Lots of you have followed the journey of our family and extended family with SMA, an unforgiving, incurable, fatal disease until… someday. When our two children were born in 1977 and 1982 there was not even a remote star of hope on the horizon. In 2011 and 2012 there was no cure for Truman and Ariel, only hope that… someday. Someday. Someday. And somewhere between then and now, someday has burst into being. Someday is now a star of hope. Someday is now a glimpse of reality.
On July 16, 2015, little Jase Marius, brother to Ariel, was born. From all appearances he was a healthy baby, however, one week later blood test revealed the hidden truth. It was a devastating blow to our prayers and hopes. Little Jase had SMA. You can read more of that part of the story on my blog post Heatwole Family Reunion-2015.
Let me tell you about someday. Type 1 SMA babies can not roll over, sit up, walk, or kick. They lose their ability to eat and breathe. They usually do not see their first birthday.
Pictures are worth a million words….just take a look at this miracle!
This past week little Jase’s mom wrote on her facebook page….
To the “Cloud of Witnesses” around Jase’s life:
Life is busy and full these days, but we think often of all the people who pray for us and are grateful! We want to show you what God has been doing:
Jase rolls front to back. He rolls back to front. He stands holding his own weight. He has two teeth and eats solid food. He sits! Yes, the baby diagnosed with SMA Type 1 SITS! By himself!! (Miracle alert!!) There are lots of smiles and exclamations of amazement in the exam room t…hese days.
The drug study continues… Jase received the fifth dose this past Tuesday. Jesus said to pray, “give us our daily bread…” and I’ve often thought of the drug in this light (though it’s not given every day – hooray for that!) I see it as provision for his strength. And where that ends there’s, “Come, do! On earth as it is in heaven.” And when mystery remains, “underneath are the everlasting arms.” So we’re doing well. (Grace!!)
Our praise is to God the Lord who created us, who arms us with strength and who reveals secrets to the sons of man. In spite of the fact that if WE were choosing, SMA would not be a chapter in our story, we’re grateful for front row seats on breakthrough that doctors are saying they hardly dreamed was possible.
Do you know how thrilling it is for this mommy to have a “normal” conversation with the pediatrician at a well visit?! You can imagine, I’m sure. We LOVE this happy, funny, growing little boy!
There are still many unknowns. What will happen at the end of two years when the clinical trial is done? Right now they are sailing on unchartered medical waters.
Somday is today. Today we give God thanks for His goodness and mercy in Jase’s life, all praise and honor to Him alone. We thank God that He has allowed “someday” to be today. Today. Today! This mom never dreamed in 1977 when I wept over the casket of my little Karla, that I would see someday.
Life has been busy and full this summer and I think all the big major events have now taken place! This weekend was our Heatwole family gathering here in Powhatan. Each of us siblings (Me, Rich, Evelyn and Ed) take turns hosting. Every four years it is my turn.
My siblings/spouses and parents arrived on Friday evening. We enjoyed supper on the deck and as a side benefit watched six turkeys grazing in the field behind the house.
On Saturday the rest of the gang arrived. There were 40 present with several not able to attend. The kids had a great time playing in the wading pool and playing kick ball and corn-hole. The adults were content to sit and talk and catch up on what is happening in our families and life. I didn’t get very many pictures this year. (I’m not sure what happened to me-the camera buff that I am!)
In trying to pump up the soccer ball with more air the needle broke off in the valve. Obe tried his best but could not get it out.
The “pirate” boy (Ryan Hostetter) collided with another boy a day or so early and took a hard blow to the eye.
We had lots of good food including smoked beef brisket.
Filling the wading pool with water.
Cheryl Yoder and Jase, the newest member of the family.
Let me tell you about Jase…..
Jase was born 4 weeks ago. Remember our journey two years ago with little Ariel who had SMA? This is her little brother and he has been diagnosed with the same disease. This is devastating news not only for Jeremy and Cheryl but also for the whole family and a host of friends and loved ones who love and care for the Yoders.
Jeremy and Cheryl shared with the family where they are at in their journey with Jase and there is exciting developments in research to find a cure for SMA. Forty years ago when our two children died, there was no research, no diagnostic test, no hope. It was a death sentence with no survivors. Then came Truman in 2011 and Ariel in 2012. At that time there was a blood test to reveal the dreaded diagnosis but still no exciting medical research to embrace. I have been keeping a journal as we get information on Jase’s journey.
