Joy no matter what. A blog by Deanne Nelson.

Blogging, Speaking, and Writing | Jesus and Autism | The Nelson Family Journey

The miracle God is at it again! March 27, 2013

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I have been an RN for close to twenty years now, with eighteen of those years spent in the Emergency Room. It can be a  stressful job with a high burnout rate. For the past eight years I have repeatedly proclaimed that given year to be my last, but then will come along a particular patient that changes all that. I call these the divine appointments. These are the ones that don’t go down in the schedule books of course, and yet I have somehow been trusted by the Lord to play a small part in touching another life for the better. Each scenario is different, but in each, the fingerprint of God can be traced at every turn. I liken these patient scenarios to a crime scene investigation where all clues lead to the Lord God. He is guilty as charged of unleashing another miracle. This latest is one of the greatest……

It was a few weeks ago when a call came in over our ambulance radio that a 39 year old woman was being brought in for chest pain. She had just delivered a baby two weeks prior and had no medical history. I actually took the call and presumed she might just be having an episode of something called syncope. The call was not alarming, but I assigned her to one of my rooms in the critical area of the ER that day. When she arrived I was surprised at her grim appearance as she was pale and gray in color, and was profusely sweating. These are very bad signs. The paramedic too shared more of his concerns and I quickly summoned one of our MD”s to her room. Her family had arrived so her father was sitting in a chair in a corner of the room while her sister stood at the bedside to my left. Her breathing was becoming increasingly labored and she had the ‘circling the drain’ appearance that we RN’s know so well. As I was struggling to secure the ECG leads to her wet and clammy skin, she quickly and suddenly went unresponsive on us. The doctor and I were on either side at the head of her bed when this happened. It was a very bad moment. It is shocking and unexpected for such a young woman with no medical history to go into cardiac arrest, but it indeed happened mere moments after she arrived to our ER. Her family were horrified as we both yelled out ..:CODE!!!’. ER personnel jump into ultra high gear when that one word is heard bellowing from anywhere in ear shot. I can still picture her sister in horrified shock as we jumped on her beautiful sister’s chest to perform life saving compressions. We scurried them out of the room fast as an army of fellow ER staff came barreling in to help. Within seconds we had the defibrillation pads on her chest and performed a cardiac shock. She indeed was in a fatal cardiac arrhythmia known as ventricular tachycardia. With a second shock, her pulse returned. She even became responsive again and opened here eyes for a time.  There was a colossal sense of relief in the room, but a great foreboding as well as we knew something was very wrong for this to have happened. As we were discussing the next appropriate actions to take, her heart stopped beating again. It was agonizing to watch, and I could not stop picturing the fact that she had a tiny baby at home…a family that loved and needed her. It was such a helpless feeling to see her with no apparent signs of life at all. Her cardiac rhythm was deteriorating to something called ventricular fibrillation, and was getting flatter and flatter so as to get to asystole, which is flat line= death. The cardiac shocks continued with up to nine shocks given. Chest compressions as well were ongoing. We pushed every emergency IV drug at our disposal.  We were doing all that we as trained individuals knew to do, but what we had before us was a dying woman. This precious woman was a wife, mother, sister, daughter, coworker, friend…so many things to so many people. We were at the end of of our wisdom and ability. What she needed was a miracle, which cannot be found on any code cart in the world.

We had paged one of the cardiologists in the hospital and he agreed that her only chance was to get her to the heart catheterization lab to try and open up a possible closed artery leading to her heart . This very cath lab was not even in existence at our hospital just under a year ago. She had actually gained a heart rhythm and pulse back after the many interventions, but her condition was extremely critical and precarious. As staff ran her to the cath lab, she again lost her pulse and was shocked again out of a fatal arrhythmia. Everyone knew that we could only do this for so long and that at some point her heart would no longer respond. As we left her in the care of the cath lab personnel, our hearts felt so heavy and burdened for her and her family. One of the RN’s with me that day was Charlotte. Charlotte is a lover of the Lord, and without hesitation she grabbed my hands outside of this patient’s room and we PRAYED. Yes, I believe that was the best nursing intervention of the day. We prayed a humble and bold prayer that she would indeed live, and that God would be exalted in the miracle of it all. Now I don’t know about you, but that is the kind of nurse I want taking care of me. Thank you Charlotte!!!

