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.

A re-cap in Provision 7 of 7

8/10/17

It’s 11 days post brain surgery and tumor removal. I’ve had a lot of time to reflect on so many events that have happened, not just in the last 11 days, but looking back on all of 2017 and the changes that happened. The thing I have gleaned most is how much I can trust God. How much provision he has, more than we could ever conceive in our finite minds.

Rob and I have had a lot of life shattering moments together and it’s given us the gift of perspective. The road to perspective would never be viewed as a gift though because it requires a shift in your focus and expectations in order to understand what’s truly important. Perspective is a windshield wiper that sorts through noise and distractions in order to clearly see thankfulness in the unknown road ahead, and trust allows the details that haven’t been figured out to just remain where they are. Just because you don’t know what’s ahead doesn’t mean you can’t walk in confidence when Jesus is leading. Maybe these blogs seem like they’re saying the same thing over and over but the amount of gratefulness and thankfulness God has given to me and to our family during this time is the only thing that seems relevant to talk about.


God’s Provision

Nannies: I haven’t mentioned how the weeks leading up to surgery looked, both of our amazing nannies were moving the week after my surgery. One was pursuing her masters at ‘Ole Miss for speech pathology and the other was moving to Tampa for her final internship in obtaining her speech masters degree from UCF. Both were completely available the week of my surgery to watch Reagan 24/7 so Rob could be in the hospital with me. Even when I was home, one was able to stay every night for a week to allow both Rob and I to rest. It was the most amazing last week with both of them and so special to have them during such a crucial time. Rob and I were able to find two new nannies and have them trained prior to my surgery…the new nannies shadowed the ones that were moving on and the transition was a dream. People might think having nannies is crazy, but our counselor told us long ago that it’s what we need in order to have margin in our life. We can not do this alone, we really can’t. And it’s been awesome to watch these young ladies pour into Reagan creatively, teaching her sign language, helping with her talker or art projects and she has flourished. Reagan has been totally amazing during this time, even with all the change. I really hope that she remembers how God showed up for our family. I hope she can see it. She knows mommy is recovering, she brings me blankets and as many stuffed animals that she can carry at a time, water, flowers, hand made cards and she’s been using her stethoscope to check me out.

We are so proud of her and so thankful for the support we have in our family.

My Surgeon: Basically I picked my surgeon b/c he was covered under my insurance. It’s not super easy to find a brain surgeon and the list of approved surgeons on our insurance was limited. After meeting with Dr. Wehman for the first time, we hopped on that train and kept chugging along. We learned along the way that having a dual trained surgeon, one competent in handling aneurysms and tumors would be the way to go, and Dr. Wehman was trained in both. It wasn’t something we thought we needed in the beginning, but in the end, it turned out to be exactly what we needed. He conveyed confidence in all of our appointments in his ability to handle either…it was shocking when I learned it was a tumor and how he described it’s growth and how odd it was. It appears we caught it early b/c if it continued to grow, it could have gone into more important lobes and b/c it was growing skinny like a tube, it could have been missed.

Work: I’ve already given my co-workers a shout out, but every single person I’m working with, buyers and sellers, have been wonderful. I’m so thankful that I’m able to work efficiently and effectively for my customers, AND that I have an amazing team backing me up during my recovery. So. Incredibly. Thankful.

Friends/Family: I literally have the best friends on the planet. They show up in droves during critical times and they’ve prayed for me like their own life depended on it. I’ve felt so much love from all of our friends, family and our church family. God has not left us hanging in any area of our life. I know in my heart I can trust him with absolutely everything going on in my life.

Provision. Provision. Provision. It’s plastered all over us and God is the one that has made sure we are lacking in nothing.


What is God up to? This ride we’re on is nuts, but I’m glad our family is tucked into a little nook under his massive wings. I pray I don’t ever waste the moments He’s given to me.

