Hat Down, Guitar Up

The blessings of homeschooling Hayden continue to be revealed to me daily in the little things that I never could have even conceived as being a blessing. A huge blessing is the quality time he and I get to enjoy with one another, of course. Quality time was something I was definitely not getting enough of when he was enrolled in public school, so that seemed like a “gimme” when we made the switch to a homeschool environment. But an extra perk of having quality time, is when there are shared interests between a parent and a child.

For Hayden and me, that became a love for Texas Country music. I have loved music for as long as I can remember. My mom used to let me go to sleep with the radio on and I would always get in trouble for singing, rather than sleeping. (Not that I can even sing! ha!) I love language and stories and the way music can tell a story and transport you to a different time and place is a beautiful gift from the Lord, in my opinion. He created music for us to enjoy and I certainly do. On days when I took care of Hayden alone without a nurse, he and I would use that special time to listen to all kinds of music. And being a teacher, I know that you can turn anything into a lesson and that is what music became for us. The lyrics of any song became a history lesson, or a literature lesson as we talked about rhyming and poems, deeper meaning of words and what we thought the song writer was feeling in that moment and why he wrote those lyrics just so, and how that same message could apply to our lives. This really became a special thing just for Hayden and Mom.

During Hayden’s shower each morning, he would have me “turn up his jam” and we would just sing and rock out to music on shuffle on the Amazon app. I often would guide Hayden through dissecting the music for deeper meaning and making connections to his own life through the music. I treasured this time with Hayden. We had a few favorite artists we would stream; lots of Texas Country and Southern Gospel, but very quickly Hayden’s all time favorite became Aaron Watson.

Back in August, Ryan and I went down to Gruene Hall with my brother and his wife for a couples’ weekend. Ryan and I met Aaron after his show and snapped a quick picture together. Hayden was just memorized by this photo and all the video I took of the show [per Hayden’s adamant request ;)]. He decided he needed a chance to meet Aaron, too, since Mom and Dad already had. And since Hayden is who he is, he just knows what he wants and he goes after it with confidence and vigor. This goes along with the lesson we have always told Hayden and all our boys; if you want something, go do it and don’t give up. That is exactly what Hayden did. He did some research and checked Aaron’s tour schedule on his website. He realized Aaron was going to be doing a show in Denton which was about 30 minutes from our house. Hayden decided this would be the perfect place to attempt a meeting. Not completely knowing how you just reach out to a stranger to set up a meeting, we decided we would pray about it. I must confess that historically, praying about something is not what I have always done first. This is deeply routed back to our NICU days and is a longer post for another day. But this particular day, in this moment, it was on my heart to teach Hayden that when something seems impossible, our go to has to be prayer. And so we prayed about it asking God that if it were possible, we would love to meet Aaron Watson and if it was not going to work out at this time, that we would be ok and not too upset.

I emailed the Aaron Watson website to reach out for a mailing address. Hayden wanted to write a letter to Aaron to make this request. We got an email back from Aaron’s tour manager, Clint, with the appropriate mailing address. Of course, Hayden saw this as an even better opportunity to email Clint (#microwavegeneration haha!). Hayden composed the following email to Clint:

Dear, Mr. Clint 

I am Hayden Hensley and I am 9 years old. I am Aaron’s biggest fan and we prayed And hoped that tomorrow we could meet Aaron Watson during sound check we live near Denton I read online about tomorrow’s night show and we even called rocking rodeo I looked up the phone number I had my mom called. Can I meet Aaron tomorrow I will understand if I can’t I will keep trying.
My favorite songs are:
“Fish”, “the underdog” “real good time”
“Barbed wire halo”
“That’s gonna leave a mark”
“Long vacation” (mommy’s gonna be funeral song)
“If you’re not in love” inspired me to always remind mom to flush also put down the toilet seat.

Thank you for reading this. 

I was so impressed with Hayden’s letter! I loved how he took those last two songs and explained how he related to them. It’s exactly what we had been doing over the weeks prior to this talking about meaning of lyrics. Clint was so precious and relayed the message to Aaron. We were floored when Aaron invited us to come to the venue the next day! I’m not sure Hayden had ever been more excited about anything!! The entire drive there he was seriously losing.his.mind!!! It was probably a good thing this meeting happened as a whirl wind because I’m not sure I could have tolerated this much excitement for too much longer!

When we arrived at the venue, I texted Clint and told him we were outside. Clint met Hayden at the front door and gave him a GIGANTIC hug as if they were best friends for ages. Of course, if you’ve ever been blessed to receive a hug from Hayden, I’m not sure he knows another way to hug. Clint ushered us in and the band was finishing up their sound check. Aaron was out on his bus and Clint went to go get him while Hayden just looked around and soaked it all in. It was his first time in a honky tonk 😉 A quick few minutes later, Aaron came out and again, Hayden just drenched him in a HUGE, excited hug! It was so precious to see Hayden share love so freely and willingly.

