There were four. Eleven, three, her thirty-one, him twenty-eight. They found each other by unusual circumstances some might say, but they knew that this life was created for them to experience together. When the latest addition was announced joy, confidence, anticipation, and hope for their family of five grew with each passing month. Exactly twenty weeks and her gelled, swelling stomach confirmed, “It’s a boy!” The longing only grew. Two daughters. Sisters. A son. A brother. He was just what was needed. Wanted. Longed for.
Rooms were rearranged and she – the youngest at the moment – made room for her new brother to move in. She only understood so much, but she knew that change was coming and surely – by mommy and daddy’s faces – it was bound to be good. She – eleven – in a perpetual state of discovery and self-realization knew that she’d make the best big sister required. She had her fears … hesitancies, but she knew that an added member of the family would only make it merrier. And, so she clung to her mother tight, encouraging her, calming her natural uncertainties and waited with the rest in great expectation.
He didn’t know just what it’d mean to him to hear the nurse exclaim, “it’s a boy”, but nevertheless his heart beat faster with each passing day. He found himself working harder, walking lighter and doing whatever was necessary to prep their modest house for a newborn. His newborn. His son.
She worked tirelessly, ankles swollen, back sore, body temperature raised. She was made to create life so she felt at home feeling the life inside of her grow with each passing day. She was closer to him then anyone else. He swirled and spun, kicked and flipped. He kept her awake at night, and slept soundly during the day as she carried on with her motherly duties. But, it was all a labor of love and she loved him more than anyone else. It was only natural. It was her voice … her smell … her rhythm that he knew best.
December 9, 1983 … as the sun rose high in the sky he made his grand appearance to the world. He was small, but wonderfully beautiful. Two eyes, two ears, a nose and rose-colored lips. Cheeks for kissing and arms and legs existing to make him the most flawless boy they had ever seen. She held his freshly clean and blanket-wrapped body close to her chest. He peered into his son’s eyes in an overwhelming state of euphoria. They had created him. Their son.
What they couldn’t see is what turned their joy around in a matter of minutes. His skin. At first pink and peach-filled suddenly was turning blue. Panic rose as nurses and doctors scooped him up and left the room. She and he were left in shock. Their celebration had quickly been interrupted. What was it? Where was he? Their son was needed to carry on the merriment.
Due to labor she was left bed-ridden while he travelled west with his brand-new child to a larger hospital. His heart, although beating proudly, had not fully formed in utero. He was sick. But they remained hopeful. Not even six pounds of body and yet he struck them as a fighter.
To help him process he wrote on a scrap paper, in handwriting barely legible that he had returned home to retrieve his son’s mommy and bring her to his side. He knew he needed her. She needed him. They all needed each other. No one could get him to drink out of his bottle. He was having nothing of it. Until his daddy was the one holding it that is. And, with confidence and a gentle touch he placed it in his son’s mouth and he peacefully drank. Such a little thing, yet significant enough to make an impact on one’s life. He was his. And, although he knew her, he knew his daddy, too.
With His written plan and the hands of the doctors their son was finally carried into their home two weeks from his birth. Again, unusual circumstances, yet they felt at peace finally sleeping again under one roof. He nor she slept much at first, with worry that his heart would give out at any moment. And, yet he slept – heart beating again and again, again and again.
The doctors exclaimed with confidence that with every passing year it would only draw them closer to advances in medicine. The first heart transplant on a child so small had never been performed. Yet, they prayed and clung to one another and lived life as best as they knew how. With one another they strived to enjoy the simple things. Knowing that their family of five could do it as long as they were together.
And, so months passed. His first birthday celebrated. More doctor’s appointments, trips to the local hospitals and larger one west of them, surgeries and more success. Nurses became attached, cheering him on and thrilled to see him leave, knowing that he was returning home.
Birthday number two came to their family of five. They celebrated and were thankful for knowing that they were together. Still a unit. He was a fighter yes, his heart working rapidly day in, day out. A cold to a normal child is a hassle. To him it was life threatening. Yet through each sickness that came he fought and his heart continued on.
