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?”
“NO!”
“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.

What a Difference

What a difference a year makes!

You hear people say that all the time, because in hindsight, problems or circumstances can be completely different in a year. What we don’t often hear is what a difference three years makes. Because that seems like an eternity, and it’s too hard envision all the work that will have to happen between now and three years from now. Can’t it just be a year of work and everything get neatly tucked into place?

God does some of his greatest work in the struggle of the desert. You might not think God is in the desert, especially if you’re relying on your own faculties to get through it. The beauty of the desert is there’s NO way you’re going to feel fed or watered unless you look up to who can provide that. The desert is survival mode for everyone and everything. But the desert is also where God is most relied on and where he’s most desired. I think that’s why he puts us there to be honest.

The desert is for two things 1. developing something within us or 2. releasing something that has a grip on us.

Do we need to develop perseverance, conviction, trust?  Do we need to release control, possessions, pride or something else that’s not helpful? You can’t hold on to unnecessary things in the desert, because if it’s not helpful for survival, it’s dead weight and it has to go. The only thing you can hold on to is Jesus, the desert makes it abundantly clear who you need and where your eyes must shift in order to gain strength and hope.

Three years ago

We would pack up Reagan’s walker and go to the mall. Reagan couldn’t walk straight and being on wheels would sometimes make her push off her feet and go in circles, which she found hilarious. To be fair, it was super cute and funny but it also made me wonder, will we ever be able to walk the mall together? Three years ago she could only walk the length of about four or five stores and we couldn’t go into any stores because they’re not set up for a child in a walker who has trouble going straight. Honestly, my soul hurt so bad to go to the mall when we had to bring the walker. I had to mentally prepare…we will get stares, children will point and look to their parents for an explanation. The parents will look at us and shrug as if to say, “I don’t know what to say, please forgive me.”

Today

Reagan is walking the mall back and forth, going into any store that looks interesting and having a GREAT time. This photo is angelic. Her shadow reminds me that angel armies have been protecting her, God has held her and us while we’ve been in the desert, and as we emerge into a land that has the fruit and riches of hard work, it is different than we expected, but we are here, still on the path God set forth; we didn’t arrive on our own strength or laurels. God paved the way, God gave us the strength so let me credit who it IS owed to so you know what I mean when I say, what a difference three years makes.

If you’re in the desert, please don’t give up. There are things you can only learn and develop within yourself while you’re in the desert. There’s no other place quite like the desert to learn perseverance or trust. There’s no other place quite like the desert to develop the amount of empathy or understanding God would like to see in you. You may want to rush it, but the desert is arduous, designed that way for you to stop trying to fix things on your own and rely on God. This process can’t be rushed and neither can gaining the character traits that are being developed inside of you.

Seasons

Remember, being placed in the desert is a season, being placed in a meadow with flowers is also a season. There’s something to be gleaned from each season of life that God puts you in. I can look back to the harder seasons and while I didn’t love being there, I can be thankful and grateful for what I learned there. Keep going. Better seasons are ahead my friend.

 

Being Different is OK

One Year Ago.

Part 2. Exactly one year to the day.

Do you ever have those moments where your whole heart breaks in two for your child? It’s happened a lot, but this past weekend I realized I needed to up my parenting game on the spot. It wasn’t just any teachable moment, it was a defining moment, a remember forever kind of moment.

Reagan was sent to timeout in her room for pulling and hitting a coworker who was over at our house, she goes to her room crying those hot tears, with her hand over her mouth and screaming because she knows she’s not supposed to do that. And when she realizes those things, this is often the scene.

I️ followed Reagan into her room, which I normally wouldn’t do. I’d allow timeout to happen for a few minutes and then talk to her, but this seemed different. I don’t know why, it just did. Through our conversation I️ asked her a series of questions like, do you know you’re not supposed to do that? (yeah! *tears rolling down her face*) Are we supposed to hit and pull our friends? (NO! *hand over her mouth and head buried in my shoulder*) Would you like it if someone did that to you? (NO! *bottom lip out as far as can be*)

I don’t know how the conversation got where it went next, but Rob and I have talked with her before about this, and she knows and we know that it’s hard for her to control her emotions and her movements due to *insert all the things* here. I remembered that she had used the word different a few times on her talker recently. So I asked her if she liked herself. And her head just fell and her lip was out and she looked me in the eyes and said no and buried her head in my shoulder. She didn’t like herself. She didn’t love herself.

Reagan, do you feel like you’re different? *sniff, sniff, big belly scream* “Yeaaaaahhhhhh!”

My heart broke into a million pieces. First of all she’s telling me this really hard thing to communicate for any 4 1/2 year old. And, I’m so glad she can communicate her feelings, but I hate that this is the feeling she’s having. She answers that things are hard for her. It’s hard for her to communicate and she’s frustrated that it’s hard for people to understand what she’s saying.

She knows sign, but she learns faster than us. There have been a few times when she’s signed and we don’t know what she’s signing.

