May I Show You to Your Room?

This blog post is a little different than my usual posts. I originally posted this on Facebook as a way to explain to our family and friends why they have seen our son, Hayden’s, presence on LinkedIn – a networking site for professionals. Our son is eight. He is a treasure. If you’d care to put a smile on your face, please read below.

Many months ago, our family booked a Disney Cruise for the week of Christmas break for the five of us. Our oldest son, Hayden got two pneumonias back to back and after the second one, we knew for sure the doctors would never let him go on the cruise, and for good reason. We debated a lot on what to do. I’ll spare you all of the turmoil and arguments for each side, but ultimately, when I discussed it openly with Hayden and asked him what he was looking forward to about the cruise he said, “The hotel key card.” Hotel key cards are what Hayden collects and perseverates on with all of his focus and attention to detail. So, after this conversation with him, I realized my hilarious, awesome, Autistic child did not give a rip about going on the Disney Cruise. I asked him if he could choose between going on the Disney Cruise with his family or going to a hotel with Bub and Ti (grandma and grandpa), which would he pick and
he had ZERO hesitation and answered (from his hospital bed, mind you), “HOTEL!” And he was adamant it had to be the NYLO Hotel. There’s a NYLO right by the hospital he had recently been admitted in and so he had seen it a million times, but he didn’t have a hotel key card from there and that was why he initially wanted to go; to get the key.

My husband and I went ahead and went on the cruise with our two younger boys and they LOVED having our one on one attention, especially coming off of those 17 days of Hayden in the hospital and them being shipped around here and there. Hayden stayed at our house with his nurses working their regular schedule and his grandparents, Bub and Ti, taking care of him.

Now, Hayden and Bub had already called the NYLO multiple times for Hayden to ask a myriad of questions to make sure the NYLO cleared his expectations – did the hotel key card have arrows, what was the manager’s name and birth date, etc. The day of the hotel stay, Bub called and talked to the manager and explained a little more in depth about Hayden and some of his needs. The manager was not overwhelmed or turned off by this precious high maintenance child. In fact, the complete opposite.

From what I canylo exciten gather, they rolled out the dang red carpet for him! They had a name tag ready for “Hayden Hensley, NYLO Manager” and gift baskets and notes from the management. He was given a master key and worked the front desk and worked in the back where the manager’s office is. He met lots of new friends who work there who all fell in love with him (who wouldn’t??). He LOVED IT!!! Look at his face in these pictures! And you have to realize that at this point he was not feeling 100% yet and hadn’t been out of the hospital for far too long.

He was also able to visit a second hotel where the NYLO manager moonlights at the front desk. He got another goody bag from there and got to inspect rooms. Bub shared a story about a room inspection Hayden and the manager did:

They inspected a King room with one bed and checked it over. Then, they went and checked a room that was a double. The manager asked Hayden, “And what’s different about this room?” ….thinking Hayden would say, “Oh, it has two beds instead of one.” Everyone was impressed when Hayden said, “Well, this room has a room service menu but that other room didn’t.” And that my friends, is Hayden.

So, in the days and weeks to come, NYLO was all Hayden could talk about. He had a renal ultrasound one day at the hospital and begged me to take him to the NYLO since he knew we were driving right by it. I agreed and told him if he would act brave during the procedure, I would take him. After the hospital, we drove to the NYLO next door. We were in the parking lot and he said, “Mom! You’re just going to LOVE it!!” He wheeled himself right in and went straight down the hall where the managers’ desks are in the back! Bear in mind, I have never been to this place and I have no idea who these people are….but every one of them knew Hayden! He loved catching up with his coworkers. Or his employees, rather. A sweet man who is the Operations Director told Hayden that day, “Hayden, my boss is here visiting today, would you like to meet him?” And Hayden replied, “I’m your boss!!” hahaha…. He seriously owns it. It is the most hilarious thing and so precious.

Last week, I was sitting next to Hayden on the couch and he had just logged off of his school robot app which is how he attends class since his illness. He was still on his laptop, though, and I looked over to find he was on a website typing in his email address. I asked him what he was doing and he said casually, “Joining LinkedIn.” As part of his profile he was setting up, he wrote that his commitment was “making the NYLO guests feel happy”. That all truly came from his heart. He was a even a hotel manager for Halloween and he still wants to be one when he grows up. But why wait? I’m sure he’ll be working a shift there again soon.

