A Running “Thing”

I have always wanted to have a “thing.” You know, that one thing that makes you stand out or gives you individuality. Like when people say, “What do you like to do in your spare time?” And you have an actual, interesting response. Or when you have to fill out those doctor’s office questionnaires and after you debate over how honestly you want to answer the exercise frequency question, you stumble across the “What do you like to do? What hobbies do you enjoy?” I always hated those questions. First of all because inevitably the exercise question would make me feel terrible about myself, and then I could never seem to come up with something for the other questions other than “reading, cooking….” So lame. At least that is what I would tell myself, every. Single. Time. And then there are those times when I would meet someone for the first time and would be thrust into that introvert’s nightmare of small talk. They would ask me to my face: “So what do you like to do?” And my response something like, “Umm, I… uh like to…. eat pizza?? But I’m gluten free…so I don’t know…” And every time I would answer this question, or something of a variant, I would find myself walking away feeling defeated, lame, and passionless. Believing that really, I’m just boring. In fact, I remember one of my friends in college once telling me she thought she was boring, and I was excited that someone else felt the same way I did! We would laugh about it, but in the back of my mind I would think that she may think that, but she is really not boring. I am the boring one.

Its not that I have never wanted to do something. To have a “thing.” And a lot of times it wasn’t because I didn’t try! In high school, my best friend was in color guard. That seemed fun, and she did it so I decided to try out. I didn’t even make first cut. But the next year rolled around and I practiced for hours the try-out routine (I believe to some Fat Boy Slim “…right about now, the funk soul brother…” anybody??) in my garage. (#90sgirl) Only to strike out again. Fail. Then there was the time that I tried out for girls basketball, unaware that an actual game consists of two baskets, not just one like when we played in P.E…. I’m guessing you can figure out how that one ended. One time I even decided running track sounded like fun, so I started going to practices and I believe shortly after the yearbook photo was taken, I quit. Those sprints gave me side pain… In fact, I quit a lot of things. To the point that at times, I thought that quitting was my thing….

So here I am in my mid-30’s, still struggling with those same questions. Except it never really consciously occurred to me that they were such a struggle for me until recently. I never really stepped back and listened to my own thought process and the things that I was telling myself. They were tiny whispers in the recess of my mind. For years I have been reverting back to these thought patterns, apparently on quite a regular basis. To the point that recently when I decided to dig deep and walk through some spiritual healing, I realized I had been letting these thoughts define what I think of myself ever since I can remember. Thoughts like, “I cant. Defeat. Just give up. They wont take you seriously. Loser.” Just to name a few. And it began to take my breath away when I realized just how often these thoughts were actually at the forefront of my mind! Just hovering over every life circumstance, in every day life. As though someone was nearly constantly whispering these lies into my ears.

Pause for a moment and step back about a year ago after an insanely intense year medically for Rylie. I was dealing with post traumatic stress among other things. During her 6^th hospital stay that year, I sat there and thought to myself, “I am going to run. I am going to run, because my daughter can’t. I will run for her, and I will run for me to therapeutically work though all of this.” And after we got back home for a while, I put on some active wear – because I was going to run. *Disclaimer: I refuse to wear “active wear” in every day life. It must serve a purpose if I am going to wear it. * Anyhow, I threw on my clothes, and despite it being barely 40 degrees out that day, I ran. I ran until I couldn’t run anymore. Then I came home, collapsed, and decided I would do this. I had certain goals I wanted to meet and friends who were encouraging me in the process. “I can do this,” I thought. And then shortly thereafter, there were some insensitive words spoken to me about my feeble efforts to reach these goals. And looking back, I don’t know that the words were directly intended to harm, but I absorbed them, and cried over them, and I didn’t run again that year. I think maybe in some way because it was like the words in my head were spoken out loud. 

That was a year ago. Then this last winter I found myself walking through a different season of more life altering diagnoses for my already medically fragile daughter, and the deep pain that comes with that. Feeling like I needed some sort of stress relief, I started to say out loud that I should run. It was the only thing I could think of that seemed therapeutic and that would maybe help me clear my head from the chaos. And yet I kept saying it for a while, without actually doing it. Shortly after, is when I began walking through some spiritual healing as I slowly looked deep into my soul and realized all of the lies that had been lingering there for so long. Lies I was telling myself daily, and things I believed to be true about myself. None of these things were even close to lining up with what Jesus thinks of me!! And so one day in the midst of all of the painful lies that I was working through, and learning how to let Jesus heal me from it all – I had got the kids off to school and I thought- I’m going to go for a run! I threw on my sweats and shoes, and ran out my back door. I ran. And as I ran that morning, Jesus almost audibly began bringing to mind every lie I had ever believed about myself. Every lie I had made up. Every lie I was told about myself. And with every painful step I felt release. I made it back home and sobbed. It was release. And there was something very powerful about the spiritual healing that was taking place, in the midst of me trying my hardest to run. Because let me tell you, when you are 35, and the number of degrees outside are the same as your age, and you go for your first run – you think you just might die. In fact, I had to wait like 3 days just before I could run again because my shins were SO sore!!! Ha! But I ran again. And again. AND AGAIN. And the more I ran, the more I pushed myself physically, the more beautiful the balance between spiritual healing and physical perseverance became. For the first time in my life I pushed myself physically to go further, to push through the pain, and to work towards an ultimate goal. I decided I would train for two months and run my first 5K held where Rylie goes to therapy at United Cerebral Palsy. It seemed fitting.

Thing is, I never knew the amount of effort that went into “just running.” The planning, the discipline… And the thing is, I realized I never had a “thing,” because I had never really put the effort and discipline into any one thing. And the thing is, I always wanted a “thing” for me. Not for Jesus. Honestly, because I have struggled to solely find my identity in Christ. I think I have just always been on the search for what defines me.

Today, I ran my first 5K. Today I finished my first race. My goal was to run the whole race, no matter how slow without stopping. To finish well. There is a lot of symbolism that can go along with that. But running has brought to light a whole new understanding for me of life, and running this race. And just as one cannot simply wake up one morning and run a marathon without training, so also is this life in Christ. It has given me a deeper level of understanding, in how I have to choose to discipline my time and choose to dig deeper into His Word and choose to only believe what Jesus thinks of me, and not to believe those lies anymore!