Most recently it went like this:

Rob: “Are you signing something?”
Reagan: “YEAH!”
Rob: Does Daddy know the sign?
Reagan: “No”

And we proceed to guess what she’s signing until we get it. That time, she wanted a princess story from Daddy. She had just learned the sign for princess one day earlier and it hadn’t registered with us yet.

So in this moment I’m trying to figure out what to say to her impressionable heart and mind as I’m fighting back tears. I tell her “God made you perfect and you don’t need to be like everyone else. Being different is OK, even though it might be tough sometimes.” She wasn’t really loving that idea…so I tried again.

I told her about when she was sick, but in more details. She’s been telling me that she wants to be a Dr., specifically a baby Dr. when she grows up. So I told her some of the Dr.’s that saw her in the hospital were wrong about what she would be able to do. I told her the Dr’s told Mommy and Daddy she would never walk or talk or eat. And they were wrong.

Then I️ explained to her what a miracle is, who is responsible for miracles and that she IS a miracle. Miracles are different AND awesome. She knows God made her and that God loves her. She signs that God and Jesus live in her heart. She’s receptive to all of that. At the end I ask, is it OK to be different? She had mixed feelings about it still, but the wheels were turning about being different and being cool and how they can coexist.

Being different was the theme of the week. We drove to see Christmas lights and pointed out that they were all different, and that they were still beautiful. “Reagan, don’t you see how being different is awesome!?” She was 50/50, not quite convinced.

Having a child who is almost five that has difficulty expressing all of her thoughts, imaginations and dreams is really hard. The other day she used her talker to say “I am mad” and “I am sad.” And she cried as I asked questions that related to the signs she was giving me and what I thought she was saying and all the surrounding events.

Sometimes she wants to say something funny, most recently it was “I like Elf and toilet.” She then smiles with her fingers in her mouth as she laughs and waits for me to get it. Although it took me a little while to figure out, I learned she was referring to a scene in Elf that she finds so funny and wanted to tell me.

Buddy the Elf is different, and so loved. Reagan liked that comparison 🙂

We so badly want her to talk and to communicate with her in any way possible. We are looking to take sign language in 2018 as well as sign her up for more intensive speech therapy. It truly is a blessing to be able to talk with your children and we hope and pray for that continuously. If you think of it, please pray for that as well.

xoxo

One week Post Brain Surgery 6 of 7

8/7/17

It’s been one week since my brain surgery and it’s literally crazy for me to think that a week ago I was undergoing surgery for something unknown. This entire process has been an exercise in trust and faith and it isn’t over, it’s never over. This song holds so true to every aspect of our family’s journey, with Reagan and now with this new road of my brain surgery and tumor. We are open to invite others to view the journey b/c honestly, there’s no other way we are doing this except with the strength of Jesus. Please know that.

As I’ve been recovering and receiving visitors, the emotion I have the most is thankfulness. So thankful that I am able to talk, walk, eat…that the bad scenarios, even the slightest hint of the possibility of them, didn’t happen. And people say, “God is so good” b/c of that. But let me tell you, he’s still goodeven if this best case scenario didn’t happen.

I stand in my house and I look at my daughter, who is doing things she shouldn’t be doing, but also not as much as she could if her crisis didn’t happen, and God is still good. I have learned so much from her. And now I have this weird brain thing in common with her. Different completely, but we’re both on seizure medications (at least for the time being for me) it’s preventative as things settle in with my brain. As I’ve watched Reagan this last week, one of our prayers for her to be easy, calm, obedient during the recovery has been answered amazingly. She’s turning into a five year old in front of me, and all I can do is watch…b/c I can’t do much else but take it in.

While we brought people into the fold of what’s going on before my surgery, a common sentiment was, “you guys do not need to be dealing with more than you already are!” and totally I can agree and understand that. But man, it is so cool to know God has something uncharted for us, designed exclusively by him, for us to give the glory back to God in our circumstances. It requires trust. And I have learned over the last few years that this verse from 2 Corinthians 4:17-18 is nothing but infallible truth.

For this light momentary affliction is preparing for us an eternal weight of glory beyond all comparison, as we look not to the things that are seen but to the things that are unseen. For the things that are seen are transient, but the things that are unseen are eternal.

God is doing something in our family that will last and to know that he will bend down, and allow affliction, for eternal glory, it makes no sense, but it’s truth. Only God can turn beauty from ashes (Isaiah 61:1-3, I encourage you to read it). It’s why I had it tattooed on my arm when we went to NY earlier this year. I wanted, and needed, the constant reminder every day. Beauty for ashes…that’s the business God is in.

