I met him for the first time 6 years ago. Actually I heard him before I ever saw him in person. He yelled as if to say, “Look out World, here I come!”
My first impression of him was that he looked like a Ferengi. He had a top heavy head with a small body. The only hair I could see was the tiny tufted of hair at the back of his neck. The rest of his head was completely bald. Due to the pressure on his head, his eyes were almost squeezed shut, his mouth was tiny, but he had a grip that squeezed for all he was worth.
When he was first placed into my arms, I didn’t know what to expect. His head was heavy and his body was feather light. His head lay on my left arm, his tiny body propped up with pillows. This became a normal position for him whenever he was in someone’s arm.
I loved him from the moment I laid eyes on him as he was being wheeled out of the Operating room. My heart exploded with fear, and love, and uncertainty. We didn’t know if we would ever be able to hold him outside the walls of the hospital. But when he was placed into the car bed so that we could take him home, we were relieved that he wouldn’t leave this world in the NICU. Getting there was hard. we signed what felt like a million papers, most were to send us home with him on hospice, but the hardest one was the DNR. If you’ve ever signed a DNR for a loved one, Imagine signing one on a 3 day old baby. It’s one of the worst feelings I have ever experienced.
When he went under the knife at 3 weeks, my stress level was about as high as it could be. He came out of surgery a different child. Even his face had changed. His personality began to shine through. And that bald head he was sporting, disappeared in two weeks, leaving him with a head full of thick, blond hair. I could finally see his beautiful blue eyes full on.
We promised him that we would give him the quality of life he deserved and that quantity didn’t matter. We let him experience the world. Even when we thought we were losing him, we continued to love him. But he continued to live and grow and amaze everyone around him. Every accomplishment was celebrated. Things that came easily for normal children took hard work for him, But he never quit.
He never knew a stranger. He loved everyone, His smile could light up the room he was in and his laughter was contagious. He loved to figure out how things worked and if they had wheels, all the better. And if it was a train, all the better.
He loved his Daddy and his Pappy, but his little sister was his best friend. When he started school, his little sister cried so hard because he wasn’t there.
On the day we had to take him to the hospital, he wanted to sit on his daddy’s chair. He had been sick for weeks, and his little ribs were poking out all over his body. He couldn’t walk and his smile was gone, but he tried so hard. He started having a seizure and we could not get him to come out of it.
When the time came to finally let him go, it was the hardest thing we had to do. Saying goodbye to the little boy that had first stolen our hearts and left us understanding what love meant, didn’t seem possible. 5 years didn’t seem long enough. But the most amazing part of his death was that he continued to help others.
We miss our boy. We never thought that we would be saying goodbye so soon, but we did. We have our good days and our bad days, but We have a God who continues to love us and take care of us.
6 years ago I met him for the first time and didn’t know that my life would never be the same again. I wouldn’t change knowing him even with the knowledge that one day there would be an empty place in my heart.
Happy Birthday In Heaven, Little Boy.