And while maybe I could finally say I have a “thing,” because now I run, instead I will run because, Jesus. I will run because of His grace, mercy, and unconditional love for me that I have realized in a whole new way. I will run because of the way Jesus uses the pain and perseverance of physical running to reflect my own spiritual journey.

I will run because I can, because my daughter can’t, and because of the beautiful way Jesus is bringing healing to my soul as I run both in body and spirit.

From Hebrews 12: 

…”let us run with endurance the race that is set before us…” 

 

Summer Mourning

When you hear the word “summer,” what are some thoughts that instantly fill your mind? For most of us, it is probably most relative to the way we spent our summers as a child. Because good childhood memories are the building blocks for what we often expect and try to recreate as adults. Swimming at the local pool, beach vacations, and lazy summer afternoons waiting for the ice cream truck. Or going out for slushies after a trip to the library with no need to be on time for anything because there is no schedule. For most, it is probably correct to assume that the word “summer” instantly connotes “fun.”

This summer I wanted to have fun. I also wanted to have fun last summer and the 9 summers before that. It did not occur to me until this summer, that every single year I have been trying to recreate something or fulfill this summer dream of mine that has yet to have been fulfilled. In my final twitches of winter each year, as I desperately check the weather every day yearning for something above 40 degrees, I can already start pre-planning in my mind and making a mental list of all of the things I want to do when it is summer! My heart skips a beat as I can hardly wait for all the sunshine and unscheduled time we will have on our hands. All the trips to the pool, soaking in the sun, zoo trips, dollar movies and the library and…. Just SO much fun to be had!

And then… it is here! SUMMMMMEEEERRRR!!!!! And then the first day after the kids are out of school, and I’m all like- whaaaaaaaa?!?! Just to give you an example- the day I began writing this post was smack in the middle of summer and was supposed to be a nice laid back, run to Target – And let me just pause right there and ask you please do NOT feel the need to lecture me about that. I am fully aware of the controversy, but unless Target gets rid of their handicap parking, I will continue to shop there because I love Target and pretty much the only thing these days that really gets me up in arms is illegal use of handicap parking so… That is all. But as I was saying, we (the kids and I) were going to run to Target, then the library after lunch where I was going to bring the laptop to type something. I was not exactly sure what, but just that I needed to therapeutically put something into words and I know my kids can be temporarily entertained with our library’s xBox. So I will tell you, I was sitting there, uber frustrated and about to literally pull a chunk of my hair out. Because? “The game is not fun and I don’t know how to play.” And Rylie is not satisfied to sit there quietly and watch him play the stupid game. AND…. I just needed a minute!

See, summer in our home is not so typical, and I find myself putting a lot of mental effort into how to just create a lazy summer day, because up until this summer, I have subconsciously tried to recreate what I imagined the perfect summer to be. While my daughter is generally a happy child despite her extreme physical limitations, she is still cognitively able to become bored just like the average child. Except with the average child, they can express they are bored but really do not have an excuse if they have a physically able body. Since my daughter does not, this boredom is my responsibility because she can literally do nothing independently. And because I am not okay with her watching 18 Disney movies a day, I have to put real effort into helping her engage in her world. So let me be real frank with you right now: this summer, like every summer before it, was NOTHING how I imagined it would be. And honestly I’ve been pretty darn cranky about it. Then I suddenly realized that I was so frustrated because I had unspoken, super unrealistic expectations of what I wanted summer to be. I wanted it to be like the summer I grew up with. Except, that the summer I grew up with was with an average able-bodied family. And I had the fortunate opportunities of going swimming the majority of the summer and taking super fun vacations with my family. It’s just what we did, and that was what summer was when school was out. Its what we expected. And then, without realizing, I let those subconscious expectations rule my attitude every single year until this summer. I have let every summer become an ultimate disappointment and end in me drowning myself in guilt-ridden thoughts about how I failed to bring my kids all the fun. And even though, in every other aspect of life I have adapted and overcome, and accepted that our lives are just simply not like everyone else’s, somehow I missed it with my dream summer expectations.

Do you want to hear something abominable? We did not go swimming this summer. Not once. Hudson managed to go with friends a couple of times, but that is it. I felt embarrassed to tell people this. We have been to the zoo once this summer with our membership, and have made it to none of the $1 movies at the theater. Up until now, I had translated this as utter failure for our summer, and I felt depressed and frustrated because we were not having all the fun. Summer is also our busy season for ministry, so there are no vacation days for our family and Daddy is very busy. And realistically, my 65 lb daughter is wheelchair bound and requires a schedule of meds, diaper changes, and daily medical procedures, which means an afternoon at the pool is officially a physically impossible feat for me to take her by myself. And when you account for the fact that her meds cause sun sensitivity even with sunscreen, even a simple mid-afternoon trip to the zoo suddenly becomes a bit of a stressor.

So, I’ve taken a minute to sit back and reflect on what we HAVE done this summer. And while it included Hudson attending some free afternoon camps through our church, and raiding the ice cream truck a few times, we actually ended up spending a majority of our time with our friends who are from other countries. We have shared new experiences with our friends, and in a sense, visited other countries simply by walking into their homes. And if visiting other people’s homes that do not call America their first home counts as visiting other countries, then we have visited at least 3 other countries this summer alone!

So I have begun to meditate on these thoughts and began to feel encouraged about the fact that my kids have had experiences that I had never dreamed of having as a child, and did not even have myself until I became an adult. And because of their innocence and natural childlike faith, they love whomever we love, and befriend whomever we befriend. They do not easily judge and develop prejudices. These behaviors are learned, and if we are not displaying them then our children are not going to likely display them either. But even still, after I began to be thankful for the fullness of love that we experienced this summer, that little nagging voice was asking me if I really thought I was doing this thing right….

Then one day on the way to one of Rylie’s therapy appointments, there was a homeless lady standing at the end of the interstate ramp with a sign. Hudson is sitting in the front seat and quickly says “Mommy we need to give her something quick!” He knows in the past we have given a water bottle or something tangible out to someone in need, but at that moment we did not have anything in the car. Now this was a reoccurring appointment for Rylie over several weeks this summer, so we saw the same lady standing in the same place every day. Hudson reminded me a couple more times over the next few days after seeing her, that we need to get something for her. Honestly, it was not my priority at the moment, and while I had good intentions, I inevitably would forget to get something to bring. So one morning, as I’m getting Rylie ready for her appointment, Hudson comes in with a grocery bag and asks me to look. He had gotten some snacks together and asked if he could fill his water bottle and give it to the lady we see every day on the corner. I of course told him that would be great! We approached the end of the exit ramp that morning and handed the bag out the window to the lady. She thanked us and Hudson waved and we went on our way. “That made me so happy Mommy!” he commented. We talked about why it made him happy, and how Jesus wants us to help those in need what it means to love.

