Sarah Defies Gravity

what one little chromosome taught me about love, life, and defying gravity.

I just wanna be there when you’re all alone, thinking about our better days when you had it in your bones

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(DISCLAIMER: any products linked in this blog post were purchased by Dec and myself to make our lives easier and I don’t get any money from the companies for pimping them out.)

It’s amazing how quickly life has gone back to “normal”, albeit a “new normal” with Sarah home. We spent our first two days at home, but by Saturday, we were ready to get on with the rest of our lives and decided to go out for some shopping and dinner. Sarah was armed with an adorable hat that combines both a giant flower and a sassy print (my two favorite things for my little lady), a very stylish pediatric mask courtesy of the grandmas and a stroller sign from Kind Signs and she did great! While I’m sure that there were some people who think we’re overly cautious new parents, I know that it’s the best and safest way to bring Sarah out in public.

I don’t want life to stop because of cancer. It did stop, for the three and a half months Sarah was in inpatient treatment and I don’t want it to be stopped for the next three years. I want her to be able to go out and experience life in this beautiful city and I want her to be happy and feel “normal”, especially as she gets older and realizes that he life is different from other kids.

Her first round of maintenance chemo is coming up tomorrow. I’m not sure what the protocol looks like for that, I know that we’re supposed to go to the clinic at 8:30 am (ughhhhhhh) and I’m sure the lovely nurses there will give us the rundown.

Sarah is back in regular therapy now–feeding, speech, and physical. She’s LOVING speech and the ST is very impressed with her progress in that area. She’s testing at about 9 months for speech which is great! I don’t want to talk about her PT testing…too fucking depressing. Suffice it to say that it’s very behind. Feeding therapy is also kind of a bust, but the therapist is an absolute joy to work with. She’s very laid back and easygoing and says that most if not all cancer kids–chromosomally enhanced or not–have difficulties with eating and with food even after treatment is finished because they’re either scared to eat because of vomiting or simply not hungry/nothing appeals to them. She and Sarah did some fun mouthing exercises and Sarah took a tiny bit of juice by mouth. Baby steps, right?

I’m starting to feel slightly more like a Down Syndrome parent again than a cancer parent. There’s still so much that’s different, but I feel a lot more relaxed and like I’m focusing on Down Syndrome and cancer in equal measures. Cancer is going to be very consuming for the next seven years of our lives but I don’t want to be obsessed with it the way I was. I finally worked up the courage to get in touch with the social worker for therapy and I feel like that’s helping a lot. I should have done that when Sarah was first diagnosed instead of trying to handle it on my own. Maybe then there wouldn’t have been so much to fix.

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