A word on Trust and a shout out to my co-workers

When I chose my word for 2017, it was trust. I wasn’t happy that was the word God gave me, but it was 100% clear it was the word I was given. And I knew, I just knew I was going to have a trial. Something difficult would come across my plate, it’s through adversity that God gives you the opportunity to exercise your faith and trust muscles. The first thing I knew God was asking me to do, was move offices. I felt the change was right, but I didn’t understand all the reasons. Looking back, he was aligning so many things. I’ve added a team member, I am supported in ways I didn’t even realize I needed. The steps that were necessary required trust, action and forward motion on my part. I feel like so many moments of my year have been God revealing more and more of himself, how he cares for me, looks after me and provides for me. The outpouring of support from my co-workers and customers during this time…it’s been amazing. Every one of my customers has been cared for, and everything that has required work has been taken care of on my behalf. One of the prayers the pastors at our church prayed over me was that my business wouldn’t be affected negatively, b/c as a self employed people, it’s something we think of and I was worried. He prayed that the opposite would happen and that more business and understanding people would flood around me. That has continually happened and it’s totally God and an answer to prayer. It’s exceedingly more than I could have expected, another promise from God. Truly I am just overwhelmed and grateful, I don’t think I can ever say thank you enough…and it all started with trust.

My awesome coworkers + my broker, Justin. Shout out to my friend Rebekah for my amazing hat. I wore it literally everywhere!
I work with the best people around!
My team member Abby has been crushing it! So thankful for her and every single person I work with who has cared for me and my business flawlessly.

You don’t always have to understand the why when God asks you to do something, you just have to trust. When he says go, don’t delay. Delayed obedience is disobedience. And man, now standing on the other side of my obedience…I’m so thankful I can trust the one who made me, who loves me and my whole family and who has me covered under his massive wings of protection. I pray you will allow God the opportunity to show you that he can be trusted in your life too.

O-H-I-O

Recently we took Reagan to a new neurologist in Columbus, OH, at Nationwide Children’s Hospital. The neurologist specializes in pediatric movement disorders and was recommended to us by Reagan’s first neurologist, who we absolutely loved and have missed terribly.

It was a big deal to go to Columbus. We had to fly AND connect in Atlanta, which was causing me a ton of anxiety. I was worried about what going through security would be like with her medicines and formula – and what it’s like – is a guaranteed full body pat down of either Rob or me. Her meds are all liquid, all above the max amount you’re allowed to have, and her formula caused alarms to go off, totally comforting that she drinks it, but TSA did not approve it and it had to go through additional testing.  We made it through though, and connecting in Atlanta, while adventurous, was a success.

Rob and I ubere’d for the first time (I know we just stepped in to 2010), it was awesome. We stayed in the Ronald McDonald House (RMH) and evidently the Columbus location is the biggest RMH in the country. That place is a GOD send when your primary purpose is Dr. visits, surgeries, etc. Being able to cook for Reagan, and have meals provided for us, allowed us to focus on the task at hand, which is exactly what we needed, and what all families need who are treading through challenging medical issues with their children. Plus meeting and talking with other families who “get it” is really very comforting.

Reagan hanging with her new baby doll.
Reagan was a fan of Ronald McDonald. She would hop up and give him a hug every time.
Playground on site of RMH.

We flew in Monday, and Tuesday we grabbed one of the many wagons in front of the RMH and strolled Reagan and her Tupperware of medications across the street to the hospital for our appt.


The hospital was massive and was comprised of multiple connecting buildings that took up quite a few large city blocks. Just to give you an idea of the scope of the hospital, there are THIRTY pediatric neurologists on staff, compared to here in Orlando, Nemours and Arnold Palmer Hopsital probably have a combined 8-10.

This photo doesn’t do the hospital grounds justice, it’s about five city blocks with parks mixed in between the buildings.

And guys, this neurologist…he spent an hour and a half with us. He clearly planned to meet with us for a while and was grinning ear to ear upon meeting us. He kept saying how excited he was to have her and us in Columbus. He wanted to hear everything from the beginning and took copious notes and a video of Reagan walking, and of her answering questions we asked.  Rob and I joked that Dr.’s break out the video camera to take patient notes when they can’t believe what they’re looking at. I again asked, as I do of any neurologist who can read Reagan’s MRI: “her entire basal ganglia was damaged, right? I mean, I’ve been told that for three years, you also agree?” He said “oh most definitely yes”, and that she was truly a miracle, that she would never be this far along if not for us, and God. He continually lit up watching her and marveled at her progress as we chatted like we had been friends for a long time.

Our intention in going to this Dr. was to get a long term plan for Reagan. He was really delicate in managing our expectations saying that while Reagan has seen remarkable progress, there isn’t a “medical fix” to her issues. She has a lot of things to overcome, the brain damage is extensive, which we know, her movement disorder will be a life long challenge, but the Dr. and our family are forging a path together to help better Reagan’s life. Our specific plan currently, is to wean Reagan off one of of her medications. She’s on a powerful dose, and in doing the math, if we see no complications or hiccups in weaning her off, it will take a year and a half. The Dr. felt all her meds were the right ones given the history and her progress, he wouldn’t have done it different, but after three years and the progress Reagan’s displayed, we were all in agreement to start the process of weaning on one particular medication.

So that’s the latest update. We are really excited for what Reagan’s future holds and how this Dr. is now part of Reagan’s team. I have to say, Columbus will certainly hold a special spot in our hearts…the trip was more than we could have hoped for. 

Beauty From Ashes

Well November flew by! We stayed super busy and so much happened, I truly don’t know how we’re at the end. Below is as concise of an update as I could fit in. As always, thanks for your prayers and continued support!