Thank you for reading and following and praying. I hope that somehow God speaks to you through our story…it’s the reason we share. We can’t be silent about how God shows up for us, and trust me, he wants to show up for you too. Release your tight grip and control and allow God to step in. I promise you will be changed in a great and eternal way.

Brain Surgery Day – 5 of 7

Night before surgery, my prayer warriors came to pray over our family.

7/31/17 – surgery day

The day of my surgery I woke up right to my alarm clock at 5 a.m. and moved pretty slowly through the morning. I wasn’t in the biggest rush to get to ORMC, given what was on the agenda, but when I got there, I was greeted with my praying posse of people. They prayed over me while we waited in the downstairs main lobby and then together we stormed the halls to the 4th floor to check in at surgery.

The amount of people and prayers that I felt on the day of my surgery was completely supernatural. I was more worried about my cerebral angiogram than this brain surgery, and I believe it’s due to the peace that God provided me.

Shout out to my hubs for the photo. Thank you Sami, Lisa, my mama, Brittany and Laura and the two hospital workers who are photo bombing in the back. And Lindsey who was about five minutes behind this photo. All showing up at 6:30 a.m.!

After checking in, I was called back to have an MRI before surgery just to make sure the surgeon knew where to line everything up I presume. Then it was back to pre-op to scrub down and put all my awesome surgery gear on and get a cocktail of medications. Here’s our pre-op photo.

I love this photo of Rob for so many reasons. He looks proud of me, he looks emotional, holding tears back, and this is a total “live out the wedding vow” kind of moment. This is a potential bad and scary time, we’re walking straight into the unknown, and I am so beyond grateful for having Rob. Husbands are not just supposed to be rocks–rocks have no feelings, I can’t get comfortable on the shoulder of a rock if you know what I mean. “Vow moments” get into the thick of it, with feelings, comfort, support and yes strength, but the strength we are receiving is supernatural, not of our own power. That strength is the only way to explain how we’ve been able to get through ridiculously tough circumstances. It’s not us acting strong, it’s God giving us the strength, it’s a strength only he can dish out and it’s immeasurable.

Back to the medical stuff, I had to have so many IVs and I was stressing about those every time they said they needed to do another (I had three all together) The nurses and anesthesiology staff kept saying that the IVs were more daunting to me vs. having my head cut open. But with one in my elbow vein, one in my hand, and another in my artery on the other arm it just made everything seem all the more serious. The anesthesiologist said for these types of surgery, lots of things are monitored, like my pulse and blood pressure were not only monitored from a pulse ox reader on my finger tip, but from my artery blood pressure line. She gave me a cocktail of medications to calm me down and then I began my journey down the hall to the OR.

After moving and positioning me on the operating table, I listened to the surgeon speak to the operating room staff about what they would be doing, how it could be an aneurysm or tumor and how they didn’t know yet. The room seemed somewhat struck by the fact that they didn’t have the answer before surgery, but I felt completely confident in my surgeon and I knew God was in there with me, the room was filled with his presence.

When it was time, the Anesthesiologist came over with a mask and told me she was going to administer the anesthesia. I took a few deep breaths and as I did so, I’ve never felt so much at peace. The feeling of peace and calmness before going under was a total answer to prayer. That prayer was prayed over me that morning and I know for weeks prior to that very moment. As I started breathing the vapor, I knew God had me, he was holding me and I had complete trust that I’d come out OK.

Meanwhile, the waiting room was popping with people coming and going. A friend took this photo of my cheering section and when Rob showed me, I was so incredibly grateful to see all the support that showed up, especially grateful that Rob had a group of people to sit with him. Rob would also get text updates from the OR and share them with those waiting…here’s an example:

No one can quite communicate the feelings of that day, the waiting room or the conversation with the Dr. other than Rob, so I want to allow space for his thoughts here. I am so grateful to have him and for his ability to feel his feelings, be calm and present in moments like this and be exactly who and what I need.

