There Were No Abnormalities With My Pregnancy – This Is Our Story

His name is Stetson James 💛!

And we’re blessed to be his momma and daddy.

We are a proud Special Needs Family and this is our story.

Cody and I met and starting dating in high school. We’ve been together ever since. I was getting ready to graduate from nursing school and Cody was a traveling construction worker when we got pregnant. We were so so excited!

I actually had a great pregnancy. Some morning sickness in the beginning but I loved being pregnant.

We had all of our routine ultrasounds and even went to one of those 3D ultrasound places TWICE because we loved seeing our little baby!

I had my 20 week anatomy scan and we were not told of any abnormalities or complications. We had no idea that Stetson would have any complications until he was born. It was a huge shock because we were so unprepared.

Stetson was born with a neurological disorder called Holoprosencephaly (HPE for short). HPE is is an abnormality in brain development where the brain doesn’t properly divide into the right and left hemisphere. Stetson’s is only partially divided.

There are many different symptoms that can come along with HPE. Each HPE child is unique. Stetson’s HPE causes him to have seizures (epilepsy), difficulty regulating his temperature, and causes overall low muscle tone, called Hypotonia.

Because of his hypotonia, Stetson needs a feeding tube to eat, and a tracheostomy & ventilator to help him breathe. His other equipment includes a suction machine so we can manually suction the mucous out of his lungs, a pulse oximeter to show us his heart rate and oxygen levels at all times, a nebulizer to give his breathing treatments, and a chest percussion therapy vest that will shake his lungs to keep them nice and open.

We call all his machines his cool toys!

Our days consist of physical therapy, trach and tube cleaning, and care, lots of stretches/exercises, breathing treatments, tube feedings, anti-seizure medications, playing outside, and TONS of love, snuggles, kisses, and joy.

Stetson was first diagnosed with HPE at 3 days old. He spent 4 months in the NICU and PICU. His doctors told us that we most likely wouldn’t see his 1st birthday. But he recently turned FOUR YEARS old!!! He continues to defy the odds every day. He makes his own rules and we just follow his lead.

Despite all these challenges, Stetson continues to smile. If there’s a mountain, he proves that it can be moved. He braves every storm, and he shines by his own light.

Cody and I got married on 6/29/2019 and Stetson was Cody’s Best Little Man! Our wedding was even more special with Stetson there to be apart of it!

He brings so much joy to everyone who knows him. He is truly the best thing to ever happen to us and we wouldn’t change him for the world. We are his voice, because he is our heart.

Special needs parents are on a unique journey that most cannot understand. I didn’t understand in the beginning. When Stetson was first diagnosed, I was angry, heartbroken, and cared. I grieved. I grieved the child I imagined having. I grieved the life we planned.

It’s NORMAL and it’s all a part of the process. After I processed the diagnosis in my own way, I dove headfirst into learning the child I was given. I studied his diagnosis, I asked questions, I wanted to be as hands-on as possible.

I found the strength to accept that this is our new normal and it’s a beautiful life. We were given a special child for a reason. And I know that reason is to give him all the love he deserves, advocate for him, and give him a beautiful and fulfilling life. Because he gives us that in return.

Embrace the unique way your child is blooming. Let them climb their mountains at their own pace. All we can do is cheer them on and love them unconditionally along the journey.

“They whispered in his ear, you’re not strong enough to withstand the storm. He whispered back, I AM the storm!”.

Follow Chelsea, Stetson and their family on Instagram @chelseatwasden.