Posts Tagged ‘SMA Type 1’

Heatwole Gathering-2016

This year our family gathering was at the home of Jim and Kendra Landis. They have a beautiful home site nestled on the edge of Shenandoah Mountain with National Forest all around. Jim is very creative and their place was better than a park with a zip line, playground, walking trails and picnic area.  The pictures and video clips will tell the story.

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My parents, siblings and spouses started Saturday morning with a delicious breakfast at the home of Rich and Marj.

Back: Ed & Eileen Heatwole, Marj & Rich Heatwole, Gene & Pat Hertzler

Front: Mother (Fannie Heatwole), Phil & Ev Borntrager and Daddy (Dwight Heatwole)

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Midmorning we begin to gather at the Landis home. The kids had a blast climbing on the monkey bars, swinging and sliding on the play set, and riding their bikes.

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The zip line was a favorite for kids and a few brave adults.  The “take off” perch was on a cliff behind the house.  There was an adult at the station to ensure all safety precautions were followed and the harnesses properly hooked to the cable.

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After putting on the harness,  you had the thrill of a 500 ft. zip across the lawn to the “landing station”. Two adults were there to receive/catch the “zippers” and help them unhook.

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Some of the smaller kids rode tango with another but each had their own harness

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Spectators!

Jase

I think most of us were anxious and excited to see little Jase. It has been awhile since we had an update on him. He is now 14 months old, cute as a button and a specimen of health.

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He had a heart warming smile that made you just want to snatch him up and cuddle on him. He had a strong preference for this parents and preferred you visit from a distance!

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No SMA baby ever dreamed of standing like this.  What does the future hold? No one knows. He is on an experimental drug for two years. Because he has participated in the program and shown huge results, he will be able to continue the drug.  Other kids his age have crawled and are toddling around.  So far he has not achieved that feat. He wants to crawl and rocks himself forward but can’t quite get his body into the right position. Is he just slow? We hope so. But standing on his mom’s lap he definitely has strength in his legs.  The movement in his arms is strong and there is nothing floppy about him. It is truly a miracle and gift from God that modern medicine has gotten this far.

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I had the privilege of holding him while his mom worked with lunch.  Let’s say “he tolerated” me with a whine!  But whenever I got too close after that he would watch me with those huge brown eyes and get that worried look on his face with a hint of a twinkle in his eyes.  What a charmer!!

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I could hardly get enough of the little fella!  He has no idea how unique and special he is.

The Lazy Boy Chair

Gene has had a rough summer with four surgeries (one on his shoulder and three for a kidney stone). He is still trying to get his strength and energy back.  He was struggling this weekend with extreme muscle soreness.

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He started out in his lawn chair but behind the scenes Jake and Jim were busy carrying a recliner from the house and up the hill to the picnic area. When the time came to move to the area for lunch,  Jim offered to carry our chairs and walked with him.

This video clip tells the story!

 

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This was really, really a very thoughtful and much appreciated prank!

A while later the sun popped through the leafy overhang and the guys immediately pulled out a patio umbrella for shade!!! How much more loved and special can you get? Jim and Jake’s mother-in-law wondered aloud if she would be this special and cared for when she was old! (The answer is on the video clip!)

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The Picnic Area

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A funny adornment-I guess just in case you are brave enough!!!

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The Faces of Us!

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The youngest of the clan.

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It was a fun, relaxing and absolutely perfect day with good food, fellowship and weather.

P.S. We missed the families of Keith, Jill, Brian, Jeannette, Aaron and Karmen. One of these couples was in Ireland on vacation and another is expecting their baby any day, any hour!

Celebrating Ariel’s Life

Ariel Joy Yoder

December 27, 2012 – April 25, 2014

Ariel

The death of a loved one stops us in our tracks and makes us think about our own mortality.  But there is something extra sobering about the death of a child. They are not suppose to die before they have had a chance to live life to its fullest.

Yesterday we celebrated the short life of Ariel Joy who died from SMA-Type 1  (Werdnig-Hoffman Disease).  In 16 months she  had shyly charmed her way into many hearts. She couldn’t speak except to utter a few noises but she could smile.  Her huge brown eyes would connect with the person talking to her for a few seconds as she flashed a big, wide smile.  Then very quickly she would drop her gaze as she glanced to the side. It was sweet, demure, bashful and charming.  If you wanted one of those precious smiles you had to drop to her level and look her in the eye.

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Ariel and Grandma Yoder

 

She left behind no wealth, no words of wisdom, and no achievements.  She never said a bad word, fed herself, or learned to walk. She was never able to approach people, they had to come to her.  She left her legacy: joy in the form of  her smiles, lot of smiles, and the quiet presence of a life she struggled to live.

