Embracing Linleigh's Journey

EMBRACING LINLEIGH'S  JOURNEY

Please join us in surrounding Linleigh's family with love and support and embrace the journey with them by donating to help fund a van and home renovations. This amazing family in so many ways is just like any other, but they also face additional expenses and challenges due their oldest daughter, Linleigh, having severe spastic quadriplegic Cerebral Palsy. So many people love Linleigh and her family and ask, “How can we help?” I finally convinced Andi, Linleigh's mom, to tell her story and share what current obstacles they face. 

Linleigh is a happy, fun loving, adventurous, adorable, hardworking, ornery, and determined six year old with an infectious smile who has Cerebral Palsy, and this is her story.  I, Linleigh's mom, Andi, am blessed to be along for the ride and share her journey with you.
Some of you may have seen my recent Facebook post venting about the denied insurance coverage for Linleigh’s stander. After countless phone calls, hours of frustration, and a few more months of waiting Linleigh was finally given the opportunity to stand!
 While fighting for Linleigh's basics needs is nothing new, this battle had me up in arms. But it’s truly just a drop in the bucket of life lately, a distraction from the everyday stress. The truth is that life with Linleigh is and has been changing, and as she grows we are constantly faced with new challenges. I’ve known this day was coming but it snuck up on me…she’s only six, only 45lbs…I didn’t expect it this soon. I’m getting ahead of myself. First let me start from the beginning for those who may not be familiar with our journey thus far.

Corey, Linleigh's dad, and I were married in May 2007, and learned we were pregnant in May 2009. My pregnancy was normal and uneventful until at my routine 39 week OB appointment when we learned the baby was in distress. Lights flashing and sirens blaring all the way to the hospital, we went for an emergency C-section. Linleigh was born on January 13th within 12 minutes of arriving at the hospital. She was not breathing. It took a team of doctors 19 minutes to get Linleigh to breathe on her own for the first time. The day is a foggy, emotional memory for me as I was heavily medicated trying to manage the pain from such a traumatic, rushed C-section. I assure you, epidurals do not kick in that quickly, and I felt them cut me open. As I was rushed into the OR the nurses had told me I would be put out with general anesthesia, however, at the last second the anesthesiologist changed his mind fearing the effects of the anesthesia on the baby. Still to this day I believe he saved our precious baby girl with his split-second decision.
In the NICU at six hours old Linleigh began having seizures and continues to battle them today. Miraculously, Linleigh came home after only 10 days in the hospital, but was readmitted by Neurology 2 days later for more testing and monitoring.
Those first days, weeks, months really, are all a blur. After our NICU stay life became filled with diagnoses I didn’t understand, hospitalizations, tests, and countless doctor appointments. At one point, I believe we were seeing nine different specialists. Life was hard as new parents and balancing all her health concerns. Due to the lack of oxygen at birth, Linleigh had sustained a traumatic brain injury. I still remember the rainy day. Standing in a dark, dreary hallway at Children’s Hospital just outside Linleigh’s room, I stared at a computer screen as the neurologist shared the results of her first brain scans. His words pierced right through my heart. I was hearing his words, but after phrases like “catastrophic global damage,” I stopped processing them and just stared at the screen not really wanting to look at it. Like a car accident on the side of the road, I just couldn’t look away. Our little 6lb baby girl was just 12 days old at the time, and we were left with lots of uncertainty for what her future, our future, might hold.

But life went on. Linleigh grew and developed at her own rate, and eventually we added to our family. In March 2013, Linleigh welcomed brother, Broderick, and then in July 2014, little sister, Everly.
To this day Linleigh continues with many doctor appointments, and weekly therapy appointments. We’ve also had more than our fair share of emergency room visits and hospital stays over the years. But there is no denying that in the last 6 years, she has made awesome strides.
Linleigh has just started her first grade year of elementary school, and is working with a communication device to finally have a voice! There is a huge learning curve with such a device. She has to learn to navigate the program while also fighting to control her movements as she accesses the switches. But she’s a smart little cookie, and she’s constantly amazing us, as well as, her doctors and therapists.

Last November Linleigh received her new wheelchair. We love it! The difficult part is the fancy new chair weighs 85lbs. As a stay at home mom, most of the lifting defaults to me. I lift all 85 awkward pounds multiple times a day in and out of the van for every doctor appointment, therapy appointment, grocery trip, to and from school, and any other outing. Although she has recently started trying the bus to and from school, and so far it is going well, all of the lifting is really starting to take its toll on me. I started a new workout regimen recently, not for your typical reasons, but to be stronger for my daughter. While her 45lb, skinny little self is still manageable, her tall stature is awkward to carry, and she is only continuing to grow in height and weight. Our two story house has always been a concern in the back of our minds, but the stairs are becoming an obstacle. On Father’s Day I took a small tumble with Linleigh on the stairs. Although we are both fine, and she was not injured, it was a wake-up call that my greatest fear is that much closer to becoming a reality. If anything ever happened to this precious child of mine, I would never forgive myself.


We know life with Cerebral Palsy will always have its challenges with unforeseen obstacles popping up as we go. I’ve felt isolated, so alone in my thoughts and so helpless to change our situation. Linleigh’s needs have driven me to be at home with the kids leaving Corey as our sole source of income. Despite efforts to progress within his career, God has kept him where he is. Not only does he work 40+ hours a week, he is also currently in graduate school working to better himself for our family. Our means would be limited as family of five without Linleigh’s special needs, but all the added challenges of her care only add to the financial stress.

 I posted about the stander as way to vent some built up frustration, never expecting such an outpouring of love and support for this small challenge in the grand scheme of life right now. It made me realize people want to help and keep asking how they can help us, and I guess unless we make our needs known, no one can do that. So many of you have asked, what are our needs? Our immediate need is a handicap accessible van (ie purchase a new(er) van and have a conversion done). Then a ramp into the house, and eventually we need to assess home adaptations and/or an addition to alleviate the stair obstacle.

 I write this all with a humble and very vulnerable heart. We know God knows our needs and concerns for Linleigh and her safety. God Bless all of you who have taken the time read this and have chosen to embrace the journey with us. We are forever grateful. 


Love, The Fergs