This is my story of Jared Nicholas Patton.

My husband has just finished writing a book “Jared’s Journey”. It should be published around Christmas…Jared’s favorite time of year!

Up until now, I have had great difficulty expressing my grief, explaining to others what has happened to me since Jared has passed.

My hope is that this photo “journey” with Jared and me will not only help me by sharing Jared’s story from my perspective but will also give

others a way to see into my heart and why I will never be the same after spending three precious years with this beautiful baby boy,

Jared.

Katherine Stowe, Jared’s Nina

Jared was born: October 6th, 2006Shaken: Sometime during the night of November 20th, 2006

Admitted to MCV Hospital in Richmond, Virginia: November 21st, 2006Surgery Performed to give Jared a Trach and Feeding Tube: January 23rd, 2007

• After this surgery, while he was still in the ICU, his mom (my daughter) had a hard time going from Hampton to Richmond to see her baby. She felt she really needed time with her two year old son after being away from him for the first two months that Jared was first in the hospital.

• This is when I started commuting on a regular basis to Richmond.

• One day the doctors asked me to please move in with Jared for a while. They were afraid that he may never be well enough to come home. So, I moved in!

• That was about the time period that I told my husband that I was bringing this baby home to live with me or us…He could decide if it was too much for him. I could accept that. But regardless, I was bringing that baby home. And the only thing I knew to do to care for him was to simply love him. God would take care of the rest. And He did!

• The nursing staff at MCV and the respiratory staff at Pediatric Connection taught me everything I would need to know to bring Jared home. I made notes and drew diagrams of how to hook-up and service his equipment. I learned how to change his trach and feeding tube. I learned about his meds. I learned how to feed him. I learned so much from the wonderful individuals who were so patient and kind to me. Then before I could bring him home, they tested me on everything I had been taught!

• Five and a half weeks and one surgery later, Jared came home. That was April 10th, 2007. It was a beautiful sunny day. And we started our Journey.

• After this surgery, while he was still in the ICU, his mom (my daughter) had a hard time going from Hampton to Richmond to see her baby. She felt she really needed time with her two year old son after being away from him for the first two months that Jared was first in the hospital.

• This is when I started commuting on a regular basis to Richmond.

• One day the doctors asked me to please move in with Jared for a while. They were afraid that he may never be well enough to come home. So, I moved in!

• That was about the time period that I told my husband that I was bringing this baby home to live with me or us…He could decide if it was too much for him. I could accept that. But regardless, I was bringing that baby home. And the only thing I knew to do to care for him was to simply love him. God would take care of the rest. And He did!

• The nursing staff at MCV and the respiratory staff at Pediatric Connection taught me everything I would need to know to bring Jared home. I made notes and drew diagrams of how to hook-up and service his equipment. I learned how to change his trach and feeding tube. I learned about his meds. I learned how to feed him. I learned so much from the wonderful individuals who were so patient and kind to me. Then before I could bring him home, they tested me on everything I had been taught!

• Five and a half weeks and one surgery later, Jared came home. That was April 10th, 2007. It was a beautiful sunny day. And we started our Journey.

Homecoming with NinaAfter Jared’s birth, he spent a short time in the hospital due to breathing issues. Then he came home. This is the first time we met.

After my daughter, her two year old son, and Jared left, I told Steve “I wanted to keep that baby.” His response was typical, “Yes, he is a cutie.”“No!” I said. “I really wanted to keep that baby!”

Little did I know, that someday he would be mine.

A couple of weeks later, we went to visit Jared and his mommy and brother.

Shortly after this photo captured the love between Jared and me, he was shaken.

Many people take photos while their babies are in critical condition after being shaken. We did not do this. I did not want to see photos of Jared like that. I was so afraid that he would die and that would be his last photo.

So, we waited until they had moved him out to the floor before taking any photos. The greatest challenge was to get him to open his eyes. And when he did, they would usually just float around randomly. I spent a lot of time, right next to his face, asking him to look at me.

*Jared was in the ICU for over 2 months. During that time, he was hooked up to a ventilator, had to have a shunt in his skull to drain the blood from his brain, and was in a drug induced coma to keep him perfectly still. When we would visit, it was difficult to find a way to touch him with all the tubes and monitors that over took his little body.

After several unsuccessful attempts to wean him from the ventilator, after his brain had stopped bleeding, Jared endured surgery to be given a trach so he could breath and a feeding tube so he could be fed.

