Posts Tagged ‘Spinal Muscular Atrophy Type I’

How Truman Touched Our Lives

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.

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.

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.

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.

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.

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.

We love you, Micah and Krista