It's every parent's worst nightmare: their baby was born unhealthy. When baby Maci was born, her parents were devastated to find out that she had a variety of heart problems.
Her parents explain on her Facebook page that "She was originally home on hospice until a surgeon was found who felt he could successfully operate on Maci's heart."
Like little Ari, Maci had heart surgery as an infant, and now she's passed the one year mark.
Her parents explain:
Four days after she turned a year old, she was also diagnosed with Mowat-Wilson Syndrome. This syndrome is responsible for her cardiac defects, GI issues, and eye/vision issues.
This syndrome also causes moderate to severe intellectual disability. Despite these diagnoses, Maci is happy and thriving, and she is the light of our lives! We wouldn't change her for the world! This is our journey…
Maci also has an older brother, and her parents recently decided to explain the basics of Maci's condition to him. They weren't sure how he'd react, but his response blew them away.
Maci's mom posted on their Facebook page about what happened when she told their son, Jake, about Maci's syndrome.
The post quickly went viral, with over 6,800 reactions and 360 shares on their page, and more reactions and shares elsewhere on Facebook.
She wrote:
Today is the day I told Jake that his little sister has a syndrome. I just have to share his reaction…
So I'm not sure why we hadn't previously brought it up to him. We haven't hid it, but we haven't talked to him about it. I guess because Maci seems fairly "typical" still.
As she gets older, her differences and disabilities will become more obvious, with a bigger developmental gap between her and her peers.
We knew we'd talk to Jake about it at some point, but today he asked a question that made for a good first discussion.
He found a magnet from the conference we went to that says “Mowat Wilson Syndrome Foundation” on it. He asked what it said, so I told him.
And then more questions came. "What does that mean? Is that why Maci was born with half of a heart?"
I explained to him that yes, actually it is why she was born with HLHS, and that it would also make her different in other ways. I told him it would make it hard for her to talk, and she may never really talk like us, so that’s why we teach her sign language.
It might also make it hard for her to walk, so she might walk a little different than us when she's older or she might need devices to help her walk.
I explained it might make it harder for her to learn, it might cause her to look a little different, and I went on…”when she is older, she’ll be a little different than us, but…”
His eyes started growing big and concerned, and just as I was about to tell him that all of that would just make her special in her own way just like each of us are special in our own way, he blurted out, "But, will she always want to play with me?! And will she love me?"
I wanted to cry! “Of course Jake! She will ALWAYS love you and she will always want you to play with her. I think you’ll always be her best friend!”
He ran to her and cuddled up to her and told her it was all okay as long as she would still play with him and love him.
What a perfect response. It showed me the innocence of a child. He couldn’t have cared less if she speaks verbally instead of using signs, or if she has trouble walking, or if she looks different than us.
He's my little hero. More than anything, he's Maci's hero!
This picture was immediately after our discussion.
What do you think of this incredible little boy?
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