Jared leaves MCV after 4 ½ months….He comes home to live with Nina and Grandpa Steve!

On April 10th, 2007, we drove from Richmond to Hampton with Jared. He was finally coming home. We were followed by Monica, a respiratory specialist. When we arrived home, Monica patiently helped me set up all of Jared’s special equipment. Then she left us alone with our baby boy for the first time.The next day, Grandpa Steve and Jared shared their first adventure. They toured our back yard, sat on the “Forrest Gump” bench and listened to the birds sing. It was a glorious day!

Jared meets Austin…Soul mates for sure!

Jared and his half brother, Austin, immediately bonded. When Jared was born, he looked just like Austin (but they do not have the same Daddy). As Jared grew, Austin became one of his favorite sources of entertainment.

Jared’s first “Road Trip”, aka “Doctor’s Visit”!This was the first time Jared and I ventured out (with a nurse to accompany us) after his homecoming.He did not like his car seat a first.If you look at his head, you can see how it was misshapen due to the draining of blood right after his injury. That would later go away.

Jared is really “at home” now!

After a lot of work, Jared started to overcome some of the maladies associated with being a shaken baby. Due to the severe brain damage, he was light sensitive, touch sensitive, and sound sensitive. So, for quite some time it was a challenge to have him become comfortable in a normal, everyday environment. You will notice in the top left photo, he was required to periodically wear had splints. This was to hopefully correct the “clinched fist” that were a normal reaction for him. Later on you will see how this improved!

We worked really hard at treating Jared like a “normal” baby boy. He was such a ham! He thrived on attention and stimulation. There were very few moments in his life that he was left alone. If Jared was awake and not having to have feedings or breathing treatments, someone was usually holding him, reading to him, watching a movie with him, watching a baseball game with him………..He was the center of my world.

Initially they told us that Jared would be “blind”. The area of the brain that receives the signal to “see” was destroyed. This I refused to accept! So, I purchased everything that I could get my hands on that had the potential of capturing his attention. Gradually, his eyesight improved. The photo on the left shows his lazy eye. That little eye took longer to gain control of movement. But eventually it did! The doctors were, well, they were simply shocked by the improvement. Although, Jared did suffer from cortical visual impairment. There were times, usually due to break through seizures, that his ability to see would diminish. And if there were too many florescent lights, his eyes would “short circuit.” He really be came a fan of baseball caps when we went to doctor and hospital appointments.

Nina and her boy, Jared!

There is really not much else to say here! We were so in love!

This is Jared at his best! He could control his arms and legs. He could reach for toys, although holding on to a toy was a challenge. And for quite some time, he was mesmerized by his own reflection. He knew he was just too cute!

Guy Time!

Jared knew when he was hanging out with his Grandpa Steve that the rules had changed. Well, there were no rules, just FUN, FUN, FUN!!!

Jared sports an American Flag polo shirt for his 1st 4th of July celebration….this is cousin Liz teaching him how to stick out his tongue. What a touching moment….those two were goofy together!

A quiet moment with Grandpa Steve. Can you feel the love?

2007

Happy 1st Birthday!!!What a wonderful day! Jared was doing so well physically , mentally, and emotionally. We knew we were witnessing a miracle everyday.

Near the end of his first birthday party, Jared just needed a Nina hug!

This would be the one thing that would see us both through many struggles.

Jared and Nina’s First Halloween together!

Check out the Itsy, Bitsy Spider shirt! Also, take a look at those opened hands. (No more hand splints for this boy!) But my favorite part of this photo is the feet. How I love those feet!

These are great pics to show how Jared just loved to hang out and be with his family. Liz, his cousin, recently said to me that when she looked at these photos she forgot that he even had a trach.

Love, Cuddles and then a Nap! Life does not get any better than this!

Jared’s First Christmas At Home!

Shortly after Thanksgiving, Jared had his first break through seizure. He bounced back quickly. But he did require a hospital stay to get the seizures under control and he lost some weight. But on Christmas morning, he was thrilled to meet one of his hero’s, Winnie the Pooh. And Pooh Bear was bigger than him. His amazement is shown on that sweet face of his!

Feeling so much

stronger…It’s PLAY TIME!

When Jared was at his best, many days were spent just “hanging out” together…Nina, Jared & Grandpa Steve! These were our best moments.

During this time, we had opted to not have a nurse. It was important to me that Jared spent as much one on one time with me, in hopes that this consistency would enable him to thrive.

