It’s Been Awhile… Where to Start, Where to Start…

So much has happened since the last time I wrote about A, but then I feel like nothing has happened. If that makes sense.

So I know it is July 7th but I would like to acknowledge July 2nd. You see July 2nd was very special to me, to us. It was Disorders of the Corpus Callosum Awareness Day. Ever since A was diagnosed with ACC, I am constantly reminded how this disorder has affected all of us. And not in a negative way, just a hard way.

I don’t know what my daughter understands, I don’t know how she will learn, I don’t know if she will ever speak, I don’t know so many things… It’s hard sometimes. Sometimes I just have to sit back and understand that maybe it wasn’t meant for me to know anything. Maybe I am just here to enjoy the ride and learn from someone who has taught me more in her 2-1/2 years on this Earth than my life before her.

I worry. I worry that she may not ever get past a certain skill or mentality. I worry that she may never be able to live on her own. I worry that she may develop other conditions. I worry that people may take advantage of her. I worry about her balance and why she walks so funny. I worry about a lot of things.

What I don’t worry about is her contagious smile that lights up a room whenever we go somewhere. What I don’t worry about is my unconditional love for her. What I don’t worry about is her determination and persistence.

So she went into eye surgery last Thursday. Let me tell you about this kid. She was a champ. She walked into that office like she owned the place. She was such a good little girl and all the doctors and nurses just wanted to visit her bc of her pure joy with life. I was completely nervous and the doctors and nurses made us so at ease. When she woke up from anesthesia, I was so relieved. When she devoured all her animal crackers right after she woke up, I thought to myself, “This kid rocks!”

She looks so completely different to me now that she has straight eyes. It has taken me awhile to adjust to it. Not her tho. She was ready to go that day. She was running around the house, playing with toys, and bringing us books to read to her. She wasn’t even phased.

That’s what I love about this kid. Even after everything that is going on with her, she is always just so happy. She is so innocent and pure. She makes my heart sing. While I do sometimes (well let’s be real) a lot of the time worry about her and cry over her, she does make my heart so happy. How is this? How can I be sad and happy at the same time? It’s like when it is raining but the sun is out. I guess that’s the only way I can describe it. Like there is a silver lining to all of this.



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