Ariel was loved.  Her two brothers adorned their little sister and her parents faithfully and without any complaint attended to her every need.  Ariel went to church and she was told about Jesus and His love for her. She was prayed for by her family, extended family, church family, friends and friends of friends who fervently hoped and longed for a miracle of healing.

Ariel lost her fight to live on earth but she gained heaven’s victory. SMA is a cruel disease rubbing the body of the ability to move and grow. At 16 months she weighed a mere 10-1/2 lbs. But now she is fully and wholly free and perfectly healed.  She can sing and dance, run and jump. She is celebrating life to the fullest in the presence of Jesus.

And so it causes me once again to pause and think. I think about life and what it means, I think about the finality of death and infinity of eternity.  I think about choices and our ability to choose in life where we will spend eternity. At the moment of death there is no second chance, no coming back, no opportunity to change my mind. Regardless of the allotted years, I will have had my chance at life.

The last weeks had become an increasing struggle for Ariel. Breathing and eating became more difficult and she had several choking episodes. She started running a fever and about 1:30 on Friday morning Cheryl got her and put her between them in bed. At six when they awoke she was gone.  We don’t know all that happens at death but God’s Word gives us nuggets of information, treasures that bring peace to our minds and understanding to our hearts.  Sometimes the veil between earth and heaven is briefly lifted for someone who comes back from death and we have their testimony of life on the other side.

We know that we have guardian angels and that they do the bidding of our Heavenly Father. (Psalms 91:11) We know they come at the time of death and carry us to heaven (Luke 16:22). I envision excitement in heaven as the order was given to go and get little Ariel.  Heaven paid a visit to 7300 Kathydale Rd. The angels knew exactly where to go and went with haste. Did they lovingly caress Jeremy and Cheryl as they slept and kiss them on the cheek as they gently cradled Ariel’s spirit to take her home to Jesus?  Were six little cousins* and other extended family members summoned to the pearly gates to welcome her home?

Psalms 116:15 says “Precious in the sight of the Lord is the death of His saints.”   As we laid to rest little Ariel we celebrated her short, sweet, innocent life not only with tears of loss and sorrow but also with tears of joy and release.

At the close of the memorial service the rafters in the Church of Baltimore rang as we sang with passion “I Know That My Redeemer Liveth” by Jessie B. Pounds.

I know that my Redeemer liveth,
And on the earth again shall stand;
I know eternal life He giveth,
That grace and power are in His hand.

Refrain

I know, I know, that Jesus liveth,
And on the earth again shall stand;
I know, I know, that life He giveth,
That grace and power are in His hand.

I know His promise never faileth,
The Word He speaks, it cannot die;
Though cruel death my flesh assaileth,
Yet I shall see Him by and by.

Refrain

I know my mansion He prepareth,
That where He is there I may be;
O wondrous thought, for me He careth,
And He at last will come for me.

 

*Note: There have been numerous miscarriages in the family and Ariel’s little cousin Truman died two years ago from the same disease. Someday I will write about our two children who also died of the same disease.

Ariel Joy (About her struggle to live in the last weeks)

The Life of Truman

How Truman Touched Our Lives 

 

Ariel Joy

 

December 2103-3

Ariel Joy

(Hebrew name meaning Lion of God)

A little over two years ago I posted several blogs about my nephew Micah’s son, Truman, who passed away from SMA Type I or Werdnig Hoffman disease. SMA is a severe genetic disease attacking the nerve and muscle systems.  Children born with this disease are known as “floppy” babies.  As the nerves quit functioning that control the muscle movement from the spinal cord they lose the ability to move. It eventually affects their breathing and swallowing.  We also had two children with the same disease in 1977 and 1982.

Fifteen months ago this cruel disease surfaced in the Heatwole family again. My niece Cheryl has a little girl, Ariel Joy, who is fighting for her life.  It is very unusual for it to show up in a family this many times as both parents have to carry the genetic markers for the disease.  Just to understand the family connection…Micah and Cheryl are brother and sister and their dad, Richard, is my brother.

September 2013

Ariel has huge, imploring eyes and an angelic smile. She has never rolled over or taken a step. She can’t turn her head but she can turn her eyes. She is very aware of her surroundings. She loves her family and feels very insecure when others try to touch or hold her.

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Here she is celebrating her one-year birthday-December 26, 2013.

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Time is running out for Ariel unless God performs a miracle.  Her parents, along with family and friends, have diligently and persistently implored God for a miracle to heal their little sweetheart.  It truly is amazing she has made it this far. Normally they do not get to celebrate their first birthday.

April 2014

Ariel is very tiny, weighing a mere eleven pounds. She is a fighter and several times has had a very close call.  Her swallowing is now being affected which makes it very difficult to even eat pureed food.  I quote from Jeremy and Cheryl’s March 23 facebook page….

