I Had an Adoption

Years ago I wrote a blog post addressing what I felt the role of the “church” should be in the pro-life/abortion space. The overall sentiment was if we’re wanting to be the hands and feet of Jesus we should show up for those who are in such turmoil and distress that they would choose an abortion during a crisis pregnancy. We shouldn’t be picketing outside of Planned Parenthood and condemning women who are having to go through tremendous pain, but rather we should be offering them comfort and prayers on their way into and out of the clinic. (Of course, this was under the pretense that the women in this circumstance were non-christians who don’t have knowledge of or a relationship with Jesus.) 

In writing that blog post, I offended some people and then I let the enemy haunt me with that for way longer than I should have. It kept me from speaking up and saying anything because I wouldn’t want to offend anyone. But, to love my neighbor well, it may take offending someone with the Truth. The motive of sharing and bringing to light the truth of the Gospel is LOVE. And without love, we’re just clanging cymbals. (1 Cor. 13:1)

I am exhausted by Christians sitting quietly by and not saying anything about any of the controversial topics being shoved down our throats. Why aren’t we speaking up? Is it because we’re trying to be meek and quiet? (Lest we all forget that time Jesus flipped tables… but I digress.) We don’t want to offend someone? We’ve had abortions/same sex attractions/pornography addictions/racism/etc. in the church and so we let satan shame us into keeping our voices silent? We don’t want to lose friends? We would rather not step on the toes of the lost in an effort to make the gospel more “palatable”? This is just my first draft brainstorm list of what the heck we’re doing as a church.  Certainly there’s loads more of why we’re doing what we’re [not] doing.

In a world that’s screaming that anything goes and everyone gets to take up space and whatever your truth is is right and acceptable, why don’t we Christians get to share our stories? Our ideas and our thoughts? The ACTUAL truth from Scripture in an effort to win lost souls to the kingdom before it’s too late? I don’t get it. So, in the spirit of sharing “our truth” and “taking up space,” here goes:

I believe life begins at conception. I believe God formed our inmost parts and wrote our days in His book before the world was even created. I believe all humans are made in the image of God and consequently are image bearers of God. I believe it is an affront to God as creator for a person to decide that God’s creation is not worthy of remaining alive. So, to summarize, I believe the Bible and I’m “pro birth.” (AND pro life, which I’ll get into shortly.) But I also believe the Bible says that we need to help the sojourner and the oppressed and the poor and the widow and the orphan. (see: all of the Old Testament law) Also, hungry people, thirsty people, strange people, sick people, naked people, people in jail. (Matt. 25:35-36) The church as a whole, sucks at this. There, I said it. We want to scream and shout how horrible a woman is for having an abortion, but we don’t want to help her if she chooses life. There is SO MUCH WORK to be done in this space. Obviously, I’m not going to solve those issues with one post in my little, tiny blog corner of the world wide interwebs. But I do have a story to tell. And so do you. Why don’t we start with just telling our stories?

Because I believe all the aforementioned things, my family and I realized we couldn’t be pro life and do nothing. So in 2018, we got licensed to become respite foster parents. (Foster parents who provide short term relief for foster families who need a break for various reasons.) Up to this point in 2018, I had only served the pro-life mission in a “minor” contribution by volunteering at a crisis pregnancy center when I was first married and had no kids yet. Fostering was a much bigger, harder commitment to serve in the pro life space. Through fostering, my husband and I ended up adopting our daughter in late 2019 and then adopting her twin baby brothers in late 2021. (Lots of opinions on that as well and not something I plan to tackle at this time and in this space.) Our experience with the “system” was eye opening for sure. Proximity tends to do that to us. It sheds light on places we maybe didn’t even pay attention to before. The system is all SO broken. The world is so dark and hard. But if each believer just does something, we can shed light on the dark world. I mean, OUR light. THE light. We’re supposed to be a light like a city on a hill. (Matt. 5:14) So why aren’t we shining? Do we need a new light bulb?? What’s the deal?! 

Am I saying that every single Christian needs to foster and adopt? No. (Although I do believe that all Christians should be doing SOMETHING to help orphans and widows per the command in the Bible, but that could look like dropping off diapers or a meal to a foster family or a million other things that don’t necessarily mean foster or adoption. And it’s worth noting here, that there is LOTS of work to do to help support women in crisis pregnancy and to also provide birth control to prevent unwanted pregnancy, but that’s a debate for another day.) This is just MY pro-life story. I found a way to serve and go beyond yelling and screaming outside of a Planned Parenthood about pro-birth issues. Is this the only way? NO. God can use all of us in a million different ways and in a million different spaces to shine our light and to help save innocent lives in this politically charged space.

