Ours just happens to include hospitals, hard lessons, laughter, survival, and a lot of stubborn determination.
This is how we got here.
Believe me when I say it is not always easy! In fact, it rarely ever is! Ray, aka Papaw, Pappy, The Husband..Missed the call for the empty nest,and gained a beautiful house full of sweet moments and chaos.
The Second Child
Amber is the second child I gave birth to, and 3rd in the age line up. She played softball, basketball, and Jr. ROTC. I could always see her looking into the crowds to find me cheering her on. She was noticer of details, documentar of beauty in the simplest things, and always saw the flutterbyes AKA Butterflies each with their own identity. The first to line up the younger siblings, and organize their belongings. She loved to be in the center of every picture, and to be the one holding the camera later in life.
The Year Everything Changed
At 14 years old, Amber was diagnosed with stage IV nasopharyngeal carcinoma.
Chemotherapy, Radiation, NG tube feeding, and countless medical visits quickly became part of our daily routine.
We fought long and hard for the year to follow, never knowing if tomorrow would ever come.
One day in our journey, our life team at Levines Childrens Hospital came to announce that we were selected recipients to vacation with “Hilton Head Heros”…we were given the opportunity to spend the week in a sponsored home at Hilton Head all expenses paid.
Ambers doctor cleared her to go even though she was sick with Radiation/Chemo treatments. We ended up cutting the trip short as it was too much for her to handle, nonetheless; the few days we had were a welcomed change.
The Straw that Didn’t Break the Camels Back
My mother, who was close to all my kids passed away during this trying time in our lives. Amber was unable to attend her services as she could not have a days break in her treatments.
As I was torn between Mother or Child, One of my cousins, Pam stepped up and stepped in to cover my spot that day. Unselfishly gave up her own desire to attend,and drove Amber the hour to the hospital and the hour back. She even treated her to Outback steak house afterwards!
This is how life should be.
Connections in the Dark
During treatment, we discovered Camp Care — a place that helped our family breathe again.
Amber was able to meet peers from across the country who shared their lives with her. She wasn’t alone in her journey. Different people, different places, different lives all intertwined with one common denominator, Cancer.
The stories she told became a passion of how we are all connected in some way. If you look beyond the surface, you’d be surprised at what you will find.
When Chaos and Hope collide
One day we had a knock at our door, and it was “Make A Wish” foundation bringing the world to Ambers hands. Despite my pleas that Germany would be a great place to visit; her biggest desire was to travel to Atlantis to swim with the Dolphins!
And off to the Bahamas we went, with back seat tickets in the Limo stocked with Sprite, and Coke.
The kids had the time of their lives, and I have a picture centered on my living room wall of them with Ambers Dolphin to remind us daily of whence we came.
The Season of Survival
Life was not finished with us yet. As I traveled back and forth to the hospital with Amber, my job was put on hold. Ray did everything he could to make up for the loss, often making the trip daily between work hours during our frequent hospital stays.
We survived on bologna gravy and credit cards.
Collections began knocking at our door, followed by foreclosure notices on a home we had worked hard for. Our battle felt lost, our hope was thin, and bankruptcy arrived in the middle of the chaos.
Everything we had spent years building was gone.
What we once thought mattered suddenly didn’t. Life mattered. The hope for tomorrow became the only thing that helped us hold on.
The Light at the End of the Tunnel
And a page was written in our book that can never be erased.
This part of our journey was a game changer in the way we viewed our lives, what was important, what didn’t matter, and for the first time in over a year we saw the light at the end of the tunnel.
We all needed this time apart and together, we grew each in our own way, and reconnected as a family again in the chaos we found engulfing us.
Somehow in those moments, we found each other and an understanding that life is short. We were never promised a tomorrow, today is all we have.
Finding Joy again
Amber has now been cancer free for 16 years!! She graduated with her class and went on to have three kids of her own; Bentley 12, Trenton 10, and Nicole 8.
Each one has found their spots, and added life to our growing family.
The Echo’s of Time
Nicole was born with complications. First it was failure to thrive, and aspiration.
We noticed she would favor her left side, and could care less weather you interacted with her or not. Then there was the startle response, or should I say a lack of.
As a toddler, we added hypotonia to our list of diagnosis’s. Nicole had no fear, or sense of danger, and preferred to sleep upside down if at all.
She was hospitalized at 3 months old, and began Therapies at 6 months.
Doctors upon Doctors, test upon test, It had become near impossible for Amber hold down a job.
The Lens Changes Focus
Deja vu.
Amber, now a single mother was beginning to see what we went through from the adult side of her story. The struggles were real, and we cut it off as her life began to spiral down paths once walked.
Our best course of action, was for her to come back home where she could focus on Nicole. Bentley went to live with his MawMaw Casey, and Trenton became my best buddy. Several Therapies a week, social, cognitive, physical; Then the stimming patterns showed up at home.
Collision with The Spectrum
Nicole would only eat green foods, and fruits, insisted that she watch the nurses draw blood without even a flinch, then argue that the needle does not look like a butterfly.
A few seizures, and hospital stays usually during the Holiday Seasons when everything is bright and busy. The spinning, oh the spinning, constant, deliberate, fixations on objects, and then the meltdowns – things broken – hearts hurt – adults exhausted.
After years of testing we finally had our answers; Nicole is Level II, Moderate Autistic. With Developmental Delay.
And so, Here We Are!
As The Years Slip Away
Nicole has grown by leaps and bounds, as we learn and embrace all about the spectrum. This is our life with no regrets!
I have to be honest here, I struggle with Nicole. She is the sweetest, loving child you will ever meet, and her joy is as pure as it gets. She forgives easily and moves on to the next page without a second thought. But she has her days. And these days are exhausting to all of us. The cursing, the throwing things, the refusal to budge when we are ready to move and her honesty is brutal.
We are now in a place where Nicole is able to be a kid, though we have to stay on top of her surroundings and divert ahead of spiraling meltdowns. And somedays our plans are just not going to be carried out, but that’s okay. This is our life, and I wouldn’t change it for the world.
Through the years, Amber has focused on learning about the spectrum, about Nicole, and how to help her help us. She has worked vigilantly in getting us where we are today. Stable. Amber has now expressed its time for her to return to work.
But Time Tells Another Story
My health has began to decline. I was diagnosed with COPD and Emphysema. Then Leukemia (CLL) a few years ago, and recently had surgery to remove half of my thyroid due to cancer.
Ray has developed Artheritis in his knees, and back. Followed by high Cholesterol, high Blood Pressure, and Diabeties.
Amber has stepped into a role we didn’t see coming.
She now holds together an entire household and coordinates all of our appointments, doctors, medications not only for me, but for Nicole as well. She is now the keeper of me, a full time job in itself!
I honestly do not know how she does it or what I’d do without her, she is my rock!
The Perfect Family
Doesn’t exist! It just doesn’t.
No matter how hard you try to polish it.
We have our good times, but we also have our, Do we need to leave? Act like you’ve got some sense, and Don’t make me pull this car over days! Yes, I said it, somebody had to!
We show up in pajamas some days, mismatched socks, and hunt for a hairbrush most times. But, in our Beautiful Chaos, one thing is for sure..We are real.
With each other, and to the world we present ourselves to!
Tommorow is Not Promised
And this is why, instead of dreaming about our bucket list, we are determined to MOVE that bucket! Maybe a big move, maybe a small one, but we are Moving the bucket.
One day at a time, because today is all we have!
Our life is Chaos – a Beautiful Chaos – but it is Ours!
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