You see we spent a majority of our summer in the homes of people who are not just from other countries, but who are refugees that have been given the nearly impossible task of trying to figure out how to just survive in this crazy land of America. Learning a new language, a new culture, and basically starting your life all over in a foreign land can be quite daunting. Jesus filled our hearts this summer with a love for these people and we were able to serve them in both tangible ways, and relationally. Jesus gave us a desire to build relationships with these people with no expectation except to love them as He loves us. And in turn, the new friends we made have probably impacted our lives more than theirs. They have taught us so much about life!

So it took me a while, but I eventually got the moral of the story – the day Hudson packed snacks for the lady on the exit ramp said it all. It was an overflowing of what we had been doing all summer. Loving people in tangible ways and pouring out what we could, where we could. And in that moment, I had a powerful parenting realization: I can tell them and preach to them, but at the end of the day my kids will follow me. They will mimic me. And my passions will naturally become their passions. It’s not something I could teach in a classroom setting. It can only be done by living life with them, and allowing them to experience the world and ministry through the eyes of Jesus. However, I have to be the one reflecting Jesus. And it gave a whole new meaning to the phrase, “Actions speak louder than words.”

I will tell you, there have been plenty of parenting moments where I have had that whole mimicking thing come back to haunt me, whether it be that snide facial expression or muttering under the breath that is such a stark reminder of my sinful nature. And I assure you I am far from ridding myself of those regrettable moments. But when Jesus gives you that beautiful moment of encouragement and allows you to have a peek into your child’s heart in such a raw and honest moment, you come to that complete reality of what parenting is all about, and the responsibility resting on us to get it right. But to also realize, we canNOT get it right without Jesus. Period. Our children will naturally follow us. So we need to get serious about the time Jesus said “Follow me,” and recognize that if we are focused on just that, then our children will naturally follow suit. So when I began to think of how it is most important to just follow Jesus, instead of worrying if I am screwing up my children, it lightened my burden because He will take care of the rest!

So while I mourned for a minute for the summer we didn’t have, in the end I realized that “fun” shouldn’t be my ultimate goal. Because actually we did have all the fun, it just looked really different than what I had anticipated! Honestly, fun alone can also become very self indulgent and narcissistic. And while that might sound uncomfortable, “fun” is not something I remember being mentioned in the Bible. Love, and joy and peace and patience… and kindness and goodness and faithfulness… and gentleness and self-control. Those are all in the Bible, and these are things we should strive to be and do. Because they are Christ-like. I’m not suggesting that it is wrong to have fun, but that perhaps we should stop to think more often about whether or not it is something that is going to reflect Christ and ways it can turn into an outpouring of His love.

Ephesians 3:14-19 (ESV)
“For this reason I bow my knees before the Father, from whom every family in heaven and on earth is named, that according to the riches of his glory he may grant you to be strengthened with power through his Spirit in your inner being, so that Christ may dwell in your hearts through faith – that you, being rooted and grounded in love, may have strength to comprehend with all the saints what is the breadth and length and height and depth, and to know the love of Christ that surpasses knowledge, that you may be filled with all the fullness of God.”

May we all as believers strive to be rooted and grounded in the love of Christ, so that we will know the love of Christ, and in turn allow that love to overflow unconditionally to every person in our path. ❤

 

 

 

 

 

Let It Go

“And everything in time and under heaven
Finally falls asleep
Wrapped in blankets white, all creation
Shivers underneath
And still I notice you
When branches crack
And in my breath on frosted glass
Even now in death,
You open doors for life to enter

You are winter”

-Lyrics from “Every Season,” by Nichole Nordeman

We awaken to a quiet room today. Extra quiet for it to be the hospital. We both slept amazingly well, and things are looking up as Rylie has seemed really well since yesterday. As I slowly head down the long hall towards the elevator to get my morning coffee, I glance out the glass doors to see fresh snow falling. My initial thought is “ugh.” As winter is typically my least favorite, mostly because of the traumatic experiences I have had in the past in this bitter cold season. Like the time Hudson and I were paying more attention to our rap skills to that Grits song in our van when I hit the black ice that slung us across two lanes of traffic into a ditch in Montana. Or the time I was driving one of our teens to school in Wyoming and hit the ice, and it turned into a 3 car pile up….. OR the time our door LITERALLY froze shut here in Ohio and Paul was out of town and I had to carry Rylie and her chair down our front porch through 3 feet of snow to get to our van. There was also that winter in Montana when it started snowing in November and we didn’t see the grass until May. This Georgia girl twitched a lot that winter…..

At any rate, you could say I’ve had my fair share of winter mishaps and drama. Causing me to cringe and my heart rate begin to increase when I see those first fresh white flakes fall. Then there is my son, whose heart rate increases for exactly the opposite reason when he sees that white stuff. He cannot dig out his snow pants fast enough and I often will find him out playing in it before I’ve even plugged in the percolator on those mornings because he just. Can’t. Wait. He loves it. He lives for it. Smack in the middle of the hottest summer day, he will reminisce and talk of how he can hardly wait for it to snow again. I often will banish the “S” word from our home, I get so anxious at the thought… But Hudson? It’s like his favorite thing. Snow balls, snow cave, snow ramps, yellow snow, snow cream (made with only white snow of course!)… The possibilities are endless. He is also my optimistic child. Like my other ridiculously optimistic child. I promise you I have NOTHING to do with these optimistic children. I take zero responsibility. I’m a “realist” to the core. It’s like they were born with this high dose of happy hormone or their pessimistic (or realist as I like to say) chromosomes simply got left out or flipped, or inverted… You know, because that’s totally a thing.

Anyhow, what I was thinking today, as my initial reaction of “bleh” to our first fresh snow fall, was that perhaps it could actually be a word picture for our current life circumstances. These have been a trying couple of months, and honestly an epic year medically for my daughter. I have experienced some extreme emotions in all directions, and have been learning to “let it go” (Rylie would appreciate this analogy) and let God.