Our Life – At It’s Best

Our First Easter Celebration….2008The first Easter that Jared was home, he was still trying to adjust to hisnew environment. So there was little celebration. At that time, keeping

things quiet was our goal.But this Easter was very different! Friends and relatives came over to hunt

eggs. And Jared got a bunny…As Grandpa Steve would describe as “theselfish ole bunny rabbit that won’t even share this carrot with us!” Jared

loved when his Grandpa Steve would play the rabbit game with him!

Jared’s Fine Motor Skills Are Improving!!!

But he will not display his skills for the occupational therapist. For somereason when she is around he will do nothing. Then when she leaves, hedoes exactly what she was trying to teach him! Eventually, she decidesthat Jared will probably do just as well working with us. She doesn’t come back.

Ah, those beautiful hands!

This beautiful painting was given to me by my wonderful husband, Steve.He commissioned a local artist to paint this from photographs. She had never met Jared or me. During the process, she confessed to Having to stop painting at times to simply cry.

Mother’sDay2008

Jared had just come home from a hospital stay. He was a very sick little boy. Early in the morning after writing the above caption, Jared’s shoulders rose up. We witnessed this on the monitor in the kitchen. Steve and I both dashed to his room fearing the worst. Was he having a seizure? What was going on? Well, he simply rolled over. The only time in his entire life that he rolled over. And we were able to capture this extremely special, spiritual moment.

“Tonight as I sit with you sleeping in my arms, the smell of the pseudomonas and the new anti-biotic for it oozes from the sweat on your little head. This is not how my baby smells. My baby smells sweet, like the lotion and powder that I loving put on your skin and little butt. But not tonight. Things are changing again. Just like the doctors told us they would.”

Alice, Our Dear Friend, Baptizes Jared.

With Jared’s precarious health conditions, Grandpa Steve really wanted Jared to be baptized. So, our friend, who is an Ordained Minister, came to our home. Jared was baptized on our back deck in an American Indian/Christian Service.As for me, well let’s just say I was already certain that this little boy was already an angel just visiting Earth!

Special Moment… “Miss Patti” gives Jared a haircut!

Playtime with Rabbit & Pooh. Oh, let me sing you a song! Jared could never make a sound when he sang or talked, but that did not stop him. We told him that only people with “special ears” were able to hear him.

A kiss from Becca. She & Jared are the same age.

NAPTIME!!

!

Jared Has Rallied!!! He is so strong and playful…Maybe the doctors are wrong.

So, every day I wake up and keep believing in miracles. I pray for and visualize Jared living a long, beautiful life. And in retrospect, he did.

A Quiet Moment with “Puppy Brinkley”One of Jared’s very favorite movies was “You’ve Got Mail” with Tom Hanks and Meg Ryan. The golden retriever in the film is named Brinkley.A few months after Jared crossed-over, we got a puppy. Our sweet little cock-a-poo is named….You guessed it! Brinkley.

Scooter Trash! 4th of July, 2008

Jared and Grandpa Steve brave the stifling heat to hang out by the Harley for a photo op!

Night Shift!

Just Chillin’ With Pooh!

Check out those gorgeous legs!

Jared’s 2nd Birthday – Celebrated with Pooh and Tigger, and lots of friends!Jared had not been feeling well and my vote was “No Party”, just a quiet celebration. But Grandpa Steve was not having it! His boy was going to have a party. And it was quiet some party!Pictured with Jared is his very good friend, Gabrielle. He sure had a crush on her!

Looks like these two are up to something!

Always fun with “Miss Maryann”! The “dog” in the photo is able to move and make real doggie sounds. Jared was unable to have a pet, so when Grandpa Steve saw this dog, it took about three minutes for him to get one for his boy.This was Jared’s 2nd “Puppy Brinkley”

Santa (aka Michael McCarthy!) Makes A Surprise Visit To Jared’s House

Knowing that Jared was unable to visit public places unless absolutely necessary (due to his risk of infection), “Miss Maryann” could not let Christmas pass without Jared experiencing the joy of a visit with Santa.Thank you Maryann & Michael. This is TRULY one of our most treasured memories!

Jared & Nina Listening to the “Christmas House”

The Christmas House would recite “The Night Before Christmas”. As the story was told, different windows of the house would light up. This was a favorite Christmas activity in 2008. We would prop up Jared with pillows on the living room floor and he would listen to the story over, and over, and over, and over…….while we ate dinner in the adjoining room. We would diplomatically take turns leaving the dinner table to push the button to repeat the story. Oh, how I wish I could spend just one more moment like this with my little man.

