Skip to main content

May Edition eSpecially Parents: Natalie's Story

When people meet Sophia, the first comment we usually get is about her big beautiful blue eyes. They are very expressive and her spirit shines through. Her eyes speak even when she can't.

Sophia really loves being around people and socializing. She communicates by using some words and by the cute sounds she makes. She typically finds a way to get her point across.
Sophia loves to laugh, sing, hang out with family and splash around in water. Her all time favorite thing is listening to music and dancing around in my arms. It is one of my favorites too. Sophia has a really sweet personality and is very accepting of others.

But don't be fooled by sweet and petite Sophia. She has a fiery side. She is very sassy and will let you know in a heartbeat if she doesn't like something. Like most two year olds, she knows how to roll her eyes and scream if you ask her to do something she doesn't want to do. She can say some things perfectly, especially if she wants it immediately.

Sophia is a very busy girl. She has daily therapies to build up her strength so she can sit up, become mobile, use her hands, talk and become more independent. She also meets with many doctors on a regular basis. She handles the visits really well. Sometimes she squeals with excitement when they walk into the room. Sophia always lays back relaxed on the table with both hands behind her head, as if she's lounging on the couch. The check ups don't seem to bother her one bit.

Even though Sophia has experienced a lot of surgeries and pain in her short 2 1/2 years of life, she continues to smile and laugh every single day. Because of her, I strive to live in the moment and celebrate the simple things in life. She has made me a stronger, more compassionate and positive person and I am grateful.

Read more about Sophia here: caringbridge.org/visit/sophiaweaver


eSpecially Parents is a monthly series featuring nine moms with amazing stories to tell. To catchup, read more here. 

Comments

Post a Comment

Thank you for reading my post. I appreciate you taking the time to comment. If you wish to contact me directly, please let me know and I will email you.

Popular posts from this blog

Catching up with Ben

  I wish I had more time to write on eSpeciallyBen . Ben teaches us lessons on a regular basis: Smile often, give hugs, sit down and savor the moment, grab someone's hand to let them know you care and laugh with abandon–even if it annoys your brother. Ben will be 18 this summer. He attends high school in-person and enjoys seeing his classmates and teachers each day. In the photo above, it's 6 a.m. and he's can't wait to get on the bus. As for most people, the pandemic has been tough. Ben's in-person activities, camps and programs were canceled. He's happy to see grandma when we met on a Charlotte greenway or park. Ben seeks out social interactions and being quarantined away from friends and family was even more difficult because he didn't understand why. Ben's teacher sends me photos of him throughout the week. They just finished a rousing game of catch here.  Thank you for following eSpeciallyBen. If you want to see what I'm working on now, find me

A Lesson on Supplemental Security Income

In October, I received a letter from Social Security Administration saying that Ben no longer qualified for SSI AND we owed a very large over payment for two years of SSI that Ben did receive. The letter showed that we owned two of the same car. I knew this was wrong and immediately wrote a letter. I thought it was a computer glitch. Over the past five months, I have met with Social Security, spoke with several people over the phone and wrote countless letters providing documentation to show the cars we actually owned and filed appeals for the decision to revoke Ben's SSI during the two year period they think we owned these two cars. Tomorrow I have another meeting. I am hoping we can get this straightened out. This situation has caused a lot of stress for us and has taken a tremendous amount of our time trying to unravel the problem. I have not written a post in almost a month, partially because my brain power has been consumed with this issue and the bathroom saga (qualifies

Parenting an Adult Child with Disabilities: Talking About the Future

Ben in the middle with Dad (left), Carla Payne with Aging Care Matters and Mom This is the first of several posts about parenting an adult child with a disability. Ben will be 19 this summer; I am learning along the way. As always, I hope to pass on resources and wisdom. Discuss the future.  If your adult child is able to participate in planning for their future, ask them how they envision it. Let them draw a picture. Ask them to tell you a story. Maybe they can sign a few words that mean a lot to them. Find a way to get them involved. How do they see themselves living? By themselves, in a group home, with another family or with a sibling? Where do they want to live? In another city, in an apartment, in a house? How far away do they want to live from family? What level of independence can they handle? Do they want someone to check in on them? Do they want to find a job? Do they need a job coach or supportive employment? Who will help them with their finances? Is there someone they tru