“Well friends, it would be impossible for us to make up the kind of hope that we are experiencing right now. Two days ago Ariel choked on a bottle, stopped breathing, became blue and we thought we had lost her. But she came back! The last two weeks or so, she’s been borderline sick and “on the edge” health-wise. The choking event wiped her out and yesterday we truly felt we were looking at the end. We kissed her last night and put her to bed feeling like we had said “goodbye”. But this morning…. ! She woke up early and took some water. I was just trying to make her comfortable but she liked it and wanted more. Then she wanted breakfast. She polished that off, gave us tiny smiles and was interacting some, looking around with bright eyes…more herself than she has been in days. She has been sleeping, now, all morning. We are so encouraged and are, like I said, hopeful. I have to admit that my soul has been suspicious of such hope. After all, I feel I’ve been looking death in the face. But I have said to my soul, “Bless God! To Him belong escapes from death. Hope in God! Rest and receive hope.” What if we have been walking through the valley of the shadow of death and we’re actually, like He said, walking THROUGH. Please continue praying! (We cannot express how grateful we are!) We are so dependent on His presence, protection and touch.”
It was 37 years ago today that we laid our own little Karla to rest.  I remember and my mind is very much on little Ariel and her struggle to breathe, eat and live. I think of Jeremy and Cheryl and their struggle to cling to the threads of hope. Hope, that just maybe, they will be granted a much desired miracle.
I am reminded of my Heavenly Father’s deep love for his children. I am reminded of His presence, His peace and His comfort. Maybe He will yet miraculously choose to heal little Ariel in this life. But if He doesn’t we know that she will be perfectly and fully healed in her new life with Him.  God tells us to bring our sorrows, our desires, our needs, our petitions, our joys and our worship to Him.  And so we enter the throne room of heaven and ask for a miracle for little Ariel.  God hears.  Regardless of the outcome I will praise His name and thank Him for His goodness. I can trust Him.

Wrestling With God

I was working in the garden this afternoon and thinking about several different  situations some of our family and friends are currently struggling with.  One young couple just lost their 11-month baby to a cruel disease, a family member is battling breast cancer, another young father has brain cancer with 12-18 months to live, another young  couple has just learned their little 5-month old daughter has a fatal genetic disease, and a  man tried to commit suicide by shooting himself in the head.  Theses are hard and difficult struggles, illnesses, and situations.  In the midst of these each of these situations are hurting, suffering people-people I know and care about.  And this is just my small world.

I pray. Often I struggle with how to pray for situations and people.  Do I plead for a miracle? Do I ask God for healing when there doesn’t seem to be hope for one?  How do I have faith that can move mountains and yet yield to God’s sovereign and divine plan for my life and the lives of my friends?  Do I really believe God can do the impossible?  Does God ever change His mind? How can I know God’s will?  I wrestle.

I know we live in a sinful world. We all experience sickness, pain, and tragedy.  Someday the clock will stop for each one of us.  Sometimes I grab at faith and come up empty-handed.

I thought of Jacob.  He was faced with a frighting situation.  Years earlier he had “tricked” his brother and stole his brother’s birthright for a bowl of stew.  His brother, Esau, hated him fiercely and wanted to kill him. He fled for his life and for years lived in a foreign land where he accumulated a family and wealth.   Finally, he decided it was time to go back his homeland and father.  With his family, livestock and possessions in tow, he navigated by foot over miles and miles of dry, desolate, desert land.  And then he received word that his brother was coming to meet him with 400 men. He didn’t know if Esau was coming as friend or foe. Jacob was greatly afraid and distressed.  That night he wrestled with God.  It says in Genesis 32: 28 “Your name shall no long be called Jacob, but Israel; for you have struggled with God and with men, and have prevailed.”  Jacob wrestled with God.  God touched Jacob and his hip was displaced.  He limped for the rest of his life.

I also thought of King David. His infant son became ill and was dying. God sent the prophet Nathan to warn David this was going to happen. He had committed a shameful act and committed adultery with his friend’s wife and then had his friend killed in battle  (II Samuel 11-12).  For seven days David pleaded with God to heal his son. He fasted and laid all night on the ground.  No one could comfort or reason with him. His grieving was so intense that his servants were afraid to tell him when his son died, worrying that he may do harm to himself. David became aware of them whispering and perceiving that the child had died asked them.  They took a deep breathe and told him the truth.

And then David did an amazing thing that stunned his friends. He got up off the ground, washed and anointed himself, put on clean clothes and went into the temple and worshiped.  Then he went to his house and requested food to eat.  The servants asked him, “What is this you are doing? You fasted and wept for the child while he was alive, but when he dies you get up and eat food.”   And David said, “While the child was alive, I fasted and wept; for I said, ‘Who can tell whether God will be gracious to me, that the child may live?’  David wrestled with God and then worshipped.

