|Alex, Elisa, and Evan
January 19, 2016 marked the 20th anniversary of our little boy's death. At times, it seems like a recent event. It also seems a lifetime ago.
It is strange to think that Alex never got to meet our last 3 children. Caitlin was born about a year after his death. Noah was born 3 years later, and our last little guy was born 9 years later. They have heard of him many times and seen his photos, of course, so they feel like they know him. But it is strange to think that they never actually met.
In a previous post (here), I shared about our son, Alex, and his health problems. Throughout his young life, he would take numerous trips by ambulance and even helicopter to the hospital. He had a long history of developing croup which would often quickly escalate to not being able to breathe. Besides cerebral palsy, he had another condition called tracheaomalacia which leads to tracheal collapse especially when increased airflow is needed. He had since underwent surgery to help with this condition. The surgeon felt the procedure had been a success. We had 9 months of no breathing emergencies and felt that maybe we were finally in the clear.
There had been one particular time before this surgery when we had almost lost Alex. After losing consciousness, he had been admitted to Blank Children's Hospital and rushed to Pediatric Intensive Care. He was having an especially hard time recovering from pneumonia. It was touch and go for Alex for a few days. At one point, he seemed to simply give up. It was clear the pediatric team did not know if he would make it through the day.
A few months later, we were at my mom and dad's home in Mississippi and he saw a photo of my aunt Loretta. He told my mom, "I've seen that lady." My mom told him that he couldn't have as she had passed away from Lou Gehrig's disease a year before. He replied, "I saw her at the hospital when I was very sick. Jesus was there with her and she had on a white, shiny robe and she smiled and said, "Hallelujah (or Glory to God - I can't remember which he said). We were amazed at this as he had not said anything about seeing her before. Seeing her photo seemed to have triggered that memory for him. We hadn't realized how close to death he had come.
January 18, 1996, was a cold and snowy day. The temperatures were projected to plummet that day and despite the previous 9 months of relative calm, I eyed Alex warily. When there was a drastic drop in temperature, he would often experience severe respiratory problems. (That night, the temperature did indeed drop by double digits.)
My mother-in-law happened to be there for a visit. I would be forever grateful that she had been there that day. Her presence allowed me a little more freedom to have fun with the kids. We all sat at the table and did some finger painting. Sometime that morning, I had to give Alex a little swat on his bottom for something he had said or done. I can't remember why exactly. But he scooted hastily down the hallway after that swat and crawled right out of his pants:)
Later that day, I remember being very annoyed at myself about my lack of preparation for supper. My brother-in-law, Chris, stopped over for awhile prompting us to do something a little unusual. He had brought his guitar and sang some worship songs. Looking back, that time together was a gift from God.
I wish I could say we did that all the time, but we didn't. It was an unusual event. Life was often so rigid during those years. Relaxing was almost unheard of. There was always a worry about Alex. A day could be so seemingly ordinary and then in the next instant, we could be standing in an emergency room watching a doctor intubating Alex.
I am thankful that night was different. After Chris sang some worship songs, we got the kids ready for bed. Dave remembers that Alex was sitting on his lap when he suddenly turned towards him and said, "I love you, Dad." Dave would later say that it struck him as unusual. It wasn't out of character for Alex to be affectionate, but it stood out to Dave because he had said it with such intensity.
A few days prior to this, Dave and I had been gone a couple of nights for a staff retreat with the ministry my husband worked with. When I got home and walked in the door, Alex looked at me and suddenly started to sob. I sat him in my lap while he cried uncontrollably for a few minutes. That, too, was unusual. I've looked back on that night and often wondered if somehow he knew that he wouldn't be with us long.
I also remember just prior to Alex's passing, I had been cleaning the house and suddenly felt the voice of the Lord say to me, "The house can wait. Go and play with the kids." I put my cleaning things down and went into the living room and played. I'm so thankful that God interrupted my plans that day.
Early on the morning of January 19, 1996, I woke up to the dreaded sound of Alex loudly struggling to breathe. It was pitch black outside. I don't think either Dave nor I ever really went into a deep sleep at any time during those years with Alex. I feel like I was always a little awake during the night, just in case he ran into some sort of difficulty with his breathing.
