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.