I have recently shared with a couple of people how I feel He is allowing me to be stripped down. He’s allowing the pulling and tearing and reaching down deep to allow all of my preconceived thoughts of sickness and disability and bitterness to be ripped out. He wants me to look in every dark corner and crevice of my heart where my strongest deepest emotions are kept. The ones I hang on to so tightly, because I want justice for them one day. He’s gently but firmly and steadily holding out His hand, and while gently urging me, He still waits with such patience longing for me to empty my heart and head of those webs of lies, assumptions, and hardness. He wants them ALL. FULL surrender. But wait, what about?…. Yes, that too. ALL. OF. IT.

So I was thinking, as I sit here in the hospital, watching or first snow of the year fall quietly and so peacefully, that it could actually be a beautiful picture of what God is doing in my life and family. That as the song lyrics say, “Even now in death, you open doors for life to enter.”

And Isaiah 55:10-13 says,
“For as the rain and the snow come down from heaven and do not return there but water the earth, making it bring forth and sprout, giving seed to the sower and bread to the eater, so shall my word be that goes out from my mouth; it shall not return to me empty, but it shall accomplish that which I purpose, and shall succeed in the thing for which I sent it.
“For you shall go out in joy
and be led forth in peace; the mountains and the hills before you
shall break forth into singing,
and all the trees of the field shall clap their hands. Instead of the thorn shall come up the cypress; instead of the brier shall come up the myrtle; and it shall make a name for the Lord,
an everlasting sign that shall not be cut off.”

And Isaiah 1:18 says,
“Come now, let us reason together, says the Lord: though your sins are like scarlet, they shall be as white as snow…”

Because not really until this morning, had I ever really associated snow with something so deep and meaningful. But today I am seeing it as something fresh, peaceful, clean, and new. That as we get to go back to our home, that He can continue to refine and purify my heart and thoughts, and renew my strength through Him alone. That we can “go out with joy and be led forth in peace.” I pray He will bring new life to our family that as we continue through this incredible journey of special needs and urban ministry, that we would allow Him to continue to fall fresh and fill our heart and soul, and we can learn to continually empty ourselves of everything else that might get in the way of that. In a sense, that we can “let it go.” Let go of anything that might stand in the way of our surrender. (One day I’m going to re-write some really great lyrics to that song my daughter loves so much:))
I’m so thankful His mercies are new every morning, and for His steadfast love.

From “Disability and the Gospel”, by Michael S. Beates:
“God’s “steadfast love” here is the freely significant Hebrew word hesed. It can be rendered in different ways (“loving kindness,” “mercy,” “covenant loyalty,” and more). Just as holiness is central to who God is, this hesed is central to how God loves those who are his. And as we have seen, his loyal, merciful, covenant faithfulness is not based upon what we do or how strong we are. It is not based on our circumstances. Rather, it is based solely on his sovereign mercy and his eternal decision to love.”

 

 

This Place

It was Friday, but not just any ordinary Friday. It was pajama day at school. I tried to get the day started a little earlier in hopes I could better remember everything that needed to be done today: trying to calculate if Rylie’s morning doctor appointment would be done in enough time that we could squeeze in a half day of school in before her afternoon therapies, what ends I needed to tie up on Hudson’s home school side of things, what equipment I needed to load in the car for her therapy later, figuring what time to get dinner in the crock pot for our dinner party later this evening…..

My brain was going through the usual hamster wheel of reminders and thoughts as I rushed to get in the shower after half a cup of coffee. Rylie was still talking about the Dora movie Hudson picked out for her at the library the day before. She had been reminding me since last night that she wanted to watch it after school today. Hudson had a cough this morning but hopefully it’s just his allergies again……

We arrive at the appointment where her doctor wants to have an extra couple of tests done at which point I abruptly realize my day is NOT going to go as I anticipated. I quickly calculate the minutes and hours realizing after we have these tests run there will be no point in checking her in to school. Oh well, at least we will make her therapies, although at this point, I’m a little more than slightly annoyed just at the fact that we are even at the clinic at all, so soon again after returning home last week from our two week stint. Rylie is quite disappointed at the idea of missing school entirely. She is super serious about her schedule and school. However, she handles the change of plans much better than I- as usual. Only requesting we watch that Dora movie from the library when we get home. I assured her we certainly would, as soon as we get back from therapy.

We get the labs, the ultrasound, we head back up to the 12th floor. We wait. We wait longer. It’s now lunch and we have been here for several hours already. So in hopes they were serving my favorite soup again, we head down to grab lunch whilst we wait. Bummed, not just at the discovery that my soup was not being served, but that not even one soup was gluten free. I decide on a small side of chickpea/pesto/chicken thing, and grab Rylie some Mac and cheese. Upon returning to the 12th floor I realize she is looking a little flushed. And her head is burning up. Lovely… They call us back to discuss the ultrasound. She now has 102 degree fever. Because of some other random symptoms they decide to get a urine sample with a catheter. I proceed to go ahead and cancel her therapy appointments. (And then our dinner party because this is only going south from here). Her dr leaves the room and returns. She looks at me a bit grim faced: we are going to need to admit her. Now, it’s hard to say what look I may have had on my face at this point. I would imagine it was something along the lines of shock and grief with a death stare mixed in. “Wha- like- whuh- um- huh? I don’t- like- but- wha???” Eloquence was certainly far from my ability at this point. I didn’t know if I wanted to cry or laugh. I mean, we JUST got out of the hospital for TWO weeks just ONE week ago. Like, are you frickin’ kidding me?!?!

After she explained her reasons, I thought with boldness in my head, “Well we aren’t going without a fight!” Followed by a quiet, polite question if she thought it absolutely necessary to be admitted. She gave me some more medically charged reasonings which caused me to easily agree, at which point I made a feeble attempt to make some lame joke, adding how it’s convenient she is already in her pajamas, in attempt to lighten the mood, as her doctor was clearly feeling badly about having to make this decision.

She leaves the room to make the call, and I look at Rylie thinking she is going to freak if I tell her she has to stay. I mean, this kid HAS to be totally traumatized after this last stay. The no eating, the surgery, the sleep deprivation, the loss of privacy… -wait, I was talking about what traumatized her, not me….