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Hayden and Aaron just jumped right on in. Hayden began asking so many questions and wanting to know about every guitar, every process of making CDs, every digit of Aaron’s phone number. Now, I can’t speak for Aaron, but just in my humble “mom opinion”, it seemed like he was a bit enamored with my darling, hilarious, adorable Hayden 🙂 🙂

There are so many details to this story that are just precious to my heart. I could take the rest of your day going through each one, but my favorite one of all is how Aaron had never met Hayden before and had absolutely no forewarning about Hayden’s medical issues, but he took one look at this child and saw him for who he was. Never once during that hour of visiting with Hayden – yes, an HOUR of his time was spent sitting on the ground talking to Hayden and answering all of his endless questions, and even playing him a tune or two – never once, did Aaron skip a beat.

As we wrapped up our visit, Aaron invited Hayden and our family to come out to his house over the Christmas holidays for game night with his family. Hayden was so excited and we were all looking forward to this upcoming night of fun. The next few weeks went by with Hayden texted Aaron on occasion and our excitement building for Hayden to attend his first ever Aaron Watson concert in December at Choctaw Casino in Durant, OK. That may not seem like a big deal, but for Hayden, who for years had been ridden with sensory processing issues and could not tolerate dimmed lights, loud noises, or clapping, for him to be looking so forward to a “sensory overload” was promising to us. The day of the show came and Hayden stayed in the auditorium and enjoyed the show for an entire hour! He eventually asked to leave early just because he was starting to get tired. He loved the show and afterward he got to catch up with the band and Aaron briefly before hopping on the elevator to go to our hotel room. Hayden’s two favorite things – Aaron Watson and a hotel! He was in heaven!

Over the Christmas holidays, we did in fact make it to the Watson house to play games, eat pizza and cookies, and just hang out. We all had a great time. Our boys had so much fun with the Watson kiddos who are very well behaved, so adorable and some may say sassy 😉 Hayden has a “crush on Jolee Kate’s sassiness.” (I think he can relate to the sass!) img_2962And Aaron’s wife is such a sweet, godly woman. I left there that night feeling refreshed and very “normal.” I realize that’s ironic… I mean, my family had just spent an evening with Aaron Watson and his family in their home which is a completely random, bizarre thing that I had never envisioned happening just a few months prior. But the thing of it is, they had invited us over and welcomed us into their home and treated us like normal people. So often, we get overlooked by our peers. We don’t get invited to family game nights. We don’t go to dinner with other families. I don’t think it’s because we’re unloved, I think it’s just that often times, people don’t know what to do with our situation. It’s overwhelming and it’s a lot to deal with and so many times Ryan and I feel complete isolation when we see other families around us doing family activities and we miss the boat. But here was a family who welcomed us in, treated us just like friends and were not intimidated or overwhelmed by us. Just like Aaron and Hayden’s first meeting, the Watson family just took us at face value, loved on us and poured into us more than they really will ever know. And that was such a gift to our family.

Aaron has a new album coming out February 24 of this year called, “Vaquero” and the backdrop of the photo taken for the album cover is a beautiful piece of artwork that was painted in Coleman, Texas by a spunky girl named Cal Johnson. Ryan’s parents still live in Coleman and so each time we visit Coleman, Hayden likes to go to the “Vaquero Wall” and take a picture, just like Aaron did. This particular photo below is one Aaron shared on his Instagram page. Not very long after this photo was shared with the world, Hayden was invited by Cal, to be a part of a news story from a local station in Abilene, TX. Hayden was more than happy to be a part of the newstory as he sees himself as #HPtheVIP anyway 🙂 but it was such a special treat for Hayden and us – we are so proud of how brave and confident Hayden is. Kathleen Barkley, from KTAB in Abilene did such a great job on this story! The link for the newstory is here: KTAB. Hayden has done such awesome things in his few short years on this earth with many more mountains to move I’m sure!

 

Our family’s friendship with Aaron Watson and his family has been such a fun, surprising blessing. I don’t know a lot of “famous people” – I mean, besides #HPtheVIP, but it seems to me that Aaron is the most sincere, genuine person who really loves his family, fans and friends. We’re lucky to have met him and forged a friendship with him!

While all of that is so very exciting, the takeaway for me that I have been treasuring is the way God has used this entire experience to just love on me and my family. I love the joy that Aaron brings to Hayden, I love the people we have met and shared with since Hayden’s story aired on KTAB, I love the person Hayden has become. I can’t help but think that if it hadn’t have been for me homeschooling Hayden, this love of music we share wouldn’t have happened. And if I hadn’t have taken a leap of faith and answered His call to pursue a teaching certification three years ago out of the blue when it made NO sense, I probably wouldn’t have been ready and comfortable homeschooling Hayden. It’s like an offshoot of trusting God in all things and taking leaps of faith along the way of life resulted in a strand of blessings for us, but hopefully also for others, that I could never have imagined.

