Bonding with a Feral Child

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

When Things Aren’t Actually Good.

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

Here’s what Romans 8:28 says:

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

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

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

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

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

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

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

A 2018 Sunset

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

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

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

I never want to forget


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

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

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

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

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

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

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

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

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

Asking to play with her friends by name.

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

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

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

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

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

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

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

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

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

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

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

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

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

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

Reagan saying Obama for umbrella.

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

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

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.

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.

Never Backwards

On Tuesday I drove down to the medical records department for Arnold Palmer Hospital. It’s been three years since Reagan’s crisis and I remember so many specific details from that time.

Driving down the 408 toward downtown, I started getting teary-eyed. I remember driving down here with my neighbor while Rob rode in the ambulance with Reagan.

I remember walking around the lake in front of the hospital, moving from waves of despair to hope.

“I need to get some medical records.”

The gal points me to a clipboard with the pen that’s married to it and tells me to fill out the highlighted sections. It’s amazing to me, that here in this building, a block from the hospital, my daughter’s file sits. All the information from her stay, it’s right there. I feel like I’m a Jeopardy contestant: “What are the medical facts from April 2014?”

I paid $6.92 for a CD, that has MRI images of Reagan’s brain damage; looking at those images and hearing the results changed our lives forever. All the worst moments of our life are from that hospital stay, and this little disc of records has every note and image compartmentalized in folders, written in a language I don’t understand. That records department keeps the facts from cases that go in and out of that hospital, telling a story on paper, but never the full story.

When I left, I drove around the hospital complex, looped around the Ronald McDonald house where we stayed for weeks, and I allowed myself to feel grief for that time, thankfulness for now, and went home. Mentally I was purposeful to remind myself, Reagan’s crisis is not her identity. Her abilities and disabilities, that’s not her identity either. Those records do not define who she is. It’s part of her story, part of our family’s testimony, but not our identity.

God’s been teaching me a lesson in identity recently, and that is, that my identity is not wrapped up in my abilities, my performance at work, how I parent, how I am as a friend or a wife, and my identity is not in my successes or failures. My identity is in Christ and because of that, I have the ability to surrender to his purpose, his will and his love. Surrender in this sense is not being weak, it’s being free. Free to say, “Ok God, that didn’t happen how I would have hoped, but I know you have me on the best path for your Kingdom.” If my identity is in my sales numbers, what happens if the market goes south? If my identity is wrapped up in my performance, performance of my friends, family, Reagan, then I’ll need everything to go well to feel valued, to feel a purpose. That would be incredibly exhausting.

I know that God causes everything to work together for the good of those who love him and are called according to his purpose (Romans 8:28). Having your identity is in Christ, allows a more peaceful life, regardless of circumstance. This is what I’m striving toward, I am (continually) learning to trust that God has my best in mind and that his purpose for me was determined before I was ever on this earth, and his purpose and will is what is best. I have to trust that, because what my eyes see and what I understand are not the same as what God knows.

Parenting Reagan has been my biggest challenge and lesson in trust, humility and surrender to God’s purpose. Of course I can look at Reagan and know that her identity is not in her crisis, she is so much more than her struggles and achievements. She was made for identity in Christ too, and she was made for us to watch God restore her! He’s used such a terrible thing, and repurposed it for his glory, that’s what God does and only he can do it.

Never backwards. Always forward. Always.

It’s currently our family motto. Because living in the past and in the what ifs, is not the abundant life God talks about for us, or for anyone. Living with our eyes fixed ahead and up, is the direction God is leading anyway. Never backwards. Always forward. Always.

 

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.

Can I be Honest?

Can I be honest for a moment? Life is hard. Not just our life, I know yours is hard sometimes too.

Let me tell you about this photo.

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It’s perfect.

There’s nothing about this photo I wish were different. Her smile is straight, she’s sitting up nicely, she’s confident, her outfit is on point…it’s just perfect.

What you don’t know is I took 200+ photos in several bursts on my iPhone. A couple turned out good, this one turned out perfect.

Life isn’t perfect though. Sometimes you’ll do something 200 times before you get it right. We as humans mess up countless times in a row, but then something beautiful happens, something comes together. A moment. A good one, and then all the other difficult moments of the day fade away because the good and beautiful moment can carry you farther than all the hard ones.

And hear this clearly: no one’s life is made up of perfect moments. My day is often a series of difficult, imperfect and sometimes gut wrenching moments that require strength that only comes from above in order to get through…and He gives me these moments, these perfect moments from Heaven to tell me that He understands and that He will sustain me to get through. This photo yesterday, that moment with Reagan, will carry me farther than the difficulty of our day to day. It will sail over my worry of the future, because it came from God and when He steps so gently into our chaos, I know…I know I will be OK. You will be OK too.

xoxo

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.