This _____________ Life

I find a little bit of solace in the fact that the life I lead, as hard as it is, is the only life I know. I will never know what it is like to have all healthy children. I will never know what it’s like to bring home your first born, two day old baby and marvel at becoming a family of three. I will never know what it is like to go to sleep at night and not keep one ear open listening for the pulse oximeter or ventilator alerting of a problem with my child. Yet, in a way I wonder, is it better like this? That this is the only way I will remember parenthood. It’s the only way I know.

It’s not an easy road. And it doesn’t mean that it’s not isolating, exhausting and draining. Sometimes I find myself in low valleys where it would be easy to wallow in my suffering, my loss. The loss of having only healthy children. The loss of bringing home a newborn baby rather than a seven month old from a NICU. The loss of going to sleep peacefully each night and being able to rest carefree all night. Those are all very real losses.

If you’ve read my posts before, you know I relate often to music. There is a Texas Country artist, Cody Johnson, who recently released a song called, “The Only One I Know (Cowboy Life).” The song portrays the difficulty a cowboy, working the rodeo circuit, feels as he is alone out on the road, ridden with failure and injury from working the rodeo. I can relate to this song. Not as a rodeo contestant, obviously, but as the mother of a special needs child, living this type of life that is uniquely isolating. In the chorus, Cody shares,

“Just some broken hearts and broken bones, and a hell of a whole lot of bein’ alone…… this cowboy life might kill me, but it’s the only one I know.”

That’s a completely accurate description to this life I lead. I’ve had plenty of broken hearts and my fair share of being alone. In the bridge of the song,

“Yeah it’ll kill me, before it ever lets me go.

It’ll kill me, but it’s the only life I know.

And I’d rather die than be caught crying, so I’m just smiling, wear my hat down low…”

For me, that is relatable. This life may kill me yet, but I don’t know any other life, or any other way. And my pride wants me to grin and bear it, hide the tears and wear my hat down low so no one knows the struggle.

But it turns out, though my heart may break at times, and though I may feel alone, I am not alone. And even when my pride wants me to hide my tears and my sorrow, my Father keeps track of them all and He is with me. “You keep track of all my sorrows. You have collected all my tears in your bottle. You have recorded each one in your book.” Psalms 56:8

I recently realized why it is He’s recording my hurts in a book. It’s because eventually, when all is said and done and I see Him in Glory, on that day, all will be restored. He is keeping the record so He can set it right. I trust in that and I accept that whatever it is that we endure on this earth is for a greater purpose that we cannot fathom this side of heaven. No matter how miserable the sufferings are, there’s a greater good.

So I ask you, what would your song be? “The Only One I know – Single Mom Life”?, “Special Needs Life”?, “Dead End Job Life”? Whatever you are going through and whatever you are enduring that feels like it is just the only way you know, God wants to set it right for those who trust in Him. “He will remove all of their sorrows, and there will be no more death or sorrow or crying or pain. For the old world and its evils are gone forever.” Revelation 21: 4


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.