Now, what about Christians and people in the church who are pro-choice? This is where things start to get blurry. I am genuinely confused by how a professing Christian who has read the [entire] Bible could choose to promote and advocate for abortion. I’m not meaning that as judge-y and “holier than thou” as it sounds. I’m legitimately confused by this. We see in Psalm 139 that “my frame was not hidden from you when I was made in the secret place, when I was woven together in the depths of the earth. Your eyes saw my unformed body; all the days ordained for me were written in your book before one of them came to be.” If we believe that and we believe God is the creator and sustainer of life and that humans are image bearers of Christ, how are some of us proponents of ending the life of unborn image bearers? This is so confusing to me. Are these believers saying that women should have a choice about what happens to the mother’s body but not speaking up for the baby’s body also? Like, I just don’t get it. Is the mother’s life more valuable because she’s alive outside of a womb? And if it’s about “no uterus, no opinion” does this female baby (with a uterus) who is being aborted have a say in the matter or no? Shouldn’t we try and state her opinion on her behalf since she’s voiceless? And is it possible that we’ve made our stance and wanting to be “right,” into idolatry and placed it above worshiping God? There’s an old adage that I teach my kids that says, “Tell me what occupies your mind and I will tell you who your god is.” It goes along with the same idea that how you respond when something is taken away from will show you what place that thing/idea had in your life. I hope that we’re not putting ANYTHING above God in our lives. 

I learned from a pastor once that we should expect unbelievers to behave like pagans. If someone doesn’t follow Christ, then of course they’re going to follow their own desires and not lay down their life daily and pick up their cross or honor God with their thoughts/words/actions. And I think we can all agree that the world is lost and broken and that satan [currently] rules over this earth. And Jesus said that the devil was a murderer from the beginning and that there is no truth in him. (John 8:44) Jesus also said, “but because I tell the truth, you do not believe Me…. He who is of God hears God’s words; therefore you do not hear, because you are not of God.” John 8: 45. We can’t expect women who don’t know God to make choices that reflect God’s character and commands. So the best advice I can offer to those of us who believe in the sanctity of life (in ALL stages and circumstances), is to trust God and believe He is who He says He is, let our light shine in darkness, change our proximity to difficult situations and get involved in practical ways, and freaking share the Gospel in order to save lost souls from an eternity separated from God. 

So, in conclusion, I’ll go first and share the Gospel here: God LOVES you! No matter what sins you’ve committed He loves you and has made a way for you to be forgiven. God is holy and although He loves you, He is off limits to you unless you are holy and sinless. So He sent His Son, Jesus, to make a way for you to become holy and sinless. Jesus lived a perfect life, died on a cross and took OUR punishment for all of our past, present and future sins. Romans 10:9 tells us “that if you confess with your mouth the Lord Jesus and believe in your heart that God has raised Him from the dead, you will be saved.” Upon that confession and repentance, you will receive the GIFT of the Holy Spirit and that’s when things really get lit 😉 The Spirit guides and directs you in the words you use, the choices you make, the causes you support. It is for freedom that Christ has SET US FREE! (Gal. 5:1)

Just Over the Hilltop

We recently had a beautiful room renovation happen to our main bedroom. It was long overdue, to be honest. We’ve lived in our home for nine years and up until now, we had never done a single thing to our bedroom – no paint, no curtains, not much cleaning, I confess, and it was becoming the “catch all” room for any of the kids’ junk that didn’t have a home or paperwork that needed to be filed or toys that went to time out; our room was where everything came to die and collect dust and receive curses from me as I went to bed (and woke up) in a space that was for sure not life giving, but rather quite the opposite.

The circumstances of how the renovation took place were quite exciting and will be airing this summer on HGTV, actually! (I’ll write more about that experience later.) Going on this fun, albeit challenging, adventure was the only way for us to bite the bullet and get our house [read: bedroom] in order. So we went for it! We moved out for nearly three weeks with friends, handed the keys over to trusted professionals and then, when the time was right, we had the “Big Reveal” and we got to come HOME and see the beautiful space that had been prepared for us. And beautiful it was! – however, the reveal left me even more homesick.

