Shaun Peter was loved from the moment we found out about
him. I knew he was to do amazing things. Shaun was only alive because I had a
miscarriage earlier in the year, otherwise I would not have been able to be
pregnant with him. I knew he would be special. His life was like a beautiful
piece of music, orchestrated by the hand of God to touch lives and is still
being written as his memory goes on. He is my inspiration in hard times and his
short life has taught me so much about my faith, children, relationships and
myself. He has given me a new passion for life and helping others.
Shaun was
born an 8 lb. 3 oz. 21-inch bundle of joy. He was a good baby and from the
moment he was born, had his older brothers wrapped around his finger. He
smiled, cooed, played with his brothers, and waved at everyone he met. He had a joy and peace that was indescribable. All was going well until Christmas 2011, when
my sister visited with her daughter who was doing a whole lot more than Shaun. She
was only 3 weeks older than him. That concerned me and so we made our first
trip to the doctor about development issues. After visiting the Kluge Center,
my worst fears started to come to life. My baby boy was behind, and we needed
to see a geneticist to cover our bases because of our family history. My
husband and I lost our first born, Sarah, at 11 months. She had a disease that
ravaged her body around 6 months old and despite all the doctors’ work, were
not able to put their finger on the diagnosis. They thought a Mitochondrial
disease was the problem, but it was so new in 2003 they were unable to give us
a clear understanding or diagnosis. After a lot of genetic counseling and
testing, they couldn’t pinpoint anything in us that would say we would have
other affected children. We were told it probably wouldn’t happen again and so
we should continue pursuing a family. Two healthy babies later, my concerns
were on the back burner but then red flags started to fly.
Shaun in
the summer after his first birthday (which was a major milestone in my mind
since we lost his sister before hers) was diagnosed failure to thrive. This was
crushing to me as I was trying my best to nurse him as much as possible and
feed him a special diet to get him to gain weight. We still did not have a
diagnosis but knew he needed help getting his nutrition since his tongue
wouldn’t move food correctly and he couldn’t get enough calories. He got a
button placed which would become his nutritional lifeline. The staff at UVA was
amazing through it all. The nurses on the floor loved him; the doctors were
knowledgeable and working for us. It was comforting knowing he was in good
hands and that maybe we would be able to overcome this disease this time.
He was in and out of the hospital
over the next couple of months, but we were happy and he was doing ok. In
January, I noticed him doing something new. It looked like seizures to me. He
was having a tough time keeping his feeds down and wasn’t protecting his airway
well. We got admitted and sent to the PICU. Devastation but Fight. They watched
him and did a 24-hour EEG to see if there was any seizure activity that they could
find. None. Thank God. But Shaun wasn’t protecting his airway so it was decided
he would need a tracheostomy. Scary, but I could do it to help my baby. We went
home a week later but after an MRI, we knew that Shaun had lost 20% of his
brain matter. This was the same as his sister, Sarah. I knew then we had less
than 5 months. We also got a diagnosis.
Mitochondrial DNA Depletion Syndrome.
Shaun
despite all he was going through continued to be a joy to our family. He went
to his brother’s games and practices, was my dance partner at our church’s
square dance, worked hard with all his therapies, even walked in a walker for a
while. We went on a vacation to Florida,
family outings, walks, and tried to keep life as normal as possible. He was a
fighter and a Champion. May 2, as I was
going into wake Shaun for his meds and to see our Hospice nurse, fear struck
me. He started a seizure and it didn’t stop for hours. Grand mal is what the
doctors called it. An ambulance ride, helicopter ride to UVA and medication
later, they were able to quiet his brain in a medical coma. Status Epilepticus.
We waited to see if he would be able to come back from this. I told him he
would have to show me on a grand scale when the fight was over because his
mommy was ready to fight for him forever. May 9th we tried to reduce
the medication and the seizures returned. We knew this was it. Bring the family
in to say goodbye. On May 11, 2013,
Shaun celebrated his real birthday, born into eternity in Heaven. Though my
arms ache for him every day, I know one day I will see him again and he will
not be crippled by this disease that ravaged his little body. It really was
peaceful and beautiful surrounded by family, friends, music and love. This is
only a small part of his rock star story.
So what was
Shaun’s mission? Shaun was put here to teach us what love is~ true
unconditional passionate love. The love God has for each one of us. He taught me
selflessness, compassion, and how to be a better person. He was and is still a
light~ shining every heart to Jesus. He shared this joy with everyone he met,
every soul his touched. He showed me Jesus in a real way. I hope that his love,
the love he taught and shared will shine on in and through the days, weeks and
years to come. “Greater love has no one
than this, than to lay down one’s life for us. And we also ought to lay down
our lives for the brethren.” 1 John 3:16.
The people we met along the way
were God-inspired appointments. Each nurse, doctor, teacher, therapist, friend,
or stranger seemed to have a purpose in Shaun’s story. We had a lot of them. I
learned so much through these people, and I hope they gained something from
knowing us. I also wrote a blog while going through all this. It has been
amazing the stories shared and people all over the world touched through my
little man. I wanted others to know that when it seemed like they were alone,
there were others who had been there or were working through it with them. I
want information about this rare disorder to be brought to light and for a cure
to be found. I want these children, on a special mission, to be remembered and
celebrated, for it is them that did the hard work, even though we are the ones
left behind with broken hearts. They wouldn’t want us to be sad, but instead be
inspired.
Shaun is my motivation. A month
after he lost his battle to this disease, I ran my first 5k mud race wearing my
Super-Shaun outfit. He is my go. If he could put up with so much, then I could
put one foot in front of the other to race for him and to tell his story. This
year I plan on running a Rugar race, and a half marathon in his memory. I
challenge you today, to find something that was meaningful to your loved one,
something you can share with others. I am also making weighted blankets. Shaun
loved his and it provided such comfort and peace at the hospital. I have made
some to give to the PICU kids in Shaun’s memory as a random act of kindness.
Our children were a joy in our lives, why not share that joy when others feel
so alone? Shaun’s message to the world is to be a light, inspiration, and
hope-pointing people to Jesus. We do not have to live in despair; we can live
in hope and peace. Shaun was a little light in a dark world. I plan to keep his
light shining and to compose his musical balled to completion.
Look for Shaun's story to continue because it is still inspiring.