Jesus struggled in the garden before his death to accept the Father’s will for his life.  Alone and in deep agony of spirit He sweated drops of blood.   But then he prayed, “Not my will, but yours be done.”  Jesus wrestled with His Father and accepted the cross.

It is a good thing to wrestle with God.  We need to bring our problems, trials, illnesses, situations to Him. Often it is difficult to know the will of God.  Often we struggle to accept and understand what is happening. The struggle to discern, understand and accept can be a heart-wrenching ordeal.  Wrestling brings our burdens, desires, struggles, hopes, fears, and pain into the presence of an Almighty God for HIS attention and HIS touch. It is there I find hope, mercy, grace and sweet surrender.

I remember a time of deep wrestling for me.  Our son Greg was probably 6 months old. He had a genetic disease called Werdnig-Hoffman Disease (SMA Type 1).  He could not move his arms and legs or roll over. He could not even move his head from side to side.  I had a friend who kept saying, “If we just believe and pray enough, God can heal Greg.”  I believed in a God that healed and I believed in a God that did miracles.  I also knew that Greg had a fatal disease and there was no cure or survivors. He would not live to see his 1st birthday.  I wrestled with God.  It was a difficult faith dilemma that I struggled to come to peace with.

One day I laid Greg on the kitchen table and took my other two children along to the barn to get a jug of milk.  We were only gone a few minutes and Greg, alone in the house, was safe on the table-so I thought. After all he could not move-not one inch. When I walked in the door my heart about flipped out of my body.  Greg was laying on the floor, crying with his weak, pitiful cry, gasping for breathe. I picked him up and held him tight.  In that moment something very precious happened. I did not hear an audible voice but something spoke deep to my spirit.  I knew in that moment that God could heal Greg.  I also knew that He would not chose to do so. I will never know how Greg got on the floor (although I have my opinion) but I do know my wrestling was over.  I was free and at peace.

The wrestling of other people will not spare you from your own wrestling.   As I read and hear the stories of other people of faith it gives me courage.  When I pray for others, I ask for miracles.  I also ask for God’s presence, peace, wisdom and understanding.  In our wrestling, God comes near and dear and we, in some way like Jacob, David, and Jesus,  experience His touch.

Loneliness

Loneliness is a desolate, windy path of potholes and snares.

Loneliness is a season of despair, fear and pity.

Loneliness is a brutal taskmaster as it distorts the truth and exaggerates the facts.

Loneliness is a time of sadness, pain, isolation and self-absorption.

Loneliness separates, isolates, traps and enslaves.

Loneliness is like quicksand, an ocean undercurrent, bog, pit, and dungeon.

Most of us at some time have crawled on the lonely path of loneliness.  There is no peace, joy, contentment, or light on this path.   Faith is weak, hope has despaired and the horizon is dark and stormy.

My most poignant season of loneliness occurred when we were experiencing the uncertainty of our newborn son’s health.  When our fourth child, Greg, was born we could not pronounce him healthy even though the doctors had given him a clean bill of health. Our second child had been born with a genetic disease that claimed her life at the tender age of 5 months.  When our third child, a daughter, was born her daddy declared her healthy.  That was that: no fear, no worries.  But with Greg it was different.  With Werdnig-Hoffman disease (SMA Type 1) the child can be born appearing healthy.  However, we carried the most acute form of disease, which meant by the time the child was six-weeks old the muscles would start to degenerate and life expectancy was less than one year. As we faced the uncertainty we didn’t know if God was preparing us for what laid ahead or Satan was binding us in fear.

My husband and I decided not to express our fears.  A clock began to tick; our season of loneliness began.  We would wait, hope, and worry. We would not bother any one else with our problem.  We would wait until “we knew” for certain the diagnoses.

One Sunday after church, I was standing alone in the hallway holding my baby and listening to the chatter of people visiting.  Deep loneliness washed over me. Sadness played its sorrowful tune. Fear sat on my shoulder and pity wagged a bony finger.

A few Sundays later we were ready and  our pastor shared our burden with the congregation.  The fellowship surrounded us with love, compassion, tears and prayers.  Greg Alan did have Werdnig-Hoffman disease (SMA Type 1).  Nothing was going to change that fact. But something happened that I will never forget.  Fear fled and pity evaporated.  My brothers and sisters became the loving arms of Jesus surrounding me. I was not alone.  I still had to walk a difficult path but there were now encouragers strolling beside me.  There were illuminated signposts showing the way and the potholes were covered in prayer. There were even flowers growing beside my path.

During a very lonely time Jeremiah cried out, “In dark places He (God) has made me dwell, like those who have long been dead. He has walled me in so that I cannot go out; He has made my chain heavy.  Even when I cry out a call for help, He shuts out my prayer” Lamentations 3: 6-8.

