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)

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.”

They’re Just Forks

Imagine you and a handful of friends are co-hosting a party; maybe a baby shower or a bachelor party. You and the other hosts are at the venue prior to the event starting and you’re setting up. You’ve got the food out on the tables and the cake table is just perfectly so, things are shaping up nicely. You just need to put out the forks and you should be good to go for the event to begin! Except, as you start to place the forks on the table, one of the other hosts has a different idea about how to display them. You want them stacked in a nice, orderly fashion – piles of five forks each, fanned out just right. The other host wants them tossed into a Mason jar with some cute ribbon tied around the jar. Another host thinks the forks should be wrapped inside napkins with raffia tied around them.

For whatever reason, this fork talk has gotten you all hot and bothered. You just can’t imagine why these other hosts won’t agree with your way to display the forks. And an argument ensues. Here you are, three grown adults, going to town with a “heated fellowship” over how to put some forks out on a table. Meanwhile, your voices are getting louder and louder. And the guests for the party are beginning to arrive…. they are literally outside the front door about to ring the doorbell when one of the guests says to the other in disbelief, “Do you hear that? Are people arguing and bickering?? I’m not sure I want to go inside if this is what there is to look forward to in there.”

Yet, you keep arguing. Except now, it’s not even about the forks. In the heat of the moment, you’ve moved on to how the decorations aren’t what you would have picked. Or there was a better cake flavor choice than the one being served. Things continue to escalate.  And more and more guests are standing outside not slightly interested in coming into this circus.

And before you know it, the guest of honor shows up expecting to be welcomed by family and friends. But instead, what the guest of honor finds upon arrival is a whole bunch of people standing outside the venue dreading even going inside. No one has spoken to these guests or invited them in, because there were “bigger things” going on – bigger arguments to settle among the hosts. There wasn’t time to address those on the outside of the door. Heck, you didn’t even look up to notice they were watching you. You were so wrapped up in being right or having your voice heard among the other hosts, that you never did your job. The job assignment was to welcome guests into the venue and to be kind and loving to them, serving them.

Now it’s too late, though. The guest of honor is here. And you weren’t ready. And neither were those on the outside of the door. Oh, you had the place decorated and you had all that you needed to get the thing done. But you couldn’t see past the forks. And instead, you ignored the people outside. You disregarded how the guest of honor would feel about your behavior. You got caught off guard but you knew all along this event was going to happen.

But that’s us isn’t it? Us in the church body – us Christians. We’ve been given a job assignment, but we’re so wrapped up in arguing among each other that we are embarrassing ourselves and no one wants to come in to the church body of believers. They’re watching from the outside seeing our ridiculous behavior and we literally have no clue. Because we just want to win an argument with other evangelicals. Meanwhile, there are people on the outside who need Jesus and do not know Him and it’s our JOB to “go and make disciples of all the nations” for Him (Matthew 28:19). HE is the Guest of Honor and He IS going to show up. The end of this age is coming. No one knows precisely when that will be, but Jesus said He will be coming back. The invitation has been sent out. The event will take place. Are you going to be caught off guard – in the middle of an argument with a fellow Christian over the most recent topic the world’s media suggested you argue about? Or are you going to be caught in the act of being kind and welcoming, showing God’s love to those on the other side of the door?

And when He does show up, are you going to recognize Him? Do you know Him, know Him? Are you spending time with Him daily? Talking to Him? Reading His Letters to you? Loving Him more than anything or anyone else? Waiting anxiously for the day He will see you face to face and call you by name? Because inside the venue or just outside the door, the time will come when you will have a conversation with the Guest of Honor. And how that scene plays out, is for you to decide. Will it be one of loving embrace and immeasurable happiness? Or one of sorrow and regret?

“See, I am coming soon, and my reward is with me, to repay all according to their deeds.” Revelation 22:12

 

I encourage you, please reach out to myself or a local church if you have questions about what it means to know Jesus personally. The thing Jesus wants most is you. He created you for a relationship with Him. 

Remarkably Loved

I have a name that is hard to pronounce. And hard to spell. For the majority of my life, I have answered to anything: “Johanna”, “Jonah”, “Joanna”. I have been the person who most people forget, yet, ironically, I remember most people. Quietly, contemplatively, I am always people watching and remembering idle tidbits of information about someone. I am an introvert whose thoughts in my head exhaust me and I rarely share a mild portion of them in conversation with others around me.

In 2007, something changed. I became a mom. Of a special needs son. I was taught by medical staff how to be empowered. How to stand up for my child and be his voice. How to advocate for him and follow my gut instinct. All of a which I eagerly embraced. When it comes to my children, I know what my job is and I know have a valuable voice.