Rob’s account of the day’s unfolding events

Leaving the pre-op room once AM’s surgery team was ready to take her back was unsettling. Thoughts of what this mysterious thing was in my wife’s brain, how long the surgery would take, how the surgery would go, and ultimately how AM would wake up from the surgery swirled in my mind. Would she be the same? Would this surgery take care of everything? Or is this the beginning of something much bigger than brain surgery? (Not quite sure what is bigger than brain surgery, and I don’t really want to find out.)

Upon exiting the pre-op doors, I felt God reminding me “I got this.” I had heard those words the week prior, and leading up to this date I was moving forward with this promise. But once everything got real (the IVs, the medical monitors, the beeps of AM’s pulse, the nurses and doctors), fear started to creep in. I’m certain this is all some sort of PTSD from everything that happened with Reagan and how life was dramatically changed in an instant on April 8, 2014, and I didn’t want to have this date seared into my memory as the day life changed again.

But Robert, I got this.

Alright God.

Entering into the waiting room filled with family and friends was definitely an immediate showing of this promise. There were lots of people in the waiting room, usually only one or two people per patient. But probably a quarter of the waiting room was filled for AM, and for me. I’m so grateful that during this time I was surrounded by people that were there for us and chose not to let the seriousness of the moment consume me. Conversations were had, jokes were made. Even if I wasn’t participating in the conversation, listening to them was certainly comforting and helpful.

Every time my phone buzzed with an update, I would update the room and text those that weren’t able to be there. Getting these updates were both helpful and frustrating. I couldn’t imagine having to sit for the eventual four and a half hours the surgery would take without hearing anything on how things were going. Knowing me, my mind would have begun to prepare me for every possible outcome—the good ones, the bad ones, and the worst ones.

So hearing things were progressing well was certainly helpful, but every time I received an update, I wanted to ask questions back to the OR. Obviously, this wasn’t possible, and that is for the best. The only person that could answer them was the surgeon, and I don’t want him chatting with me mid-procedure. But I still had questions.

The final update I received said “in the recovery room now”, and with that I immediately went to the waiting room’s front desk and asked when I could see my wife—AM would have been so proud of my impatience in that moment. I was told that the doctor would see me first, and then they would come and get me once she was transferred from recovery to ICU and was settled in.

When I was called in to the consult room, I asked my sister to join me so she could write down and remember the exact things the doctor said, as well as be there in case there was any bad news. The doctor came in and visibly looked exhausted, but was in good spirits. He explained that the surgery went well, that the lesion was actually a tumor called a meningioma (thanks Mel, definitely wouldn’t have remembered that) and it was removed, and that is was non cancerous. (Whaaat?!? I hadn’t even considered cancer as being a possibility. Whew!)

Once I had processed that info, I went back into the waiting room to update everyone. Everyone was relieved with the news, but I wasn’t. For me, a tumor was worst case scenario as a small section of AM’s brain would have to be removed surrounding the tumor. What was in that section that was removed? Was it speech? Would she be able to talk? Was it the ability to understand expressions and tone? (Because I speak sarcasm fluently, and that could be a problem.) I had asked the doctor before and again what was in that area of the brain, and the scientific answer he gave to the question is that section of the brain is typically dormant, so she could have a few lobes of the brain removed without any affect. In AM’s case they removed a section about the size of a sugar cube, so there should be no affect. But when it comes to the brain, there isn’t an exact science as everyone is wired differently. Just look at Reagan, being able to move and walk and do lots of other things all requires the use of her basal ganglia—but that was catastrophically damaged during her crisis, however, God has allowed her brain to figure out a way to work around that.

So while everyone found comfort in the news, I was still concerned on how she would wake up. Would it be the same AM that I left in the pre-op room hours earlier? Would she be someone different? If so, how different? All of that would be answered when I could see her and talk to her.

Robert, I got this.

Alright God, if you say so.