Jeremiah was very lonely. He felt no one believed him and everyone was against him. He even felt shut out and abandoned by God.

Elijah had just witnessed an incredible miracle of God.  It was a mountaintop experience. God rained down fire on the alter in answer to Elijah’s fervent prayer.  A ferocious storm loomed on the horizon and Elijah pulled up his skirt and outran the chariot of King Ahab back to the city. When the wicked queen, Jezebel was told of the slaughter of her beloved priests of Baal she threatened to kill Elijah.  In panic Elijah ran for his life.  In fear he sat under a broom tree in the wilderness and self-pity became his sole mate.  In despair he prayed that the God of life would take his life.  Later God appeared to Elijah as he hid in a cave.  Elijah whined to God, “I have been very zealous for the Lord God of host; because the children of Israel have forsaken Your covenant, torn down Your altars, and killed Your prophets with the sword.  I alone am left; and they seek to take my life.”  I Kings 19:14

Elijah distorted the truth and exaggerated the facts.  God told Elijah to get off his duff and get to work.  God also gently reminded Elijah that 7000 people in Israel had not bowed their knees to idols.  Elijah just thought he was alone! His fear, pity and despair trapped him in a self-absorbed pit.

Probably the most poignant and heart-wrenching picture of loneliness is that of Jesus in the garden of Gethsemane and later on the cross. In the garden his devoted disciples fell asleep when he needed them the most.  In fear and agony he sweated drops of blood.  On the cross he cried out in anguish, as he felt forsaken and deserted by God.

When you feel alone, think on these things:

  • Be strong and of good courage, do not fear or be afraid; for the Lord your God, He is the One who goes with you.  He will not leave you nor forsake you. Deuteronomy 31:6
  • The eternal God is your refuge and underneath are the everlasting arms.  He will thrust out the enemy from before you.  Deuteronomy 33:27
  • Yea, though I walk through the valley of the shadow of death, I will fear no evil; for You are with me; Your rod and Your staff they comfort me. Psalms 23: 4
  • Fear not, for I have redeemed you; I have called you by name; you are mine. When you pass through the waters, I will be with you; and through the rivers they shall not overflow you.”  Isaiah 43:1-2a
  • But those who wait on the Lord shall renew their strength; they shall mount up with wings like eagles, they shall run and not be weary, they shall walk and not faint. Isaiah 40:31

Have you noticed that….

  • The windy path of loneliness is through a lush valley.
  • Spring follows the winter of despair.
  • If we abide in God’s word His truth will set us free. John 8:32
  • God desires to give us beauty for ashes, joy for mourning and a garment of praise for the spirit of heaviness (Isaiah 61:3).
  • Light dispels darkness.
  • Those who experience the presence of the living God soar like eagles.

Like Jeremiah I can say, “Through the Lord’s mercies I am not consumed, because his compassions fail not. They are renewed every morning; great is your faithfulness.” Lamentations 3: 22-23

Written February 15, 2004

The Life of Truman

Note: These are posts (mostly by Micah) on his fb page. I have been coping them and keeping them in a journal.

This journey for them has been especially tender and dear to my husband and I as we have walked this same journey twice with two of our children who are waiting for us in heaven.

Four short months but a life complete!

November 7, 2011
Truman Lane Heatwole was born at 10:45 pm last night! I am a proud dad once again! =) PTL

November 9, 2011
Truman Lane could use some prayers right now! To make a long story short he doesn’t have much movement of his arms and legs. It doesn’t seem as though his muscles have developed properly. We are praying that they will grow so that he doesn’t have to have more test done. This is obviously a very short note about a complicated thing but prayer isn’t complicated so CARRY ON!! =)

November 18, 2011…Back from the doctor. The standard test they ran on Truman came back clear. So now the next step is going to University of Virginia (UVA-Charlottesville, VA) to get genetic testing done on him. We are thankful for all the prayers and are thankful that the ball has started to roll into finding out what the problem is! Continue to pray for us and pray for a clear diagnosis!
November 21, 2011 …Truman will be going for genetic testing at UVA (Charlottesville) Nov. 28 at 9:30! Thankful that God opened this door because they were saying it was going to be three weeks before they could get him in!
November 29, 2011…Well we had a successful appointment today for Truman, but the waiting isn’t over. In about 2 weeks we should have some test results back and if they come back negative, then more tests will be done and so on until they find something or he starts moving!!! 🙂 Thanks for all the prayers being sent up on our behalf!
December 6, 2011 …We got the results from Truman’s test back today. It was not great news. He tested positive for Werdnig Hoffman disease. We are still praying for a miracle, but we are also aware of the fact that unless there is one we will probably be laying our little boy to rest at some point. We thank everyone for their prayers and support!