How quickly things could change for our sweet baby…

Right before Christmas, Jared became ill. He had a short visit in the hospital and was soon home. But on Christmas Day, it was a struggle for him to be up. After briefly checking out his Santa goodies, he slept most of the day. How were we to know this would be our last Christmas Day together……..The tears slide down my face as I write this.

Austin is Good Medicine for Jared!

Several days after Christmas, Austin came to visit and have his Christmas with us. One of his gifts was a remote controlled helicopter. Jared’s “belly laughter” was induced by Austin’s helicopter crashing near us as we sat on the couch. I don’t know what made the boys laugh the most, the helicopter crashing or Grandpa Steve fretting that “THAT THING could hit the baby…Be Careful!” The boys found his concern a matter of humor! True brothers!!!

Jared must endure many hospital stays….but there is so much comfort in having your trusted friend, Tigger, with you. And Nina with a fresh tube of Strawberry Skittles Chap Stick!

The Glow of Jared’s Love for Life…It really didn’t seem to matter what Jared was doing, there was always a glow about him. If you were with him for very long, you could feel the great energy of this little boy. I know that he changed many people. I know that he changed me. I just never let myself imagine a day without Jared. And I am glad of that now, because we made the best of everyday. I miss that about my life today. I don’t think I will ever be able to be in that place again, at least not here on earth.

Jared & His “Baby”

A Loving Moment With Cousin Becky

Jared Meets A New Baby

“Grandpa Steve, Come Smell Me! I Just Had a Bath!.......When Jared first came home, he could not tolerate a tub bath. Being submerged into water was too much for him. He was extremely touch sensitive. It took almost a year before he was able to happily take “tubby baths”. But once he became comfortable, it was one of his favorite things to do. When I would bathe him, he would “yell” for his Grandpa Steve to come smell him. He knew he smelled delicious!

Jared gets ready to take a bath…He thinks he’s the Karate Kid! The respiratory techs at Pediatric Connection kept this photo on their desk. He was quite the celebrity.

We had many meaningful conversations together. Not everyone could “hear” Jared, but I could.

The hospital visits start to become routine. There always seemed to be something new that would give us a challenge…

But we always seem to get through them okay. See, we had each other. That was all either one of us needed when the times got tough. Now I wonder how to make through the most normal of days without my little man. I miss him so…

We try desperately to make the best of every moment…

Jared no longer regains his strength after seizures and infections. He is starting to have ever increasing medical and neurological challenges. The only way to cope with this, is to keep life as “normal” as possible for him. Each holiday, each day, each moment takes on new meaning. Grandpa Steve and I wrap our baby boy in love. We pray for the best, not knowing what the “best” is.

Tests, tests, and more test.Jared’s breakthrough seizures are being to rule his life. The doctors have tweaked his meds to avail. Now we are starting to run tests to see if they can come up with anything new to do. There really is not anything concrete to make changes to. As his condition worsens, new drugs are added, old drugs are reduce. It is now we play the waiting game. What will work? Will the side effects be worse than the actual seizures. We are playing a waiting game.

Yet we struggle to keep a “normal” life for Jared. Sadly sometimes it means just keeping him comfortable. Unusual for me, but I have grown weary…and afraid.

Sometimes Jared is just so tired…But Grandpa Steve is always there to give him a hug and carry him wherever he needs to go. As time goes on, Jared just doesn’t have much energy. His best moments are when it is just Jared and Nina and Grandpa Steve. We spend most of our time sitting on the couch…Just being together. This is where the three of us find peace…Together.

Jared has a way of just never giving up!He’s tired. He is in pain. He is having a hard time tolerating his feedings. His respiratory condition is not good. But he just wants to be a little boy.

Early on the morning of October 1st, 2009, before the nurse arrives, before the day is filled with meds and breathing treatments and feedings, Jared and I sit on the couch. I show him a box of crayons that I recently purchased. They are large and easy to use. Perfect for him. He holds one in his hand, with my help. We have no paper so we draw on the crayon package. Later that day, Miss Maryann, his physical therapist comes for his weekly visit. We show her our artwork from that morning. With that, we are inspired.

We carefully position Jared in his little seat which has a tray. I get out the coloring book that I purchased with the crayons. Of course, it is Winnie the Pooh and Tigger. With help from two ladies who love him the most, Jared colors. One picture for Nina and Grandpa Steve (Shown above – And it is still on our frig today!) and one picture for his Miss Maryann. This will be the only time that Jared colors. I am so grateful for this special day.