So, if you need a hotel, may Hayden and I recommend the NYLO! They’re the real deal! Tell them Hayden sent you!

He Knows His Name

As the pages of this blog have slowed down over the last couple of months, it was not without good reason. My son came off of two substantial illnesses that left him in PICU for 17 days total and when he came home, his body had much healing to do. His body is healing more and more each day and we are hopeful that soon, he will be able to attend school again with his classmates as his lungs are healing and his immune system grows stronger.

However, the challenges my son deals with do not stop with his physical body. Though his physical ailments are many, he has always struggled with various emotional issues. Anxiety, sensory processing disorder, OCD tendencies, inability to track social cues with his peers, hyperfocusing on his preferred topics, flapping; just to name a few.

This area of our life is not something I have shared with many, but I feel the message I have received through this experience is something others could relate to. The journey over the last nine months for our family was a pilgrimage of sorts. Over the course of last spring and this past summer, I was aware of certain behaviors and uncontrollable emotions Hayden was trying to process. I alerted our vast team of physicians and recruited a few new ones. What I share with you here in just a few paragraphs, is something that took months and months to confirm and is not something to be taken lightly. After hours of tests and interviews and parent questionnaires,  Hayden received a diagnosis as being on the Austism Spectrum, having ADHD and also an anxiety disorder. None of those things were a surprise to us, but more of an explanation as many, many pieces of a puzzle we had been working on for years now, finally came together and we could see a bigger piece of the picture.

If I may be brutally honest (which is one of my favorite past times, mind you), getting this news sucked. I struggled a lot. And for a while. How in the world could this be fair?? Not only does Hayden have to deal with immense physical issues that are very complex and interconnected with one another, here he is having to deal with this new Spectrum diagnosis and anxiety that is off the charts. Couldn’t it just be one thing or the other?? Either JUST physical or JUST emotional/ASD? How was it fair that he had to deal with both things?!

But soon I realized, I wasn’t upset for him. I was upset for myself. I was the one who was having to deal with it. I was the one who had to add three new doctors to the color coded dividers in my three inch “Medical” notebook. I was the one who had to set up his weekly counseling sessions and find the money to cover the sessions – not to mention the cash only doctors we were now seeing. I was the one who had to relearn everything – how to talk to Hayden in a way to get through to his brain so he could process what I was saying, how to set up his room and work station so he could function better, I was the one who had to order a whole new batch of books online and spend my time reading and googling methods of therapy. Hayden’s life, quite honestly, did not have to change that much; he just got to sit back and reap the rewards of mine and my husband’s efforts. Whoa – the nerve! (*Disclaimer here: for our local friends, Hayden is not aware of this newest diagnosis, so please be mindful of that when talking with him. We plan to talk to him about it when he is ready and we are equipped to share with him*)

I am still in the acceptance and healing process of receiving this news. However, the Lord keeps bringing back to me a song I love. (Not to harp on Francesca Battestelli for the second post in a row….but her musics speaks to me!) There is a song, “He Knows My Name,” that I just love and that was a big part of career changes God walked me through a couple of years ago. The lyrics of the song, so powerful to me, were:

“Make no mistake, He knows my name; I’m not living for applause. I’m already so adored; It’s all His stage. He knows my name….

He calls me chosen, free, forgiven, wanted, child of the King, His forever, held and treasured. I am loved. ”

It just hit me one day. If that’s how I KNOW God feels about me, doesn’t he feel the EXACT same way about my son? His son? If God knows MY name, then surely He knows HIS name, too. So what is all the fuss about?

We see this verse a lot: “‘For I know the plans I have for you’, says the Lord. ‘They are plans for good and not for disaster, to give you a future and a hope.’ Jeremiah 29:11.

Yes, God has wonderful plans for my son. That, I now realize and I know that through our family’s challenges, God has a plan. Not an okay plan. Not a decent plan. Not a “that’ll do, I guess” plan. But a GOOD plan.

But y’all, Jeremiah 29:12 says, “In those days when you pray, I will listen.” Bam. I read that and felt the Spirit convict me. Throughout receiving this news about Hayden and dealing with all of these new troubles, I have not been praying like I should. Instead, I did as I aforementioned. I worried about my three ring binder!!

My hope for myself and for my son is that as we walk a path that is unknown, that we will learn to lean on Jesus as our first line of defense. I don’t know about you, but nothing in this world makes much sense to me these days. But Jesus. He is everlasting.