December 12, 2011…What a path we have been called to! The doctors visit, on Friday at UVA, went well. We didn’t really know what to expect. It was mostly talking to doctors, counselors, and people we will need to see in the future. A lot of talking about the decisions we will need to make in the future. Sunday night was a special night for us. Truman played baby Jesus in the church play. I will admit it was more then a little emotional to see him up there. It was so sad but yet so sweet at the same time! He was representing the part of Jesus and he may also be the first to see Jesus! Exciting but conflicting stuff!

Continue to pray for us and Truman!

December 23, 2012: Truman…Truman…..Truman! I have been told that it is a time for me to give an update……so here goes! =)

What a blessed man I am! Being that it is the season of Christ; I have been thinking a lot about the blessings that I have been given! It is easy to get discouraged and question God in the hard times, but GOD IS GOOD! Christ is worthy of my praise! When I look at the situation we are in with Truman I sometimes think of Mary. (Jesus’ mother) The doctors have given my child a death sentence. There is really no hope without a miracle!…… I wonder if Mary would have felt this way at times. Did she know the prophesy? Surly she would hear the stories of the coming Messiah, and what the prophets said about how he would suffer. When she looked at Jesus did those thoughts go through her mind? Mary probably wondered if such a sweet baby could be hated by men, could carry the sins of all men, and be the Son of God? When I look at Truman; he also seems to perfect to have a death sentence! He is starting to grow and get a personality. He looks up at me with the sweetest of smiles. Can there really be a problem with him? NO!! TRUMAN IS PERFECT!!! When God created Truman… He was pleased!! And so am I!! I am thankful for Truman just the way he is! I don’t know the plans God has for him, but He does have plans! We have seen and answered prayer this week! Truman for the last couple of week has been a really bugger! Constant fussing, not eating well, and always needing to be held. For me (and Krista) this became very frustrating! We were in constant prayer, no longer praying for a miracle, just praying he would stop crying!!=) I got very discouraged! One night, after giving up trying to fall back asleep, I went out to Krista and said, “it is not enough that our son is going to die.. but he is going to be a pain the whole time he is here.” (I immediately felt guilty for saying that and slunk back to bed) =) Well, God must have heard my frustration that night! Since then it has been like a light-switch was switched! He has been so much more of a joy to be around and much more content! THANK YOU JESUS!! Here we are in the season of a Miracle! I am praying that this Christmas Christ would do a miracle in the life of Truman, and I am also thanking Him for the miracle He has done in MY life!! Continue to remember us! We are in constant need of prayer and support! Thank you so much for caring for us!

December 31, 2012…Truman…over Christmas we were down in FL. We had a great time of being with both sets of parents! It is a bit strange that both my parents and Krista’s ended up in the same small town thirteen hours away! Christmas was both a happy and sad time for me. It was a joy to celebrate the birth of my savior, and to reflect on what He has done for me! But it was also a sad time… realizing that next year our family may not be complete! This past week Truman has began to fuss a lot again. Nearly every time Krista would feed him he would only nurse for 3-5 minutes before throwing a fit. After being in contact with his doctor it was decided that he should go in for a visit. So yesterday he went to the doctor. Up until this point the whole ordeal with Truman has seemed like a dream. We know that there is a problem, but there haven’t been many signs other then the lack of movement. Well, yesterday it became more real. At the doctor they said that they are starting to notice signs of deterioration: quivering tongue, swallowing problems, and lack of energy. It is a sad realization of what may be in the road ahead! The thought of having to watch our son die over a several month period is stating to look like an unbearable task! We are praying for a miracle, but realize that there may not be one! I was thinking recently about Jesus in the garden. He prayed “let this cup pass from me.” God did not remove the cup! One thing I do know…. God will give Krista and I the grace and strength to come through! We are in desperate need of prayer! I thank everyone who has been praying for us, but I think the hardest days are still to come! Another thing that you can pray for is Lincoln! He has become very attached and protective over his brother! Pray that his heart stays soft to God through this process. We haven’t said anything to him about there being a problem, but I am sure that day will come! Lord, give us wisdom!