I can’t help but ponder how many people see Hayden and our family and are even the slightest bit changed, or perhaps intrigued, by what it is driving this thing. It’s Jesus, y’all. It just is. If there is something you feel He’s calling you to trust Him on, trust Him. Do it. He loves you. Let Him love on you. It’s not an easy road to walk, but we’ve got to do the thing He called for us to do. I often think, if Hayden had been healed before birth and never had an ailment in the world, I would never have known you. I wouldn’t be here blogging to you and I definitely wouldn’t be the person I am today. I wouldn’t share our story so openly and boldly. And even though this path is a rough one, He’s done so much more with me on this rocky path than He would’ve gotten out of me if I had been on the smooth sailing, care free path. So for the that, I believe with all my heart His plans are good.

Our family loves you and we thank you for letting us share our journey with you. And for goodness’ sake, if you go to Coleman and take your picture just like Hayden (and Aaron ;)), please take Hayden’s advice: Hat down, Guitar UP!

Pre-order “Vaquero” here and get five songs instantly.

Follow Aaron Watson on Instagram at aaronwatsonmusic or follow him on Facebook at www.facebook.com/aaronwatsonmusic.

 

 

The Sore Truth

There are so many things that are unfair in this life. This evening we discovered what (at this point) we’re assuming is a pressure sore on Hayden’s back. He’s never had any pressure sores any where so this is a brand new experience for us. Something that’s not a new experience, though, is my brain going straight to the worst case scenario. It’s unfair that my brain has a learned habit of immediately running through “what if” scenarios. My son is nine. How is this fair?

In this particular situation, I have no idea how this process will go, as this is our first true pressure sore. Which that alone, I should consider a blessing because so many in our “circle” constantly deal with skin breakdown issues. Hayden doesn’t mind the sore at all. He can’t feel his back. Which there again, I can see through the lens of being a blessing. The same way it’s a blessing he can’t feel his feet and is able to get lab draws and IVs placed there and it is pain free to him. I guess it’s all in how you look at the world. At this moment, he’s clueless about his back. I had to show him the photos I kept taking to even explain what it was I was talking about. He was too busy running a feisty FaceBook Live event to even be bothered by slowing down to worry with his back.

And that right there is what is so frustrating. His mind and his spirit are just fine and fired up, but his poor body just struggles in so, so many areas. Nutrition. Bowel/bladder. Scoliosis. Dislocated hips. Paralyzed. Apnea. Etc. All of these physical ailments that aren’t WHO he is, they’re just things our bodies need to function. WHO he is is a happy, hilarious, joyful, loving, quirky nine year old. And most days, I am so wrapped up in his personality and his laughter that I can take for granted and overlook all of those other areas that we deal with. Most people see him and their initial reaction is to ask if he’ll ever walk. Walking is the least of my worries for him. But I get it. I was there, too, when I first found out about his spina bifida. The thought of my child not walking just destroyed me. But now, that’s not even on my radar. Because, as I mentioned earlier, the focus changed and now my radar is filled with pulse oximeters, stethoscopes, ventilators, and beginning tonight, marking the size of pressure sores and hoping to God they don’t become infected or break down even more.

Some days it truly feels like we’re just holding Humpty Dumpty together with a roll of duct tape and a prayer. But isn’t that the same for all of us? We’re all broken, hot messes. Except most of us aren’t broken on the outside. The gift of Hayden is, though his brokenness is in his body, his spirit is whole and he’s taught me infinite lessons of love. No matter how this thing shakes out this side of heaven, I know that one day, his redeemed body is going to be nearly as beautiful as the One who heals it.

Getting Creative with Aaron Watson’s Album Cover in Coleman

Not everyone is able to say they’re friends with Abilene native and country music star Aaron Watson, but one North Texas boy is able to say that he is. Nine-year-old Hayden Hnesley has spina bifida and he and Aaron have a close bond. Aaron’s new album, Vaquero, is set to release soon and he wanted to get fans, like Hayden, involved in the album.

Source: Getting Creative with Aaron Watson’s Album Cover in Coleman

Home Is Where Our School Is

You know that nudge? You know, that really, really quiet inner voice in your spirit that ever so gently nudges you along? You have to get real still and real quiet to hear it. Lots of times life keeps us all so busy and occupied that we forget to get real still and real quiet to do much listening. Personally for me, there were many months of 2016 that I spent with my “listening ears” turned OFF instead of ON.

