“Today Is The Day I Told Jake That His Little Sister Has A Syndrome. I Just Have To Share His Reaction…

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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. ❤️❤️❤️

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