Brain Plasticity Therapy

This is a biggie. I know a lot of you were closely following Reagan’s intense therapy sessions at the Plasticity Brain Centers here in Orlando. She did three, hour long therapy sessions for five days in a row to work on strengthening the weaker or more immature areas of her brain due to her crisis. Through a series of exercises, we were able to see amazing improvements. For instance, the light board that she worked on — the first day when she came in fresh, she averaged about five seconds in between each light she hit. By day three she improved almost 50% and by the last day, she improved 58% since day one.

Eye contact – her ability to maintain eye contact really improved. After a visit to her eye Dr., he said she still needs to wear her glasses, and she’s still far-sighted, but our hope is that with continued exercises at home and patching her right eye, that her left eye will gain strength. Either way, she looks so cute in those pink glasses!

Talking/Communicating – this is the area that has taken the longest to come back since her crisis. Since therapy, we have seen an increase in her wanting to try to talk more and we are able to more clearly understand some of the things she says. While at therapy, I asked if she wanted to do something together and she said, “together”. The other day while watching one of her favorite shows, Daniel Tiger, one of the characters said, “I like purple”.  Since this is Reagan’s favorite color, she looked at me, pointed to herself and said, “I like purple, too”. In addition to that, one morning (after a 4 a.m. wake up call) Rob decided to take her to breakfast so I could sleep. He asked what she wanted and she said, “aahh-ffull” for Waffle. Funny that it sounds like awful, because that wake up time is definitely awful. She also said “Mr. Craig” when she recognized the Dad of one of our nannies. Santa has also been a favorite word lately. She says “Anta” and then gives herself a hug…because she wants to give Santa all the hugs. And Reagan has made it super clear that she wants Daddy to take her to see Santa, not Mommy. I’ve asked a bunch, definitely Daddy, not Mommy. At least she’s consistent, and she’s a total Daddy’s girl, which is so sweet.

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Santa 24/7. She’s a helper elf, too.

Eating – We’ve seen huge improvements here. The volume of food she’s consuming is awesome. At the Waffle House she ate 42 grams of waffle. I know 99% of you reading this don’t weigh your kids food…if you do, you’re part of my GA-1 FB group, but that’s a lot of waffle for Waffle House for Reagan. It’s probably a third of a waffle. She’s eating full servings of potato pancakes at a local restaurant in town, she ate stuffing for Thanksgiving and this morning she ate a quinoa breakfast pattie WITH a waffle on the fork. I mean, that’s weird and awesome, I’m so proud of her.

Textures – Guys, the sand and salt water used to literally make Reagan vomit. If it got in her mouth, she would start retching and lose whatever she ate earlier in the day. She hated being in the sand. But now, I can’t get her down to the beach fast enough, and she digs and plays for hours. Four months ago we brought her to the beach and had to leave almost immediately, but now we can actually sit on the beach and enjoy watching our daughter play in the sand or in the ocean.

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Sleep – I mentioned that recently she’s ready to party around 4 or 4:30 a.m. That’s new…so we’re working on stretching that to when the sun rises at the earliest. Until then, we’re drinking a lot of coffee and headed to Waffle House evidently.

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Walking strong!

Orlando Ballet

Lastly, I spearheaded an amazing project with the Orlando Ballet, Nemours and Orlando Health. Below is the video in case you haven’t watched it.

After all of that, I really feel that this verse has been ringing true in my life recently. I’m so thankful that God is giving us beauty in place of the ashes, because for so long it felt like just ashes. I’m sure watching the improvements from the outside is amazing, and you can probably see more than we can on some days. But living in hard moments of loss every day can be tough. So for now, I will take all the beauty The Lord wants to give my family and I’ll pray for heaps more it it.

“To those who have sorrow in Zion I will give them a crown of beauty instead of ashes. I will give them the oil of joy instead of sorrow, and a spirit of praise instead of a spirit of no hope. Then they will be called oaks that are right with God, planted by the Lord, that He may be honored.” – Isaiah 61:3 (NLV)

The Well

God has been stirring in me for a while. There’s a lot I want to share; it requires a lot of boldness, which I know I have, but this feels like a lot even for me.

A couple months ago, a friend of ours told us of a man who has a healing ministry who was going to be in the United States this year.

“He’s coming in July,” Bert said, “and I want us all to go and take Reagan.”

Rob and I looked at each other and immediately said “We’re in!” practically in unison.

So preparations were made, a posse was put together to take our daughter to a man who is known to have a gift of healing.

Pause.

I’m terrified to put this on the blog for lots of different reasons.

What if God doesn’t show up?
What if God doesn’t heal her in the way we want her to be healed?
What if we come home disappointed?
What if nothing changes?
What will people think?

I can’t care about what people think…and maybe that’s the thing that’s driving the rest of the list, other than fear and worry. Worry that I don’t have enough faith or belief.

Mark 19:14-29 has been on my mind. There’s a boy’s father asking Jesus to help his son who is possessed and has been robbed of his speech. The boy’s father is literally at his whits end and asks Jesus to have pity on them and heal his boy, “if you can, Jesus,” he says. 