Anyhow, I lean down and gently try to explain the scenario, preparing myself for her to be really sad. She looks at me and says, “Dora??!” Ahem… Dora? You are worried about that dang library movie? Oh my heavens. Okay, I will get the Dora movie and bring it here ok? This was the only assurance I need give her. That she will definitely watch that Dora movie before this day is over. Meanwhile, after speaking with Paul, he tells me Hudson is just not feeling well…

We arrive at our room after the security guard lets me pass with an- “Oh yeah, you know how this works,” and the child life specialist comes to basically say, “What the heck?” Because she is almost as bewildered as I am at our newest admission. The floor doctor comes in later with a look of pity, as though he wanted to give us a hug. He lets us know it’s probably at least a two night stay. He knows how disheartening it must be to be here again. So soon. So. Very. Soon. And so after the last of the small flood of people containing doctors, nurses, residents, a vascular team, and an ultrasound tech, makes their way out of our room, I start thinking again.
I’m kinda mad. I’m frustrated. And yet so oddly comforted by the fact that so many of the hospital staff now know us by name. And hungry, because that chickpea basil thing was not a very satisfying lunch… After Rylie gets her dinner, (which consisted of Alaskan seafood purée, which she seemingly thoroughly enjoyed to my surprise) I leave to go grab my pillow and an overly prepared overnight bag from home and promise to bring her Dora movie and her Christmas Minnie Mouse whom she was requesting.
I get home to find Hudson looking completely puny on the couch. I feel his head, check his temp. He has a fever. Let me tell you, my kids are relatively well. They honestly do not get sick a lot. I look at Paul with weary, empty eyes. What is this? What is happening? Both my kids have fevers and Rylie’s in the hospital. Again?!?! Hudson is sick? Again?!?! I kiss Hudson’s head and tell him how sorry I am he is sick and that I have to leave again. I get a couple of desperate hugs and hop in the van to head back to the hospital.

All day I’ve tried to pray. This is probably nothing life threatening, or extremely serious. But I’m discouraged. I try to think of things to pray or say but nothing. “Why?” I find myself whispering. “What are you doing? Allowing? What is this season we are in?” I turn on the radio to hear a pastor speaking about something along the lines of God hearing us when we look to Him. About honoring Him. He will Honor those who honor Him. A short while later I come across a verse in Psalms about the Lord has not forsaken those who seek Him.

I also was listening to current events on the radio about refugees from Syria and the uproar it’s causing. I struggle to know my circumstances could be so much worse. And yet I still find myself having a bit of a pity party. The kind where you stop at the McDonald’s drive thru not once, but twice within the hour at two separate locations. Yes, it’s that kind of despair, where you try to drown your frustrations in super sized salty fries. Only to feel slightly more bloated and a little nauseated after…

Honestly though, I just don’t get it. I keep thinking God MUST be trying to bring us to something or teach us something so incredibly profound during this season. But I honestly can’t see it yet. Am I not looking hard enough? Or is He not ready to show me?

I return to our room and announce that I have successfully retrieved the Dora movie and Christmas Minnie. She is beyond thrilled. She’s in a hospital bed, with an IV in her foot, and her O2 monitor smiling because I got the Dora movie. Her nurse comes in and she announces what she is watching. She is so happy and content.

I really never fully understand what goes on in that little precious brain of hers. I know I aspire every day to have even an ounce of her joy, peace, and demeanor. Maybe God wants me to really aspire like never before to be more like her. Maybe He wants me to continue to honor Him and acknowledge Him even when I can’t. Even. Maybe He wants all of me, and I’ve been holding back….

If you are so reminded, you could continue to pray for us. Pray that God would speak clearly and specifically to Paul and I. That He would reveal His goodness through this chaos. I know it’s there. But sometimes I start looking at the water below and begin to sink. Pray for our faith and that we would know His love. And please pray His healing hands on our children, and for wisdom for Rylie’s doctors.

Mirror Mirror

“I KNEW you were going to make that face!” stated my then 7 year old as he turned to get in the car. Oh wow. Talk about a kick in your gut…

I’ve always been told I have a face of many expressions. I also do not hide my emotions well. What you see on my face is exactly what I’m feeling. I’m not sure if it’s a gift, talent, trait, or curse. But it is what it is.

See, the thing is, when I am all by myself in the car, or at home, I’ve recently caught myself rolling my eyes or glaring or giving looks of disgust. Sometimes it is towards the obnoxious pile of laundry staring at me. Sometimes it is at the person in the car in the fast lane going 5 miles under the speed limit. But sometimes, actually many times, it is towards a loved one. Someone in my family. I have even caught myself pulling a nasty face after I thought my husband had turned around, only to hear him say “What are you upset about??” WHAT?! I exclaim? What do you MEAN, why am I upset?? While thinking, “How on earth did he know about my facial expression??…..”

Then there is that rude awakening of the little mirror that reflects my severe facial contortions. It’s super creepy because it will follow me around and pull a face just when I least expect it. Sometimes it even waits to leave the room and I turn around and catch it! It’s my living mirror- my child! The first time I caught him doing it, I was so hurt and thought, “where on EARTH did you learn how to……oh, wait… He has seen me do it!” And then he mutters! Oh no!! He mutters!! I did not even realize I talked to myself so much, especially when I was frustrated. Then I started to catch myself doing it quite often. Which then led me down a rabbit trail of questioning my sanity…..

Anyhow, I begin feeling like the worst parent ever! I never wanted to be that parent with a child who picked up weird or disturbing behaviors. Yet here I was, with my little mirror. Every time he would get in trouble, I would now not only have to reprimand him for the crime at hand, but now for the muttering. And the cheesy, sneaky, sarcastic faces!

Wow. So, I do not know when I started this terrible habit. But I know I MUST stop! And now, not only do I have to discipline myself to stop, I now have to work extra hard to explain and teach my son why it’s wrong and help him to get out of this habit!

This has been a harsh reminder of not only how difficult it can be to break bad habits, but also how easily we unintentionally instill these habits into our own children! Their little minds are SO impressionable when they are young and they are so very quick to pick up even on the slightest of behaviors.

This, among other things has caused me to really reflect and try to begin the painful process of refining. It’s something I can only do through the power of Jesus. But thank God His mercies are new every morning and I can start again tomorrow!

These things take time. I wish I could wipe everything clean and start over tomorrow, but I can’t. I have to keep going from where I left off – but in the smallest decisions every day is where my victory lies. The more I take captive and control my tongue (or face!), the more I am patient and quicker to think than speak or act, then the more I can begin to make progress in changing my overall attitude.