In the cath lab it was found that her main coronary artery was not only blocked off, but that it was dissecting or coming apart in areas. It would be impossible to place a stent. She needed emergent open heart surgery which could not be performed in our hospital. The cardiologist was able to place an intra-aortic balloon pump which is an amazing device that utilizes a balloon placed in the aorta…it inflates and deflates to supply blood to the heart. Pretty incredible stuff, but again, a very temporary fix to a dying heart that needs more permanent help. And so she was rushed to our main hospital where open heart surgery was immediately performed. At every stage in this process, staff were baffled that she was still alive. Her chart contained the data of a deceased patient. Her cardiac heart rhythm pictures were those of someone who should not be breathing or talking. And yet breathing and talking she would again do!…and so much more.

I went to see Leigh the next day…may I never pass up the chance to talk to a miracle of the Lord.  It was the very day after her horrendous ordeal. Her surgery was done, and she was sitting up eating and visiting with others… within a day of cardiac arrest and major heart surgery! It was beyond remarkable. Leigh recognized a divine nature to her life being spared. Not only was she spared from an early death, but her mind was left totally intact. She could have suffered incredibly from brain injury or stroke as well. She has a humble and grateful heart for all that happened. She told me that she looks forward to graduations, marriages, etc…the things that are taken for granted by so many. She has been released to home and is recovering and doing quite well. She is blessed to have a wonderful support system helping her through her continued healing. Hard to imagine caring for a newborn and toddler while recovering from having your chest compressed, shocked, and opened up. But what a testimony she has to share. I am honored that she has allowed me to share it with you all.

May we all cherish the very breath of life we enjoyed this day, and may we remember to praise the Lord for each new day we are given.

And yes, thanks to Leigh, I will stay in the ER yet another year. I surely can’t miss the next appointment!

Here was a sure promise for Leigh…

PSALM 118:17…..I WILL NOT DIE, INSTEAD I WILL LIVE, TO TELL WHAT THE LORD HAS DONE…

May God receive the glory.

The first pic is of Leigh the very next day during my visit with her. Isn’t she gorgeous!!?? And just over a week later she herself came back to our ER to personally thank us for our care. The pic is of Charlotte, Dr. Small, Leigh, and me. Nothing but smiles. Hallelujah to a magnificent God. 2013-03-06_12 32 57 (2) GE DIGITAL CAMERA 2013-02-21_17 21 25Here is her adoring family.

 

I See Jesus. March 26, 2013

Filed under: Uncategorized — gdnelson5 @ 7:54 am
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Nathan’s first word was ‘wace.’ He was around 15 months old at the time and I was content to hear anything resembling a word come out of his mouth. Although I would have preferred ‘mommy’…I would settle for his version of his second mommy, his then three year old sister Grace. ‘Wace, Wace,’ he would call out to her and she would beam at the sound. But in time, even that word would disappear. It was replaced by one word only, and that word would soon start to drive us all up the wall. ‘Ticka, ticka, ticka, ticka,… on and on ad nauseum. Ticka is not a word of course, but for my toddler son it was his sole vocabulary, amidst ever-increasing screams, cries, and tantrums. Those in the autism spectrum world are familiar with such repetitive verbal chants known as ‘verbal stims,’ , but I was in a state of denial at that time about Nathan. Gee whiz, there were even times I found solace in the way he would ‘ticka ticka’  in his room for hours while running his fingers along the textured walls. That was about the only time I could get any laundry done!   I figured the words would come, and I kept jockeying for ‘mommy.’ It would be many more months before that word came, and it came in the form of an echo, but it was still pure beauty to my ears.

While Nathan was showing moderate communication delays, there were many other concerns as well. He was diagnosed with classic autism just before his second birthday. That time was intensely painful and I let the autism consume so much of me. It was all I thought about  and I cried for many hours, every day. Now up until then I would have called myself a Christian, but when I needed faith and trust in the Lord the most, I had none. It seemed impossible then to even pray, and truth be told, I resented God for allowing the autism to affect our son. I was a carnal and mediocre follower of the Lord at best. But amidst the pain, the spiritual slug in me woke up. The tears continued, but I started to cry on my knees in submission to God. I had finally found the true battle position, and it was steeped in humility. The Lord God held every one of my tears, and he would soon give me a glimpse of future joys to come…..