Walking into the ICU room was odd. I feel like I should have had more fear or timidity, but I didn’t. I remember boldly walking into AM’s room, expecting things would be okay. I knew she had just started to wake up, so I approached her and began speaking with her. I’m not certain when or what was said, but I do remember making a joke to which AM immediately told me to be quiet and said my jokes weren’t funny.

There she is. Same Anne-Marie. 

Recovery

The first couple of nights in the hospital after surgery were painful. But I had incredible nurses on the Neuro ICU floor and they were able to manage the pain and get me weird cravings like vanilla pudding at 3 a.m. and Rob was on point making sure I had anything I needed.

The morning after my surgery, my neurosurgeon stopped by and said I did great. I asked him how many staples he put in my head and he said, “just enough”.

Dr. Wehman has a pretty good sense of humor and he told me it didn’t hurt him at all doing the surgery so I should be just fine. I can totally appreciate a neurosurgeon keeping the mood light so my first request was that we take a picture together. He told me I’m the boss and obliged. I am so thankful for Dr. Wehman and his skills and I’m happy to be under his care for the next several years as he keeps an eye on my brain. I’d say surgery day was a big success.

Oh and one other thing…I had a closing, while in brain surgery. #bossRealtor #alwaysbeclosing #eveninbrainsurgery

Tim!

 

One day until Surgery – 4 of 7

7/30/17

It’s one day until my surgery. This past week I’ve felt pretty good…the countdown was running in the background of my mind while I kept super busy with work, closings, showings, walk throughs, an EEG and a three hour pre-op appointment, not to mention the extreme patience often needed during Reagan’s v e r r r r y lengthy bedtime shenanigans.

As I sit writing in bed this Sunday morning at 7:30 a.m., I know that tomorrow at this time I’ll have an IV in my arm, maybe going to get a final MRI before I’m given anesthesia and am headed back for surgery. I know I’ll have a small posse of friends who want to pray over me before surgery. We’re all hoping and praying the surgery is successful (obviously) and that we get more confirmation it was the right move. We’ve been given confirmation over and over as we walk toward surgery day, I just feel so anxious thinking about being motionless in an anesthesia dreamland, while a crew in the operating room helps the surgeon with whatever he needs in getting a look at the lesion in my brain.

I’m thinking about when the Dr. comes out to give Rob the news, how he’ll feel, what will the mood be like…will everyone breathe a sigh of relief? I’m praying no terrible news has to be delivered, I pray the surgeon says, “we got [insert whatever the thing is here] and she’s going to be fine. she’s already waking up and acting herself.” I don’t want to give life to alternative scenarios.

Even as we walk through the valley of the shadow of death, we fear no evil, b/c God is with us. Right? I’m saying this to myself now…I was about to write even though we walk down this difficult path, we know God is with us. And then verses I’ve had memorized since I was a five year old kid overlap my earthly words and a higher way and thought supersedes my own.

As a believer, I am so glad and thankful that if for some reason things go unexpectedly, that I’m saved and loved b/c Jesus first chose me and I chose to accept his gift of life, salvation and eternity in Heaven. It’s a gift that we have to accept. I can’t imagine if I didn’t have Jesus, how I’d feel…death is not something I’m scared of b/c of the complete confidence I have in Jesus and in what he did on the cross. If you ever wonder where you’d spend eternity if you die, and you don’t have confidence in the answer, man…GET the confidence by accepting JESUS.

Even though for the last several years things have been really tough for our family and just the opposite of what we anticipated in our minds, I pray that we will come through this hurdle unscathed. And not that we are like Job from the Bible or anything, but we understand suffering, questioning, stomping our feet and ultimately surrendering to God’s plan. I know that if we continue to stick with God, he will reward us, whether here or in eternity. I have to believe it will be both…b/c even when Job went through everything, the last chapter of Job says, “The Lord blessed the latter part of Job’s life more than the former part.”