I want so desperately for my kids to grow up having an example of following Jesus and constantly reflecting Him. I am however having to come to terms with the fact that I am imperfect, and unfortunately they will witness a lot of my downfalls and less than graceful attempts to recover from a face pull or roll of the eye. I guess it’s how I react in those broken moments and the growth that could come from it that matters most. That while they see an imperfect mommy, they have the comfort of knowing she trusts and runs to someone who is perfect and forgiving. I pray they will begin to naturally run to Him too, and realize His deep love for them.

God help me to mirror you and your love in all I do! Amen.

Let’s Focus

Unless you live under a rock, then by now you have heard of the famous man who has decided to try to become a woman whether you wanted to know about it or not. Now, there are not many things that cause me to immediately sit and write, but I became really bothered today after reading a few statements on social media. (Not to mention it is entirely appalling that THIS is the “news” story getting the most attention right now instead of being concerned with what is going on with the silent genocides in the world and Christians being martyred…).

Anyhow, I will tell you I am fed up. And I feel like you should be too. Not fed up over one man’s life choices or even over the attention it is getting from the media. But fed up at the response of Christians. If you are Christians and claim to follow Jesus, you should be equally as upset. There are people writing blogs and articles all over the internet and people posting and sharing like there is no tomorrow on social media. And do you know what the content is of the majority of what I am seeing? Judgment, talk of disgust, and Christian leaders going into detail on how Christians should respond to this type of immorality.

Really?!?!? And then other “Christians” come along and “share” the posts with such boldness and scriptures to support it as though we are standing tall in our beliefs. I’m sorry you guys. I don’t get it. The transgender thing? Yeah, sure, I don’t get that either. But what I really cannot wrap my mind around is how we stand tall on our Bibles and morals and are so quick to talk about how disgusting and appalling someone’s life decisions are and then condemn them for being so twisted in their thinking and lifestyle choices.

Maybe I am just ignorant, but I cannot figure out for the life of me why we get so up in arms and down right mean about someone’s personal decision. Unless you know this man personally, and are able to talk to him on a level where you could tell him you love him but you do not agree with his life choices, and possibly try to share the Gospel with him, then the only thing you can really do is pray for him if you feel so led.  I have just grown so very tired of hearing Christians – especially those with a platform- to ramble on about life choices made by unbelievers AND others who go on to explain in detail on how we should respond to these unbelievers. It makes me sad that our focus has shifted and the world begins to see us in a different light- that of being disgusted by an unbeliever’s behavior and allowing our conversations to consume talk of their “wrong” lifestyle choices and why we are so high and mighty because we are not sinning in the exact same way.

Well, I have a revelation of sorts:  we LOVE them. WHOA. Let’s not complicate the Gospel and God’s commands so clearly stated in the New Testament.  Jesus gave us instructions and guidelines AND the Holy Spirit.  He did not explain WHY things were wrong and elaborate on an unbeliever’s sinful choices. He said “Follow Me.” He said take up your cross and “Follow Me.” He said “Love others more than you love yourselves.”  He said “Blessed are the merciful.” “You are the salt of the earth…..the light of the world.” And He says a lot of other things too, but this is a blog post, not another revised version of the Bible, so you can go check it out in your own version……. Just to remind you though, Jesus talks about giving and praying and forgiveness and LOVE!!

I also have another reminder:  We are nearing the end times. If you have in fact read the New Testament than you know what I am referring to and that things are only going to get worse on earth before Jesus comes back. So if we KNOW that things are only going to get worse, then we should stop being so surprised and appalled when unbelievers make insane decisions and decide to live in a manner that does not reflect a relationship with Jesus. Why should we be so surprised that someone who does not claim to follow Jesus lives a life that reflects the opposite of Jesus? And WHY do we KEEP. ON. GOSSIPING?!?!

Colossians 3:1-8

“If then you have been raised with Christ, seek the things that are above, where Christ is, seated at the right hand of God. Set your minds on things that are above, not on things that are on earth. For you have died, and your life is hidden with Christ in God. When Christ who is your life appears, then you also will appear with him in glory. Put to death therefore what is earthly in you: sexual immorality, impurity, passion, evil desire, and covetousness, which is idolatry. On account of these things the wrath of God is coming. In these you too once walked, when you were living in them. But now you must put them all away; anger, wrath, malice, slander, and obscene talk from your mouth.”

I find it interesting that in one sentence Paul is telling us to put to death sexual immorality, impurity, etc, and follows it by telling us to put away anger and slander.  So…… does that put us all in the same category? If someone has not claimed to follow Christ then they have most certainly never reasoned to put to death these earthly desires. And yet those of us who HAVE claimed to follow Christ and are instructed to set our minds on things above are ALSO instructed to not only put to death immorality, but ALSO the anger and slander. Now before you get defensive, just really ponder that for a minute.

Friends, if we are in fact consistently seeking the things that are above and practice renewing our minds in Christ, then our talk should reflect it. I want people to see Christ and wonder how to have a relationship with Him, and sit in awe of His love and mercy. I want Him to overflow out of my life, actions, and words.  I am not perfect at this for sure, but if I can try to focus on things of Him and see everything that goes on in and around me through His lens then I am able to change my attitude and over time start to look more like Him.  Jesus, help me be more like you!

Finally, have some compassion.  If this MUST be the top news story, then maybe our first reaction should be a compassionate response.  I hurt for this man. Can you imagine what could have possibly happened to him emotionally at some point in his life, to drive him to want to live like this? I surely cannot, but I would imagine he is in a great deal of emotional pain and confusion that is probably only going to grow stronger unless he has an encounter with Jesus.  I pray somehow He could know His love and be free from this pain and that the body of Christ could collectively pray for him and other people struggling like him in the same way.

Come on you guys, let’s focus…..

Fear Not

Did you know that if you were to try to scare me in a really big way, it is likely I would clumsily collapse without control? For some odd reason if I experience pretty much any emotion in a very strong way, I lose complete muscle control for a few seconds. It’s weird. I don’t understand it, but it’s true. I also share this in good faith that you are not in fact going to test my reaction…..

Anyhow, I experience emotions on different levels, fear being one I have realized I can experience in a variety of ways. I’m crazy afraid of heights. I’m afraid of what people think of me. I’m afraid of moths. I’m afraid to drive in the snow. I’m afraid to cook large meats. I’m afraid I’m not a good parent/wife/friend. I’m afraid of the unknown.