It was in the middle of the early autism days when I found myself unable to sleep yet another night. I struggled with turning all of the thoughts and worries off. But on one particular night I felt a certain call inside to go and hold Nathan. Now, it was about three o’clock in the morning, and  any autism parent knows that you NEVER wake that child up! Sleep issues are on the worry list too. But the call was certain and so into his bedroom I went. No sooner did I scoop him up into my arms that I started to sob and weep uncontrollably. My body was shaking and I felt certain that he would wake up and flip out over what in the world was going on.  And yet he was so amazingly still in my arms. I can still feel that night as I type this today. I knew that I wanted to pray, but my tongue and mouth were useless to speak. I searched for words but it was too colossal and impossible. This mother wept and moaned, and finally one word came pouring out from the deepest crevices of my being…’Jesus.’ In all of the endless hours of worry, chaos, doubt, and fear, only one word was needed, and it made its way out of me amidst the moaning and anguish…’.Jesus’.  Romans 8:26 states that, “And the Holy Spirit helps us in our weakness. For example, we don’t know what God wants us to pray for. But the Holy Spirit prays for us with groanings that cannot be expressed in words.” It was almost instantly that Nathan began to stir a bit in my arms and then he SPOKE. I heard his voice say the name of Jesus, and it even sounded like he might have SAID ‘I see Jesus.’ Now, I knew he said Jesus. That I was sure on and was flabbergasted at that. I knew it was NOT ticka, ticka, ticka. and I knew it was his voice, but I immediately started to doubt the whole encounter. I told myself that there was no way he said “I see Jesus.’ That would be quite impossible, as he had never at that time said a sentence in his life, let alone a word other than ‘wace’ or ‘ticka’. My heart was burning in my chest and I started to ask Nathan what he said. I pleaded with him to tell me what he said, but in the same moment, it was gone. He had no words for me, but only uncomfortable squirms. I put him back to bed without protest and went back to my bedroom trembling. What had just happened?? I would contemplate that night for years, but what I now know is this- Nathan saw Jesus, and I saw doubt. It’s as simple as that. The boy that was deemed delayed and full of deficits was the only one in that late night room who had eyes to see.

It would be another couple years before Nathan would blurt out small sentences on his own. One such day came as we were driving to one of his therapy sessions. The words almost sent me careening into another car in front of us….’I see Jesus.’ I was amazed to see him gazing out his back seat window at a man next to us on a motorcycle. The man was a classic looking ‘harley dude.’ He had tattoos covering every inch of his exposed arms, long brown scraggly looking hair, and the quintessential ZZ Top beard. He actually returned our stare with a large grin. I instinctively started waving back like a star struck adolescent as I considered what Nathan saw in him. The world might tout such a man a criminal, which is exactly what happened to Jesus as well. My prayer at that moment was simple..’Lord, let me see your creation the way Nathan sees it, and the way that you see it.’

Fast forward a couple more years and we are living in NC. The move to NC from AZ will fill these pages soon enough! But at this time in our lives we were facing the fact that our youngest son Caleb was too having developmental delays. He was not as obviously affected as Nathan, but we could not deny that he too was showing signs of being somewhere on that autism spectrum. By now I had firmly chosen to root my faith and hope in the Lord, and so the tears did not sting the same. Yes, I still cried over Caleb, but I would liken it to a small stream, as opposed to the hurricane that had unleashed years earlier over his brother. I was never hopeless this time, which is all credited to Jesus. I had finally learned to start seeing him too. And so Caleb and I were on our way to see a developmental pediatrician to get the official ‘diagnosis.’ It felt surreal to be doing this again, but I vividly recall singing praise songs out loud during this drive. Did I fail to mention the car accident I got into on the day of Nathan’s diagnosis??..No, not this time. I chose to praise, despite how I felt. Midway there my precious two year old Caleb said ( he too had communication delays of course), ‘I SEE JESUS.’ Yes, you read that right. There was no prompting from me at all. The words just came out of his mouth, and this time I immediately recognized the holiness of the moment. I started shouting for joy..’Where Caleb, where is he? Where is Jesus sweet boy????!!!’ ‘There’ he said, as he gazed out the window. All I could see was a beautiful Carolina blue sky, but I knew he saw more. The tears erupt even as I type this. A day that could have been somber and broken, was transformed into a miracle. We arrived to our appointment and Caleb was quickly back to his usual speech, which was single words with few responses to direct questions. We were there for a couple hours when the doctor revealed what we had already known….that Caleb was on the milder end of the autism spectrum. He was given a label of PDD-NOS,  which is a hop, skip, and a jump away from autism. The words penetrated, but I could not stop smiling.  I just kept hanging on to what had happened on the car ride over. I looked back at what had happened in my living room at 3am so many years earlier as well. It was all playing over and over and filling my heart with joy at that very moment. ‘I see Jesus’ came out of the mouths of both of my special sons, and it didn’t matter so much about all of the ways they might not be ‘normal’ in this life. They had seen more than most people will ever allow themselves to see. They are the Lord’s, and I have been entrusted to care for them as their mother, which is beyond amazing.