When I heard his gasps, I stumbled into his room and picked him up, calling out to Dave at the same time. Dave quickly began rescue breathing as I called 911. They had been to our home before and had mistakenly went into the Teen Challenge building which we lived behind. I remember telling them to please come around to the back of the building. I didn't want there to be any waste of time. There were deep snow drifts everywhere and I hoped they could make it to us quickly.
Everything seemed to be moving slowly, almost as if you are seeing events pass by your eyes in a detached sort of way. I pulled clothes on over my pajamas and put on shoes. I remember Alex was wearing his blue pajamas. Dave was working on him frantically and saying his name. Alex didn't seem to be responding. I could see the flashing ambulance lights through the window. We met the men on the sidewalk and they quickly placed Alex into the ambulance. I climbed into the front seat of the ambulance as Dave prepared to follow in the van. In some ways, I felt relief now. I had seen this happen many times before. We would stay in the hospital for several days until Alex had again recovered. I didn't know that this night would be different.
Somewhere around the Altoona exit, we pulled over and were met by a second ambulance. I remember a voice of the ER doctor over the intercom talking about administering epinephrine. The ambulance started again. I kept looking back to see Alex, but there were several people around him and I couldn't see him. I prayed and watched the road. It was deserted due to the weather and the icy conditions. We were nearing the hospital when I looked back again. Someone moved and I was suddenly able to see Alex. A man was over him doing chest compressions. His heart had never stopped before. I began to be filled with dread. I got out of the ambulance as they rushed past me with Alex into another room. I know I was walking, I know I was answering questions, I know I handed them an insurance card, but yet it was like I was watching myself do all these things. A chaplain came into the waiting room and began talking to me. I remember feeling slightly annoyed, to be honest. I didn't want to talk with her at that moment. I wanted to listen and hear what was going on. I could hear a lot of activity. I felt very alone and prayed as I waited for Dave to arrive. I knew that he would have to drive very slowly due to the weather conditions.
I asked the chaplain to please go and see what was happening. She did and came back to say that it didn't look good. I felt like I was swallowing a lot of air. My mind didn't seem to be able to register what she was saying. Dave came into the room. I don't really remember what we said to each other, if anything at all. I saw the men from the ambulance walk past our door. They didn't make eye contact. Their shoulders were slumped over. I stood up and walked out the door. I walked towards the room where I heard voices. I think Dave was with me as the doctor met us in the hallway. He put his hands out and said, "I'm so sorry. There is nothing more we can do."
I turned slightly and could see Alex on a gurney. I walked to his side and looked down upon his face. I remember that I gently closed his eyes.It is painful to write that detail, but that is something that I remember clearly doing. Even though I knew I was in a hospital room, I still felt as if I were watching someone else. I asked Dave if I were dreaming. I was clearly in shock.
A kind nurse told me that if I sat down, she would place him in my lap. Disconnecting the tubes, they placed his little body in my arms. He was warm and looked as if here were sleeping. I looked at his face and felt the weight of his body. The reality of it hadn't quite sunk in. Dave would later say that I asked him numerous times if we were dreaming.
In the midst of our grief and shock, I suddenly had a very keen awareness of what was happening in another place. In my mind, I could clearly see Alex standing in front of the gate of heaven with throngs of people watching him.It is important for you to know, Alex had never walked. Although he was more mobile that his twin sister Elisa, he too was bound to a wheelchair. In my quick vision, it was very quiet until he began to walk inside. Then the people began to cheer like you would hear in a large football stadium full of people. All of this happened so quickly and so quietly within my spirit. It was God showing me a little of what Alex was experiencing. He had closed his eyes in this life. Maybe he had seen me or Dave for just a moment. But when he opened them again, he was with Jesus. He was able to walk now and run. He no longer needed his wheelchair. There were no more limitations.
This vision was God's way of reaching down to me in that terrible moment in time, helping soften the pain as I held our son. In fact, I now understand that shock during grief is itself a gift to buffer the pain.
I can remember turning to Dave and asking, "Is this really happening? Is this real?" The surrealness of that moment can't be described. Just an hour before we had been in our beds. I had talked to Alex just a few short hours before that. I had kissed him goodnight and sang a little song with him. He had asked me the same question that he had asked me many times before, "Mom, what are we having for breakfast?" It didn't compute that I wouldn't see him again. It didn't make sense that he wouldn't be sitting in the kitchen having oatmeal for breakfast. How had this so suddenly happened?
