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Hi! My name is Lauren, and I am the founder of Higgy Bears. Higgy Bears are special stuffed animal designed specifically for kids with scoliosis.
As a scoliosis patient myself, I know how hard this condition can be. I created Higgy Bears so every patient can have a little friend just like them to help them through their scoliosis journey.
This is my story.
May it inspire you to never give up.
I was thirteen. It was “that day” that would forever change the rest of my life. Gym class was interrupted so that a nurse could screen everyone for scoliosis, whatever that was. I went behind a screen, a note was sent home, and the next thing I knew I was getting my first X-ray. The doctor walked in, black and white pictures in hand, and confirmed the nurse’s findings. I had scoliosis. The doctor brushed it off, saying it was very common among young women, and that I would grow out of it. Nothing needed to be done. My fifteen minutes were up, and the doctor sent me on my way. I walked into the appointment a happy and confident thirteen year old girl. I walked out scared, let down, and most all, ashamed. I learned that I had scoliosis, and that there was absolutely nothing I could do about it. The doctor talked about degrees, rotation, and a significant rib hump, but I didn’t hear any of that. All I heard was “deformed.” From that day forward, I was different, and would forever feel very, very alone.
My back had never been discussed again after that day. Not a word. My “deformity” was on my mind every second of every day, but no one would know that. I spent every ounce of energy I had making sure no one could see “it.” I cried myself to sleep night after night, but I made sure no one would know that either. To say I was depressed, was an understatement.
Fast forward thirteen years. Best kept secret in the world! Not a soul had found out. It was never spoke of again, even within my family. Then one day, I came across an article talking about scoliosis surgery. What? Something could fix me and make me normal again? Where do I sign? Happiest. Day. Ever.
After meeting my amazing surgeon for the first time, I learned that surgery was not only an option, but a necessity at this point. Surgery was booked, and I was over the moon. All worries went out the window. I was going to be normal again! My thirteen year streak ended that day. I told everyone! After all, they were going to find out anyway. People probably thought, “Who is this crazy girl, who is actually excited about such a serious surgery?” Of course, they would have had no way of knowing the toll it had taken on me. To my surprise, every single person I told had the same response. “Oh, scoliosis, my daughter, son, niece, friend or girlfriend has that…” What?! There were other people out there like me? How was that possible? How were there so many people that had scoliosis, yet I had never met a single one in thirteen years? Then it hit me, they truly were just like me. They didn’t want anyone to know their “secret” either. That realization forever changed me, along with thousands of other patients all over the world. More to come on that later.
Surgery day came. Consent papers signed. “.01% chance of paralysis.” I didn’t care. I had a 99.99% chance to be normal again. Needle in. Time for a nap! I opened my eyes to an extremely frightened husband. I looked at him with the biggest smile on my face and said, “Is my back straight?” Radio silence. Then he finally said, “No honey, it’s not. There were complications.” He later explained that after my surgeon had drilled two rods and thirty screws into my spine, I lost all feeling in both of my legs. The surgical team woke me up during the procedure to see if I could wiggle my toes, and I could not. They tried everything they could to “get it back” as they called it, but after many attempts and eight hours under anesthesia, they had no choice but to remove all of the hardware that had just been drilled into me, close me up, and wait. God was definitely watching over me that day. After I woke up, my surgeon examined me. He happily reported that the paralysis had only been temporary, somehow. He didn’t have an explanation as to what happened. The first of many moments that would forever change the rest of my life.
Three days passed, and I was back in the operating room for a second surgery to insert the rods once again. This time with success. After spending two weeks in the hospital, it was time to head home. I spent the next month learning to walk again. To the door and back, then to the stop sign. One mile turned into two, and two into three. For the first time, I wasn’t in pain, and I was SO happy! I walked and walked and walked some more. Just because I could. Somewhat of a Forest Gump Moment. I was on cloud nine.
On the way to the park for my morning walk, that cloud quickly came crashing down. Right in front my house, a car hit me. Head on. I hadn’t been in a car accident in nearly ten years. Head on, two months after not one, but two major surgeries? Not very good timing to say the least. My screws literally came loose, and an emergency surgery had to be performed to keep my rods, my new spine, from breaking in two. Surgery number three came and went, but the pain never did. It was excruciating. How could this be happening?