Maybe one day when Rob and I are 50 years old, we’ll look back on all the trouble we had to go through in our thirties and say, but man, look at what God did, look what he taught us, look how he restored Reagan, look how he moved us toward finding out about your brain when we should have never known. Now I understand…I know God’s ways and thoughts are higher than ours. What he knew was coming in our thirties, now we see here standing in our fifties. That’s why you stick when trouble comes, don’t run, lean in. Do the hard work, rewards are coming for your faithfulness. God has shown it time and time and time again over the course of thousands of years. I want to go with his track record for redemption and success, not my own. We’re sticking with God, with each other, forever.

~Brain Vibes ~ 3 of 7

7/24 & 7/25

I had a 24 hour EEG and decided to channel my inner gangster rapper.

We’re basically twins.

I mean, after all the emotional processing of this whole deal, if you can’t laugh, what can you do?

The purpose of the EEG is to see if any of my brain waves look weird or can explain any of the symptoms I’ve had. It won’t change the surgery or how the neurosurgeon will approach it, it’s just for info only and I have no clue when the results will be in. I feel like I was giving off a good vibe though.

When it was time to head back into public, I decided to take my wire style up a notch, with a man’s shirt and a beanie…in 95 degree weather. Truly making it work, folks.

My favorite part was trying to wash the glue out of my hair. I tried to find coconut oil in my house, it’s gone b/c I don’t cook and when I had the coconut oil I probably let it sit there for years and it expired long ago. A friend told me they used mayonnaise for lice and that worked…seems weird to take your squeeze mayo into the shower. So I opted opted for organic Trader Joe’s Spanish olive oil, it’s fancy and in a glass bottle.

Boy, if you were looking for a “how to get glue out of your hair from your EEG” you’ve just stumbled upon THE solution to help you with that.

Rub it in your hair like this.

Let it soak for at least 30 minutes. If you get a good Bravo show going, it might be able to soak for even longer.

Wash twice and then your hair is super soft and most of the glue is out so, Voila!

There’s just six days left until my surgery and lately I’m feeling pretty good about it. I continue to process how I think things will look after surgery, how I’ll feel, what the days immediately following will be like, but I don’t know and it’s all just speculative. I’ve always loved this verse but over the last 3-4 years I’ve learned how true Proverbs 16:9 really is. It says,

In their hearts humans plan their course, but the Lord establishes their steps.”

I’d add that even though in our hearts we plan a course, the steps the Lord establishes could be in the complete opposite direction of the course we wanted to be on. That’s been a theme in our lives for sure. But I know that even if life looks hard and things seem to be the opposite of what you’d want, that doesn’t mean you’re outside of God’s will for your life. God will place you right into the center of a storm, that is exactly what he did with the disciples, and that can be his divine will for you at that moment. Don’t be afraid of the storm, link arms with the One who can calm it. The one who can give you strength to endure it. The storm will not last a lifetime, I can promise you that. Seasons happen, some last longer than others, but the season will change.

It’s also different for me to not share my thoughts as things unfold, but I really feel like it’s not time. I feel like God wants me to really rely on him and reveal my writing when the time is right. All I know is now is not the time. Keeping this big surgery news to just a small circle is allowing me to lean on close friends, family and God. It’s allowing me to keep the outside noise to a minimum, which is really important to me and something I think God wants. He wants my attention. This time feels sacred in a way. It’s allowing me to trust what I know God says in his word and have that intimate time with Him to allow all of my raw feelings and emotions space to process with God guiding me, establishing my steps if you will.

Every day Rob and I discuss how we’re feeling and all the emotions that are swirling. I’s crazy that these are the steps God is establishing, we know God’s up to something. Our society relies a lot on social media as a barometer for what they should do, or how they should feel based on thumbs ups or sad faces. But in reality, that’s so empty. I am feeling more calm as the surgery approaches and I know that my trust has to continue to grow, and it is. I’m thankful for the action of friends and people in our lives who are showing up. I’m thankful for people in business who have shown incredible understanding, more than I could have ever expected. I’m content in knowing for a fact that God…he’s got me. He’s got our family. He’s got us, and there is no other place we are supposed to be than right where we are.