For those who know me, you know I am as stubborn and strong willed as they come. Yielding that kind of spirit to the Lord is something He and I work on daily. I felt God had been putting homeschooling on my heart for the better part of a year. It was something I often thought and wondered about. My gut told me it would be a wonderful fit for Hayden. My strong willed spirit said we had a plan in place, hours of ARD meetings behind us, a plan we had made and by all means we were going to stick to. I could’ve written a list of cons vs. pros and come up with a 100:1 reasons why public school was where Hayden was going to remain. But, somewhere, deep in the back of our minds, Ryan and I always knew there would eventually come a day when Hayden would “age out” per se, of public school.

In 2016, I entered a difficult time in my life. I was feeling down, discouraged, lost, abandoned. I think everyone endures different seasons in life. But this one was the roughest I had ever been exposed to. Now, I have never been one to have panic or anxiety attacks. Even with everything we have going on in our “normal” life, and people always telling me about the stress I’m under *eye roll emoji* ;), I never really felt stressed out – just “my normal.” Until 2016. That’s when I began waking up in the middle of the night from a dead sleep to be tortured by my own body. This got my attention.

I knew I needed to address some things going on in my life and get to the bottom of the cause. I met with a new doctor to review things from a medical standpoint, but I also began meeting with a wonderful Christian counselor who I have now grown to adore. It was during my work with her that I had a realization that possibly I was so strong willed and hard headed that the reason I felt so oppressed was of my own doing. It’s like if you were holding onto a rope so, so tightly that your hand has no more blood flow and the rope you will not let go off is actually what’s dragging you down deeper. The minute you let go and let God take over and trust Him, He pulls you out and the weight that was dragging you down can be replaced by freedom. There were so many things in my life that I was trying to control and worry over that the rope had me and it was dragging me down with fierce power lower and lower. As He promised, God never left me; He was just waiting on my old hard head to let go of the rope so He could carry me. I’m now reminding myself often that I don’t have to be in bondage to any thing, any worry, any person. I am free. And who the Son sets free, oh is free indeed!

This whole thing circles back around to homeschool because there was a day my counselor and I were discussing all the things that stress me out. We rated each individual item on a 1-10 scale and they were all mostly 12s. 😉 And as an exercise she asked me, “Picture yourself homeschooling Hayden. What’s the stress level doing that?” I didn’t skip a beat. It was a 0, no question. Five days later I withdrew him from public school. And would you believe, that right this minute, I can’t even tell you what all the 12s were on that list that day. The minute I heeded the call the homeschool Hayden, I had this incredible, overwhelming sense of peace and calm.

And you know what, I think Hayden did too. We began homeschooling in October, and I would say within just a couple of weeks, he was a completely different child. And I was a different person, too. The weight lifted off, joy was restored. Now, please don’t misunderstand me and hear that I’m never stressed and always organized! Ha! It’s still a hot mess over here and some days are just a wash and we try again the next day. I just think when you’re doing the thing He called you to do, the peace you find in that is so wonderful and reassuring that it makes those everyday stresses more bearable.

We loved his public school team and his teachers, therapists, principals, and they all bestowed their blessings upon us and wished us well. We still keep in touch with them and visit campus on occasion. Grayson still attends that school as a Kindergartner.

Hayden and I both adore homeschool. I treasure my time with him. His health has improved as he is more well rested and gets to sleep past 5:40am each day. He has energy in the evenings and has more play dates as a non-student than he did when he was attending school. The things Hayden endures daily to maintain a baseline of good health is vast and he was doing sets of treatments, catheterizing, g tube feedings all at school plus trying his hardest to get work completed like his other 4th grade peers. Now that we’re at home, he just thrives. I don’t even know how to put it into words. His sense of humor is back. He’s got energy. He has so much interest in learning about topics that he thinks of himself and he asks critical thinking questions – none of which ever happened when he was in public school. And it’s not because it wasn’t there, he was so exhausted and quite honestly, I think he felt an enormous amount of stress from the work load and trying to please everyone and do his best. Bless his soul.

None of us know how much time on this earth we’ll get to enjoy with our loved ones. For our family, this thought is always on the forefront of our minds. We want Hayden to have the best quality of life for as long as possible. And I would say Hayden’s quality of life has improved ten fold since October. Heck, so has his confidence level! I love the honesty, the humor, the love this sweet child offers the world. We may not be taking the STAAR test in this house, but that’s not what life is about anyway. It’s about living your best life, loving people and showing God’s love to others and if those are the only lessons Hayden takes away from his entire homeschool experience, then I have done my job as his mother.

Cheers!

