible disorder. He also said that had we done an MRI the day before her crisis, everything would look normal. Her MRI on the day of her crisis proves it was an isolated incident, and shows that the one type of cell this disorder goes after, was destroyed.

We continued our discussion, he said the greatest risk for damage like this is until the age of two. After two, the risk declines greatly, which we already knew. But, what we didn’t know is that if there is a crisis and GA-1 destroys the one type of cell in the crust of the basal ganglia, it’s gone. There are no other cells like that in the brain or the body, and the risk for another crisis is essentially removed.

Now, no one will come right out and definitively put on paper that a crisis will never happen, ever again, but as we spoke to Dr. Strauss our level of stress and anxiety started to ease up. Yes, Reagan will have GA-1 forever, it’s in her DNA, but we can begin de-emphasizing it’s impact in our lives.

Looking back, planning and bringing home Reagan on day two of her life was essentially like moving into our newly constructed dream home. On day four, when we received the devastating news of her genetic disorder and learned about this terrible thing called GA-1, we essentially boarded up the windows and barricaded ourselves inside, as if we were preparing for a category five hurricane. When Reagan had her crisis, our new and perfectly planned home was damaged and we dug in deeper—or to use a phrase only Floridians say during hurricane season, we hunkered down.

But at this appointment and to continue with the analogy, Dr Strauss began to take down the boards that covered our windows to show that the storm had passed. Yes, the storm’s damage had been done, but the damage HAS BEEN mended in a new way, this time with character and uniqueness

GA-1 doesn’t need to define Reagan, and up until this point it has been defining so many of our waking hours.

Now our position is slowly shifting; if she doesn’t drink all her formula, it’s OK. If she doesn’t meet exactly 20g of protein a day, it’s OK. So many times we’ve felt the pressing weight of not meeting a specific protein goal, so much so that we end up begging Reagan to ice cream or cookies to help her meet the protein goal. He gave us a wide range of 18g – 25g of protein for a goal. Just writing that makes me feel more relaxed. This approach, is mainly due to her age and the lowered risks, but also because she’s had a crisis and that particular type of cell is gone.

Dr. Strauss said Reagan reminds him a lot of another GA-1 patient of his. She recently turned 19, is going to college and just got her driver’s license. She also has a movement disorder and had a crisis.

“You will be surprised at how independent she will be.”

I could have cried when Dr. Strauss said that.

Then, we talked about the medicine. He wanted to know why she was on such a concoction of neurological medication. Rob and I discussed that it was due to her movement disorder and everyone being fearful of more seizures. We just thought this is what you do. He colored in our thinking by telling us it’s because when doctors see a problem, it’s like a popped nail and they can’t help but grab a hammer to fix it.

Seizures are a common occurrence during a metabolic crisis, and Reagan had three. But she hasn’t had any since then. We’ve driven ourselves crazy wondering if she hasn’t had seizures due to the medication she’s on, or is it because she’s not prone to have them at all? No one has felt comfortable taking her off the medications because what if she has another seizure? Dr. Strauss likened that line of thinking to walking around with an open umbrella over your head and rain boots on every day because it might rain.

The months following Reagan’s crisis were understandably dark times for both of us, and even though we have emerged from that darkness, it has stuck with us. For the past 4+ years, we celebrate every gain Reagan makes with extreme joy, but there is always a part of us that wonders if it will be taken away. When will GA-1 pull the rug back out from under us? When will this all come crashing back down? Living like that has taken an unseen mental, physical and emotional toll on both AM & I. And when Reagan gets sick, like every child does, we retreat within ourselves, preparing for the worst.

But hearing the words from Dr Strauss “begin de-emphasizing GA-1 and its impacts in our lives” was something freeing for both of us, as if someone had removed the albatross from around our necks. Do we still need to watch what she eats, make sure she drinks her milk (formula), and be cautious when she is sick? Absolutely, but that sort of normal is music to our ears. We can do that.

“Get out from under this dark cloud that her crisis has had on your life. It’s over. It’s never going to happen again.” Those words spoken by Dr. Strauss to us were like a crisp breeze over our face.

I get nervous writing something with such finality and while those were his words, what if he’s wrong? There are others in the medical community of genetics who aren’t so willing to provide guarantees. In medicine and in life, there aren’t guarantees and we understand that. But the freeing feelings Rob and I felt as we sat in that patient room were unmistakable.

What now?

Well, we’re going to start systematically weaning Reagan off her neurological medications, there are four of them and this could take a few years to accomplish. Two things could happen, 1. her movements might increase and 2. she might have a seizure.

If her movements increase, we’ll see by how much or if she’s able to work through them. The benefit of removing some of these medications is her clarity can increase, her behavior and mood could improve, maybe her talking too. The risk and reward have shifted. Before she couldn’t control her arms from flailing, and now she’s trying to run and do ballet twirls and pliés all over the house.

And we’ll pray she doesn’t have any seizures. But we’re putting the rain boots away and our house isn’t going to be boarded up anymore. GA-1 is here to stay, and we have a healthy respect for it, but we’re ready to de-emphasize it in our lives and try to live a more normal life.


You know what’s crazy about open cuts and wounds? They heal.

We often say time heals all wounds but I tend to disagree with that statement. As a person who has had lots of wounds, other than just this massive physical wound that’s healed on top of my head, I think a more accurate statement is that over time, we learn to live with the scars from the wounds we’ve endured.

One year ago today I had brain surgery. Looking at me, you wouldn’t know that I have a scar from the top of my head to just below my ear. You wouldn’t know that I have titanium plates under my skin, or that I don’t have 100% feeling in my scalp, and that much to my chagrin, I think my head feels like the Grand Canyon. Rob plays with my hair every night and he says, “you really can’t tell,” but I think he’s just being a good husband.

That’s the thing with invisible hurts and wounds, if others can’t see them, it’s like they don’t exist. I’ve always said my brain surgery was a side dish to the main course of our daughter Reagan and her struggles. Her struggles are visible, so there’s an understanding amongst other people when we’re out. But there are lots of invisible struggles and everyone has them.

If you’re going through something mountainous, or Grand Canyon like, every step might look like one where a wound will be inflicted. The inevitable thing in this life though, is that wounds are around every corner, from a friend, a spouse, a family member, a Dr. report or the sidewalk outside.

Please be encouraged though, when your wounds begin to heal, you will figure out a way to live with the scars and not just live, you will be joy-filled again. If there is one thing I’ve learned in the past five years it is that God is serious about seasons. He’s always teaching you no matter what the season, but the times I was closest to him and the times I learned the most, was in those really rough seasons. There was something being refined inside of me, so that in the next season something new could shine.

I’m grateful to be one year post op and out of brain surgery season, but there were valuable things I learned while there. Because of that tough season, I will walk more confidently in the days ahead, and you will too.