The other night during bathtime, Rachel looks down at her belly and asked me, "Why do I got these brown marks all over me?" I smiled and added shampoo to her hair."Those are called cafe au lait marks, honey, it's part of Neurofibromatosis." I lifted my shirt and showed her mine. She just laughed and responded, "We're the same, that's cool!"
Rachel knows she is different, but she doesn't look at this as a bad thing. She lives each day to its very fullest and doesn't dwell on the hard times she has lived through, or the ones that she may face.
From the moment she was born, from the moment I knew she had NF, I knew it was MY responsibilty to help her realize that she was special. To not let NF define her or stop her.
Our conversation continued as Rachel got squeeky clean. I wrapped a towel around her and kissed her neck. She tells me that her birth marks make her cool and looked down to make sure they didn't get washed off.
"Will I have these forever Mama?" I hugged her tight and told her yes. She just looked at me, smiled said "Good, then I can grow up to be just like you!"
I just love moments like this.
I remember asking my mom that same question at that age, but she never handled anything NF related as well as you do. Your kids are so lucky. <3
ReplyDeleteLovely bathtime story! Your kids are wonderful, and well brought up. A credit to you, Kristi. Love their attitudes.
ReplyDeleteJess who is now 23 struggled in her early school days. She is now in her final semester at university and will graduate with at least a Credit. We are so proud of her, she too has an amazing attitude towards living with NF.
What a lovely, honest and refreshing attitude :)
ReplyDeleteI love to hear these stories, they make me feel better. I’ve been dealing with NF since I was born. It’s been so hard for me though. I feel as if people look at you different and now I see my son and I cry because I don’t want him to feel the same way I do. I have the cafe au lait marks but also have the one’s that stick out and it bothers me so much. My son only has the café au lait spots. No one under stands me, but listening to stories like this inspires me
ReplyDeleteI have more cafe au lait spots that are bigger. I could barely see the cafe au lait on this child.
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