When I found out I was pregnant at the tender age of 35 I was at the middle of a good career in commercial insurance, raising an 8 year old daughter and in the beginning stages of divorce.
Once we found out we were pregnant, we tried to reconcile, but it just wasn’t a healthy marriage for me.
When Bella was born prematurely, I was only 5 months along. That was the longest winter in limbo. I also decided to give up my career in the face of the long road ahead raising 2 girls, especially with one facing an uncertain future.
Many questioned the decisions I made, including giving up a lucrative career, divorcing during pregnancy, moving from a large city and moving back to small town North Carolina, to surround myself with my village of family and friends.
When Bella was released from the hospital she was tiny. We didn’t have a home of our own, but my family opened up the doors wide for shelter and support.
Those early years getting Bella to her many Dr appointments and specialists were my top priority. My 8 year old had to grow up fast helping with bottles and diaper changes and tagging along to Speech, Occupational and Physical therapy along with treks to the Shriner’s Hospital in Greenville, SC for Bella’s cerebral palsy issues that affected her walking.
Back then, I felt guilty for all my oldest (we call Cookie) had to give up. Yes, the guilt weighed on me. Was I overlooking Cookie’s needs in order to focus on Bella?
I did the mom thing. I signed her up for basketball and cheerleading and tried to spoil her with material things. Cookie loved being able to be active in sports. She didn’t always like that, if I couldn’t find a trusted family member to watch Bella, meant either we chanced Bella having a meltdown from the noise or lights, and had to leave early or mom just had to let someone else take her to her practices and games.
As a single parent, especially if one of your children is special needs, we all face guilt or try some form of compensation for the other child or children. When the dreaded comment “ It’s always about Bella” came from Cookie’s mouth, my heart broke for her, myself and Bella.
How do you explain to a child that she will have the privilege to grow up, have friends, drive, date, move away, and be an adult, while Bella probably never will.
So yes, my life will always be about caring for Bella, but a mother’s heart also cares and prays and fears, for her other children to go out into the world solo one day, does it not?
This Christmas, Cookie gave me the best gift ever. No it wasn’t the Kate Spade purse or the expensive jewelry and makeup she spoiled me with. It was these words:
“Mom I have this nice apartment, a good high paying career at only 22, because of you.
All the times I had to get a “no” or adapt to a situation and see the decisions you made, although others didn’t understand it, with no apologies, and putting me and Bella first, showed me how to be a responsible, compassionate adult. I’m not spoiled like some of my friends, because of the team you and I had to become, for my sister”.
Those words were a balmy and salve to my heart and soul. Our children watch us. Not just hear us.
As parents of a child with an exceptional need, may bring some guilty feeling within. We may question like I did, how do my other kids feel. Cookie is an adult now. I worry about her living on her own, in another city, more than I worry about Bella, because Bella is always safe, with me a bedroom away.
In the beginning, I was just putting one door in front of the other, praying I was making the best decisions for myself and both my girls.
It’s been an ever changing journey, but I wouldn’t change a thing after getting the best Christmas gift ever, in Cookie’s words. I will let her continue to believe the Kate Spade was the best gift of the year. But my heart and spirit beg to differ.
Written by: Bella’s Biggest Fan
When my daughter Bella was born prematurely 14 years ago so did the labels begin.
Doctors see diagnosis conditions and limitations. First was, if she survives, she may not be able to ever walk, or talk with limited intelligence.
In the beginning the labels bothered and aggrieved me. As Bella got older, as a special needs super mom, I worked hard finding therapies and diets to diminish the labels given to her, such as autistic, verbal, cerebral palsy, brain injury, developmentally delayed.
When I stopped trying to fix what everyone was saying was wrong with my baby, I truly saw Bella was special, not because of her clinical labels but because she showed me what joy and living your best life really was.
When Bella was five, she hated the leg braces she had to wear in order to walk “ right”. The orthopedics Dr told us that she can’t run in it, but at least she can walk. She looked at him and smiled and laughed, as is her way about everything, but this time she stood up and danced. Every mouth in the room dropped to the floor, speechless at what we were witnessing. Soon everyone joined in her joy and laughter and started dancing too.
After that day, I knew mom and daughter would be fine!! She would guide me and I would be her biggest fan and protector, as she lives against the odds and unaware of the world’s labels and limitations placed on her.
At 14 she’s still dancing and laughing.. giving anyone near her a reason to want to smile and laugh along with her.