Do you see Jesus?? Get to looking…..

I have included this pic taken in 2006. Caleb is 15 months old, and Nathan is 3…sister Grace is 5. As usual, they are looking in the right direction! Picture 037

 

Just a touch of anaphylaxis. March 22, 2013

Filed under: Uncategorized — gdnelson5 @ 12:54 pm

It has been far too long since I have written and it feels good to get these fingers typing again. The topic that stirs my heart the most is the Lord God, and so I shall share one of the more recent testimonies of his faithfulness and goodness. I have come to a place a long time ago that I simply trust and believe in him no matter what. This life is hard, but God is abounding in goodness. This testimony is a reminder to see his light in the midst of trials. Without a test, there is no testimony.
A few months back my charming husband Grant gave me quite a scare. He has developed some allergies since we moved to NC and at times will come home from a run with swelling to his face, especially his eyes. It turns out that he is allergic to possibly every tree out here! The allergist said he would do better in a state like AZ…no kidding, that is what he said. He did not know we had moved here from that very state! Too late!…. And so one night Grant came home from work and said he was going out for a usual run. He had been on some maintenance meds and had not had swelling or problems in over a year. He happened to eat some peach yogurt before leaving but had eaten peaches many times before. He was not gone long before I heard him return and immediately start the shower in our bedroom. I could hear him but I was with the boys putting them to bed. As I wondered what he was doing already home, he called out to me. There was something strange in his voice. I was stunned as I encountered him in our hallway. His face was actively swelling before me with his left eye completely swollen shut and his right eye not far behind. His hands and feet were blazing red and he was itching all over. He was sweating profusely and short of breath. He was a hot mess. But what sent my heart into overdrive was what I heard coming from his throat…stridor. Stridor is a high pitched wheezing sound coming from the upper airway suggesting that there is much inflammation and swelling in there. If there is enough swelling, then the airway can completely close off, and quickly. What was happening to Grant was happening in seconds before my very eyes and I immediately started to sense a panic inside. If his airway closed, then he would die…right then and there. He had never had a reaction even close to this in severity before and the ER RN in me knew that this could quickly become fatal. It was an agonizing and helpless feeling. Feelings can many times get us into trouble, and if I had reacted on feelings alone, I would have become a useless heap of tears. I knew what had to be done to help him, but I did not have access to the right medications or means to help him. I of course initially planned to call 911 and as I headed for the phone my heart cried out…’Oh God, please help Grant…and me!’ The answer that came to my spirit was immediate. Instead of dialing 911 and having to speak to an operator, I knew I had to find some Epinephrine, and fast. The ambulance could take too many minutes from where we live and I felt a certain urge to seek the Epi right then and there. There was no question what instructions were being told to my heart. It was that clear to me in that moment. I ran outside and across the street. We have neighbors who have a young son with food allergies and sensitivities and my feet were flying there almost on instinct. It was around 8pm and I had no idea if they were home, let alone if they even had an Epi pen. As it would happen, the father Kevin was outside in his open garage. I am sure I came across as a lunatic, but somehow the words “EPI PEN” fumbled out of my mouth. At this his wife Jeannine came around the side door, heard those words, and went running. She resurfaced seconds later with an Epi pen in hand. Hallelujah! Of course it only took mere seconds for me to run back into my house, but the wave of thoughts and emotions that passed through my head in those moments was vivid. I started going back eighteen years…I have loved this man for eighteen years and we have been through major high points and valleys in our marriage, but in that moment there was one image that stuck out as if it was happening right then…- I thought of the first time I ever laid eyes on him. Ha. Of all we have been through, I thought of that fateful day back in 1995 when I entered the gym with my three inch high bangs and LA Gear tennis shoes. He walked by as I was on the stair climber and I had never seen anyone so beautiful before. He had muscles on top of muscles and his smile melted me. I only saw that smile because he seemed to know every girl in that gym by name and flashed a grin at them all. Oh yes, I deemed him a ‘player’ but wondered how amazing it would be just to sit across from him for one dinner and simply stare at him. I mustered up some courage and came up with a silly line to say to him at the water fountain, and the rest is our history…..
‘Please dear God, please rescue him because I cannot lose him like this.’…It was one of those prayers full of fear because in the midst of trouble, we can lose our confidence and faith. I could hear his breathing as I flew through the open front door. Our twelve year old daughter was standing beside him. There he sat full of sweat, swollen all over, and working to breath. He was as beautiful as ever. Both he and Grace were a bit shocked as I lunged the needle into his thigh, but a wife’s gotta do what a wife’s gotta do. It was literally about one minute in which Grant was having relief. His breathing started to stabilize and the stridor was much improved. I had breathing treatments, Benadryl, histamine blockers, and steroids ready to go….but that Epi was the critical link. Yes, Grant was turning around and doing very well. Our daughter was relieved to see it, but had no idea to the critical nature of what her dad had faced. Jeannine as well would later share with me that I was incredibly calm as I was standing in her driveway with my request that night. I thank God for his very clear direction and his overwhelming peace and assurance that overtook me. I am not able, but He most certainly is. ‘I can do all things through Christ who gives me strength.’ Philippians 4:13.
I made Grant stay up for two hours that night as I watched him. He fell asleep immediately after that, but I stayed up for the duration. It all really hit me as he slept, and my tears were then flowing in buckets. I was so very grateful for every detail…for every piece of this scenario that was present for us to have a miraculous ending.
There are many agonizing and painful things that can happen in this life, and we are to trust God through them all. No circumstance will ever change the fact that God is for us and that Jesus Christ died in our place. In him, we can have eternal life, which puts the pains of this life into great perspective. Even if Grant had died that night, I would still have that assurance and hope. Nothing can or ever will take away from the gospel truth. And how could I ever fault a mighty God who gave me such a man to love in this life? Each day is a gift and we are not guaranteed or entitled to the next one. But I type this today with the joy and elation that my husband was divinely protected and is still here today, and hopefully for many more years to come. And yes, we now have many Epi pens at our disposal!….And we stay away from peaches as that appears to have been the culprit.
Just an added note.. Yesterday Grant was nagging on me about how I do not cook the stovetop the ‘right’ way. He of course was saying it in a very healthy state…no sweating, no swelling, no shortness of breath… I could only smile. Maybe I’ll get around to cleaning that stove the way he likes. I’ll add that to my non-urgent prayer list…..
Here are some pics… Grant in his normal state. Grant a couple hours after meds the night of his allergic reaction.Family1 047 GE DIGITAL CAMERA