This post may speak to no one. Perhaps this is just a post that catches everyone up to date on Hayden’s newest health issues. But if you feel the Lord speaking to you through these words, let Him. Hear Him. Talk to Him. He will listen. Hensley Family (10)

 

It’s Not You, It’s Me….

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

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

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

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

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

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

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

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

Why Weekends are Hard for Widows – and Special Needs Families

I have always heard how weekends are difficult for widows because the routine of the week is on hold and the reality of being alone becomes more palpable. I would venture to say those same feelings transfer to my own special needs family. During the week, we are going, going, going – doctor appointments, therapy appointments, driving kids to and from school, meetings at school. But then the weekend comes. And although we embrace the joy of not having a strict schedule to abide by for two days, we are reminded how isolated we are.

My special needs son is my oldest child. This means I have two preschoolers that I constantly feel I am doing a disservice to. Because of my son’s needs and the medical schedule he must remain on, we are limited to begin with. We have a feed schedule to follow, a breathing treatment regimen, cathing schedule, etc. Going out to dinner is just not fun. It’s not as simple as jumping in the car and arguing over who gets to pick the restaurant to eat at. When we “jump” in the car, it’s a full on process of buckling our son’s wheel chair in the car, loading up the preschoolers, double and triple checking that we have the amubag in the event of having to bag our son in an emergency, making sure the backup trachs are present, the oxygen tank has enough “juice” to last through the drive and then the meal, having the portable nebulizer in case he needs a treatment before we get home, making sure the cath kit and diaper are discretely placed my purse so no one wonders why my eight year old son wears diapers. Are we having fun yet??

The example above is just for a quick outing. Hence, those are few and far between. Recreational outings on Saturdays just don’t normally happen for us. We don’t join other families on weekend nights for dinner because we start my son’s bowel management program at 5:30pm, which lasts one hour, and immediately afterward begin his nightly breathing treatments. It’s important he stays on his schedule and doesn’t get to bed too late, otherwise we risk running him down and him getting sick. We don’t go on family outings to the zoo or the fair or anywhere else a family with small children may go. I literally could not tell you where families take their small children; it’s just not even on my radar. Which creates a constant flow of guilt for me (and a post I will share at another date) on behalf of my other typical boys. I struggle all the time with what my boys are missing out on.

Don’t get me wrong, we love our family time at home with all of our boys. And we make our own fun in our house. But as a stay at home mom, to spend my weekends at home, just like my weekdays, and watch my Facebook newsfeed and Instagram wall fill up with “normal” people out living their life, is brutal. Even without the planet’s entire social network taunting me, I feel the void. I feel the isolation. I feel the boredom. I feel the guilt. These are all very tangible and real.

I am not sure how this will ever resolve or what the perfect answer to this is. But, in my mind’s eye, the way I see this situation and the feeling of being alone, reminds me of the passage in Exodus just after Moses had a conversation with God and tells him “If your presence will not go with me, then do not bring us up from here.” (Exodus 33:15) God agrees to remain with Moses and when Moses asks to see God’s face, God told him no. Because no one could see His face and live. However,  “Then the LORD said, ‘Behold, there is a place by Me, and you shall stand there on the rock; and it will come about, while My glory is passing by, that I will put you in the cleft of the rock and cover you with My hand until I have passed by. ‘Then I will take My hand away and you shall see My back, but My face shall not be seen.'” Exodus 33:21-23.

Perhaps in these times of feeling alone, it is because there is only room for one when I am hidden in the cleft of the rock and His hand is protecting over me as His presence moves by. Besides, God rested on the seventh day of creation and I seriously doubt He hit up a museum and then Tweeted about it. 😉

Three’s Company

My boys

Hayden’s most recent hospitalization was a trying time on all members of our family. For Hayden, of course, as he wasn’t feeling well and was fighting a bacterial pneumonia. As mom and dad it was difficult on us, watching Hayden in pain and also managing the rest of life’s duties. But for Hayden’s younger brothers, especially, this was a difficult time.

Hayden hasn’t had this lengthy of a hospital stay in quite some time. The last inpatient stay he has had was nearly three years ago. The first three years of Hayden’s life were mostly spent in the hospital. So Ryan and I are pros at this way of life. We were just enjoying the break of hospitalizations over the last few years. Even now as Hayden is home with us and healing well, we know it’s not an “if” he goes back into the hospital; just a “when” he goes back in.