I sat with Alex in my lap for quite a long time. It was dark when we arrived, but now daylight had come. The time came to give him to the nurse. A few moments later, our friend and boss from Teen Challenge, Warren Hunsberger, came into the room and brought hope as he prayed with us there. It seemed to bring clarity. The fogginess was still there, but his voice and words carried authority and were what we needed at that time.
We walked into the bright sunshine and got back into the van. We drove through that dazzling sunlight back to Colfax. I knew that our lives had been altered forever, yet as we passed other people, their lives were the same. They were driving to work or home. But we were going home to a different life.
In the next few days, we had to meet with the funeral home director, plan his funeral, his burial, what clothes he would wear. I hated every moment of that experience.
When all of this was behind us, when the funeral and burial were over, there remained no true normalcy. Everything was sort of the same, but not really.
We still had all of Elisa's (Alex's twin sister who also had cerebral palsy) needs to tend to. That was hard for me. I loved her, but wanted a break from the constant care so that I could grieve. But her care wasn't something that we could just stop doing. I also had her big brother Evan, who was just about to turn five and her little brother, Tyler, who was just three years old. I remember that he came into Alex's bedroom where I was sitting and said to me, "Mommy, you sad? I sad, too." That is a precious memory of him trying to help.
Over the next few days and even months, I stood in front of his closet and stared at his clothes. I smelled his clothes which comforted me. We don't often think about it, but everyone does have a scent that we recognize and that scent was a blessing. We left his shoes at the front door and never moved them that first year. It was almost as if he was still with us as long as his shoes were there.
Twenty years later, it sometimes feels as if we have lived two lives. One life as a family with Alex, and a whole other life and family without him.
When Caitlin was little, she was watching home movies with us of Alex. We later found her crying on her bed. Even though she had never met him, she missed him. She recognized the loss we had suffered in our family. She has a brother she has yet to meet and feels the loss in a very real way because he is a part of our story.
So, what do you do when one of your children is just suddenly gone?
All of the questions, pain, hurts have had to be left in the hands of the One I can trust. His kindness towards me has convinced me of His character. I don't understand His whole plan. Not now. But one day, I will.
In some ways, I feel like after that time, I took whatever hope I had and placed it on a shelf in a closet and slid it towards the back. From time to time, I will open the door and happen to see it. It is covered with dust now and I might even think about taking it out. But it seems best to leave it where it is.
It isn't the hope of heaven that I've left on the shelf. It's the shattered pieces of a hope that wasn't realized. All the hopes I had when I was carrying the twins...all the hopes I had for them to be well. It's so painful. After all this time, I still think there is a part of me that is unhealed.
Why did our twins have cerebral palsy? Why was Alex born only to die at the age of four? Why couldn't we have experienced normal, healthy twins? What would their lives have been like? What has been the point of it all? Why has there been so much pain and suffering?
I just don't know the answer to all those questions. It is like something I heard an older missionary say one day in chapel during Bible school. Their son had died years before and he had looked up into the sky with all the questions and pain, knowing God could have spared their son. He stood before all the students that day in chapel and looked up to heaven and cried "I don't know why God allowed my son to die; it's a mystery...but I'm not going to hell over a mystery." That is the bottom line. I may not understand, but I refuse to be bitter with God.
I love day to day life. I love ordinary days. But I also love celebrations to look forward to. It's probably why I love holidays so much.
One day I will walk into a place that I've never been or seen before. I will stand and try to take in all the beautiful sights before me. I will hear a familiar voice and turn to see his face. I will hear him say, "Mom!" again. It is a certainty. All of the pain will be gone as I'm reunited never to be separated again. It will be the ultimate celebration.
I've written my recollections of those last days to the best of my memory. I don't have a neat, tidy way of wrapping up the story. I guess it is still being written.
If you have suffered the loss of a child or any deep loss, I grieve with you. God can heal our deepest hurts. He longs for you to call to Him. He will answer you and He will come to you in the pain you are in right now.
"He heals the broken hearted and binds up their wounds." Psalms 147:3
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