My brain has feelings 2 of 7

The last few days since getting my surgery date have felt really melancholy. I’m having trauma flashbacks to when Reagan was in the hospital. And maybe this is superficial, but my head is never going to be the same. I liken it to Reagan’s g-tube and her tummy never being the same. It’s never going back to how it was, even if the tube comes out, she’ll still have a scar, a mark, a reminder of a struggle, a really really low valley that we had to crawl through.

That’s what this titanium plate in my head is going to be. A physical marker installed into my body as a reminder of this really difficult time.

Since no one is completely sure of what is in my brain, I question whether I’m making the right decision. I trust the Doctor’s experience and what they’re saying. I believe them when they say: this is not normal, there are risks to not doing the surgery and to doing it. Either way, the lesion is not normal and should be addressed.

I feel like Rob and I have been living in the land of impossible decision making for years. How do you garner wisdom? It has to come through making really hard decisions. Experience in weighing all the options and outcomes and consulting with people who are wise and through prayer.

In a lot of Christian communities we’ll ask each other, “do you feel peace about this decision?” But to be honest, having a total peace about brain surgery at this juncture seems fake. Really, the opportunity I have is to thrust myself into God’s hands and say I trust IN YOU. Not in the Doctors, but in the One who guides them. I only have peace in knowing that God has got me, I’m a complete mess when I think about being wheeled into surgery. Complete. Mess.

It’s early. I’m tired.

We’ve been starting our days around 4 a.m., sometimes earlier. Certainly not by choice, but apparently, Santa needs to be rocked, tucked in, or put into a ballet leotard by Reagan.

Either way.

It’s early, and I’m tired.

And hungry.

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And not amused

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How does she have the strength to pull this chair around the room?

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Can I tell you something that’s strange? Ok great. It’s weird when people tell Rob and I how amazing we are at being parents to Reagan. I’m pretty sure (no I’m 100% positive) that I’ve definitely been swearing the past few weeks when I hear my little clydesdale stumble out of her bed for the day.

If you want a peak into our mornings, this video is accurate.

All kidding aside, it’s my hope that anyone who’s following our story with Reagan knows that we do not have things together. Receiving parenting compliments is awkward because we have no idea what we’re doing. Things are hard, I’m angry at 4:30 a.m. We push forward, but trying to harness a wild horse seems futile to be honest.

Instead of Rob and I pushing each other out of bed back and forth each morning during our wild child’s routine, we decided to take days where one of us is “on” in the morning. The goal is simple, protect the other person’s sleep. This has allowed us to 1. be more thankful for sleep and 2. have a clear understanding that the other person has it handled. The other morning I got up at 3:30 a.m. just waiting for her to greet me. As 4 a.m. rolled around Reagan rolled right out of bed and I decided to stay up, encouraging her to go to bed, but not forcing her. I opened my Bible and continued reading in 1 Corinthians. I’ve been praying so hard for help in figuring out how to parent Reagan while remaining sane.

“What do you prefer? Shall I come to you with a rod of discipline or shall I come in love and with a gentle spirit?” – 1 Corinthians 4:20-21.

For those who know me, I’m not a gentle spirit type of gal, but I’ve been praying for fresh eyes and perspective. Verses with messages of kindness and gentleness keep speaking to me. Going at Reagan with force doesn’t work. She and I are the same; we are both strong willed. And a lot of times, she’s winning because she’s totally awake, and I’m not thrilled (see above photo).

I know our job right now is to continue to press on even while being tested in the fire.