 

Autism Sucks

Filed under: Uncategorized — gdnelson5 @ 12:28 pm
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Life became a real blur for me back in 2004 when I was having to face the fact that my then 2 year old son Nathan was not developing as he should. I recall feeling certain that he would just ‘catch up’, but the gaps only seemed to grow wider and the fear of it all felt like some sort of abyss ready to swallow me up. I begged for sleep, as it was the only time I felt relief from the worry. Depression is a sneaky enemy, in that it slips in through a side door but starts taking over every room in you. I did not have the true joy of the Lord back then, so I was trying to navigate the enormity of it all within myself. I do not recommend that. I tried to find anyone to commiserate with, but even that proved to be cumbersome. My husband grew weary of all of my tears, and I was frankly mortified that he did not appear to shed even one. God kept us together during that time, because we lost each other somewhere in that same dark abyss. Our communication came to a screeching halt. My friends had plenty of words of advice and counsel for me, and I know that much of what they were saying was true, but I could not accept it at that time. I could not accept or grasp that Nathan had a wonderful and divine purpose for his life, or that my family would be stronger and better as God would use this to glorify himself through us. I could not see the hope, the joy, or the beauty of any of it back then. I was operating on fear, which will always cancel out faith. I can recall friends telling me that Nathan might not even understand that he was different or that he might not really care that he was isolating himself from us and the world. I resented such comments. I knew he was in there, and that he indeed cared. Yes, many things were said to me back then, but there was one statement that really stood out at the time. It was not profound or deep in any way, and it did not seek to pull me up out of my time of mourning. It was a simple statement of fact that seemed to sum up the vastness of what my heart could not express. It came from a stranger and I cannot even recall how it came about…but I do recall the words she said…’autism sucks.’ Yep, she said it and I actually heard myself laugh out loud. ‘AUTISM SUCKS’…I gave myself permission to repeat it out loud.

Now, I love my son with all that I am. He is a gorgeous and wonderful creation. We have been through so very much and have come so far in this journey, but even now it is ok to say it. Go for it mom..dad..brother….sister….aunt…uncle…friend…If you love and adore someone with autism it is ok to say it…Autism Sucks.  There…now don’t you feel better?

 

 
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