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.

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.

De-emphasizing GA-1

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

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

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

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

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

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

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

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

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

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

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

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

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

I could have cried when Dr. Strauss said that.

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

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

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

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

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

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

What now?

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

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

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

Mountains are Rocky

Ok, so I know the last blog was about making it to the mountain top, and yes, the metaphors that go along with that and our life are poignant, but it dawned on me, that mountains still have rocky terrain. You’ve got the view and perspective of where you’ve been when you get to the top, but it’s not smooth walking.

That is life in general. It’s always an ebb and flow. There’s always an up and a down. Always emotional swings. Small humans have a wide range of emotional pendulum swings.

I mean look at these two photos.

This one says: “Holy COW! We’re on a gondola, in between mountain ranges! We’re at the top of mountain!”

And this one says, “I’m freaking tired of walking and I want to cry.”

You know, the conversations we had with Reagan on the mountain top were along the lines of you need to stop complaining.

Thank Heaven that God’s not like that with us. When we say: “But WHY do I have to go through this? This is hard. I don’t want to keep going. I quit.” God just sits there with us. He gently guides us through.

I lack gentleness in general. I’m all, “Get moving and stop it. We’re here to have FUN!” And Reagan tries her hardest to say CHEEEEEEEEEESE in all our photos with her entire body, or refuses to look at the camera all together.

Many of us are striving for “mountain top living” however our thoughts on what that looks like I believe are skewed. You’re not free from the struggles of every day life when you’re on the mountain top. Your location doesn’t alleviate you from having to do hard things. Everyday life still happens, the view is just different.

Across the World

Four years ago, if you told me that we’d travel to another country WITH Reagan, I’d say you’re crazy.

But here we are, on top of mountains, doing things we never even dreamed our family could partake in.

This trip is exceedingly, abundantly more, than we could have ever imagined. Guys, there’s snow, in JULY!

We’re in Whistler, Canada. We went through customs with Reagan. We flew almost 8 hours and drove 2 1/2 hours to get here. We took two gondola rides, on cables, above mountain tops to get here.

I’d like to point out, it’s not just any gondola ride. It’s the Peak to Peak. It’s the longest gondola ride, almost 2 miles, and the highest lift of it’s kind, with an elevation of 1,427 feet. It’s some sort of record. Which is ironic because I feel like we’ve broken a life record just to make it here.

As I looked across the horizon and over so many gorgeous mountain tops, I couldn’t help but think about how far away we are from what we’re used to, and how scary that can be if you’re a parent to a medically complex child.

I am SO proud of us.

Am I nervous? Yes!! I keep wondering how we’re going to help Reagan meet her food goal by winging it, especially on top of a mountain. Evidently Canada doesn’t want to forget their vegetarian friends because lo and behold, there was a veggie burger just waiting for us after our first gondola ride, in all of it’s quinoa glory. I was shocked.

Can I tell you an honest truth? If you’re in a tough spot in your life right now, I know and I understand, that you don’t think a mountain range is in your future. The climb might be arduous. No, it will be arduous, it’s a mountain top we’re talking about! But you can make it there, God will help you. And boy, when you do…it will it be exceedingly, abundantly more than you could have imagined.

We literally made it to the very top of a mountain with our daughter today. I’m amazed.

Taken

When everything is taken from you and your normal is shattered, it’s impossible to know where to start to put the pieces back together. Especially at the beginning. Once you begin getting the shape of your new normal, a piece falls off. Maybe it wasn’t meant to stick. Maybe the glue that was holding it together was weak. Maybe it was supposed to happen later, or never at all.

So you try to fix it, but then the hassle of making it fit your way is too much. You leave it behind.

And you journey on. Hoping to find a new thing that will help to shape and heal. The goal is always to restore what was lost.

When your world is upside down, you’re exhausted and determined.

Relentless. Unyielding.

This contest for a free week at the Plasticity Brain Center is that relentless pursuit. Everyone I know, and people I don’t who have watched Reagan’s story for five years are voting and sharing and pleading.

And.

I see another mom fighting for her daughter. Every family member, every friend, anyone who has heard of their story is in pursuit of this one thing. Seeing our children plateau is not an option.

The thought of it not coming to fruition is too much to bear. For her. For them. For me. For Reagan. For us. For everyone who is voting. Everyone is taking this on.

