The Special Needs Roller Coaster
The special needs roller coaster wasn’t guest blogger Katie Espinoza’s ride of choice. But she, her husband, and their baby climbed on in October of 2017. Katie’s found a way to make the ride easier for other parents too. I hope you enjoy this story from one of my former fourth grade students!
As a mother you only ever hope the best for your children. You never hope for a special needs roller coaster. My ride began when I was 27-years-old and in the military. I was the only woman in the Best Warrior Competition, placing 7th out of 15. About a week after this, I found out I was going to be a mom for the first time. My husband-to-be and I weren’t expecting this bundle of joy, but we embraced every bit of it. At our 20 week ultrasound we were excited to see if we were going to have a boy or girl. After my ultrasound they took us into a room and said the doctor wanted to talk to us. She told us our son would be born with a heart condition called Hypoplastic Left Heart Syndrome.
Our lives stood still. We left the doctor’s office with tears running down our faces. I felt as though I was on a roller coaster. The wind whipping through my hair, twirling and flicking as I climbed higher and higher. I reached the top, and my fears emerge as I looked over the edge knowing that was no going back now. My stomach flipped and soared high inside of you until gravity lunges it back down. I was jolting every which way. Should I scream? Should I laugh? Should I cry?
My husband and I took the remainder of that day off and rode the special needs roller coaster. We cried into each other’s arms until no more tears could leave our bodies.
A few days later the cardiologist told us that this defect meant that our son would only have half of his heart. Our baby boy would be taken from us immediately after he was born to be hooked up to tubes and monitors. He gave us the choice of terminating the pregnancy. My first thought was to yell at him. Once I calmed down a bit, the rational side of me understood why he would offer that option to people. And then like the whiplash of the special needs roller coaster hit me all over again. It dawned on me that God planned all of this. He chose us to be parents to a special needs child. Some parents aren’t able to. Not because they aren’t capable, just where their lives are at that time. I am not saying we agree with termination, but once you are hit with news of a special needs child, all of that judgement goes away.
We were blessed in our journey to be able to take care of Elijah when he was born in October of 2017. So far, he’s overcome 3 open heart surgeries with 1 more down the road and a heart transplant at some point is likely. Our life has been full of monitors, beeps, alarms, checking breathing in the night, checking pulse ox and capillary refills. It has also been full of laughter, fun, swings and slides, dirt piles and vacations.
We promised Elijah from day one that heart defect or not we would not make him live in a bubble, even though he is susceptible to illness. We want him to see the world and live as normally as possible. He’ss doing well and is the orneriest spitfire you will ever meet. We say his stubborn side is what has kept him alive so far. His third birthday is in October and we can’t wait to celebrate it and many more with him.
Along this journey we came across a Mended Heart Bear© to be exact. It was made by a company called Bummer Bears©. Elijah loves this bear, because it has a zipper with a heart that is stitched in the middle. I kept up with their website and Facebook page throughout the next year or two. Next thing we saw was that Bummer Bears was going into hibernation. I knew immediately that I had to purchase the business. A year later, I became the proud owner of Bummer Bears© to help other children and families on the special needs roller coaster.
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Hi, my name is Katie Espinoza. I wear many hats in life: I’m a chef, a chauffeur aka “Mom Taxi”, a kisser of boo boos, a cheerleader in the stands, a maid, a laundromat, a master of the French braid, a dishwasher, a sippy cup filler, the general contractor on any project at our house, a veteran, a business owner, a military wife to a supportive husband, and the best thing in the world…. a mother to 3 beautiful stepdaughters, Elijah, and his little sister.
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Our latest construction project is teaching me that building is a slow process, whether a house is going up or a heart is being edified.
I want to live with the confidence of a five-year-old. Thanks to the word of God and my sweet grandson, I know how to do it.