As 2016 comes to a close and I reflect on all it brought myself and our family, my gut reaction is to scream “good riddance!” This year was one of loss and heartache, struggle and fear. But it was also a year of hope and relationship. This was a year that through leaps of faith and leaning on God, our family unit grew closer and our relationships deepened, both with each other and with God. There are many areas of my life that I will continue to strive to improve upon in 2017. And I think I will have 2016 to thank for that. For without the difficult times, truly enjoying the good times life brings us and embracing life fully, in both beautiful and in difficult times, would be near impossible. For me, I press on and look forward to being vulnerable and letting God work out the details of this life. I aim to let go of my desire to manage what it is that He is doing in us and through us.DSC03500.jpg

From our family to yours, we wish you a Merry Christmas and a Happy New Year! Blessings and love.

Looking at the Bright Side is Causing Me to Go Blind

I am not a self proclaimed pessimist. I feel more like a sincere realist who just leans toward the reality of how hard life is. For the sake of your feelings, though, I do my best to comfort you. I don’t want you to worry. So when I share with a friend or acquaintance something difficult our family is enduring, I like to tie it up with a cute little bow like, “It’ll work out” or “It just is what it is” or “What can you do?” and then *insert cheesy smile here*. That’s just my M.O.

 

However, lately, it’s exhausting. I don’t think God meant for us to walk around polishing up crappy situations and faking like it’s ok. Sometimes, life is hard. Sometimes, circumstances suck. Sometimes, it’s just not fair. And it’s ok to say that. That’s what makes it life. I guess experiencing the bad and the good in life is what makes it beautiful. But that doesn’t make it any easier to endure. I believe the hope I have in Jesus is the only thing for me that makes it remotely bearable. Dare I say, Jesus can relate? I think He knows what it’s like to be in a circumstance that sucks. And I think He knows about something in life being unfair. He gets that living on this earth is hard. That’s what makes Him relatable. He already did this. For us! And thank God He provided us a way out and a hope and a future.

 

Our family’s Struggle Du Jour is related to Texas and the changes it is making to its Medicaid program. I realize that this sort of stuff is a snooze fest to people who aren’t directly affected. A decade ago that would’ve been me. I would have felt bad for someone dealing with it, of course, but then I would’ve gone on with my life and never thought twice about it. I don’t get that “privilege” any more. I am right smack in the middle of it. I find myself again in a battle I didn’t choose to fight. And it’s really, really easy to want to just wallow in it and get down in the dumps. But surely that’s not what God wants for me. I think that’s what the enemy wants. (But he already lost the battle so he’s pissy anyway.)

 

Traditional Texas Medicaid is transitioning to a Managed Care Organization which, in a brief synopsis, means the state is privatizing health care coverage to a for-profit company (for us – our choices in our county are Children’s or Amerigroup). My son has TWENTY FIVE doctors, medical equipment companies, pharmacies, nursing agencies, and respite agencies. I am “blessed” with the joy of calling each one of them and asking them which MCO they’ll be accepting. Then I get to use math, or maybe it’s statistics?, and take an average of which MCO – either Children’s or Amerigroup –  has the majority of our specialists and then pick that plan. The rest of the doctors we need? I guess I’ll just have to choose new ones. (Great continuity of care, right!?) There are 5,000 sweet, precious children in Texas on a medical waiver, MDCP, just like Hayden who are doing the same thing. And we’re fighting like crazy and doing all we can to fight this change and feeling completely ignored by the state of Texas. At times like this, looking on the bright side of life is the last thing I’m interested in doing.

 

For me, I could easily lose myself in the fear of the possibility of having Hayden’s nursing hours taken away. The first thing that will happen when this switch is forced on us is a new assessment by the MCO and in that, the effort would be to “cut costs” – I mean, this is a for-profit company we’re talking about. I just can’t imagine their goal is offering us all of the coverage we’re used to using over the last nine years. The unfortunate thing is, we only have one nurse at this time working with Hayden. We are approved for 24/7 coverage. But we have one nurse, due to staffing issues and low recruitment by our staffing agency. That means every single night of the week, Ryan and I take care of Hayden while he’s on his ventilator. We administer his bowel program every morning at 5:40am. Every single night. Every single morning. And one day a week, during the day, I care for him and our other kids alone. And two days a week, during the weekend, Ryan and I take care of the kids as a team. Hayden needs a one on one nurse with him 24/7. A doctor said so. But there’s just no staff at this time, and so as parents, we step up and take care of our child, just like you would do, too. My biggest fear, though, is that the new MCO will come into our home and say, “Well, you’ve been fine since July without 24/7 nursing help so, you’re good without all these ‘unnecessary hours’. *DENIED*”

 