IF? Jesus repeats it back to him as if his question was as ridiculous as asking if LeBron James can jump high…of course LeBron can jump and of course, Jesus can heal.

“‘If you can’?” said Jesus. Everything is possible for one who believes.”
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EVERYTHING is possible.

1. Walking – a prayer that has been prayed over and over, it has been answered.
2. Eating – a prayer that we’ve prayed and continue to pray. Her appetite for food has never been bigger!
3. Getting off the g-tube for feedings – the feeding pump has been put away in another room and not taken out for almost a month. She drinks all her formula. Some days it’s more of a struggle than others, but she accomplishes it and has been doing it for weeks.
4. Potty trained – I still can’t believe I can write that.

Each time Reagan would do something new, we would praise God in wonder and amazement because it would be another thing the Dr.’s were so wrong about. But, is it too bold to say, we want more Jesus…?

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Should we be satisfied with what’s been restored? Or should we keep pressing in, asking for more, asking for 100% wholeness.

In Mary Healy’s book, Healing: Bringing the Gift of God’s Mercy to the World, she says: “Nowhere do the Gospels record that he instructed a person simply to bear the suffering assigned to them. In no case does he indicate that a person is asking for too much and should be content with a partial healing or no healing.”

Healy goes on to say that when “reading the Gospels one gets the strong impression that Jesus was not only willing but eager to heal.” The scope of his healings were unlimited.


“So the news about Him spread throughout all Syria; and they brought to Him ALL who were sick, those suffering with various diseases and pains, those under the power of demons, and epileptics, paralytics; and He healed them.” – Matthew 4:24

“When evening came, they brought to Him many who were under the power of demons; and He cast out the evil spirits with a word, and restored to health all who were sick [exhibiting His authority as Messiah]” – Matthew 8:16 & Mark 1:32. (Mark 1:32 states a steady stream were brought to Jesus and he healed them all.)

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

“And when the men of that place recognized Jesus, they sent word to all the surrounding country. People brought all their sick to him and begged him to let the sick just touch the edge of his cloak, and all who touched it were healed.” – Matthew 14:35-36

At sunset, the people brought to Jesus all who had various kinds of sickness, and laying his hands on each one, he healed them.” – Luke 4:40

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


Back to my above list of fear and worry. When I look at what God has done, I know that God shows up. I know that Jesus heals. I know that God doesn’t disappoint. And I know that anyone Jesus has an encounter with is forever changed. I point back to what God has done, to know that he’s faithful in everything he does.

Ever since we made the decision to take Reagan to this man with a healing ministry, I’ve felt exactly like the parents in the Bible who brought their children and pleaded with Jesus to make them whole.

Daddy and Reagan

What lengths will a Father go to heal his children? Not just Reagan’s Father, but our Heavenly Father?

I think of Jairus’ story in the Bible; he was a well known and respected leader in the synagogue. His daughter was dying and he pleaded with Jesus to come to his house to heal her. As Jesus began to make his way, another woman who was afflicted with a bleeding issue for 12 years, touched the fringe of Jesus’ garment and was healed. In the commotion of that, Jairus’ receives word that his daughter is dead and his friends tell him not to bother the Teacher anymore.

“Overhearing what they said, Jesus told him, “Don’t be afraid; just believe.” – Mark 5:36

Jesus is like, let’s roll Jairus…we’re going to your little girl.

“he took the child’s father and mother and the disciples who were with him, and went in where the child was. He took her by the hand and said to her, “Talitha koum!” (which means “Little girl, I say to you, get up!”).  Immediately the girl stood up and began to walk around (she was twelve years old)” – Read the whole story here

For weeks, I’ve been thinking of all these stories. And then doubt would creep in and I’d think, “Yeah, but that was Jesus walking on earth, when people could touch his garment and be healed.”

This morning, while I was getting gas in my car the Lord spoke to me and said,

“Does the Lord’s well run dry, Anne-Marie?”

No. It doesn’t, Lord. Your well is never dry, your hand is never far from those who love you. And we are bringing Reagan in faith, and asking everyone reading this to pray for a 100% healing. The thing about faith, is in order to have it, you have to act upon it. We are going, as an act of faith. And further, this is the same Lord who imparted his power to us as followers of Jesus, who gave humans the power to heal, through the Holy Spirit and our faith in Jesus.

Here’s what I am dreaming of…I’m dreaming of Reagan being healed and saying, “You told me God would help me talk, Mommy and he did!” I’m dreaming of Reagan telling people herself, with her own words, how she was healed.

Every night we pray for Reagan to be able to talk. I ask her, “who well help you talk, baby?” and she points to her heart and says, “God” because she knows that’s where God lives, right inside her sweet little heart. She has that child like faith that God values so much and wants us all to have. What if her faith moves Jesus to heal her in an instant? Fully and completely, not just talking, which is what Rob and I want so much, but everything. There’s so many things that were taken from her…we list the big things, but everything is big when it’s been taken away and given back slowly. Wholeness. We want wholeness.