As a parent of a special needs child, though, I spend so much time and energy fighting for my son, that it is very easy to lose my own personal identity. I have to remind myself that I am more than just “Hayden’s Mom.” I am more than a walking computer data base of lab values, vent setting and med checklists. But then, who am I without this identity of being my son’s “Case Manager”?

Last week, I took my three boys on a walk around our neighborhood with the help of Hayden’s nurse. Hayden and his nurse were a few yards behind myself and the two younger boys. As I walked past a neighbor out in their front yard, he and I did the casual neighbor-wave-exchange move and I continued walking on. A few moments behind me, Hayden and his nurse walked by the same neighbor. Only this time, Hayden received the royal treatment, which is a wonderful thing. “How are you Hayden?! Good to see you! You’re looking great!” Then, as an afterthought, my neighbor gave a glance ahead of Hayden to where “Hayden’s Mom” was standing and then the light bulb clicked. My identifying mark is Hayden’s presence beside me. The neighbor and I then exchanged pleasantries and we all went on with our day. This scenario I described, happened twice during this one outing. It has happened countless times in numerous settings. It is a humbling experience. To know that your impression left on someone was not always strong enough to leave a mark. That you are the Robin to someone else who is Batman.

The enemy knows how to mess with me. He knows how to mess with you. You might not believe that, but it is true. The Bible tells us, “For our struggle is not against flesh and blood, but against the rulers, against the powers, against the world forces of this darkness, against the spiritual forces of wickedness in the heavenly places.” – Ephesians 6:12. It is spiritual warfare. I began to allow the enemy to convince me that without Hayden I was completely unremarkable. I almost believed I had no value without this person that I invest my heart and soul into. Countless voices in my head telling me – “No one even knows how to say your name, let alone spell it.” “Your neighbors don’t even remember who you are unless Hayden is with you.” “There’s nothing you’re great at on your own. It’s only because of Hayden that you’re worth anything.”

Feeling worthy of love and yearning to be empty of shame has been a life long struggle of mine for a variety of a reasons. Because of this natural bend toward not feeling worthy of receiving love, it has always been hard for me to process the following information:

There is a Person who is straight up, head over heels in love with me. He adores me. He values everything I have to say. He is my biggest cheerleader. He knows how to pronounce my name. When He wrote my name in His book, He did not misspell it. He wants me to live with him for eternity. 

I have to remember daily whose I am. I am not Hayden’s. Hayden exists separate from me. I exist separate from Hayden. I exist separate from my husband and my kids and my laundry piles and my trips to the ball field. I have to first exist in my relationship with the Lord. This needs to be my daily reminder. It is a constant battle between my flesh and my heart. The enemy is so great at convincing us that our children are our number one priority. That we need to do everything for them so they will grow up to be amazing adults and make us proud. Or maybe we are convinced our spouse needs to be our entire focus; their happiness and serving them and honoring them. Or perhaps we are just certain that our career is where our value is found. Those are all wonderful things, children, spouses, careers. But our first priority is a real, interactive relationship with God. It is why we were created.

And that is why we are miserable running from here to there and back again while we check Pinterest at red lights to make sure we are hitting the mark with our children’s birthday party decor and making certain our Fitbit has synced so we can show the world we dominated the Workweek Hustle. Those things are just not where it is at, y’all. It never will be. Maybe those are all lovely things, but that is not what it is going to be about when all is said and done.

I am preaching to myself in this post; I have got to remember that He is jealous for me. He is jealous for all of this time I wake up and only invest in others and leave Him as an afterthought. In the bestseller, “Imagine Heaven,” John Burke, makes a great connection when he says, “As God reveals to the Old Testament prophets, when we forsake our Creator to go our own way against his will, and when we love other things more than God, it breaks his heart (an idol is anything we put first before God). All the warnings of punishment and judgment for sin and rebellion in the Old Testament remind us that our actions have cause-and-effect consequences. When we turn from our Creator, we hurt God, and we hurt each other – always – even if we don’t see it yet.”

So for whoever out there, like me, can easily feel unworthy and unnoticed, there is good news.

There is a Person who is straight up, head over heels in love with you. He adores you. He values everything you have to say. He is your biggest cheerleader. He knows your name. He wants to see your name in His book. He wants you to live with Him for eternity. 

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.

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.

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.

It’s a Give and Take

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

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

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

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

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

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

The Day My Marriage Ended

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

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

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

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

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

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

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