I couldn’t help but see all these weeks of hard work and this massive team of professionals who worked so diligently on our home and think only of my home in heaven. It made me remember how right now, literally this minute, Jesus is preparing a place for us! We’re in the “move out” phase of the reno of life, if you will. We’ve been displaced earth side at this time, but our home (if you know Jesus as your Savior) is in HEAVEN. And as much fun as you can make it being “displaced” – staying with friends, eating out, making the best of the displacement – you should know and feel deep down in your soul that this world is NOT your home. We should be eagerly anticipating the Big Reveal! I, for one, cannot wait for THAT reveal day! I anticipate it and am so eager for it! I’m so homesick for heaven and to see Jesus and what it is He’s been working on for us this whole time!

The day of our bedroom reveal, when I experienced such great joy and happiness at the beauty and splendor of the transformation and pure amazement at how gifted the designer and her team were, I also had the pleasure of observing the pride and joy of their hard work. It was smiles all around that day! And I picture how proud and joyful Jesus will be to get to reveal to us our eternal home that He has prepared for us.

Jesus said, “In My Father’s house are many mansions; if it were not so, I would have told you. I go to prepare a place for you. And if I go and prepare a place for you, I will come again and receive you to Myself; that where I am, there you may be also.” John 14 : 2-3

There’s an old southern gospel song whose lyrics say, “I’ve got a mansion, just over the hilltop. In that bright land where, we’ll never grow old. And some day yonder, we will never more wander, but walk on streets that are purest gold.” (https://youtu.be/YfZ3qyYnzJ0) I love southern gospel music. I grew up on it, in fact. And the thing I love about what most southern gospel music has to offer is that it’s usually directing your eyes to heaven, to the future coming of Jesus and to the hope that can be found in trusting that He will be back to rescue His church. (Acts 1:11) When I listen to songs like “Mansion Over the Hilltop”, “What a Beautiful Day (for the Lord to Come Again)”, “Going Up Yonder”, “I’ve Never Been This Homesick Before”…these songs all remind me that this world is not my home, I have a Savior eagerly awaiting “Reveal Day” that loves me and wants to show me the beauty and splendor of what He has created and that the home there, in heaven, will last for eternity. It will not faint or grow old and weary. It won’t collect dust or need a coat of touch up paint over time.

As beautiful and functional as my bedroom is now, and as much as I love it, it’s still just “stuff.” My treasure is not found in a room, or in a TV show, or in any thing that will be burned up and thrown into the fire. (2 Peter 3:10) I’m trying with all that I have to only store up for myself treasures that are in heaven, where moth and rust don’t destroy. (Matthew 6:19-21) Are you living that way, friend? Are your eyes on eternity? Or on the temporal? We’re running out of time FAST. Now is the time to set your eyes on Jesus. Maybe it’s just resetting your priorities. Maybe it’s a total revamp of where your treasure is. Or maybe you don’t know Jesus at all and I seem like some crazy lady (#hereforit ;)). Whether your final destination is in heaven in a mansion that Jesus is preparing for you, or if the opposite is true and eternal separation from God is where you’re headed, this world is temporal and not your home. This world is a tiny vapor, a mist in all of eternity, and a time for you to hear the Good News of a Savior who loved you, died for you in order to rescue you and is a killer designer and is literally creating a place for you in heaven if you would accept Him and His free gift of salvation.

Vapor Mist Life

These are some crazy times we’re living in, amiright?! If nothing else, can the world just agree that we’re all crazy and it’s not a contest? No matter where we each land on today’s [feisty] hot topics like masks v. naked faces, vax v. no vax, freedom to choose v. mandate everything – there’s many a topic we could choose from to get divisive about. Christians and non-believers alike are fired UP about any and all of the topics and which is right, who is dumb, how it should be… and it seems like no one in any of the camps is having stage fright speaking their mind and reminding you that if you don’t agree with their stance, you are literally THE worst. 