January 7, 2012…Truman…the last week has been one with ups and downs. It has been a hard week but it has also been one with little victories. As I have written in other posts Truman has been fussing more. Swallowing has also become difficult at times. Due to these factors his doctor wanted us to be evaluating him last weekend. They had given us a few pointers and ideas and wanted to see if they would help. Well, Sunday was probably the most difficult day so far! I was leading praise and worship Sunday morning so had I left for church early. Truman hadn’t eaten much during the night and had only drank one ounce in the morning. During the service Krista flagged me down. Truman was crying really hard and was really weak. He struggles with swallowing so when he doesn’t eat, he gets weak, and it becomes even harder. I ended up going to Wal-Mart during the service and getting a bottle so we could force feed him. Eventually he got enough so he was strong enough to swallow again. It was really hard! It was a first glimpse of what it may be like to have to watch our son die. It is so hard to watch him struggle with living! Since Sunday we have changed a few things. We have decided to bottle feed. This has helped a lot! We can now know exactly how much he is getting and he also seems to like it better. He has gained some weight and seems a little stronger. So we are thankful. Another thing we learned is that he loves to move. No matter how much he is fussing, if we start moving his legs or arms he will stop fussing! I can’t imagine how annoying it is for him that he has energy but can’t move much! Thursday we got our family pictures taken. The photographer came to our house. It was a really special time! We look forward to sharing them with you when we get them back next week! On Friday, it was such a blessing that my sister Kendra could come over and help Krista! Krista was able to get some house work done and was able to go into town and spend some time by herself! Friday was a special day for Truman and us. It was Truman’s 2 month birthday! Krista and I have decided to celebrate his month birthdays since he probably won’t have years. It was special to have my “brother” Philip and his wife and my two sisters, from Baltimore, and their families (minus Jake) here to celebrate. We are blessed! Because of some of Truman’s issues, they have moved up his UVA appointment to Monday morning at nine. Continue to pray for us as we go through this! Pray that God will give us wisdom as we work through different decisions we need to make. We need wisdom! Thanks for walking with us!!

January 24, 2012

I, Pat, spent the day with Krista and this is a pic I took of Truman. He was fussing and fussing. I finally told him to stop it and started talking to him about heaven and his grandpa Truman who was there waiting for him.  He started smiling and cooing.


Micah’s Picture.

February 9, 2012…Truman….we had a great visit to the doctor (doctors) yesterday. The appointments were supposed to be Wednesday and Thursday, but God worked it out that all our appointments were done by 1 p.m. on Wednesday! It was a long day! It started out with a rough night. Truman has been needing to be feed at least every three hours. We think this is because of some deterioration. That makes for some short nights, especially for Krista! So Wednesday morning we sleepily left for UVA at 7. Our first appointment was with the lung doctor at the hospital. As of now Truman’s lungs look clear and seem to be doing fine. Because he can’t cough we have been outfitted with a hospital grade suction machine, and are waiting to get a cough assist machine. The suction machine has a catheter that can go the whole way down to his lungs and suction out anything that may be in the way. I am not sure how the cough machine works yet but it somehow simulates a cough. The next appointment was also at the hospital with the feeding tube specialist. Truman hasn’t gained any weight in the last 3 weeks. We have decided to go ahead and implant a feeding tube. They are working at lining up a time to meet with the surgeon and get it put in. This will include a hospital stay for Truman down at UVA but it shouldn’t be more then a couple of days. Our third appointment was with his regular doctor over at Kluge Children’s Rehab. It was a sad but also good day! It was sad because it is just another step at realizing that this is for real! It was hard to talk about getting a feeding tube especially. It was also good because we have known that it has been coming for a while and it will let Krista and I get more rest at night. A year ago we never would have thought that we would be able to get though this, but God is good! He has given us the grace we have needed. We are thankful for the Christian body that has surrounded and lifted us up in so many ways! It has been such a blessing to have Krista’s friend from Alabama here the last two weeks! She left today and I am already starting to wonder if Krista has the energy for our two needy boys! Thanks so much for all your prayer and support! One more thing. We had some prayer cards made. They have four pictures on the front and a write-up on the back briefly giving a description of the situation. If you would like one or know someone that does they will be available at our church (Dayton Mennonite) or can be picked up at our house. If you have any questions about them or anything else about the situation feel free to ask! Thanks again!!

February 16, 2012…Truman….tomorrow we head to UVA again. We will be meeting with the surgeon and doing some per-surgery things. Truman may be spending a couple of days there this weekend depending on when the surgery is going to happen. We welcome all prayers! =)

February 17, 2012…We are home again! Krista and Truman to.  Tru’s surgery is scheduled for next Thursday so we will go back down there for a couple of days then! Thanks for your prayers!

February 22, 2012…We will be leaving for UVA at 4:30 in the morning. Pray for Truman as he has surgery and gets a feeding tube! Also pray for strength for Krista and I!

February 23, 2012 …

7:37 AM…Truman went into surgery around 15 minutes ago

12:36 PM Truman is now out of surgery and we are up in a room. Truman was NOT impressed the first few hours out of surgery. He also had a reaction to something which caused a rash. All Things seem to be going well now though. He is sleeping and his rash has cleared up. Thanks so much for your prayers and support!