I know I’m not supposed to have a spirit of fear. God told me that in 2 Timothy 1:7 when He said, “For God has not given us a spirit of fear and timidity, but of power, love, and self-discipline.” I just want to be very honest in this moment, and maybe I’m the only one who will say it out loud, but do you know how HARD that is?? Maybe it’s just me. No? It is hard to trust God and just “know there’s a plan.” That is a very difficult path to walk. I’m not sure I have any answer for that except to just call out to the Lord. I have no other tips or advice. No special meditation mantra or some self-help book that will give you the strategies you need to “conquer fear and be brave!” Sometimes, the only the thing left to do is to hit your knees and cry. Literally. He is your Father. Your Dad. He’s so sad for you when you’re sad. He hurts when you hurt. He knows your heart is pounding in your chest and you’re feeling anxious. He understands. The good news is, He can see you on the other side of this valley. He can see you on the mountain top. And the thing is, He’s the One who can give you the boost to hoist you up the side of the mountain as you claw your way out of the valley. It may be that I spend the rest of my time on this earth in a valley. Truly. I may always have struggles and never feel I’ve reach my “mountaintop” of peace and freedom. But, beloved, if your trust is in Jesus, I assure you, He will take you to the mountaintop. And it will be for eternity. And these trials of this world will just make the view from the top of the mountain so much sweeter because you’ll appreciate the heck out of it!

 

So, if you’re tired of looking on the bright side that this life has to offer, I am with you. Thank God there’s a calm after this storm. Lauren Daigle has a song with lyrics that say, “When You don’t part the waters I wish I could walk through, When You don’t give the answers as I cry out to you, I will trust, I will trust, I will trust in you.” I’ve been through some waters I did NOT want to walk through and for the life of me I couldn’t figure out WHY God would want me to walk through such nasty, muddy, gross waters! But all we can do is trust in Him. And try to be honest with each other when we’re hurting and when life is hard. We can’t win ’em all. But we can love on each other when we’re in the valley.

 

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(If you want more information on the fragile children being affected by this Medicaid change and for ways YOU can help, visit protecttxfragilekids.org or follow @fragilechildTX on Twitter.)

*Insert Shameless Plug Here*

Over the last year, I have enjoyed blogging here and there about key events in our family’s journey. When a post comes to life, it is strictly because the Spirit has moved in me and I literally HAVE to write it down. My prayer is that there is a reason for that prompting and that someone has been touched by our story and our openness to share.

I do want to use this post as a “housekeeping” of sorts to report that my custom domain name (haydenrocks.net) is no longer functioning. However, the blog is alive and well. Just at a new address! You should still be able to access my older content at haydenrocks.wordpress.com as well as new blog posts that will be coming your way!

I also wanted to share with the cyber world that Hayden is currently selling T shirts as a fundraiser for his Walk N Roll for Spina Bifida team. I am so proud of the shirts we’ve created this year and I want to shout from the rooftops that YOU should buy one!! The campaign is currently open for SIX MORE DAYS at booster.com/walk-n-roll-2016.

Who wouldn’t want such a cute shirt that uses hundreds of words to describe Hayden perfectly!? 🙂

T shirts are available in a ladies cut, unisex cut and in youth sizes.

Please feel free to share this Booster campaign (and this blog) with your friends! We are in the home stretch of our fundraising efforts and we really want to reach our goal!

Thank you for supporting the North Texas Spina Bifida Association – and Hayden!

It’s a Give and Take

When you have a child like Hayden, there is a very tangible reminder of how much grace my family and I need. When you see a family struggle with taking care of their child and his medical needs, doctor appointments, therapists, anxieties and panic, and all the other things that come along with a special needs child, people looking in on this situation are overwhelmingly kind and gracious. People often have a special interest in Hayden, which is so lovely. And prayers for him and our family and all that we endure. We covet those prayers and appreciate every person who loves on our family from near and far. It’s why we feel extremely blessed to have the opportunity to have Hayden in our family and be used in this special role God has given us.

I am thankful people give us so much grace because there are plenty of times when life is just too much and I can’t do the things I want to do in a way that typical people do. Or when we have to make adjustments to accommodate Hayden. Or we have to have others be more accommodating to us and our struggles so that life could be a little bit easier on us. And generally, people are more than happy to go out of their way when we ask for something or need to change plans.

This idea of people being so generous with grace to our family because of our visible struggle just made me begin to ponder the idea of what unseen struggles people around me are going through that I’m not generously giving grace to. Jesus said, “My grace is sufficient for YOU, for my power is made perfect in weakness.” 2 Corinthians 12:9.  A couple of things stood out to me in that sentence.

First, HIS grace is sufficient. So while other people’s grace can be incredibly amazing to experience, we don’t always receive grace. But Jesus’ grace is enough. It’s enough. He’s enough. So when we’re upset that someone isn’t more understanding or being kinder or more patient or loving, HE is. And He is enough.

