Sometimes I feel like I am. Like I am the girl no one wants to see coming because it means that something is wrong.
Down syndrome – call Aim
Seizures – call Aim
Infertility – call Aim
Pregnancy questions – call Aim
I am called upon a lot when seizures rear their ugly head. I know this and I am happy to take that role. L’s seizures are so rare and are commonly misdiagnosed that it actually gives me a sense of relief to tell a parent what to expect. I had Nadine to help me but she is 19 years and more surgeries ahead of me. She held my hand none-the-less. So I return the favor to new parents and hopefully I help them find their way. If there is a new baby with Down syndrome – same thing. I don’t mind helping and talking but I remember very well – deeply burned into my brain – how I was so scared and overwhelmed. No matter how much help you get, it still takes time to navigate your own way. It took me a few weeks to realize that L was just a baby. She ate, pooped and slept. I began to relax and enjoy it – but I was terrified late in the night. You mom’s and dad’s know those 2-3 a.m. baby wedged into your side times. Holding her sweet little body close to mine. Smelling her sweet baby breath and feeling her soft skin. Those beautiful almond shaped eyes watching me. Innocent. Loving. Beautiful. Sweet. Baby girl. Daughter. Sister. Granddaughter. Niece. Friend. Loving her more then my own life – and so sad for what I didn’t know was to come. It was those deep in the night moments that it was knitted into my own DNA – if you mess with my girl – I’ll kick your ass. If you use the R word – I’ll kick your ass. If you so much as think of dismissing my child – I’ll kick your ass. So maybe I am Darth Vader. He kicked a lot of ass.
On the other hand there is this list:
Banana Cream Pie – call Aim
Baked Chicken with veggies – call Aim
Having a party and need help with the food – call Aim
Need a glass of wine and a good sit down on the porch and laugh til you pee your pants – call Aim
Darth aint got nothin on me. He only kicked ass but I kick ass and I’m still your friend.