I wonder, though, what would happen if we Christians were this passionate about reminding people that there’s actually an eternal life we should all be worrying about more than this current one we find ourselves in. The Bible tells us like it is – this life is but a vapor. It is a mist, that appears and then is gone. And once it vanishes, it’s on to the actual life that this quick, dress rehearsal one was preparing us for. “…What is your life? For you are a mist that appears for a little time and then vanishes.” James 4:14

Insert spoiler alert here – we are all terminal. We will all die. Every single person you meet on this earth will spend eternity somewhere. Either in heaven or in hell. Why aren’t we screaming it from the rooftops?! Why isn’t that on the newsfeed blowing up your phone? Because the enemy is real and his tactic is to steal, kill and destroy… #oldnews. He’s stealing your peace and killing your hope and destroying your relationships. And we’re just standing around letting him. Well, I, for one, am done. 


If you are a Christian and you believe the Bible, we are instructed (repeatedly) not to fear. Should we walk around and lick doorknobs and be reckless? No. But we should be so focused on making disciples and sharing the Good News (aka the GOSPEL) that clickbait headlines about all the horrible ways we’re going to either die or inadvertently murder everyone we know and love would be irrelevant to us. We are supposed to be living on mission! If we truly love our neighbors, wouldn’t we be sharing Jesus and letting our lost friends know there’s a way to ETERNAL LIFE through Jesus Christ rather than making an idol out of this vapor mist life?!

The situation is this – God is holy. We are not holy. We are all sinners condemned to die. Even if you’re a “good person” and your “family is Christian” and you “go to church” and you “are kind to people #beakindhuman”. The Bible says there is no one good, no not one –  “And Jesus said to him, ‘Why do you call me good? No one is good except God alone.’” Luke 18:19 

But God, in His infinite love and provision, sent His son Jesus to pay for our sins by dying on a cross. Your sins will all be paid for – either by you in hell, or by what Jesus did on the cross. He offers up a free gift to anyone willing to admit they are a sinner and repent and come to Him. Jesus overcame death – after He died on the cross, He came back to life three days later and conquered death, making a way for those of us who accept His gift to live eternally. And not only that, but to have the peace that only He provides as we live out our days on this earth with His Spirit indwelling us.. “Your eyes have seen my unformed substance; and in Your book were all written the days that were appointed for me, when as yet there was not one of them….” Psalm 139:16. God has numbered our days before we were even born and we can rest and trust Him. We can trust that the God who created the entire universe and numbered every person’s days before He created them, is trustworthy and true. Let’s all decide to focus on our mission here on this planet – to love God and love others, to go and make disciples and to share the Good News! .

A Paralyzing Gift

I’m not one of those people who always looks on the bright side of ev.er.y.thing. I try and make light as best I can, but I’m realizing that it’s ok to admit things suck sometimes. It’s ok to feel sad. It’s ok to just sit in yuck for a bit. My biggest pet peeve is when someone tries to “fix” everything for me when I’m having a rough moment. My favorite thing is when someone will just sit in the yuck with me for a minute; that’s really all I need.

However. There really are bright sides to situations that suck. There really are ways it could always be worse. And there is always something to be thankful for. For example…..

SUCKS: My son can’t feel the majority of his body – can’t walk, never will.

JACKPOT: My son can’t feel the pain that comes along with a 95 degree curve in his spine.

I get so wrapped up in the day to day of doctor appointments and medical conversations that often times I forget to stop and actually think what these diagnoses might feel like to a “typical” person. I remember one time, my middle son was maybe two or three years old at the time and was having a major allergy and respiratory issue. I took him to this pediatrician and he offered up a treatment plan and then he said, “If that doesn’t work, we may need to do some nebulized breathing treatments.” I was SHOCKED. How could my sweet, perfect little angel child need a nebulizer?! At this time, I was also doing nebulized treatments for Hayden 4-5 times a day. But that was just Hayden; it didn’t phase me. When the realization hit me of what it would be like for a typical child to have to sit still and wear a mask on his face multiple times a day, I was appalled at the idea.

The same is true here. Hayden has scoliosis and always has…. I’ll bet there was about 15 minutes of Hayden’s life that his body wasn’t out of whack somehow. And those would be the first 15 minutes – and even then, his legs never have stretched out straight, so when they measured his length as a newborn they had to bend the measuring tape to count a measly 16″ inches long. Hayden’s worn a thoracic lumbar sacral orthotic (TLSO) for about 10 years of his life. It usually corrects the curve decently. But about four months ago, his curve started to progress beyond what his TLSO and his seating could accommodate. In the span of four months, his spinal curve had progress from 62 degrees to 95 degrees.