Secondly, His grace is sufficient for “YOU.” The Word doesn’t say, “His grace is sufficient for special needs kids/single mothers/cancer patients.” His grace is sufficient for YOU. Regular old you. Isn’t that wonderful? I know that’s more than I deserve for sure. But it just reminded me that we ALL need grace – and I know that because Jesus said that. He promised to be that for me. But the thing of it is, we’re ALL struggling with something that we need grace for, but it’s unseen. It’s much easier to offer grace to the special needs kid or the single mom struggling or the cancer patient fighting for his life. But you’re not a child in a wheel chair; but maybe you still have a struggle. It’s just that because your body is healthy, the tendency is that people don’t generally go out of their way to be kind and gracious to you. Instead, if your struggle is unseen and hidden to the world around you, people can tend to expect things from you, rather than give grace to you. Maybe your struggle is you were abused as a child and because of that you have significant struggles as an adult; but no one can visibly see that internal battle. So the people around you set your bar just as high as any other “normal” person and when you don’t measure up, they aren’t loving and understanding. There are a million and one scenarios of challenges we all walk through and struggle with that you could plug into that equation.

What’s the solution? Walk around with a sign around your neck that says, “Be nice, I have trust issues”/“My self esteem is low and I think I’m not enough”/“I care too much about what people think about me”? No. I think the solution is for us all to offer grace to everyone, no matter what. Let’s be like Jesus and offer grace to “YOU”. Everyone. To random strangers who don’t know which direction the traffic is flowing – because maybe they just left their baby in NICU and their mind is somewhere else. To the teenage girl at the checkout counter who doesn’t understand how to make exact change when at the last minute you throw her a quarter to make even change – because maybe she has a learning disability and relies completely on the cash register to tell her what change to give out. Or maybe to the family member, who shares your DNA, who said something offensive to you and hurt your pride – because maybe they struggle with healthy communication and were doing the best they could and it came out wrong. You fill in the blank. There are an infinite amount of opportunities every day. If the whole point of this life is to always be striving to be more like Jesus, get it, y’all! There are countless chances every single day when you wake up to get it done. If you give me grace, I promise I’ll be doing my best to offer it back to you and everyone I encounter. It’s the least I can do.

Play Dirty

From personal experience, go with me here for just a moment…

The enemy [Satan] comes to KILL, STEAL and DESTROY. (“The thief comes only to steal and kill and destroy…” John 10:10) Sounds rude, right? He is! Sorry to bring up this huge bummer in our “rainbows and lollipops, Politically Correct” world we live in.

Bad news: If you are a follower of Jesus and you think you have no enemies, you’re wrong. You have THE enemy on your tail. Or at least you should! If you’re not feeling his nasty breath breathing down your neck you may want to take two seconds and evaluate what you’re doing for the Kingdom. He generally doesn’t like to interfere unless he feels threatened (much like the snake he is). But go on. Threaten him. Don’t be afraid. Because…

Good news: Spoiler alert – he loses. And he knows it, too. Which is why he’s getting real fired up as his time draws to a close. Jesus already won the victory. And maybe it’s a bit of “delayed gratification” waiting to see the enemy thrown into a lake of fire for eternity (“And the devil, who deceived them, was thrown into the lake of burning sulfur, where the beast and the false prophet had been thrown. They will be tormented day and night for ever and ever.” Revelation 20:10), but if you’re in Christ you’re FREE. (“It is for freedom that Christ has set us free. Stand firm, then, and do not let yourselves be burdened again by a yoke of slavery.” Galatians 5:1)

Recently, I have been under attack by the enemy. Still am, actually. But I’m tired of just letting him win. I lost my fight there for a while and now it’s “game on!” I just completed Breaking Free by Beth Moore, probably her most infamous study to date. I was fully expecting to have fireworks going off during each day’s homework and each week when I met with my small group. But that just wasn’t the case for me this go ’round. It wasn’t until I got to the [literal] last page of the study that I realized what my problem has been.

Beth says, “Go where He goes and let Him fight for you. Invariably when we’re most exhausted, we’ll find we’re expending more energy fighting the enemy than we are seeking God’s presence. More than you seek to win, seek Christ! More than you seek to defeat the enemy, seek his Foe!” (Moore, Beth. Breaking Free 2009)

This punched me right between the eyes. If you are weary, you’re spending all of your energy fighting the enemy instead of drawing near to God and intertwining yourself with Him. He’ll fight your battle once you’re mixed up with Him. You don’t need to be weary. I knew good and well the enemy had been after me and I was losing. my. mind. thinking about how he will never leave me alone and this is a never ending battle and the nerve of this guy. When what I needed to be doing is leaning into the Lord and drawing closer to Him instead of letting the enemy use himself to build a wedge between me and the Father.