The extra challenge now, though, compared to those first three years of Hayden’s life, is that we have a couple of extra passengers along for this ride. Hayden’s younger brothers, Grayson (4) and Ethan (2), are now old enough to understand the implications of Hayden’s illness. This most recent hospital stay was a challenge for Grayson to cope with. Grayson was concerned for Hayden’s health and he was asking his teacher and babysitter and any adult that would listen, “How was Hayden’s xray today? Is his lung any better now?” In addition to being strong willed, Grayson has a kind, sweet soul and loves Hayden more than he even realizes.

Grayson has been around hospitals, doctors, therapists, and clinics his entire life. In fact, our first announcement to the world that Grayson was on his way to join our family, was made in Hayden’s hospital room. Hayden was inpatient again at Texas Children’s Hospital with an illness. During that stay, Ryan and I announced to the grandparents that I was pregnant – and the next sentence that followed was, “Could one of you accompany Hayden down to xray tomorrow since we can’t expose the baby to radiation?!” It’s one of those memories we treasure and enjoy laughing about. Such is life!

I often see the various ways people look at our family when we are in public together. I’ve seen it all – shock, awe, pity, concern, curiosity… I would say of my community of special needs families, we are an anomaly. Hayden alone is an anomaly! But to have your oldest child have special needs as intense as Hayden’s and then have two more children, makes for an interesting set of circumstances.

The truth is, though, I haven’t always been open to growing our family after Hayden’s birth. I firmly believe in PTSD after a NICU stay of any amount of time. A stay of seven months in NICU only generated a laundry list of worries for me. I was so afraid of all of the conditions I saw and learned about during Hayden’s NICU stay, that I was too scared to have another child after Hayden. It wasn’t spina bifida I was scared of. That I could do. I knew all about it. I was the expert. It was all of the other conditions I never knew existed until I was enlightened in 2007.

My mind was made up. Hayden would be it. He was plenty of work as it was. Why risk it with another child? Ryan was convinced I would come around eventually. My strong willed mind was convinced I would not. Thankfully, though, I yielded my selfish strong will to God’s will. I remember clearly the day He spoke to my heart. The words that came over me were, “This is for My glory. Even if….. It is still for My glory.” It was like my eyes were opened and I came out of being in the dark. Of course. If I claim to trust in the Lord, then let me trust in the Lord. If I had another NICU baby, another chronically ill child, a child with any array of rare conditions, or a completely healthy child – I had to let that be for His glory.

As I mentioned, Grayson joined our family and jumped right in to the chaos in 2010. I used to drag that baby boy all over kingdom come with us. I would nurse him during Hayden’s occupational therapy sessions, I would change him on the patient tables at the doctor’s office during appointments. He grew up playing on physical therapy equipment and learned to walk by ten months, certainly from all of the skills he picked up during our “two for one special” each week at therapy.

I know the Lord must have some amazing plans for that boy because the strong willed spirit that he arrived on this planet with, must be intended for something phenomenal. His love and compassion for Hayden became even more evident over these last few weeks. I am so happy I chose to trust God and let Him lead our family in the direction He had planned for us.

And man, I’m glad I got on board with that lesson! Because in 2013, God had a little surprise plan in mind that He never warned us about. Our third little boy, Ethan, joined our family in 2013 as precious as he could be. What a wonderful surprise he was! Ethan gave Hayden the honor of being a big brother twice and he also gave Grayson someone to boss around with that strong will of his.

My three boys are my everything. All parents have their list of parenting worries, I’m sure. I do, too. My list just looks different than a “typical” list. My worries are that I’m not giving enough attention to my little boys…that they’ll resent or be jealous of Hayden and the time we invest in him and his care…that my littles will feel they play second fiddle to Hayden…that Hayden will be jealous of the ease and abilities my littles have in life…that I can’t be enough for everyone all the time. And I can’t. I’m not supposed to be.

The most important job I have as their mother is to lead them to the One who will always be enough for them. Who will love each of them completely. The God who will heal their heart when they feel neglected or jealous or sad. I realize that the God who loves me completely and heals my heart when I’m sad, loves them just the same. When I put my trust in Him and allowed Him to be in control for His glory, it meant I no longer had to worry about my boys. I only had to pray for them and guide them and teach them to seek God’s will and His glory, above all else.

I have always loved the passage from Ecclesiastes 4:9-10 that reads, “Two are better than one; because they have a good reward for their labor. For if they fall, the one will lift up his fellow….” There’s another verse in that chapter that really stood out to me this week. Ecclesiastes 4:12 says, “….Three are even better, for a triple braided cord is not easily broken.”

