Lately I have been trying to take a step back and really dig deep to understand more of where my sweet girl is coming from. I know she's 14, and those teenage years have begun. However beyond that, what must it be like to have been told you have this diagnosis, and that diagnosis. I remember one time Cora saying she felt she was labeled. When the doctors, nurses, peers, and teachers see her, they see the girl with a heart defect. The girl who has this and that going on with her. The girl who is more demanding than other kids her age. She said she felt like she was a burden. There is nothing more heart breaking for a Momma to hear than, your child feeling she is a burden to others!
I never really stopped to think about that statement though, until recently. As the years have passed, my Cora, has begun to ask more and more questions. Like any child, she is curious about her defect, her limitations, her difficulty in learning, and what all this means for her now in her everyday life. So as I pull all these things together to share with her, I see defeat in her sweet big blue eyes.
I often wonder what it must be like for heart kids in their daily lives? It must be a daily challenge to live between two worlds! A world where they are expected to prioritize, manage, and grow independently. A world where executive functioning is easily learned, like breathing. Versus, the world they actually live in. The daily struggles with prioritizing, organizing, sifting, and managing daily information to perform everyday tasks. In addition to the actual health issues added to an already overwhelming plate of obstacles.
For Cora I simply can't imagine. Believe me I have tried many times. Cora has to take on these challenges everyday along with trying to understand and control her impulses. Then we add the next layer. Trying to find ways to get her memory to hold information. A task so many of us don't even think about because our brains just do it! I see her get so frustrated, and that brings yet an additional challenge for her. The difficulty handling her frustration, and trying to stay positive when she's reminded daily of her obstacles.
For so many heart kids, they are dealt more than many grown adults have to face in a lifetime! As a heart Momma, I am her daily cheerleader! I remind her constantly that the world is full of unique individuals who face all kinds of challenges. Though she may feel most days that her challenges are many, she needs to focus on the strengths God has given her. Yes life is difficult, but there is greatness she is adding to the world daily!
The stress for me, never diminishes, but I have learned to adapt daily. Just like my Cora has learned to adapt in her daily living! My job, if nothing else, is to make sure that no matter how many scars are on my baby girls chest, no matter how difficult the days are, she adds value and joy to the world! Not because she is our miracle daughter, but because she is God's daughter!
Blessings Until Next Time!