By: Katie and Jennifer 

How Jasmine Inspires Mom 

By, Katie 

Jasmine Rose is five years old and our first-born princess. She was born weighing 4lbs and 6oz and spent the first 56 days of her life in the NICU. She is now 22lbs and the happiest little big girl you’ve ever met. Her smile is infectious, and her tiny feet are her best friends, besides her brothers JJ and MJ. Her grandmother, Nanny, found out about the CdLS Foundation after doing some research on CdLS after we found out about her clinical diagnosis at one day old.  

Jasmine is a happy, sassy girl with two fingers, ten toes, thick hair, and the cutest nose.

Almost everybody who comes across her seems to be “scared” in a way where they treat her like she’s the most fragile thing. She can’t be broken easily and LOVES hugs and snuggles. I wish more people could learn and understand CdLS so they didn’t seem so scared by it and love on them!  

Jasmine inspires me daily to be more carefree and to smile!

Almost everything in my life can be quickly fixed with a Jazzy Smile. As a young mother and my first child, Jasmine has taught me patience, love, advocacy, and humor. Being a momma of a child with special needs is not easy, but it’s the biggest blessing and beyond rewarding. It can be so much fun if you don’t let the worry, anxiety, and other people in this world affect you so much! Taking every day as it is is another huge thing we have learned. Jasmine has complete control of our days; when she’s healthy, yay, but if she isn’t, we may get Jazzy snuggles and kisses in bed or even a cozy hospital stay. If plans don’t go as planned, it’s not the end of the world.  

How Jasmine Inspires Nanny 

By, Jennifer 

Jasmine (Jazzy Roo) is my first of three grandchildren. She is now five years old and stole the hearts of her Poppy and me through the weekly high-risk scans and pictures. Her big smile and sweet nature is healing. She is adorable when angry, her laugh is contagious, and her sassiness is loved. Jasmine is the best snuggle buddy and the nosiest gal around when a cell phone is involved! Her favorite stuffed animal and sidekick is a rainbow llama named Charlie, and she loves to kiss and chew his nose. Jasmine is a curious little lady who loves to explore her room. She loves her family. Her parents are her everything.  

When Jasmine received her clinical diagnosis, my late husband (Jasmine’s Poppy) and I received a phone call from Katie giving us the news. I remember everything about those next few moments. We hung up with Katie and immediately began to google this diagnosis. As we quickly tried to process what we were reading and seeing, we had to take a moment to hold back the panic that seemed to be looming. In that moment, God provided us the peace and comfort to move forward calmly. Within the next scroll, I came across the Foundation’s website and began binge-reading the information.

Most of Katie’s pregnancy seemed to be an exercise in “knowledge is power,” within the Foundation’s website, we found the information we desperately needed to gain some control. I passed the website on to Katie; it is still our family’s top resource. 

As cliche as it sounds, Jasmine inspires the people around her to be better people. An example is how it often takes creativity and “thinking out of the box” to get her attention, to play with her, or to make her feel included. Once you have had a chance to interact with her, you want more of her attention and play time, and you so badly want to see her included; therefore, your creativity begins to flourish. 

Our family has learned the importance of acknowledging the difficulties and finding the bright side.

When sickness and hospital stays happen, concern, anxiety, and sadness will be there, but so should faith, family support, and even joy and humor when they present themselves. We’ve learned that schedules and routines are essential, but lazy, fun days are just as important. Our kiddos can teach us many things if we are willing to learn. 

I want the world to know that the uniqueness of CdLS turns heads and opens hearts.

The beauty of these kiddos lies within their fighting spirit, love, determination, and sweet features.

There are a lot of medical problems that can accompany a CdLS diagnosis. Managing any medical issue is a chore; however, the proper resources can change the game.  

We are very blessed to have such a close family. Jasmine has a network of very involved great-grandparents, grandparents, great-aunts, uncles, cousins, etc. With Jasmine being my first grandchild, I have learned just how much a grandparent can give of themselves to and for their grandchildren. I’ve seen how vital the grandparent-grandchild relationship is to Jasmine, me, and her parents. Not one moment spent with your grandchild is wasted. The reward is seeing how she lights up when she notices her people. Grandparents are a special part of any child’s network, and I know that my grandchildren are the grandest part of mine. I salute all the involved “grands” and hope you are aware of the impact you have.