I pray that my three boys’ cord always remain tightly braided and that, not in spite of our family dynamic, but because of it, they stay bound together for all of their time here on earth, loving one another and caring for each other. And doing it all for His glory.

The Struggle is Real

On this October night, as my eight year old son lays in his bed in the Pediatric ICU, I can’t help but reflect on another October night when my infant son laid in his warmer in the Neonatal ICU fighting for his life. Fighting is nothing new to Hayden. He’s done it since the day he was born.

Hayden’s journey in the NICU lasted a total of seven months. And although that journey had many, many ups and downs (more downs than ups it often felt like), there is a day that forever stays with me and has marked my heart permanently. On October 18, 2007, Hayden was severely ill and septic. The infection was ravaging his body and on the night of October 18, a doctor opened up Hayden’s belly having no idea what she would find, but with all hopes of saving his life in the process. The infection she found was from his small intestines, which were destroyed by no flow of blood to them due to a blood clot (cause unknown).

At this point in Hayden’s journey, he had been in NICU for two and a half months and I blogged daily on our CarePage to update our family and friends. This was how I communicated to our prayer warriors and asked for specific prayers for things going on with him during his lengthy hospital stay. It wasn’t until this night, though, that I truly became one of those prayer warriors.

From the minute this child entered the world, he has faced challenges. When most babies are doing skin to skin bonding with their mothers a few hours after birth, Hayden spent his “Day of Life 1” laying alone on an OR table having his back sewn shut to close the defect on his spine. And that was just the tip of the iceberg for him. The details are too many to share in one post – I’m saving those for my book one day.

In a post on our CarePage, I wrote about that frightful time during the worst of the “NICU Chapter” of life:

October 18, 2007 12:01pm

His kidneys still aren’t working properly because he’s not getting enough blood to them so they’re not making much urine. So he’s not draining off any of the fluids he’s getting through his central and his new IV they placed last night. Today’s goal is to get the kidneys working better…..They placed an IV last night and gave him blood and other clotting blood products. They also placed another art line so they can get an accurate blood pressure on him. He’s now getting fentanyl on a drip to keep him knocked out and help with pain. He’s also on dopamine to regulate his blood pressure and concentrate the blood in his veins better. The dopamine should help bring his heart rate down which had been at 220 most of the night last night. He’s normally at 144-160ish….Sorry to report such bad news…Please pray for Hayden. He does not look well and I know he doesn’t feel good at all. Please lift us all up. I apologize if this is a bit choppy…so much is happening right now…

I remember each detail from this event. I remember where I stood in the hallway making phone calls to Ryan and the grandparents saying to “come to Houston – NOW.” I remember the fear of thinking I would lose my baby. But most importantly of all, I remember being on my knees pleading with God to not take my baby. Until this point in this journey, I prayed luke warm prayers thinking He wouldn’t answer me the way I wanted, so why bother. Hayden kept having issue after issue during his stay up to this point, and although I would tell my prayer warriors exactly what to pray for (that Hayden wouldn’t need a reflux surgery, that Hayden’s brain would figure out how to tell his body to breathe on its own, that Hayden’s vocal cord that was paralyzed would miraculously start moving again) none of these requests had been answered. I was frustrated, tired, and my hope was fading.

But I realized it is much easier to put all of your faith in God and trust Him when you’ve truly got nothing left. I was at rock bottom. There was nothing I could do to save Hayden. The doctors were already doing all they could for him. The only person who could save him was the Great Physician. And on this night, I prayed with everything left in my soul.

On my hands and knees, I pleaded and asked God to not take my baby. The exact words I prayed were, “Please don’t take my baby. I don’t care how hard it will be, please don’t take him from me.” And God heard my cry. He answered my prayer.

I know that sometimes people are certain to look at my family and my situation and wonder why God would allow such suffering to happen to Hayden, to us. Why would He let this happy child be required to use a machine to breathe for him every night to keep him alive? Why would He give him beautiful long legs, but not give him the ability to walk on them? Why would He put such a funny, happy spirit inside this child, but make it nearly impossible for his body to coordinate the functions to speak and to be understood?

