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.

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.)

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.

 

It’s Not You, It’s Me….

In about one hour from now, one of mine and my son’s favorite artists will be getting on stage for a concert in my hometown. The wheel chair accessible tickets my mom purchased for us to enjoy are being used by someone else. Someone else will enjoy the concert and hear the beautiful music that my son and I sing along to in the car. And that is life.

I have missed a great deal of events in my lifetime as a special needs mother. I missed the opportunity to stand beside my best friend as her bridesmaid at her wedding because I was pregnant and needed to be close enough to the hospital in case the baby came sooner than we planned and needed the Level III NICU. I missed attending the wedding of another childhood friend because my son had already been born and was two months in to his seven month stay in that Level III NICU. I’ve missed countless birthday parties, sporting events, dinners, you name it….I probably flaked out on it. It’s not you, it’s me.

More recently, I have just this week canceled an upcoming weekend at Spina Bifida Family Camp, tonight’s concert in my hometown, and most likely we’ll be completely reworking a family vacation we have saved for and planned for over the last 18 months. But none of those events are my number one priority. Serving Hayden and making sure he is healthy and safe is the job I have been called to.

I know caring for Hayden, and my other boys, is my calling. That is not something I have any doubt about at all. I know it’s a calling because God has equipped me for that purpose. The old me, before Hayden, would never have been able to endure and manage the life I lead now. That is how I know it is divinely appointed and orchestrated by God. He equipped me to fulfill His purpose and to use this life and Hayden’s precious life as a beautiful platform to share His love for Hayden, for me, for you. The old me would have loved to roll over, play dead and offer to the world every pity card I could dig out of my back pocket. “Is this fair?” “Why me?” “I don’t deserve this!” “What kind of life is this for Hayden?”

But God made a new me. By offering up His son, Jesus. Jesus went through something not fair that He didn’t deserve so that Hayden and the entire world could have a beautiful life. Jesus bore all of our sins so that we could be made new. And I completely trust in that gift. My number one priority is serving Hayden and my children. The most important thing I could ever do for my children is show them the One who gives life its purpose.

I hope that tonight, in Longview, Texas, Francesca Battistelli sings the words that bring me to tears every time I listen to them.

“Now I’m filled by a love that calls me to action
I was empty before, now I’m drawn to compassion
And to give myself away

That’s the motion of mercy
Changing the way and the why we are
That’s the motion of mercy
Moving my heart
Living for the lost, loving till it hurts
No matter what the cost
Like you loved me first
That’s the motion of mercy, oh
God give me strength to give something for nothing
I wanna be a glimpse of the kingdom
That’s coming soon”
-Motion of Mercy by Francesca Battistelli
(I highly encourage you to listen to as many of Francesca Battistelli’s songs as possible. They all have such a wonderful message and she has a beautiful voice.)
I live this song everyday. I pray this song everyday. All I want to do is be a glimpse of the kingdom that is coming soon. It is coming soon. Because of His mercy, because He loved me first, I am now filled with His love and His compassion and I am blessed with an opportunity each day to give myself away to a purpose far greater than myself. And I don’t mean just to Hayden. I mean to God. I can dedicate each day, each action, each word, to Him. He has given me the strength and in all things my prayer is to glorify Him. That’s the motion of His mercy. He will change “the way and the why we are.” Let Him. Let Him change you and feel the joy from giving yourself away to something more than self. Jesus said in Matthew 16:24-26 NLT, “If any of you wants to be my follower, you must put aside your selfish ambition, shoulder your cross and follow me. If you try to keep your life for yourself, you will lose it. But if you give up your life for me, you will find true life. And how do you benefit if you gain the whole world but lose your own soul in the process?…”
I know that the mission handed to me is to use Hayden’s precious life and our family to show others Jesus. I don’t understand why this is the lot I have been given and I don’t need to. I’m not negotiating with our Creator over this. I trust Him. It’s not easy. But daily I’ll choose to take up my cross and follow Him. And if He’s not leading me to the Francesca Battistelli concert or to Spina Bifida Family Camp or to the social event of the year, I have to believe that He can still use me. He can still move in my heart from the PICU in Plano, Texas as my son is hospitalized again. He can move you, too. Ask Him. You’ll see.