Family Connections: To those who are reading this and do not know the family connection…. Rich is my brother and his wife is Marj. Cheryl is their daughter and Jase is Rich and Marj’s grandson. The disease first showed up in our family when Gene and I lost 2 children with Werdnig-Hoffman disease, now called SMA: Karla in 1978 and Greg in 1982. Gene has a sister who also had a child with the disease. Years went by and then came little Truman, son of Micah and Krista Heatwole. Micah is Rich and Marj’s son. The disease had once again reared it’s ugly head. Jase.
Jeremy and Cheryl, Max, Bo and Jase
July 16, 2015: Cheryl
He’s here! Jase Marius arrived yesterday – all 9 lb 9.5 oz of him! – arrived yesterday at 3:36pm. Jase means “healer”. Marius, a take off of Mark in honor of Jeremy’s Dad, means “manly”. So grateful for this gift!
July 25, 2015
Richard called to tell us that the blood test has come back and little Jase has tested positive for SMA.
July 26, 2015
Richard & Marj sent the following note to family and friends: Jase’s blood test results came on Fri. His DNA shows the same gene abnormality as Ariel’s. He tests positive for SMA. This is an unexpected blow. Thanks for your prayers for us and ours.
August 4, 2015: Sharing our journey… from Cheryl
We’ve already introduced Jase Marius here. We’re enjoying him immensely!
We learned on Friday the 24th, half of Jase’s lifetime ago, that he is missing both copies of the SMN1 gene – just like Ariel – and is expected to be affected with SMA. In spite of fully knowing our “odds”, we were not prepared for this report. It was extremely disappointing to say the least. Many of you have been praying for our family. You carried us through the journey with Ariel and anticipated this baby (Jase) with us. Here we are in a vulnerable, heart-breaking position and find that we’re able to stand, over our heads in grace. God is with us. You can rejoice in answered prayer!
We maintain that now is the time to trust and to savor life for it is truly a gift. Look at these pictures – can you acknowledge with us that our God is beautiful and kind?
Yesterday we took Jase to the same neurologist who saw Ariel. I was not super excited about the appointment. Jase is not showing symptoms of SMA…”Why are we even going? Just to have him scrutinized and look for the problem we’re praying not to see?” But I did have some questions and it can be difficult to land an appointment, so when they had an opening yesterday we took it.
There’s a lot I could say, but to get more quickly to the point, Jeremy and I – and Jase, but he isn’t concerned one hoot about it. We left the appointment hearts throbbing with hope, kind of floored into silence, with big silly grins on our faces. We had just received really good news for Jase!
There is a lot of research going on right now regarding SMA. Up to this point it’s been, “We’re learning really exciting things, but there’s nothing we can do yet.” That was our experience with Ariel. But yesterday the doctor, for the first time in his career was able to say to someone, “There is a promising drug that is in clinical trials. There is a trial open right now. Your son looks like a perfect candidate.” That someone was us!
There is hope that this therapy could prevent the onset of SMA symptoms. There are no guarantees – this is a clinical trial. Eligible infants are those who have been diagnosed but are not yet symptomatic (which is uncommon). That’s Jase. So! We are extremely excited and grateful. We have blindly placed our hope in our strong God and it is exhilarating to feel like we very likely are beginning to glimpse His answer.
God’s fingerprints are all over the timing of test results, appointments, the clinical trial itself…. We rejoice and worship and continue to trust and pray. The medical people are in a flurry to get things moving so that Jase can enter the trial before he develops symptoms. My mommy heart has urged, “hurry, HURRY!” My heart that has been tucked pretty hard under the Father’s arm says, “He’s got this one. You don’t know how, but everything is going to be okay.”
We will probably be traveling to Chicago this week, yet, for initial screening and possibly the first treatment if everything clears. Probably. Possibly. If. That’s exactly how sure we are about what’s next. Please continue to pray. And be sure to direct all praise to God!
August 5, 2015: A note from Marj
I’m assuming ya’ll have seen the latest developments concerning Jase on FB. We’re about to leave for church, but I wanted to let you know that Jeremy, Cheryl & Jase are flying to Chicago this evening. Jase’s first app’t is at 8:00 tomorrow morning. They’ll be doing a screening to make sure he meets all the qualifications for this experimental test. Jeremys were told to go prepared to stay until Tues. Max & Bo are at Jeremy’s folks in DE. Thank you so much for your interest and your prayers. We wonder what God is up to, what may come of this; what His plan is for our little Jase. It’s pretty exciting, and a bit surreal.