I have no idea why. I know there IS a why. But it’s not my business to fully understand it in this life. But one thing I do know, is when I see my son shine through his struggles, all I see is an answered prayer. I told God that I didn’t care how hard it was, I wanted my son to be here on earth with me. And He heard my cry. I knew it would be difficult, but I knew more than anything that I was meant to be here caring for Hayden each step along the way. Let me clear here, there are days when it is overwhelming and feels too difficult to handle. But that is when I hear the words of my prayer coming back to me in the back of my mind and my perspective of “difficult” changes.

In a reading from Acts 20:22-24 when Paul is giving his final address to the Elders at the church of Ephesus he says, “And now I am bound by the Spirit to go to Jerusalem. I don’t know what awaits me, except that the Holy Spirit tells me in city after city that jail and suffering lie ahead. But my life is worth nothing to me unless I use it for finishing the work assigned me by the Lord Jesus—the work of telling others the Good News about the wonderful grace of God.” I have to say I agree with Paul. I knew good and well that October night as I pleaded with God, that suffering, heart ache, sleepless nights, struggles, sicknesses and pain may lie ahead but it was so worth it to me. The thing I didn’t realize then, though, was what an amazing plan God had for Hayden and the impact that he will make on God’s kingdom. I’m blessed to just be along for this ride.

Without Hayden and our struggles, I’m not sure where I would be in my walk with the Lord. I’m thankful for the suffering in this life. If it’s the work assigned to me by the Lord, then I plan to use it for His work; because otherwise, it is worth nothing. This life is my platform and I plan to use it to shout “the Good News about the wonderful grace of God.” So when you see my family, please don’t just see the suffering – see my answered prayer. 

The Catch 22

As an individual living a completely unique life, I often find myself in a never ending cycle of a “Catch 22.” You know the term.

catch 22 – (noun)  a dilemma or difficult circumstance from which there is no escape because of mutually conflicting or dependent conditions; a “catch 22 situation”

That’s me. That’s the world I live in. There are days I walk around mad at the world thinking, “These people! With their ‘problems’ just have no idea what life is really, truly like for our family. If they want a problem, I’ll show them some problems. I wish they would come over here and really get in the grind with me and see for themselves!” Now, clearly, not the best attitude in the world to have. And I pray my way through those nasty days like that. But those days exist. I will not lie.

So here’s the catch. I have had people get in this grind with me. They have seen for themselves. They have come into my home and seen my family during the “witching hour” (which is WAY more than an hour, by the way) as we spend multiple hours a night caring for our son’s routine medical needs. They have come and cleaned my house while I was at the hospital with a sick child. They have heard me on the phone during countless phone calls managing my son’s care. And they try their hardest to understand each and every tiny facet of what this life is like. But they can’t understand it. Not truly.

And so there I am. I want people to try and understand it and when people do try, I often times write it off and think, “Oh, you’ll never understand it!” So what do you do then? Literally, no one gets it.

I was reading in Psalms this morning and I read David’s words to the Lord. In Psalm 25, David says to God, “Turn to me and have mercy on me, for I am alone and in deep distress. My problems go from bad to worse. Oh, save me from them all! Feel my pain and see my trouble. Forgive all my sins.” (Psalm 25:16-18, NLT) That’s when it hit me.

Having a desire for someone to understand my world is not a new concept. David felt the same way. I want someone to truly “get it”, because I oftentimes feel alone in this life. Yes, we should help carry each other’s burdens, but that’s not what I’m talking about in this context. (If I need you to bring my family dinner and scrub my toilets, I will ask – don’t you worry!) I am talking about living a life in which the daily dynamic is atypical from the society around you. That can be isolating. However, making someone understand my family life won’t help me. I need to be crying out to the One who blessed me with this atypical life. He is the only one who can turn to me, can have mercy on me, can save me.

Is there something you need to cry out to Him about? Do you have some problems that go from bad to worse? Do you need someone to feel your pain and see your trouble? Do you need someone to forgive your sins? He is right there. Call out to Him and stop the isolation. He will walk right beside you. He gets it. He gave it to you for a purpose. Lean in to Him and stop carrying a burden too heavy when all the strength in the world you will ever need is standing right beside you. Just turn your face to Him.

Hello world!

Welcome! You found me – so that must mean you have your HP’s Wheels of Fortune Walk N Roll T shirt for 2015! What a fun way to introduce my blog by sharing it on Hayden’s “business card” Walk shirt. I hope to use this blog as a way to share deeper thoughts about my faith and family. Our story is an elaborate one and it evolves daily. Thank you for taking an interest in our family and I hope we will be a blessing to you!