Every Inch will be a Future Milestone

Reagan is starting to talk more.

It. Is. Amazing.

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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.

Healing.

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

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

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

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

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

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

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

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.

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.