2:31 PM… well the sleep didn’t last long. Truman has been crying most the time he is awake. (which is most the time) I think that main thing is that he is really hungry. He hasn’t eaten since 4 this morning and wont be able to eat until the morning. =( Pray that God will give him peace in his heart and contentment in his tummy!

February 24, 2012

2:08 PM Truman has been doing really well today! It was such a blessing that last night he was able to get some sleep! He has been able to drink a little milk today. They are only letting him eat small amounts every three hours. He is not impressed with stopping but is being a good sport. We will hopefully be able to come home tomorrow morning. Pray that Krista and I won’t get to hyper because it does get boring here! =)

February 25, 2012…We are all home and resting soundly! Thanks for all your prayers and support. We are so glad to have this behind us!

February 26, 2012

March 5, 2012

March 10, 2012 (Saturday)
5:56 PM Truman…well, it has been awhile since I updated. I don’t have time right now to give as detailed of an update as I would like! Truman does now have his feeding tube and it has been a real blessing so far. Krista and I would especially covet your prayers now. Krista and Lincoln have been fighting a cold the last week. It is a cold that causes lots of congestion. It seems as though Truman is now getting it. This is a fairly serious problem. In the last few hours it has been a struggle for Truman to breathe correctly and comfortably. Please pray that he will be able to get some rest and Krista and I would have wisdom and peace! Thanks!

March 11, 2012 (Sunday)
9:20 AM…Truman…Well, His night was better then expected! After I sent out the first update, Truman was able to calm down and his breathing became a lot better. This morning it is once again a struggle. Continue to pray for us! These are trying times!!

2:28 PM… Pray for Truman! He is in serious condition! Pray that he will either go peacefully or that he would pull through easily! Thanks.

3:03 PM… We are waiting on an ambulance to take us to UVA.

8:50 PM Truman….what a day! Truman will be at UVA for the night. Tomorrow we will decide what to do. They feel like he will make it through the night, but the prognosis isn’t good. Thanks for your prayers and continue to lift us up!

Posted by Marj (Truman’s grandma) on fb…We are at UVA. Truman’s cold turned very serious early afternoon. Twice they tho’t they’d lost him. After consulting w/ dr. Micah called G&W (a medical transport) to bring him to where his doctors are familiar with his disease. He’s on oxygen now, with c-pap. His little tummy still really goes up & down but not like it was. This sudden plunge came kinda sudden. Please continue to pray for Micah & Krista. It’s a hard time.

March 12, 2012 (Monday)
8:16 AM …Truman…during the night the doctors did chest x rays and found that Truman may have Pneumonia. They are now treating that. He seems to have stabilized in the night some and his breathing doesn’t seem as labored. I don’t know what Truman will be like when we take him off all the equipment. I am confident from talking to the doctors that if we hadn’t come to the hospital when we did that he wouldn’t be alive now. Pray that Krista and I will have wisdom on how far to go medically, and when it is time to just lay him in Jesus hands to take home.

2:50 PM …well, this is quite a journey! We are so thankful for all our friends and family that are lifting us up. It is humbling to know that so many are lifting us up in prayer! Some of you don’t even know us! Well, we are at a crossroads. There have been decisions that have been hard to make through this whole ordeal, but none that are quite to the degree that the decisions have been today. We have decided to keep Truman on his breathing assist for today and tonight. If there haven’t been any improvements by morning we are planning or releasing him to Jesus. Our prayer is that if it is Gods will for us to keep him here that there would be a clear sign during the night. The hardest thing would be if there was just a little improvement in the morning! Thanks so much for all your love and encouragement!

March 13, 2012
Truman Lane Heatwole ….went to be with Jesus a little before 11 this morning. We are sad for our loss but have complete peace! Truman also is at peace and I am sure he is using his energy to run around with our other two children and a few of his cousins! That is sweet to think about! Lots of love and thanks from us! Continue to pray for us as this is just the beginning to a very hard week!

Thanks so much for all the prayers and support! Funeral service is as follows:
The funeral will be taking place at HARRISONBURG MENNONITE on Friday night at 7pm. This is due to a wedding going on at our church on sat. Try to make sure people that want to come know this. Friday At 5 pm there will be a meal. The meal will be served from 5-6. This is open to everyone that wants to come. Krista and I will be available to talk to people during this time. The funeral service will follow at 7. We will have the burial on Saturday at 10am. This will be at DAYTON MENNONITE. This is also open to anyone that wants to come.

Jeannette Heatwole captured a neat picture of the sky this evening.  We are calling it “Truman’s sky”!

More pictures can be seen on Molly Whitmore’s blog  http://mollywhitmoreblog.com/2012/04/05/the-heatwoles-family/ .  Molly is a professional photographer who took awesome pictures of Truman and the Heatwole family several weeks before his passing.  You will truly be blessed.  Thanks, Molly!

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