Some things can also cross into the line of worry as well. I have battled much anxiety in my life over many things and thoughts and worry usually turns into fear. Over the years though, God has taught me much about fear and anxiety and that He truly can help me overcome it. He has pulled me out of dark places and specifically shown me He is always there waiting for me to give my fears and worries to Him.

I was thinking I had been doing rather well in this area of my life, until we found out Rylie needed major surgery. She needs a spinal fusion. (If that doesn’t sound scary enough, just Google it.) So we schedule the surgery and begin making preparations in our home, and mentally and emotionally. And I’m scared. I’m afraid. Every time I think about it I can’t breathe and I want to cry my eyes out. It’s just so much. I’m so sad for her, and she does not even realize how serious this is. She is just excited to ride the elevator at the hospital and that friends and family are going to come visit her, bless her heart.

So I pray. I pray for God to continue to give me a peace that this is the right thing. For peace that He is still in control. I pray for strength and health and that he will prepare ours and Rylie’s heart. And also for Hudson as he seems to be the most distressed of any of us. He loves his sister fiercely, and cares for her so deeply.

I begin to see Him, and hear Him speak through people to encourage me and to help me know it’s okay. And I still have a weird fear…… I feel honest when I say I’m not afraid of something going wrong, and I’m not afraid of the recovery, but something is still not sitting right, and I’m not quite sure how to deal with it. Then I realize, I’m afraid of the unknown. I’m afraid of not having control. Yes, THAT is my fear.

We will drive our daughter to the hospital early one morning and put a gown on her and watch them wheel her away down that long hall while we have absolutely no control. My heart races as I write this, because she has had surgeries before and I know that feeling all to well. It feels like your heart falls out of your body and you need to grab at the air with your hands for breath. They just take her away, and she will look at me with tears in her eyes of fear and bravery all at once, while I know she is trying to understand everything that is taking place. They will take my baby down that hall and I have to trust that they will take care of her for the next few hours. These people whom I hardly know. Rylie I know, will look at us, and while she is afraid, she knows we only do what is best for her, and she trusts us more than anyone. She knows that if we are saying it’s okay to take her, that while she is scared for the moment, it will be okay, because Mommy and Daddy said it would be okay.

This child, she is amazing. I have said it before, but she continues to remind me of our relationship with God. If she can put trust like than in us as her parents on earth, who she knows are not perfect, then how can we even begin to question God? I’m realizing He is so much bigger, and when I ask for peace, He gives me peace, even when I don’t understand. All I have to do is have a willing heart, and ask. He is faithful. He is faithful to give me peace even when it doesn’t make sense and I have nothing left to control.

So specifically, I will now be praying for peace beyond my understanding about losing all control and knowing He is there. He will be with her in the surgery, He will be with us all, and He is the one who is ultimately in control!

“For you did not receive the spirit of slavery to fall back into fear, but you have received the Spirit of adoption as sons, by whom we cry, “Abba! Father!””
-Romans 8:15

(She is scheduled for surgery Monday, March 2nd if you would like to join us in prayer:))

Just a smile :)

Today I had two interesting encounters. Rylie had a doctor’s appointment, and as we walked in the building to head towards the elevators, I noticed another mom and her little girl waiting. Her daughter was around the same age as Rylie, and Rylie saw her and noticed she was also wearing school uniform. So Rylie said “Hi! ……School?”, as if to ask the girl if she was going to go to school later like she was. I tell them she is asking if she will also be going to school after the doctor. And then the little girl reacted. She reacted in a way I have not seen people react before. Rylie is used to getting lots of stares, pity smiles, baby talk, and complete avoidance, but this reaction was something different. It was a sort of fear. An anxious fear. The little girl tried to hide behind her mom because she was clearly uncomfortable around my daughter. Wow. I was not even sure what I was feeling in that moment. We went on our way and I felt distracted. I was sad because I am not sure what Rylie made of the situation. Fortunately my daughter seems to be very resilient and unscathed by these sort of things, but as her mother I start to think and dwell and feel sad. So as I sat there wondering if the mother would take the opportunity to educate her daughter a little, and was scolding her in my head for not encouraging her to talk to Rylie like any other person, I look up and lost half a breath at what I saw next.

A woman walked in with a baby in her arms. The only part of her body I could see was her eyes. She was covered from head to toe in black cloth and was even wearing black gloves. It startled me. This was different and made me feel somewhat uncomfortable. And unfortunately my mind briefly wandered to a place of scary images of terrorists and violence since many women dress like that in the news clips I have seen on tv where there is much violence. Whoa. “Stop it!”, I say to myself!

Then I had the “aha” moment. I was silently reacting just as that little girl did! Now all of these thoughts were taking place in the time span of about 5 to 7 seconds in my head…. Then the woman and baby sit facing us in the waiting area. Before I could finish my next millisecond thought, I waited to see if Rylie would react in fear of someone dressed like that, and see she immediately notices the baby. She says “baby!”. Rylie loves babies. So I say “Yes she has a baby! Isn’t she cute?!”. To which the woman looked up and I had the opportunity to make eye contact through the dark cloth covering her face. I smiled and her eyes smiled back. She and her husband had an interpreter with them and were called back shortly after.

I realized something in that moment. I thought about how many opportunities are lost, both great and small, just because we yield to fear. There are different types of fear. Many times it comes in the form of something different and unknown. Often we tend to attempt to retreat from uncomfortable situations or circumstances in order to restore our comfort. I talk about it often, but I am continuing to learn how great an experience I can have if I push my comfort boundaries and try uncomfortable things. I can always use the excuse when it comes to people that I’m shy or an introvert, but it doesn’t give me the right to ignore people. God still calls me to love people and retreating or looking away from a person because they are different is definitely not showing them love. And even if I cannot speak their language, a smile is understood universally.

What is somewhat ironic is that even with all of the blank stares and weird face pulls, Rylie still smiles. If you know her, you know her smile is completely contagious. She can light up any room. She is such a great example every day of a joyful heart and smiling through most any circumstance. She has taught me a lot about joy and I am so thankful for her bright spirit!