When I first processed that information I ran it through the filter of myself….. here’s another risky surgery we have to debate about doing and then sign consent for. Here’s another long recovery process, more hospital stays, more nights away from home. But then I had this weird moment of clarity when I thought, “What would it look like for a ‘typical’ kid to have a 95 degree curve in their spine? Surely it can’t feel good.” And I realized the fact that he can’t feel the pain was a gift. How happy would Hayden be and how encouraging could he be to others if he was in a constant state of excruciating pain and on medication to treat his pain? At this moment, he can’t feel or move his body, but he’s literally the happiest person I know. I’m able to see the numbness, the absence of sensation as a blessing to him and to us.

It reminds me of Joseph from wayyyy back in an Old Testament story. Joseph had been through the ringer with some circumstances that he didn’t choose (same…) and just when he thought he had finally hit smooth sailing, he was framed and charged for a crime he didn’t commit and it landed him in jail. He sat in jail for two years, but the repercussions of that jail time and some dreams he interrupted for just the right people actually ended up helping an entire nation of people. (Plus, most of Genesis ends up being about Joseph and from about chapter 39 on through the end, you can see how God used Joseph and had actually gifted him multiple trials that were for a greater purpose than just Jospeh.)

So for today, I’m appreciative of the gift of Hayden’s numbness and a body that offers him respite from an amount of pain no child should have to bear. I’m choosing to trust that God’s plan for Hayden’s life, my life, and your life, friend, is for a greater purpose than just for ourselves.

‘Tis the Season

It May. Mayhem, if you ask me. So many school events, class parties, teacher appreciation events, baseball games, graduations. You name it; it’s happening. And all within a five day span it feels like. Next week, my youngest son graduates from Pre-K. Tonight, my middle son completed his second year of Royal Ambassadors (a Wednesday night missions program at our church). In a couple of weeks, Hayden’s former 5th grade public school classmates will be celebrating their final walk through their elementary school halls. Obviously, as a homeschooler now, Hayden won’t be participating in those activities with his 5th grade class. He didn’t participate tonight in the RA banquet at church. He doesn’t fit any certain mold. When Hayden entered the world, in fact, the mold was crushed and obliterated. He is his own person. And we are grateful. But also, we are sad.

It’s hard to sit and watch Hayden’s peers move on in life. We always knew, theoretically, that this would become our reality. And ever so slowly, it has unfolded. This season of the year is just a time when it is on the forefront, rapidly playing out before us. Even if Hayden had remained in public school, he would not find joy in the celebration taking place for his peers. If Hayden had continued in RAs at church this year, he couldn’t have endured the banquet and all of the clapping – in fact, he stayed in the lobby with his attendant and cried because he could hear the applause through the wall and it was upsetting to him.

Oftentimes, I feel like I’m a mom with two families. I have a family of a husband and two healthy [albeit, wild] boys. We go to baseball games and cheer on our boys, we drop off our boys to their Sunday school class and leave them, free as a bird, we even sometimes go on vacations just the four of us and have a carefree, restful time. I also have a family of a husband and a special needs son. We go to doctor appointments and Operating Rooms and we cheer on our boy, we drop our boy off to his attendant at Sunday school and then keep our phones close by just in case the oxygen tank needs to be exchanged or his trach comes out, we sometimes go on trips to hotels with our boy so that he can work behind the front desk and make hotel key cards to add to his obsessive collection. Yet everyday, simultaneously, I am both moms.

The sting of watching my life as a mom not look the way I had always pictured it, doesn’t ever go away. Some days are easier than others and the grief is so faint and so small in my heart that I nearly forget it’s there. And other days, it’s so big and painful I’m not sure how I will get through it. And that is ok. Grief is a part of this journey. I’m in good company with my grief. In fact, Jesus Himself was a “man of sorrows and acquainted with grief.”  (Isaiah 53:3)

I’ve been working with my counselor over the last couple of years and I know myself better, I know how to handle stress and grief better. But mostly, I know my God better. This past decade of living life as “Hayden’s mom” has opened my eyes to so many incredible, priceless lessons. I’ve seen God’s hand work in unbelievable ways. I’ve been gifted this opportunity to walk alongside and just watch His amazing plan play out. However, most recently, over the last two years, my heart has been attuned to not just God’s plans, but God Himself. To really understand the love He has for me, to believe just how loved I am, and to accept how He sees me has been the highlight of my life’s journey. I heard a quote from Bob Goff once that said, “Jesus is nuts about you! Your picture is in His wallet.” What a great illustration! The creator of the entire universe is really, really crazy about you.

