The Best Christmas Present Ever!

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.

~BBF

Dance With Me!

Written by:  Bella’s Biggest Fan

Labels.

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.

~BBF

Non-Verbal Communication

Hubby and I took Buddy to town with us last week and we decided to stop at Denny’s to get lunch.

I cannot tell you how much I love doing this.  Mostly because 7 years ago, doing something so basic as going to lunch with Buddy was something that would cause me major anxiety, and quite honestly, we just wouldn’t do it.

This is one of the goals that I have to credit his care giver for.  She has been phenomenal, I think it’s because she is a foodie and takes Buddy to all of her favorite restaurants. And now he is a foodie too!

Anyway,  we took Buddy to lunch at Denny’s and when we got there, we had a 5 minute wait.  I kept whispering to him, “You’re doing great” “We just have to wait a few minutes” “I am so proud of you”.

We get seated and I sit on the outside of the booth and he is on the inside.  As we order our food and wait, I have my arm around him and I keep telling him those same statements.   I also turned on Spotify, because as we all know, music can be magic to an autistic.

Our food comes and Buddy eats every bite and a few of mine too.  Then as we wait for the check, he puts his arms around me and pulls me so tight to him that my glasses almost fall off my face.  As he kisses my cheek, I hear it, not with my ears, but with my heart.

My non-verbal son, just said “Thank you Mom, I love when you take me to lunch, and I love you!”   as he held me and kissed me again, I felt him say “You’re doing great, I am so proud of you!”

As we drove home and I pondered this wonderful experience, it occurred to me he does this every time I take him to lunch.  I think we need to do it more often!

 

~ASM