Porter. Also known as: P-man, Porter Pie, Porter the Snorter, Porta-Potty, Dee, Pubba. You don’t come into this family without inheriting some nicknames, and Porter had many. What a light in our life this boy was! He fought a good fight until the end. We are so proud of everything he was.

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Porter Jacob Jeppson was born July 4, 2013. Brittany was very upset that Jake convinced her to get in a swimsuit at thirty-eight weeks pregnant. In a public swimming pool, her water broke. Jake and Britt rushed to the hospital with nothing but their swimsuits on. Porter came fast into this world, eager to get here. Brittany almost missed her window for an epidural. Our 7.13-pound boy came into this world while fireworks went off out the window, almost as if heaven was celebrating the arrival of this boy.

As the months went by, Porter was not meeting milestones. After a few doctor visits, it was confirmed he was fine and there was nothing to worry about. By six months, Brittany and Jake were getting more concerned. Porter had an MRI and that started his long medical journey. By his first birthday, Porter had undergone many tests, but all came back normal. Brittany and Jake fought hard to find a diagnosis for Porter. Twenty-four specialists later and after traveling the country for answers, still there were no answers. Soon Porter’s team was formed, as we called it, P’s Dream Team. Physical therapy, occupational therapy, feeding therapy, vision therapy, even play therapy were all part of Porter’s routine. Brittany and Jake felt like they needed therapy for all the therapy they were going to!

Porter’s physical limitations became more apparent as he got older. He could not lift his head, could not roll, had no fine or gross motor skills, was cortically blind, and could not talk. Eventually, he received a feeding tube, and later a wheelchair.

“Families Are Forever”

When Porter was around two years old, Brittany and Jake decided something needed to change. They were heartbroken and in tears constantly. The world kept telling them everything their son was not. That was going to change. They sent off some balloons into the sky to symbolize letting go. Letting go of what they thought Porter’s life was going to be, and accepting him for what he was. That balloon launch has since symbolized so much as a family. Just as the balloons flew, our family started fly. We found so much happiness in what Porter already was.

Porter was our cuddle buddy. There was nothing he loved more than cuddling and having someone talk to him. He loved to have his hand held and his legs massaged. We always stated Porter lived in a musical. His love of music ran deep and he was constantly listening to some type of music. Bubble Guppies was the first tv show Porter reacted to and loved. It was his favorite. He later really loved any movie with a lot of music: Trolls, Coco Melon, Moana. Porter loved the song “Jingle Bells.” Jake would beat box and Brittany would rap “Jingle Bells.” That was his favorite rendition. Most nights you would find Brittany playing the ukulele or Jake playing the guitar in Porter’s room at night singing to him. Reese and Jordan loved to sing to Porter too.

Porter loved water, but it had to be warm. Make a Wish Foundation gifted Porter a hot tub a few years ago. It has been one of Porter’s favorite activities to do as a family. Porter also loved to listen to Jazz games. One of Jake’s favorite times was to sit with Porter and watch the Jazz game together. Porter would listen to the whole game.

Porter was a gentle, calm boy. He did not like loud noises, and you would often have to redirect him from crying by singing “Twinkle, Twinkle Little Star.” Porter’s smile and laugh were contagious. We will miss it so much.

At six years old, Porter finally received a diagnosis. It was something that Brittany and Jake had searched for so long. Porter had an extremely rare genetic deletion that doctors knew very little about. There are no known cases with his exact genetic deletion. Porter was truly one of a kind. Jake and Britt laughed as they walked out of the doctor appointment. Something that they had fought for, for so long, didn’t matter anymore. They had learned to love and accept Porter as he was. A diagnosis didn’t change any of that.

Brittany and Jake feel their house has been quiet the last few days without Porter, yet he never spoke a word. It shows how much of a presence he made in their lives.

The last several weeks, Porter’s health made a rapid decline. His body had fought hard and held on for so long, but it was finally time for him to go. We are proud of all that he was. He touched many lives, and especially ours as a family. He taught us that the simple things in life are what matter. He taught us that love is a very pure and simple thing. In his room has always hung a sign that says BE BRAVE. Porter, we will try and be brave as we carry on. We love and miss you. We know heaven celebrated as you were wrapped in the arms of the Savior as you came home. Say hi to Cool Paps (Porter’s Grandpa) and play on every playground heaven has to offer. We love you. Until we meet again.