See, when Jesus came to this earth to walk as a man, He experienced the same things we do. Grief, betrayal, sadness, exhaustion, hunger, thirst. And He overcame it all through His death and resurrection. And now, I have complete hope in Jesus. I know exactly what my future will look like. I know what restoration will come. And I know what true love feels like. And when you’re loved like crazy by your Creator, you are free indeed; free from the bondage of grief.

“So if the Son sets you free, you will be free indeed.” John 8:36

Shoe Fall, Don’t Bother Me

The weight of always waiting for the other shoe to fall is exhausting. Waiting for the “what if” to happen and always being on edge knowing it IS coming…. an ER trip, an ambulance ride, a hospitalization that could possibly be the final curtain call on your child’s life. These are things “normal people” don’t have to contend with. For my family, we are always in fight or flight mode, whether we want to be or not. I literally carry an ambubag around with me waiting for the moment I have to use it in an attempt to save my son’s life [again]. For families like mine, this is just a typical, run of the mill day of the week. Nothing to see here…

I mourn the loss of enjoying my kids’ childhood. I miss it dearly. I see parents around me who are actually just enjoying their children. They’re taking them to ball games or amusement parks, staying up late watching movies, going to a skate park or a concert. Just enjoying life alongside their children.

My child is work. I’m working nursing shifts. My son’s existence requires 24/7 care. An actual nurse works here in my house and makes a full living and receives insurance benefits because my son exists. I don’t say that to complain; I say that to emphasize that keeping this particular human being alive is work. It’s a J-O-B. Well, more of a volunteer gig for me, but still.

The unfortunate thing of it all is, my other two kids feel the consequence. I can’t fully enjoy their childhoods either. I’m so preoccupied with wondering if I’ve given all of Hayden’s meds, if it’s time to cath him or time for a feed, time for his breathing treatments, time to administer the bowel program, remembering which phone calls I need to make for the day for refills, appointments, dealings with insurance companies.

Everyone has their own problems. I completely understand that. And though mine are so much more intense, I do recognize that no one’s life is perfect and no family is perfect and pleasant and fun all the time. But I would venture to say, for the typical family, the opportunity to have fun easily is more feasible. Our family does have fun, but it is work to master it all. Yet we do it. Because we want to enjoy life, no matter what it looks like. Life is a gift and we try and treasure each day we’ve been gifted and use it to the most of our ability.

“Many are they who say of me, ‘There is no help for him in God.’ But You, O Lord, are a shield for me, my glory and the One who lifts up my head. I cried to the Lord with my voice, and He heard me from His holy hill.” Psalm 3:2-4

No Refunds or Exchanges

You know how some stores have strict and sometimes even nonexistent refund policies? “All Sales Final” posted in the window means, if you plan to shop, you better love what you get and be prepared to stick with it, because there are no take backs.

That’s parenthood, isn’t it? You have a kid and all of a sudden you’re in a situation where, “You get what you get, and you don’t throw a fit.” My special needs son is now ten. And he is my first born. So up until Hayden entered my life a decade ago, I didn’t know anything about even being a parent, let alone a parent to a special needs child.

Now this post isn’t a pity party. (I do have pity parties on rare occasions and the guest list is quite small, reserved seating only for those closest to the madness. In fact, my first pity party was held in the Postpartum unit at St. Luke’s Hospital in Houston in 2007. My mother in law and I were the only attendees and we held the pity party in the hallway while walking the unit, post surgery, trying to prevent blood clots and building up my strength. We took a moment right near the “healthy babies” in the nursery window to bawl our eyes out, right along with the babies, as we thought of how much we wished Hayden was with us instead of in an ICU in the hospital next door.)