Today I left hoping and praying the mother living under the black cloth would receive more than just my smile. I hope more people were able to share a smile and be a light to her. I think when I stop to think about how I feel when people, especially strangers, share genuine smiles with me it helps me remember that a loving smile can go a long way. Whether it is a light to me in that moment of my day, or if it leads to conversation, I never regret a smile. Sometimes it’s the little things. Sometimes the little uncomfortable steps lead to bigger ones and sometimes a small gesture of love such as a smile can make a huge impact on a person’s day. Think about it:)

My heart cries out

Sometimes I get really stressed. I get super anxious and worry about things I cannot control. Our moving to Cleveland is a good example of this. We have no exact “move in” date, my kids start at their new school in a week, I’m trying to pack up our house, tie up ends here, and figure out what I need to do for school, all while not knowing still exactly what day we will be able to move into our new house! This is really hard for me, as I thrive on my schedules and appointments. Packing the house up and trying to keep your kids adequately entertained and fed is just not easy.

Then I read a news article today. It grabbed me instantly, as I could not believe the words I was reading. It was the stories of children being beheaded, women raped and murdered, all because of their beliefs. It shakes me to my very core. As I continued to read the details, my heart sinks as I try to imagine for one moment if this were happening for real in my country, in my city, in my park, to MY children.

I confess that I am often ignorant to what is going on in the world outside the United States. I know sometimes I even read articles about these horrific acts, and terrible violence, only to subconsciously think, well that is sad, but that is just what happens in those places…. Shame on me! I know it is hard because it is so far away, and we feel so helpless, but if these kinds of news stories do not rock our world and wake us up to more important matters at hand, then maybe we are really missing something.

After a very long day today, I was absolutely exhausted. I sat down to watch tv before going to bed, and turned to comic relief. It wasn’t so funny. Suddenly I was watching through a different lens, and I kept thinking how we are here entertaining ourselves, to relieve the stresses of life that might involve a large workload, illness, unpaid bills, or relocating, but these things are suddenly so pale in comparison to these horrible acts that are happening halfway across the world. No matter what we are going through right now in America, it is nothing close to what these people are experiencing in Iraq.

My heart cries out as I try to understand how these things could actually be happening. It made me realize how much I have to be thankful for, and suddenly my stress and worries did not seem significant anymore. Even though we are unable to do much to physically help in these types of situations, we can pray. It is one positive thing about current technology, that we can be informed on what is going on around the world. With being informed and hearing all of the current news, it gives us a great responsibility, to act. And if the only way we are able to act is to pray, then we need to pray! I hope I am continued to be moved to my knees, and continually reminded of what is going on outside my door. I want to continue to be emotionally wrecked over our world that is so broken and in need of Jesus. May I never become so complacent and satisfied that I forget.

One day at a time…

I read an article today and shared it on Facebook because it resonated with me so well. I could have written it myself. It was about special needs moms and what people may not know about them. It was so very accurate. It brought me comfort to read it because today was one of those days where I felt like I could not relate my emotions and experience to anyone. I felt alone, and misunderstood.

Today was one of those days when I cried because I was so brokenhearted. Not because my daughter has a disability, or because I was having some sort of pity party. No, I was sad because I think I just needed a hug. Or an understanding ear. We were at yet another doctor’s appointment early this morning. A specialist. A specialist who is known around the world for his work, and has written many articles on the subject of movement disorders, which is why we were seeing him.

I had high hopes today. I did not realize I had those high hopes until I left the office in tears. Why am I upset? I had to process it for a moment. I realized I subconsciously had expectations that he was going to give us the magic formula today. He was going to tell me exactly what was going on with Rylie recently and tell me exactly what we needed to do to fix it.  I was trying to explain to the doctor how significant certain symptoms were. I wanted him to see my video I made of her displaying the symptoms. I wanted him to examine her on the table carefully and take in every word I said and realize that I am scared. I am nervous that these treatments are not going as we had hoped. Instead he gave an explanation and suggestions on the direction to head next. This man is brilliant, for real. I feel small and slightly unintelligent sitting in the same room with him because I cannot possibly imagine how much knowledge is contained in his head. I want to trust him, and ultimately I’m pretty sure he probably knows what is going on and is giving her a fair assessment. And yet I still left feeling empty and sad.

Why? I realized it was because he did not see the whole picture. He did not see me battle and wrestle with all my might just to give my daughter a bath. He was not there every night the last two months as I tried and tried again just to get her body settled enough to tuck her in at night. He was not awaken those times she was hanging off her bed with her body completely contorted in the middle of the night. He does not see my every day struggle just to get her in and our of her wheelchair. And somewhere deep down I think I wanted him to acknowledge that in some way. To let me know he understood, and that it was going to be okay.

He did his job, yes. He did his job well. He carefully assessed her, prescribed the medications, and gave me the suggestions and sent me on my way. I got in the van and suddenly thought, if anyone says anything to me at all, even a hello, I am just going to cry my eyes out. Like that ugly cry where you can’t breathe and your snot cannot be contained. I was SO sad. I think some days like these are also a stark reminder of real life. I seem to have cycles where I run and go and push, and then my emotion bottle gets so full that it tips over and they run everywhere completely unconfined.

You forget sometimes just how different your family is, or your child. Your head is down and you are buried in your world of medication alarms, appointment schedules, and fighting (literally) for handicapped spots until someone stares the wrong way, or says the wrong thing and then your head bobs above the water long enough for you to remember just how different your life is. Suddenly you are keenly aware of how every single detail in your life seems completely unrelatable to anyone and you slowly sink beneath the surface of the ocean of your tears.

Dramatic, right? Oh, I know. I won’t deny it. But I am also learning, you see. I know in my head that my God is bigger than all of this. That He will walk me through it and comfort me if I let Him. Somehow though, I still struggle. I struggle with wanting people to “get it”. I want justice and understanding, and maybe a Senate seat…… But I am having to realize that none of those things may ever happen. And what then? Then there is my God. I can lay all of those things before Him and receive the peace that only He can give. So while I know it in my head, I need to get my heart there as well.

And do you know what other important lesson I am learning? That is is a choice. I can choose to let these things get me down, or I can choose to take them straight to His feet. It is often a hard choice for me, to let go of my justice-seeking and focus solely on Him, but at the end of the day, it is ultimately what I need to do for me, for my family, and for my sanity.  The kids and I were recently studying Galatians 5:22 and we were talking about the fruit of the spirit and what it really means.  If Christ is not my everything and my center, then those fruits, (Love, joy, PEACE, patience, kindness, goodness, gentleness, and self-control) are not going to be evident in our lives. It is a process, and I am getting there one day at a time. I’m so grateful that tomorrow is another day, and that His mercies are new every morning!