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There are five of us going on this trip bringing Reagan as an act of faith and hoping for a miracle. I feel like the paralytic man’s friends who heard Jesus was in town and four of his friends carried him, for miles probably, so he could be healed. They get to the house Jesus is at and wouldn’t you know, everyone else in town heard he was there too and it was standing room only, you couldn’t even get to the door. So these friends, tore the roof off and lowered this paralytic man right in the middle, right where Jesus was preaching…laid this man at his feet. Jesus was moved by the faith of this man’s friends and healed him.

“But I want you to know that the Son of Man has authority on earth to forgive sins.” So he said to the man, “I tell you, get up, take your mat and go home.” He got up, took his mat and walked out in full view of them all. This amazed everyone and they praised God, saying, “We have never seen anything like this!” For the full account, read Mark 2:1-12 here.

I want Reagan’s tongue to be untied like this guy…

Then Jesus left the vicinity of Tyre and went through Sidon, down to the Sea of Galilee and into the region of the Decapolis. There some people brought to him a man who was deaf and could hardly talk, and they begged Jesus to place his hand on him.

After he took him aside, away from the crowd, Jesus put his fingers into the man’s ears. Then he spit and touched the man’s tongue. He looked up to heaven and with a deep sigh said to him, “Ephphatha!” (which means “Be opened!”). At this, the man’s ears were opened, his tongue was loosened and he began to speak plainly. – Mark 7:31-35

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I know all of these stories are of Jesus healing, so for those who are uncomfortable with other people’s gifts of healing, there are multiple stories in the Bible of the disciples healing people but there’s one story in particular I want to point you to.

Acts 3

Peter and John healed a man who was lame since birth. He’s begging at the church courts, asking for money. Peter basically says, dude, I’m broke, but I’ll give you what I do have. In the name of Jesus, walk.

Acts 4:22 said that man was over 40 years old. FORTY! Surely his entire body was atrophied and his feet were likely deformed.

Peter helps this man up: “Taking him by the right hand, he helped him up, and instantly the man’s feet and ankles became strong. He jumped to his feet and began to walk. Then he went with them into the temple courts, walking and jumping, and praising God. When all the people saw him walking and praising God, they recognized him as the same man who used to sit begging at the temple gate called Beautiful, and they were filled with wonder and amazement at what had happened to him.”

Don’t you think Jesus passed this man on multiple occasions? Why didn’t Jesus himself heal this man? Because Jesus loves to involve those who follow him in building the kingdom of God, and Jesus also imparted the power and gift of healing to his disciples and followers. It’s faith in Jesus that these miracles occur. It wasn’t Peter’s power the lame man was healed. Just like it’s not this man’s power with a healing ministry who we’re going to, but Jesus’ power in him; and I think it’s very important to mention that this man gives all credit and glory to Jesus alone. It’s through our faith in Jesus that Reagan is able to be healed.

You know who else had a healing ministry? Peter. The rock Jesus built his church on. Plain and simple, this is the power of the Gospel, and I need to remember that when we take Reagan for healing.

As a result, people brought the sick into the streets and laid them on beds and mats so that at least Peter’s shadow might fall on some of them as he passed by. Crowds gathered also from the towns around Jerusalem, bringing their sick and those tormented by impure spirits, and all of them were healed.” – Acts 5:15-16

Please join us in praying for a complete healing and restoration of Reagan this July. Pray that Jesus takes command over the things afflicting Reagan and heals her completely. Our requests are not too much for God and his well is never dry.

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It Wasn’t a Detour…

Earlier this week I had a Facebook memory come up…some memories are horrible, and they’ll always be horrible. I don’t like the reminder, Facebook.

This was the memory.

It’s a blog from two years ago, and in painstaking detail, I write about our eight day hospital stay. When I read it, I think: “maybe that’s where we messed up…maybe we should have pushed for this instead of that. This is where things must have changed. Should we have been discharged from the hospital or stayed longer? Would that have made a difference?”

I text the blog and all these thoughts to Rob, but I told him that I already knew the answer. It was God’s plan all along. There wasn’t more that could have been done. I’ve done that dance for two years and I don’t do it anymore. I land on the fact that this was God’s plan for Reagan and for us. Who are we to thwart God’s plans? We can’t change them…Reagan’s days were determined before I was even born.

Rob and I are the only ones who know exactly what it’s like. Yes, we had some family and friends who were there, but Reagan is not their daughter. She’s our daughter.

So Rob sent me these photos as we took a break from work in the middle of the day and decided to take a memory lane detour for a few minutes.  And realize, this is so hard for me, for us, to re-live. It’s hard for me to look at photos of before because, I start thinking we should have done more, and I start thinking that I’m a failure for not being able to save her from what happened. And I start to wonder what sort of things she’d be saying, I start thinking I’m missing out on who she might be.

But that’s a lie. Because this is who Reagan was created to be.

On March 22, Rob played with Reagan outside and captured these photos:IMG_9136IMG_9137

Reagan is strong and healthy and holding a straw with her mouth. She can’t do that now. Everything seems perfect. The sun is shining, she’s got a big flower bow and a shirt that matches the sunshine.

