Yesterday we received a letter from the geneticist. It singled out two specific genes that could be affected in Little Red’s makeup. The two rare conditions that is caused by this genetic mishap are… not very nice.

The letter also mentioned how Copperhead could be affected too, albeit mildly. The idea that the girls were identical was absurd to me at first. They just have such different features and face shapes. But the doctor explained, LR could look slightly different due to one of the conditions. Her nose is broader, her chin slightly pointier. Still undeniably beautiful, but she COULD fit in as per the common characteristics of that syndrome.


The mention that my Baby Bear’s ovaries could have the gene mutation is particularly difficult for me to consider. As someone who has suffered recurrent pregnancy loss, the thought of it happening to one or both of my daughters is absolutely heartbreaking. LR is by far the more girlier girl. She loves babies and playing make believe with her dolls. She’s become attentive to them, including feeding them her toast and wrapping them up in a blanket. Yes, it’s too early to say she even wants to become a mum. I know that. But looking at her today, compared to her sister, she has that maternal instinct for sure.


I’m struggling with this development, I can’t lie. My anxiety is in full throttle. I’m nauseas and don’t feel like eating.

Michael and I have decided to wait until we see our peadatrician in May before we make a decision as to what to do from here. That way we can discuss the genetics AND her appointment with the spinal specialist. Seeing him earlier won’t help because chances are the appointment would be several weeks anyway. I need time to wrap my head around it all. To get it straight in my own mind and to know what I want to ask.

I feel like the can of worms just got too massive and I’m not sure I was mentally prepared for it. I mean, can you ever be when it comes to your child’s heath?

Little Red is such a happy child. She’s smart as anything and I absolutely hate that this experience is even in our life. I don’t want her to be prodded and poked all the time but I feel like it’s already been happening and will continue to do so. Maybe helplessness is the word I would use to describe all of this medical stuff.

I dunno, guys. Trying to stay in the moment is feeling particularly difficult right now. Especially when we’re being faced with so many decisions that could affect the future.

K x


Leave a Reply