Spina Bifida Awareness

October is Spina Bifida Awareness Month —a time to celebrate the hundreds of thousands of people living with Spina Bifida. Every October, we share community stories that challenge us to raise more awareness and support around those living with Spina Bifida.

Spina Bifida is a birth defect that occurs when the spine and spinal cord don’t form properly. 

So, I have to share my little niece, Ariah, with ya’ll. She is the cutest and most determined little girl.

Her journey into the world was a rough one, not only for her, but for her mom and dad. My brother and sister-in-law. No one was aware of her condition. She was born with a giant fluid filled sac on her spine, requiring immediate life-flight to Primary Children’s Hospital for surgery. It was a scary and long process before it was clear that she was going to make it.

Fast forward and she is now 19 months and learning her way around in her wheelchair. She is also learning how to stand and walk, using her parallel bars. She is quite the determined little thing and loves to do things on her own. She wants to be just like her big sister, Avery.

Having been blessed with two special needs children in our family has taught us to celebrate life’s little moments. To be thankful to live in an era where there is help and support for these little warriors. To her courageous mom, Alyssa, we are so proud of how you have taken on this unexpected challenge in life and have been the rock and support Ariah needs. Not only are we seeing what amazing things this little girl can do, we are witnesses to the incredible loving power of a mom who is determined to give their child their best life.

I love my family. I am proud of my nieces and nephews and am aware of their abilities and cherish their little personalities. Being an Auntie has been such a blessing in my life. I love my littles.

To learn more please visit https://www.spinabifidaassociation.org/

October Awareness Month

Wow, I can’t believe it is already October. This month is very special for our family. Not only is October Down Syndrome Awareness month, but it is also Spina Bifida Awareness month. (see my next post) Why is that important to me? Because our family has been blessed with BOTH!

First came my darling nephew, Nash. His arrival was super scary and it was touch-and-go for several days. I don’t want to get into the medical details but let’s just say, he is definitely a miracle!

Now, at 22 months old, he is thriving! His sunshine demeanor and heart-warming smile are one of the many, many, attributes this lil guy has. We celebrate his every milestone, his every achievement, even what some may consider a small improvement. He has taught us all so much in just these short 2 years. My biggest takeaway? He is able. He is able to live a FULL, happy and successful life. He is able to participate in all that life has to offer.

Let’s celebrate their ability! Their ability to be and do so much more than we ever gave them credit for. Instead of looking at his DNA as a negative mutation, we look at it as an “angel” mutation. He is an angel. He brightens our lives with every breath he takes. We are the lucky ones to have been given this gift. HE is lucky because he got the best mama, my little sis. She has had to learn so much, not only in the medical care for him, but how to teach him, even the little things like sipping water from a cup, or straw! (which was a HUGE achievement this month) She has taught him sign language and he knows over 35 signs. It is seriously the cutest thing to watch. He is always blowing me kisses on our video chats and signs, “auntie” constantly.

Practicing his signs, somewhat reluctantly. haha

So, happy Down Syndrome Awareness month, my little Nash! We are definitely AWARE of you and all the Down Syndrome Angels among us!

Nash and his big brother Braxton.