On April 6th, we came home from the hospital, and this is a picture from a video we took in the car on our way home.

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I told Rob that she looks confused, which could be explained by being in the hospital for eight days. And her mouth is open more…this photo makes me wonder, was the damage already happening? Is the reason she didn’t want to drink her bottle because she couldn’t.

The photos below were on April 7th. I don’t even know if I’ve ever seen these photos since they were on Rob’s phone, but I told him that she looks weaker…especially the one of her laying on the blanket. IMG_9142 IMG_9143

Since Reagan wasn’t drinking, we took her to one of the most renowned therapists in the area, Deborah Beckman. And on April 8th, on the DAY she had her crisis we had an appointment in the morning and she said the strength in Reagan’s mouth was that of a four to six month old. Reagan was 13 months, drinking and eating, like a child her age is supposed to.

Looking back at everything like this in a cumulative manner, Rob and I know that these were signs that things were changing. But just because something is happening, doesn’t mean you can stop it. I’ve said it before and it’s true, even if we knew damage was happening in her brain, there is nothing on this earth, short of God’s hand on her, that could ever stop it. There’s no medicine, no machine; there is nothing that could have prevented it.

The hardest photos to look at side by side are the next two.

April 8, 2014 at 5:26 p.m.

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April 9, 2014 at 12:28 a.m.

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What we didn’t know then, was that Reagan had already had the basal ganglia hit to her brain. The only thing we knew was that she had one seizure. The seizure was due to the basal ganglia being completely damaged. It’s like her brain was short circuiting trying to figure things out.

There are other photos and videos. Videos of her flailing that I posted on the blog back in 2014…but this photo gets me every time.

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You can see a million things in my eyes, even though I’m looking away. I was so angry at God. I was so mad and pissed off at him, and I was so hurt and I just wanted things to go back. I felt like I was living in a nightmare, because I was. It seemed like the only time my eyes stopped leaking tears was when they were asleep. And then there’s my mom, covering her only grandchild in prayer and love, and extending it to her only daughter. This photo shows the broadest spectrum of emotions between mothers and daughters.

After we got Reagan’s MRI results, I wrote this blog. It’s one of the most emotionally raw things I’ve written and the only time I’ve ever dropped the F bomb in the blog (I think). I remember writing it at the Ronald McDonald House in a blue room with insanely high ceilings and beautiful wooden beams, located in the the top corner of the building. I wrote it, never re-read it just hit “publish” forgetting all about the fact that I just let that expletive fly. But it was so real and totally accurate to the mood of that moment. Re-reading it, though, there are so many things we were told we would never do with Reagan that we have done! Like take her to pre-school, a regular pre-school, go out to dinner, breakfast, etc. She definitely is one of the bouncing kids when she goes to the hospital for blood draws, and while she’s not talking yet, she tries to talk, she signs, and is using her “talker” device to help tell us things. And she mostly tells us she wants to eat a veggie burger.

Two years.

I can’t believe it’s been two years since her crisis. Seems like yesterday but at the same time, a lifetime ago.

Today Reagan is doing everything we were told she wouldn’t. Walking is certainly one of her greatest achievements…she started at two and a half years old and continues to get stronger every day. She eats, she can feed herself finger foods and use a fork somewhat consistently. She drinks her formula out of a WOW cup, not all of it but on a really good day she can drink almost half. She communicates and she understands 100% of what’s going on. And she’s still got that sass.

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She loves to play dress up and she loves to climb. The coordination in this video is mind boggling.

The prayers that have gone up to God for our child…to say we are THANKFUL for your prayers doesn’t seem adequate. God is so amazing to listen to our prayers and then ACT upon them with healing power because of our persistent pleading. Our specific prayers now are for Reagan to talk, clearly. For Reagan to be able to have the motor planning pattern and correct movements in her mouth. This will help her not only talk, but eat and drink more. She’s a complete miracle child, God’s hand has definitely been working in her body because of your prayers. So please, please don’t stop.

I know this was a heavy blog, but I want those reading to know that Rob and I are in a good place with Reagan. You don’t have to feel sorry for her or for us. Instead stand in awe that God still performs miracles today in 2016 and you all are witnessing it. God’s totally in control and who knows why we’ve had to take, what most would view as a life detour. It’s not a detour if it’s the way God had planned all along.

My girl

Happy birthday, Reagan. Three years ago, we took this photo…it was before we knew anything was wrong with your newborn screening. A few short hours later, we received a call that would change our lives forever

First family photo.

GA-1.

the 20-minute method

Mothers Day Family 2

We worked so hard to never get you sick…

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…but one day, you got sick.

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And we did everything we could do to protect you.

ER check in for visit 2

We spent eight days in the hospital for your first illness, RSV. And then, after we were discharged, two days later you had a metabolic crisis. Your entire basal ganglia was damaged, and you had three seizures.

Reagan hooked up to an EEG. There are about 50 wires under her cap

Dr.’s said you’d never do anything.

Saturday 2

They were wrong.

Daddy and Reagan on hospital discharge day.