August 6, 2015: A note from Marj
I just got off the phone with Cheryl. They’ve had a big day, are weary and ready for a good night of sleep. But pleased and excited with Jase’s performance today. Like Jeremy said, “he passed his tests in flying colors.” They drew blood for a chemistry panel, checked his urine for whatever, did an EKG, an EMG (shock to his funny bone to test his response – which will frequently show SMA before any other symptoms. His strength is good, they see no manifestations of SMA, and unless something shows up in the blood panel tomorrow they plan to give him his first injection on Mon. They’ll return to Baltimore on Tues.
Just for interest sake, they were picked up at their home last pm. Rode in a shiny black Suburban to the airport. Plane left over an hour late so it was 11:00 when they arrived in Chicago. They were met by a man holding a placard with Cheryl’s name on, were escorted by him to another shiny black SUV to the motel. And were at the hospital for Jase’s appointment at 8:00 this morning. Now after the blood test tomorrow, far as they know, they’ve got the rest of the weekend to wait out (while test reports come back) in the big city. I guess it’s good they’re more used to that than I am. I think I’d be inclined to stay put in my room so I wouldn’t get lost!
Praise the Lord for whatever His plan is and how He is working it out. Thank Him for the strength that Jase has today, for this opportunity, for hope. Pray that they’ll all get a good night of sleep tonight.
August 16: Pat
We do not know the future implications of the clinical testing for Jase. This opportunity is brand new and Jase is the third infant in the world to be admitted into the program since the trial opened two weeks ago. Jase will receive a series of 10 shots over the next 2-1/2 years. At this point Jase is symptom free even though blood test have revealed a grim diagnosis. Each healthy person has a SMA1 and SMA2 gene. Jase is missing SMA1 and has 2 of SMA2. Our family carries the most acute form of the disease which means the symptoms start showing at or soon after birth and their life expectancy is only 1-2 years. There are so many questions. Will God use this as a miracle cure or will it just prolong the evidence of symptoms? What happens at the end of the trial? What are the side effects? Can it really be possible that Jase could live a symptom free life? Why has this disease hit our family so many times? What is the genetic path in our family line?
Our family gathered around Rich, Marj and all their children and prayed for them. This is not just their burden, it affects us all. Micah and Krista are expecting in November and we stand with them as they wait and anticipate the birth of their little one. We value life. We know that God is the creator of all life and we do not take health for granted. In the midst of great sorrow and disappointment we have found the peace, mercy and love in our Heavenly Father in whom we can trust.
Jase means healer. We ask God for the desire of our heart, that He will heal little Jase. We know that good can come from all of our earthly struggles and trials. If Jase is not healed, we pray that his young life will at least help grant healing to thousands and thousands of other children in the future as the medical world searches for a cure. We truly desire for God to receive glory and honor regardless of the outcome.
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.
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)
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.
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.
Here she is celebrating her one-year birthday-December 26, 2013.
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.
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.
Gene and I were asked to share at the funeral how Truman touched our lives. I share what we wrote as it gives another insight into the life of little Truman.
Note to clarify our script for those who aren’t acquainted with the family: Rich (my brother) and Marj Heatwole are the parents of Micah. Micah and Krista are the parents of little Truman Lane.
Pat…
Several days after Truman was born, Richard called. He said, “We’re concerned about Truman, he’s not moving. I thought you might like to know.” A sword pierced my heart. Memories came flooding back; I remembered the journey we were called to walk, not once but twice. I began praying for Micah, Krista and Lincoln knowing deep in my spirit that they were probably called to walk the same path as Gene and I.
Gene…
So many times in our lives we ask why do bad things happen to good people and it has been discussed who knows how often. When a trial like this comes into a young family’s life it is heartbreaking experience. We also know that when we do go through it, we can look back and there are many goods things to be thankful for. Thirty-three years ago a radiologist at St. Mary Hospital read an x- ray one night of a baby with a collapsed lung and pneumonia, not knowing that it was his niece, our daughter Karla. What a comfort it was when Uncle John Reed appeared in emergency room to console and counsel us before we made the trip to MCV (Medical College of VA). And there was Uncle John again several years later when our 2nd son Greg coded in the hospital and then revived to come home. We always appreciated Uncle John & Aunt Carolyn and Aunt Ruth because they were the Harrisonburg family connection in Richmond with us close by in Powhatan.