October 6th, 2009 – Jared’s 3rd Birthday!

Miss Maryann is with us today for the first round of birthday toys! What a treat for Jared to be able to celebrate with his Miss Maryann. He is thrilled with the new Tiggers and Pooh. And is especially proud of his new hat. When I look at the “hat” picture, I just want to kiss that sweet, sweet face! How I miss that face!

So many people came to celebrate with Jared!

Jared and Nina and Grandpa Steve celebrate Jared’s 3rd Birthday.

The joy of this day is now bittersweet. We did not know that this would be Jared’s last birthday with us.

The day after these photos were taken, Jared stopped lifting his arms. Not long after, he stopped moving his legs. Then a fear I had never felt came when the skin under his arms and behind his

knees started to breakdown. I was terrified that my precious baby was going to suffer a painful passing from this world into the

next.

OUR MAGIC MOMENT…

Jared & Grandpa Steve find great comfort just being

together. This is truly the power of love.

Our Last Family Photograph…

It’s Thanksgiving. Jared has been unable to move his arms and legs for awhile now. There is pain when we get him out of his bed. He spends his time cradled against me or lying in his crib. He has lost interest in interacting with other people. But Teeny, Steve’s Daughter, has come for a visit. When it is time for her to leave, she gives us all our good-bye kisses. She leans in to kiss Jared. Miraculously, he raises up and smiles to kiss her. At first we feel disbelief. Then we know we have witnessed something quite profound. It was his farewell kiss for his Teeny.

One of Jared’s last wishes was to have a cowboy hat!Grandpa Steve searched for the better part of a day tofind his boy a hat!

Late November 2009…Jared is getting tired. I know we don’t have much time left.

My vow to you is to take the very best care of you that I can. And when it is time for you to go, I can’t even begin to imagine how much I will miss you. I will be lost. I have no idea what I will do with myself. But in spite of how I will feel, I know that you are going to a place where there is no more pain, no more medicine, no more needles, no more fighting for your next breath. You will go to a place of peace and beauty. And you will be with my friends, Edie and Bill and Maw Piper. They will watch over you until I can get there. And I know that I will join you in this happy place. I know it with all my heart and soul. That is the gift that God has so recently given to me.

This was the last photo taken of Our Jared…He was becoming very weak. We knew we did not have a lot of time left with our precious baby.

Grandpa Steve started telling Jared during his night time prayers “If you are tired and you need to let go, it’s okay. Grandpa Steve will take care of Nina, and Nina will take care of Grandpa Steve. A couple of weeks later, Jared let go.

AND TODAY WE SAY…….GOODBYE…….DECEMBER 11TH, 2009

*It’s Friday…The sun is shining. Today is the last day that Jared’s nurse will be with us. She is going to a new job. The past two weeks have been a blur. I have completed my Christmas shopping because when a new nurse starts on Monday, I will be unable to leave her alone with Jared for a while. She’ll need to learn from me what to do to ensure Jared’s comfort and safety.*Jared’s respiratory therapist, Monica, has come for her monthly visit. She is the same therapist who escorted us home from MCV on April 10th, 2007. Today is her last day with Pediatric Connection. She is starting a new job, too. She shares with me a secret. When she and Debbie (another therapist) were training me at MCV, they would often leave our sessions and cry. Why? Because they did not think that Jared would ever leave that hospital. As Monica readies to leave, Grandpa Steve comes over to the couch where Jared and I are sitting with his nurse. We are watching the Christmas tree. Grandpa Steve gives us both a kiss and is off to pick up a check from a client and then a quick stop at the bank. He’ll be back soon.*Monica leaves. The house is quiet. The nurse and I chat softly while Jared is cradled on my lap. His head is tucked under my chin and nestled into my neck, as usual. The Christmas tree lights twinkle. Jared has a couple of funny little hick-ups. He is very still. I say to him, “Buddy, we better go to your room and check you out on the monitor.” I carry him to his room. I lay him in his bed and hook-up the monitor…………There are flat lines. He’s gone………..His heart has simply stopped beating.

There are so many more words that I could use to describe the rest of this day. But I can’t. So, I will simply say that this is the day that my heart broke .

OUR ANGEL – WE ARE MISSING YOU SO…….CHRISTMAS 2009

JARED NICHOLAS PATTON…….FOREVER IN OUR HEARTS…….NINA & GRANDPA STEVE

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