“It will be revealed with fire, and the fire will test the quality of each person’s work. If what has been built survives, the builder will receive  reward. If it is burned up, the builder will suffer loss but yet will be saved – even though only as one escaping through the flames.” – I Corinthians 3:13-15


A long time, before Reagan was born, I prayed that I would have an impact for Jesus. At 30, I felt that I was made for more and wanted God to use me. Rob and I went to church and we were involved, we also made an effort to talk to people about Jesus, we never hid our faith, but we both knew we wanted to have a bigger impact. What we didn’t know was how that would work out. It’s working out through the parenting journey we share with Reagan.

Our pastor recently talked about how life isn’t fair. Of course, here in America…we value fairness, almost above all else. If it’s not fair, we don’t like it.

Our life is not fair. It’s hard, and it’s gruesome sometimes. But here’s what I know: God is not concerned with fairness. The only thing God is concerned with is how to further his kingdom, and He knows which way to further it the most. In our life, it’s with a special needs child. In your life, it could be through another hard walk, like the loss of a child. God uses these unfair things to bring him glory. And people are watching what you do with the tough stuff you’ve been given. I now know how much they are watching.

Recently, a co-worker passed away from cancer. And when I went to the viewing, I introduced myself to her daughter. She asked, “are you the one with the little girl?” and I said, “ummm…yeah.” She told me her mom was watching me as she was wrestling with her new faith in Jesus, and pondering if God was still good, even if the cancer didn’t leave her body. And resolved that yes, he was still good, naming our family as proof. That is humbling.

Rob has always said, “If just ONE person knows Jesus through our story, it’s all worth it”, and it is. I remind myself almost daily that this life is unfair, but it’s also temporary. Heaven is also unfair…we don’t deserve it, but praise God that my office friend for 11 years worked out her salvation in the last months of her life.

We will continue sharing our story and providing a window into our life because if it helps just one person…it’s worth it. And this is our path in life, God has made it clear, this is a way we can make him and his goodness known.

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)

Parenting Bull

I’m convinced that parenting a toddler is one of the most difficult things in life. Add to that the strong will of a bull (can I get an AMEN from parents who didn’t think they’d be trying to discipline a bull up in here?) I think Reagan believes I’m shaking a red flag in front of her face at all times.

Truth be told though, I was really convicted the other day. Maybe it was being forced to stay inside due to hurricane Matthew blowing outside…but inside we had hurricane force winds from Reagan, and I was NOT having it.

“No we can’t go outside, there’s a hurricane.”

But I’m a bull and due to that, I’m uncompromising in nature. I have an unbending, stubborn personality. And just because there’s danger outside, that doesn’t affect my desire to be out there and my will to get out there.

I swear if Reagan could talk those are the EXACT words she’d be saying.

GOOOOOOO TOOOOOO TIIIIMMMMMEEEEEE OOOOOUUUUUTTTT!!!!!

I feel it’s best to yell that at a toddler so they know you’re serious. And also so they can mimick your own attitude right back at you. Like a mirror.

Sometimes being a parent is the worst.

I needed to have a break and I needed some encouragement. So I went searching for this book that Rob and I actually have several contributions to. I’ve had it for months, but never even opened it because…this.

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Refresh. Spiritual Nourishment for Parents of Children with Special Needs is the book and it’s filled with accounts from parents like us.

In one chapter, a mom is recounting a conversation with her husband, asking about whether God gives us more than we can handle. And her husband wisely answers yes. If we could do life without him, we wouldn’t need to call upon him.

The thing about Jesus, is he doesn’t judge me, or my parenting fails, he gives me grace. He gives me what I need, all I have to do is ask him. I have to chose to not do this alone. When I feel like I can’t do this, the author reminded to put “without you” on the end of that sentence. I can’t do this life Lord, without you.

And then, The Lord gave me this to think on: “If I disciplined you, like you discipline Reagan, how often would you want to run to me? How often would you look to me for help or comfort?”