I write a lot about how I had no comparison to what “normal” should be when Hayden was born. I count that a blessing. I didn’t know any differently and I just did what needed to be done. However, due to my own blissful ignorance, I have had moments of enlightenment mixed with grief. I remember back when Hayden was about two and half or three, I was by myself visiting a friend who had a child just a few months older than Hayden. This friend and I were seated on her couch and she asked her three year old, “Bring Mommy the phone.” And he did it. Like, he heard her. He processed the request. He used his legs and went over and retrieved the item she needed. And he brought it to her. Just like that! In that moment, I just froze and stared in amazed bewilderment. Is this what kids can do?? Is this what Hayden would do if he could? She didn’t even have to lay out the steps one by one. She didn’t have to give him two choices of which item she needed. She didn’t have to put him on a scooter board, prone, and make sure he was secured so he could pull himself to the item. This was the most amazing thing I had ever seen a kid do!

There was another time, I was out of town for a conference and I stayed the night with some friends of ours who had two kids, probably around the ages of 5 and 1. They had cooked a lovely dinner and the five of us sat down to eat. We each sat in our spot, the kids fed themselves and no one’s oxygen monitor indicated a desaturation, no one needed suctioning; we just sat there and ate. And afterward the kids took a bath and went to sleep. Then there was free time. I do not exaggerate when I say I literally, felt like I was in a resort. No one needed an hour’s worth of treatments before bed, no one needed to have their meds drawn up, there was no troubleshooting of ventilators and concentrators, and after the kids were asleep no one had to prepare tomorrow’s blenderized foods and draw up food bags. It was incredible. And I do not say that to discount parenting typical children who are 5 and 1! That is hard work, too! I have other kids who are typical and I know there are challenges with every child. It’s just that my observations of this family revealed what “normal” would look like.

Even now, as my son is ten and his peers are staying home alone for small amounts of time, my mind is just BLOWN. How is this happening?! Every day that passes, more shots of grief strike at random times when I least expect them. A scroll through my Facebook feed recently revealed nearly the whole 5th grade class went to a sleep away camp together for three days. As all the proud mommas posted pictures of their child’s send off to camp, inside I ached as a knife twisted my heart. I know my son won’t be able to do everything like everyone else his age. (Heck, at this point he homeschools anyway so this particular trip wasn’t even an option for him as he’s not enrolled in that school anymore – but it’s just the principle of the whole matter.) And then my inner voice starts to get frustrated that other moms get to post their pictures while I sit and ponder, “Do they even know how I feel? How hard this is for me? How lucky they are?” It’s like this selfish indignation that occasionally rears its ugly head.

You know, as many “cons” that I could list and dwell on, if I allowed myself to do so, there are more “pros” than I could probably ever count. Yes, I have had to deal with changing diapers and cleaning up poop for a solid decade and counting. I’ve watched my son miss out on events and experiences. I’ve had to neglect my other two typical sons and watch them struggle as they yearn for my attention. I mourn often of what our “normal” family would have looked like and how different things would have been. However, the people we have met on this journey – other special needs moms, Special Ed teachers, precious doctors and nurses, celebrities like Pat Sajak and Vanna White and John Cena, – the experiences we have had as a family like participating in a Make a Wish trip, watching Hayden develop and grow in his own skin and becoming a self proclaimed “VIP”, and developing friendships with people we never would have met like Aaron Watson, Cal Johnson, Kathleen Barkley, our town’s mayor and so many more, are all things I would never want to have missed out on. Mostly, the biggest “pro” to top the list is that we have a true perspective of LIFE. We have a fresh opportunity every single day to live out sacrificial love. I will never look at situations, circumstances, or “stuff” the same way. And that is because I was given Hayden, to be mine.

There’s a Southern Gospel song that I absolutely love whose lyrics speak truth to me. “I Wouldn’t Take Nothin’ for My Journey Now” says,

“I’ve had a lot of heartache and I met a lot of grief and woe
But when I would stumble then I would humble down
And there I’d say, I wouldn’t take nothin’ for my journey now”

This journey isn’t something I would have picked for myself, but it is undoubtedly one I would never trade. The lessons and experiences from this life are priceless, but ultimately, the reason I would never trade it, is because I have grown closer to Jesus BECAUSE of my circumstances. And for that I am so, so grateful to be in this place that is difficult, exhausting, and unfair. It’s in this place that I am humbled to look UP to Him and praise His name for His sovereign plan and for the gift of salvation that He offers to us all. Because of what He has done for us, by dying on the cross, we can all have hope of eternity with Him.