I tell this story because little did we know that when we took a vacation in 2007 and attended Micah & Krista’s wedding in Alabama that Pat & I would forge such a profound connection. Numerous times Micah & Krista have made trips to Powhatan just to visit, help us on moving day in our store, or to buy chickens & other stuff that they was looking for. We have had some neat times on their trips to Powhatan.
Little did we know that this friendship was preparing us to share the same sorrow. The beauty of this is that because of our experiences we have been able to share and console Micah & Krista from our hearts as they have made this journey.
Pat…
One day in January I came to Harrisonburg and spent the day with Krista. This was very special and I will always remember and treasure our talk that day, we did some laughing and we did some crying. I don’t think there was much we didn’t cover. We talked about our struggle in understanding healing, dying and death. We talked about decisions, feelings and coping. We talked about this devastating disease (Werdnig- Hoffman Disease) and what they could expect-I could only share from my heart what we had experienced.
Truman was fussy. He was beginning to have some sucking problems and was struggling to get enough to eat. He was hungry, but he had got himself all worked up and exerted too much energy crying that he didn’t have the strength to eat. Finally I said to him, “Truman, stop it.” I had hold of his little hand and started talking to him. I told him he was going to die soon but he would get to see Jesus. We talked about his little siblings (Krista’s has had two miscarriages-I believe there has actually been 5 miscarriages in this Heatwole family) that he would get to see his Grandpa Truman. His little eyes were red and puffy but for a few minutes he cooed and chuckled as I talked. Sometime we wonder… what do babies know? Do they feel fear? Does he wonder what is happening to him? Was he frustrated that he could not turn his head and kick his feet? Did he feel trapped inside a body that would not function?
On Monday Micah called and invited us to come to Charlottesville to say goodbye to Truman. We were so humbled and honored to be included in this special time. We will never forget standing in his room by his crib watching him struggle so hard to breathe and live. They had inserted an oxygen tube forcing air into his lungs-which were partially collapsed. His diaphragm was doing all the breathing which made his belly expand with each breathe. I took his little hand in mine, pressed his fingers around mine. He still had a little strength in his fingers has he held on to my finger. As I talked to him, I again talked about heaven, Grandpa Truman and his siblings and cousins waiting for him there. Several times he opened his eyes for a few seconds, ever so slightly-you could see his eye move as if he was trying to see me and then they would close. Truman was still with us.
As Micah, Krista, Rich, Marj, Gene and I gathered around his bed we prayed for little Truman, calling on our Heavenly Father in his mercy to gently come and take him home. It was a holy moment.
Times like this cause us to touch eternity. Somehow I could envision heaven all astir. Heaven was preparing for little Truman’s eminent arrival. Jesus himself said, “I go to prepare a place for you” (John 14:2). You prepare a place when you anticipate an arrival! Jesus was getting Truman’s mansion ready. The Psalmist said, “Precious to the Lord is the death of his saints” (Psalms 116:15). It struck me in such a new way how this little family was on God’s mind-right now. God was very aware of what was happening here on earth in the hospital room that night. God was getting ready, ready to give the order to bring little Truman home. Had Grandpa Truman and other family members been alerted to head towards the gate for the grand welcome home party? Was the room filled with angels just waiting for the order to carry his spirit home? I glanced around the room just in case I saw one! It felt like we were standing on the threshold of heaven in the presence of God.
Gene…
God was intertwining our lives for this heartbreaking time. We understand the heartache, the pain, the uncertainty, the doubts, the fears that they are experiencing now. We also know that because of all the love that surrounds them and God’s grace, they can have hope for the future. There will be dark days ahead, but brighter ones will come and time is a great healer.
Pat…
Truman was a little trooper. He fought the fight and gave it everything he had. Sin and death won and he is gone. But God has the final victory-Truman lives again. Truman has touched us once again with eternity. He lived 4 short months but his life was complete. He can not come back to us but we can go to him.
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!
I am a country gal who enjoys writing, gardening, baking and my family. My husband and I own a retail feed store and it keeps us active and busy. We love living in the country and on our beef farm. We retail natural, Angus, dry-aged beef in our store and a local "natural" store.
My writings, called "From A Grandma's Perspective" are mostly inspired from our five delightful grandchildren. These along with "Life Perspective" can read on our web page at www.hffinc.com under the "Who We Are" tab.
By the way, I love hearing from people who read my blog!!!