My amazing husband and I spent the next two years on planes traveling the country seeing every specialist we could. They all said the same thing. More surgery. Surgery to drill two six-inch screws deep into my pelvis to fuse the last “normal” vertebrae I had. After enduring three major surgeries in a four month period, in my mind, a fourth was simply out of the question. I saw a total of eight doctors. They all said the same thing, but two opinions stood out.
Doctor number three explained how my future would unfold (as if he had a crystal ball.) After surgery number four on my back, my hips would then go bad, and would both need to be replaced. Then, both of my knees, and then I would need a wheelchair for the rest of my life.
Doctor number eight informed me that my pain would never, ever go away. Or, get any better. Ever. His only goal for me was to be able to get dressed each morning. Uplifting, right?
Don’t get me wrong. These doctors were not bad people. What they were saying was medically true. They just didn’t know me well enough to know how much fight I had in me.
After two years of searching for answers, the world had given up on me. I was put in the “permanently disabled” pile. I had been given a glimpse of happiness, and then it had been quickly yanked away. Permanently disabled? Wheelchair? I’m not even thirty. The depression came back worse than ever. Something told me to go see one last doctor. He said something very different to me than all the others. The exact thing that I needed to hear at that exact time. Sure, he agreed that I needed more surgery, but he didn’t spend his time talking about it. Instead, he just kept telling me over and over again, “Please stay with us a while longer, Lauren,” Clearly, I wasn’t doing such a great job of hiding how much all of this was affecting me. While I would have never done “that,” it touched me to my core that a complete stranger could care that much about me. Without knowing it, he gave me the strength I needed to keep fighting. And, I did.
Needless to say, I had some time on my hands to think. Out of all the things that had happened to me, one kept haunting me. Why did I have to feel so alone, for so long, when there were so many people out there that were just like me? Why did I have to feel like I was the only one? How can I keep other kids from feeling this way? And from this, Higgy Bears was born. He would be a friend where one didn’t exist. Even if a child didn’t know anyone else with scoliosis, they could still have a friend going through the same thing they were, just in bear form! A Higgy Bear! Have to wear a scoliosis brace? So does your Higgy Bear! Surgery? No problem! Higgy Bear has rods, too! Now, no one has to feel alone and cry themselves to sleep every night like I did.
Fast forward two years. Higgy Bear has made his way to every corner of the world.25,000 Higgy Bears to 150 countries to be exact. I have received thousands of pictures of Higgy Bears with children, and even more emails from parents telling me how much this little stuffed animal has made such a difference in their child’s life. Kids take Higgy Bear to the doctor’s office for that scary first appointment. To school, to use Higgy Bear as a teaching tool to explain to their class why they have to wear a back brace. Higgy Bear has even made his way to hospital beds, never leaving his friend’s side as they recovered from surgery. It was working! These kids didn’t feel alone, and I had pictures to prove it!
At this point, without a doubt, I knew that everything I had been through had all happened to me for a reason. It was all part of a greater plan. I had a purpose. A big one. But, I still had one major problem. This little thing called pain. It was so bad that most days, I struggled to even get out of bed. How in the world was I going to be able to help these kids? After all, I am permanently disabled now.
Well, God had one more trick up his sleeve. A friend told me of a physical therapist that I just had to see. And he wasn’t just any physical therapist. He was a doctor of physical therapy, a specialist, and one of the best in the state. I had already seen six others, what was one more?
After examining me, without hesitation, he said ten words I will never forget. “I can get rid of eighty percent of your pain.” My jaw hit the floor.
After explaining what the other doctors said, he told me that he didn’t agree with a word of it. If I worked hard, and trusted him, I would eventually get better. He gave me something no one else could. Hope. I became unstoppable.
Four years have passed since that first appointment. I am happy to report that after a lot of hard work, I can finally say that I am better. While I still have my struggles, I am now able to work a full day in the Higgy Bear Factory! I switched Higgy Bears over to a nonprofit in 2019 and am so excited where it has brought me. I have been able to connect with kids and parents through ScoliZooms, and am having my first convention, Higgy-Con in July! I am extremely excited about!
I hope to one day get enough donations to cover the cost of Higgy Bears, and donate them to patients in children’s hospitals across the country. My dream has always been for every patient to be given a Higgy Bear when they first get their brace, and my dreams are in the process of coming true!
To be continued….