You see, the thing is, when something is at your fingertips (and I know this contest isn’t over yet) you can’t bear to have it slip through your fingers. You already experienced that when the traumatic thing happened. Everything slipped away. And you and everyone you know is bound to never let that happen to you. Not this time. Not again.

And that is why, whenever this contest is over, no matter who wins, Rob and I have decided, and it was confirmed through another friend, that everyone should have this opportunity.

Last time we went to the Plasticity Brain Center, we fundraised. Fundraising and asking for monetary help again, well quite frankly it can be exhausting. The truth is, while so many continue on a normal path, as they should, we are still fighting the fight we were given five years ago. We’re working on talking in sentences, riding a tricycle, eating more diverse foods. I’m worrying about Reagan having friends because talking is difficult. And this other mom and family, she has worries she never thought she’d have to face and choices and decisions and medical expenses.

|Side note| The NFL draft and all the inspiring stories of these children who fought adversity and now as adults can talk about their journey to the top, it’s incredible.

Reagan at UCF. #futureknight

That’s what I want.

The other night I cried watching one of those SportsCenter stories, wondering if there would be this amazing overcoming story that Reagan will tell as an adult. Like when she can actually use her words and say, “My Mom and Dad, were relentless in their pursuit of my recovery and because of them and everyone they knew, and even through the generosity of strangers, I can stand here and talk. I can stand here and, you name it.”

Reagan doing Special Olympics Young Athletes

Sunday night, a friend emailed that she and her LuLaRoe consultants would fundraise for the two finalists who don’t win. My goodness, as of this writing, there are 20,000+ total votes. If everyone gave $1, the two remaining finalists could attend this amazing therapy, FOR FREE. She reminded me that generosity never ends and that’s because love never fails. So as we are crawling, there are those who will say, “take my hand, let’s keep going.” And that willingness to hop alongside, to run a race they weren’t given, it blows me away.

When this contest is over, we will share the fundraiser. And perhaps, any additional funds raised over the cost for two people to go, we can start a scholarship at the Plasticity Brain Center for people who desperately need the care, but are unable to afford it.

I’m reminded of the amazing people in my community, people I know and people I don’t. And I’m thankful.

What a Difference

What a difference a year makes!

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

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

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

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

Three years ago

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

Today

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

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

Seasons

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

 

Being Different is OK

One Year Ago.

Part 2. Exactly one year to the day.

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

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

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

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

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

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

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

Most recently it went like this:

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

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

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

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

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

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

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

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

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

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

xoxo

just brave enough

Ever feel like you’re just surviving and hanging on by a thread? Yet somehow you muster enough strength to get to the end of the day, collapsing at the finish line, staying asleep there, only to wake up at the beginning of the race come morning?

This feels like my current life stage, it’s my hamster wheel.

But I don’t want to just survive life. I want to LIVE it. I want to notice the beautiful things that each day holds, not just the tasks and goals that are a part of our life. Weighing food, dispensing medicine and working on things with Reagan is part of our daily life. It’s not ALL of our life, even though some days it feels like that’s all our life consists of. There’s more to it and I want to highlight those moments. I don’t want to pretend the hard stuff doesn’t exist, but I want to notice the lovely and be thankful for it.

she’s so proud she can Relevé

Thursday Reagan has another surgery. It will be her fifth time going under anesthesia. She’s not even five. Her g-tube is stuck and no one can get it out so it has to be surgically replaced…surgery is also the safest option we were presented with.

I’m determined to find a way to abundantly live in this reality and not just exist. When Reagan was born and we got her GA-1 diagnosis, I kept saying to myself, if we can make it to five years old unscathed, she’ll be OK. The severity of her disorder goes way down.

And now I wish I had paid more attention along the way instead of walking a tight rope, looking down at the scary things below. The scary things happened and I kept looking down, trying to avoid more bad things that could happen if we were to fall. I fight to be just brave enough so fear doesn’t win the day.

And let us run with perseverance the race marked out for us, fixing our eyes on Jesus, the pioneer and perfecter of faith. – Hebrews 12:1-2

We are ordinary exhausted  parents trying to do extraordinary things for our daughter who needs us to stand, not collapse at the finish line; she needs us to keep looking up at Jesus so we can show her we are living not merely existing.

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.