Major conviction. Because honestly guys, I’m rolling my eyes at the tantrums, I’m yelling back, I’m stressing to meet dietary goals and typical milestones, all the while trying to convince Reagan through sheer parenting force that it’s MY WAY or the highway, girlfriend. Best step in line. I want to control it all and I can’t control any of it. Gosh, if God loved us like that, through force, we’d never stop kicking and screaming. God loves us perfectly, his perfect love is how he draws us in. He is perfect in ALL his ways, yet we still kick, push and scream back at him.

I kick because God, you don’t know what im dealing with here in parenting Reagan. Except he does. I’m watching what it’s like for God to discipline me…while I try to parent Reagan. And this is why, this is why I cannot do this, without him.

My prayer is to love Reagan how God loves her. To see her strong characteristics as assets because we need strong willed people like Reagan in this world, they teach us things others can’t. God didn’t make one mistake in making her, or allowing her crisis. And I want her to know that while frustration may abound at times, that I love her and I value her. I value her thoughts, her ideas and I want to foster an environment for her to be who she was made to be. Fully and completely.

Reagan is Going to Brain Plasticity Therapy!

This past Tuesday Rob and I toured the Brain Plasticity Center here in Orlando. We spent two hours talking with them and looking through their facility. It was so amazing to hear testimonials from the staff in regards to how some of their youngest patients have responded to this therapy. The best way to describe what this therapy is in laymen’s terms is that it’s physical therapy, for the brain. Through a series of exams, the Dr.’s can tell what side of the brain is weaker than the other, and what part of the brain needs strengthening.

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Truly this is a pioneering treatment for people who have had traumatic brain injuries. Dr. Carrick discovered and then created this type of therapy…within the past few years he received his third PHD at Harvard Medical School in medical research so he can continue furthering this type of treatment and therapy. Here in Orlando, Dr. Antonucci is the clinical director at the Plasticity Brain Center. Dr. Antonucci worked directly under Dr. Carrick as his right hand man and first assistant in treating patients for many years. These Dr.’s are trained, well educated and are changing lives. We are very excited to bring Reagan.

Recently I was able to speak with Jenna, she’s the mom of James, a young boy from South Florida who experienced a near drowning. I’ve been following her updates for a couple of years on FB, you can check their page out here. They recently took James to the Plasticity Brain Center for a second time this past month. Through our conversation, comparing our therapy experiences and gains for our children, she stated that taking her son to the Plasticity Brain Center has brought about the most significant gains in James. You can’t argue with that, with a family who like us, has gone to hundreds and hundreds of therapy and Dr. appointments.

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That is why we are asking for your help in raising funds for Reagan. After touring the facility, Rob and I determined we would schedule Reagan’s week of intensive therapy. We are scheduled for one week in November before Thanksgiving. We were able to proceed because of your help! Since posting our fundraiser, over $1,500 was raised in about five days, which was exactly the deposit needed to secure a week of therapy for Reagan. You guys didn’t know that, but we felt that was God giving us the green light to proceed. We know God is opening these doors and we are so fortunate to have this world class treatment and therapy center within 15 minutes of our home. We are having faith that the remaining balance will be provided.

There are four ways you can help:

  1. Donate here on our fundly page and help us reach our goal by November to pay for this therapy.
  2. Share on social media.
  3. Attend our painting fundraiser for Reagan on October 26. You can RSVP here and bring as many people as you want; 50% of the funds will be donated to Reagan
  4. Contact me if you would like to participate in an Instagram Auction. If you look at the love_for_Reagan instagram, you will see two previous auctions. One was an auction with handmade items and the other was a sports auction with memorabilia donated. We are open to all donations for the auction.

Sometimes I watch Reagan and just think: “You don’t know it baby girl, but we are fighting for you in so many ways. A lot of people are fighting for you, Reagan…and praying for you too. And everyone wants to see you succeed, everyone wants to see you talk, everyone wants you to prosper into one fiery and independent little girl. You don’t know it yet, but so many people, thousands of people, are a part of your story because they are rooting for YOU.”

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We are so thankful for you all, for your support, your prayers, your time, your donations. Everything.

xoxo