With days, although not many, his heart, beating as rapidly as needed, was weak and tired. He needed medical advances that were not being made quickly enough.
She – now five – restlessly slept on a made-up bed on the floor next to her mommy and daddy so that they could tend to the flu that had taken up residence in her body. As would often happen, he got it, too and they knew that they would have to fight hard to beat yet another germ, virus, bug.
The doctor asked her, after confirming the flu existing in him, if she’d feel more comfortable admitting him to the hospital. She thought not long and knew that her unsettledness existed for a reason. And, so they headed to the local children’s hospital to check-in for the night. He stayed home – her five and sick, her thirteen and doing everything possible to help all the while trying to make sense of it all.
They found themselves separated, yet again. None of them liked it, but they knew that all had to do what needed to be done to get through. And, they knew that she and he would be home the next day and again there would be five.
She lay, unable to sleep in the stiff hospital bed. The city lights streaming through the blinds. He was sicker than ever and to no surprise was dealing with a body that would not let him sleep. She did what only a mother would know to do and picked his sick and limp body out of the bed he was in and tucked him tight to her. It was her voice … her smell … her rhythm that he knew best. And, she knew that it was what he needed. They lay there together – as close as they were just a few years before and although his breathing heavy he finally rested. He knew he was finally where he needed to be. And, so his heart. It finally rested, too. Lying next to her, warmed by her body, he let out a breath and never drew another.
His soul readily left the hospital room. To a place where pain and sickness do not exist. A place made just for him. His days had been numbered and his time on Earth had come to a close. It was now time for him to live a life free of hurt. A life of freedom, joy, peace and true rest now existed. A place where his heart was not broken, but instead healed and whole. A heart that beat effortlessly. Yes, he had finally arrived home. Free and true, whole and new.
She screamed for help, they rushed him yet again to another room and frantically begged his heart to beat again. Surely it was not finished. He got their quicker then ever and held her frantic, panicked body. They cried and prayed and waited. He came in to deliver the news. There was nothing they could do.
Would you like to hold your son one last time?
And, so they did. They held his lifeless, soulless body and tried to make sense of it all. It was only the flu. This was not expected. Yes, he only had half a heart, but this was much too soon. They hadn’t prepared and yet there they were. Tears flooding the room while they mourned the face that would never again laugh, or sneeze, or even cry. Legs that would never again walk, arms that would never hug, a mouth that would never utter another word. A heart that would never inadequately beat again on Earth.
She found confusion going from the middle child to the baby again.
She felt burdened by the sudden deficit.
She felt her heart also struggling to beat on it’s own.
He felt a pain he never knew existed.
Yet, they drew closer to one another and knew that even with their unusual circumstances there was still a life to be lived. Together. And, so they did. And, do. And, his memory. His heart. It still beats on. Just in a way that they never saw on Earth. And, so in his honor they are pursuing a heart that beats like his ... free and true, whole and new.
Last week while in Knoxville ... My sister had just gone off to bed as something sparked my mom's memory. She went to go grab our baby box. Just a plastic rubbermaid-type thing that holds different items of ours from when we were little. After sorting through my stuff, then my sister's we came upon Jonathan's. I am embarrassed to admit that I have never heard the full story of my baby brother's life and death. Bits and pieces ... he has never been a secret ... but, never from beginning to end. As we poured over the items my mom had saved, the random notes my dad had written and of course the photos we wept. It was hard, but necessary. It helped me understand a bit more of just who our family is. Just who I am. My story. He was a part. Still is. And, although he was only around for a little over two years he left an impression that will never fade. The above was written that same night. It was my way of processing.
I never intended to share it here, but then after speaking to my mom and then my sister I ... we felt as if everyone who reads this blog will be able to relate. We've all experienced some type of loss and as my sister wrote to me in an email last week ... "Happy, sad, joyful, tragic...that's what makes us who we are today."