A very common statement said to me is, “I don’t know how you do it”. I usually don’t know how to respond other than smile and change the subject. Truth is, there are days that life is spinning out of control and in slow motion all at the same time – an emotional vertigo.

Rett Syndrome is complex, debilitating and progressive. Magnolia is strong, brave and smart. Rett Syndrome can take everythingl. Magnolia is unwilling to let that happen, not without a fight. Yesterday was one of those days. From the moment she woke up – literally the moment she woke up – she had seizures. At breakfast she had 5 more. She went to lay down and rest and had 2 more. 8 seizures within 2 hours. We’ve had these days before, these are the days that jolt us back to the reality of Rett. These are the days that we discuss life saving medicines and medical plans. Those kinds of conversations have become second hand. They shouldn’t be.

The reality is Rett Syndrome changed us all. It changed everything we knew. We were thrown into this entire world of Rett Syndrome parents that have been fighting for a treatment, a cure, for healthcare services, for therapeutic services, for insurance to pay for meds, for basic human rights. It’s a lot. So, when Magnolia has a bad seizure day, our heads spin and our world stops. All we can do is hold her tightly, while holding our breath.

Like vertigo, Rett Syndrome makes our world spin. It makes our heads spin with its dizzying number of symptoms and anxiety inducing attacks. But, the simple answer to “I don’t know how you do it” is simple. It’s “because we have to.”

3 thoughts on “Spinning out of control”

  1. Yep!! I know it’s meant well but I’ve been hearing it a lot too during this long hospital stay. You’re so strong, tough, amazing. I don’t really have a choice. I hear you and see you Jenny!! Xx erica

  2. My granddaughter Lea has Retts. She is now almost 18 years old. Thank you for bringing this debilitating condition to national attention. My children have refused help and are handling all of Lea’s care on their own.

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