“That is why we never give up. Though our bodies are dying, our spirits are being renewed every day. For our present troubles are quite small and won’t last very long. Yet they produce for us an immeasurably great glory that will last FOREVER! So we don’t look at the troubles we can see right now; rather, we look forward to what we have not yet seen. For the troubles we see will soon be over, but the joys to come will last forever.” 2 Corinthians 4:16-18

It’s impossible for me to read those words and not tear up. God is so gracious to have given us Jesus to make a way for us to have hope. And so during my circumstances, that I wasn’t wise enough to even know I needed, I look to Him and am eager for an eternity with Him. I trust Him completely and I know that none of this world is about me – it is about HIM and spreading God’s glory throughout all of the world. I am incredibly honored and blessed that we get to do just that in the even tiniest way, by using our situation to continue to give glory to God.

If you don’t have that relationship with Jesus, or if you have questions about how to develop such a relationship and feel secure in your eternity, as always, please reach out to me or a local church. My contact information can be found under the “About” tab on this blog.

I’ll sum up with this line from a friend of Hayden’s, Aaron Watson. “No it won’t all go the way that it should, but I know the heart of life is good.”

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

 

What are you working for today?

Over the last nine and a half years, I have met countless doctors, nurses, therapists, respiratory specialists, insurance representatives, child life specialists, durable medical equipment representatives. You name it, I have dealt with them. Hayden has received Occupational Therapy (OT), Speech Therapy (ST), and Physical Therapy (PT) since he was born. The vast majority of these therapy sessions I have sat in on. Hayden requires suctioning frequently, monitoring for his oxygen saturations, and in case of an emergency trach change, he needs someone present who is capable of changing the tracheostomy tube and keeping his airway secure. Due to these critical needs, Hayden always has to have a nurse with him, or a parent. And so that means, I have seen my fair share of therapy sessions.

Therapy has been crucial for Hayden and our family. I know he has the abilities he has today because of early intervention of therapy services. When he was a tiny baby, the therapists would just hold a shiny, noisy toy in front of him and he would perform the task at hand in order to see the toy. Then, as he got a little bit older, he would do the therapy work and then get to play with a toy he chose from the loot the therapist had. As he got even older and was verbal, many therapy sessions would start out with this statement being made by the therapist to Hayden: “What are you working for today?” Hayden would then declare what game he wanted to play when the real work was done, or what toy he would enjoy after he had earned it, by doing his work and doing his best for the therapist.

See, Hayden trusted the therapist. He believed her when she said, do your work here in this session, and at the end you will receive a reward for your work. And so he worked his tail off because he knew the good that was coming. Some days it was ugly. Some days he was distracted. Some days he did not feel like it. But he did the work he was told to do. And every time, the therapist delivered on the promise.

I cannot tell you have many times people have said to me, “I don’t know how you do it!” Well, me neither. The only thing I can imagine is my trust  in the hope of the future because of Christ. Honestly. I know that the reward at the end of this journey will make the work of this life worth it. And not because I deserve it at all. That is the paradox here. I do not deserve a reward. I don’t. I’m a sinner. I have made terrible choices. I have disappointed people I love. I have hurt people I care deeply for. But because of the salvation Christ offered to me and that I accepted, I know that my eternity will be in heaven.

And I know that reward is what I am working for today. Some days it is ugly. Some days I am distracted. Some days I do not feel like it. But with my hope in Him, I am doing the work and trusting completely that God has a beautiful, elaborate, glorious plan in all of this pain, heartache, and suffering. Because see, I trust Him. I believe Him when His Word says, “And even we Christians, although we have the Holy Spirit within us as a foretaste of future glory, also groan to be released from pain and suffering. We, too, wait anxiously for that day when God will give us our full rights as his children, including the new bodies he has promised us.” – Romans 8:23

I know that one day, I will see Hayden’s new body standing tall, with no wires or tubing. I know that one day in eternity Ryan and I will look in each other’s face and not see bags under our eyes brought on by exhaustion, stress and worry. I know that one day, I will see my Maker and we will have eternity to talk about how He used this life, this situation, this suffering, for a grander purpose than I could have ever imagined. I know those things for a fact because I put my trust in Him. If that is something that does not make sense to you, but something you long for – a hope, a peace, a future – reach out to me, to a friend, to another Christian, to your local church. And if you already have that hope, make today count for someone else. Do the thing – even when it is hard and unfair and lonely. Remember what you are working for today. Remember Who you are working for.

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.)