Spiritual warfare is a real thing. And whether or not that is something you are familiar with, you should just know that. If you believe there are angels watching over you and protecting you and fighting battles for you, then please know that the counterfeit wanna-be, Satan, has his own crew that are also watching and trying to destroy you and shut you down. If you are in Christ, you are SEALED and the enemy CANNOT take your salvation away (“Now it is God who makes both us and you stand firm in Christ. He anointed us, set his seal of ownership on us, and put his Spirit in our hearts as a deposit, guaranteeing what is to come.” 2 Corinthians 1:21-22).

But if you are in Christ and the enemy can deter you from sharing God’s message, living your life as a living example of Christ’s love and doing work for the kingdom, don’t you see how the enemy is winning? He shuts it down. He puts the fire out and when we aren’t working to grow God’s kingdom, the inadvertent effect is that there are lost souls we haven’t reached out to. Because who knows – maybe the enemy encourages those feelings of insecurity. Or he has you treasuring your image over all things. Or he has convinced you that the money you make is yours and not the Lord’s for you to tithe back to Him. Or he has you thinking that if you let go of that grudge you’ve held onto for years you will look weak. Or perhaps he has talked you into believing that the mistakes you’ve made are much too big for God to forgive you. Don’t believe him. He is LYING. He is a LIAR.

There is one word that sets you free. “JESUS.” That’s it. You say that name out loud when you’re being attacked and the enemy HAS TO FLEE from you. That’s how you win. Because the battle was already won on the cross. You just have to pick up the sword He gave you and use it. I read during the Breaking Free study how important scripture can be to really breaking free from strongholds. The study recommended writing scripture on note cards and putting them on a ring and carrying them with you. When you’re feeling tempted or attacked, start reading your scripture card out loud. The enemy won’t stick around to hear it. He already knows the Word. And its power. Be victorious. Play dirty. He is. So don’t be afraid to beat him at his own game. Your team already won. Just remind the enemy of that. And then, go be a conqueror for the kingdom.

If you’ve never heard of this concept of “spiritual warfare” before and want to read about it, there are some really great novels about spiritual warfare and examples of it in the human life. Some of my favorites are “The Lights of Tenth Street” by Shaunti Feldhahn , the “Angels Walking” series by Karen Kingsbury, and “This Present Darkness” by Frank Peretti.

 

The Day My Marriage Ended

Every little girl has hopes and dreams of being a bride. Every little girl has an imaginary wedding and the most beautiful veil she can fashion from the biggest pillow case her mama keeps in the house. Every little girl takes care of her baby dolls and mothers them with the utmost care. Right?

I remember playing “Bride” as a little girl and daydreaming of what it would be like to be married. And low and behold, it happened. I met my husband in college as a classmate and coworker and after a friendship we began dating and then married. What do you know? – my childhood dream had come true. Just like that.

But you know what little girls don’t dream of? Having their worlds crushed in one brief phrase that changes the entire path of the rest of their life. One spring day in 2007 in a clinic in Austin, Texas, my marriage had a head on collision with reality. No more was the imaginary baby doll I was in charge of caring for a sweet little healthy one whose mouth moved when you held a bottle up to its plastic lips. The new reality was this firstborn child I carried had a neural tube defect and would need immense care after birth and for a lifetime.

And that was the end of the marriage I had known for a handful of newlywed years. Our lives were turned upside down. We were never going to be the couple we were ten minutes before meeting this doctor. No matter what the outcome was for us or our child, each of us, nor our marriage was ever going to be the same. If our baby died: we would be changed. If we terminated this experience: we would be changed. If we had a special needs child for the rest of our lives: we would be changed. There were just no two ways about it.

In those solitary moments, when the doctor shared critical information with us and then stepped away to allow as much time as we needed, my marriage began the first of many morphing stages. Though extremely difficult, it was beautiful. Because in that minute, standing there in each other’s arms and crying, no one else on this planet could explain what each of us felt. That bonds you. It is, literally, like being in a head on collision alongside someone and the two of you survive it and tell everyone this miracle story of how you walked away from the wreckage, not without bruises and cuts, but you walked away. Hand in hand.

I still mourn the marriage I will never have. I miss never getting to know my husband as a dad to only typically developing children – a life where he’s the baseball coach and he has hobbies and he enjoys being with a group of guys for poker night each week. I am often curious about what differences life would offer if we didn’t have to discuss supply orders, private duty nursing staff issues, and conflicting schedules that interfere with the IEP/ARD process at our son’s public school.

Even though I miss him, I know I would have loved him dearly and he would have been fabulous. Because he is fabulous now as a special needs dad. Which is a hard job and an ugly journey to walk oftentimes. But he does it with grace and endurance. And I thank God I have been given the opportunity to walk away from life’s head on collision with this man right by my side.