Mommy and Daddy were sad, but we determined in our hearts to do everything we could.

fighting for normal

You showed us you were a fighter…

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You worked harder than we could have ever imagined was possible.

Arms up!

Standing with assistance for the first time.

View More: http://dearlyphoto.pass.us/wurzelfamily2014

You taught us new things. You made us get comfortable with our new normal…with a g-tube.

View More: http://dearlyphoto.pass.us/wurzelfamily2014

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You made our hearts live outside our bodies…and made us give our fears to God.

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You have taught us more in your three years of life, than we have ever learned in our 35.

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How is it, that God has used our little babe to touch the lives of thousands of people? Do you know how special you are, Reagan?

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Did you know, God is using you? YOU!! As a witness to His healing power. Did you know…you’re a miracle that continues to perplex Doctors?

Reagan standing with bauer

You took that walker…

Nuts

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And then decided, you didn’t need it.

Balloons

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You have given us an incredible roller coaster ride in the three years you’ve been in our life and taught us more about Jesus, miracles and what life is actually all about.

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You’re incredible. Happy birthday babe…we love you so much!!

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What does he know anyway?

We just got done with our annual 24-hour EEG and Reagan did awesome. Remember last year’s EEG? We were stuck in a tiny room, in our Dr.’s outpatient facility, it was 80 degrees, we had to share a community bathroom with 12 other patients, Reagan exploded out of her diaper in a bouncer and she did not sleep at night, so we left at midnight with our AC full blast all the way home. It was one of THE worst experiences.

So when her neurologist asked us if we wanted to go to the hospital for the EEG or their outpatient facility Rob and I sung in unison “THE HOSPITAL!”

Dr.: Are you sure? B/c the hospital has sick patients, we wouldn’t want Reagan to get sick.
Us: Let’s see…will we have our own room? Our own bathroom?
Dr.: Yes.
Us: Will it be on the neurology floor not with the general population of sick people?
Dr.: Yes
Us: Can we have visitors, take a walk around the grounds when we need fresh air, have food other than the provided lunchables and twinkies at the outpatient facility?
Dr.: Yes.
Us: Yeah, we’re confident we want to be at the hospital.

We couldn’t have even imagined her being as happy and content stuck in a room, in the hospital, hardwired into a wall and computer as she was. She didn’t cry when the probes were put on her head, she was OK with the glue keeping them on, she was even OK with them wrapping her head in whatever it is they wrap it in. The only time she screamed was when they gathered the wires into the sock/sleeve thing. I don’t know what it was about it that upset her so much, but she screamed and held onto me like an octopus.

Reagan played in the water at the sink for hours, she played with the fridge door, she walked around the room and was totally content. She ate well, napped well, played well and gave all our friends that visited and all the nurses and Dr.’s hugs when they came in, and then clapped for herself.

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Night time was the true test since that’s when it all fell apart during the last EEG. Reagan and I shared a twin air mattress and she took up the entire thing. She slept great, but I didn’t fall asleep until 2 a.m. and then Reagan woke up at 3:50 a.m. to laugh hysterically in her sleep. I don’t know what’s going on, but ever since the toddler bed conversion, Reagan likes to get up for an hour or two in the middle of the night, and have laughing fits in her sleep. Not giggles, I’m talking, deep, belly, body shaking laughs. I can’t even be mad, I just wish I knew what we were laughing at. Finally we got to sleep around 5 a.m. and she wanted to be up at 6 a.m. Nope! I just kept telling her to lay down, so she laid on my neck and we snuggled for the next few hours.

How did we make it an entire 24 hours smiling and laughing through it? Rob and I were so amazed at her resiliency, which made it so much easier on us.

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When the Dr. came in to tell us about the EEG, he said it was pretty good. Nothing major, no seizure activity, but some activity typical for children who are developmentally delayed…whatever that means. This is the same Dr. who said Reagan would never do anything, and for us to make her comfortable. I’ll never forget that conversation, where it happened, and even what he was wearing (a tropical hawaiian shirt and jeans). It was one of those conversations that was so defining, so memorable. It terrified us and will always stick with us; it was probably the lowest point of our lives.

So we couldn’t wait to show him the below video and watch him, watch Reagan walk around the room; he thought it was incredible. And he was truly amazed.

I don’t know why I decided to ask, but I figured his answer would have to be more positive, given all that he just witnessed.

“So Doc, now that Reagan is walking…do you think she’ll be able to talk?”

His answer wasn’t much different than a year and a half ago, “well, I think she might be able to say some simple words, maybe some simple sentences, but nothing too complex.”

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What? Did he not just see the video, the walking?

This time, getting that reply was not devastating at all. It was a challenge for Rob and I. Because, that Dr. doesn’t know about our God. Our God can heal her, he is healing her…and she will talk. She will do amazing things, she already is! She is bathed in prayer, she is determined and nothing a Dr. says will change her will to succeed. I think the Dr. is actually very good, but he can manage her meds, read her EEGs and try to keep the seizures at bay, we’ll manage the opportunities we give her to show us how far she can fly.