…And we’re off!

It’s that time again- our half yearly trip to Delaware to see Dr. Bober and Dr. MacKenzie. It’s both exciting and nerve-wracking at the same time.

We’ve only ever gotten good news… or at least never bad news… but recently Addie has seemed like she has back pain. I hope it’s nothing, and just that when people push too hard on her back, she doesn’t like it- instead of it actually hurting. Either way, we are getting ready to go.

In my pink bag I have everything. Every x-ray, blood test, doctor’s note (from every doctor), clinic sheet from Early Intervention, denial letter from insurance, bill I’ve paid out, and all of my own research into Achondroplasia. It’s all neatly organized and labeled in the tote bag I carry from doctor-to-doctor. It looks harmless, but weighing in at about 14 pounds, this bag, a Clinique freebie (Thanks, C!), holds all that is my child’s diagnosis.

IMAG5698

Bringing this bag with me, armed with a notebook for my own use, I have never forgotten to ask a question, had to get back to a doctor, nurse, patient adviser, financial board or customer service representative with that information. I have it all in front of me, prepared for whatever is going to be said or done. Just in case.

I feel like there have been times in life where I’ve been ridiculed for my over-preparedness, but I know first hand that life can surprise you. And not all surprises are good. Some change your life, some alter your path, some enlighten and enrich, and others leave you bitter, grasping at straws to answer why. I don’t want to be the why. In fact, I want to prevent the why as much as possible.

With the gas tank full, the EZ*Pass loaded and a house sitter, we are armed and ready to take on whatever comes our way!

Comments

  1. Krysten Thompson says

    Good luck! I’m far, far behind you in this journey, but after our first 8-night hospital visit, I have learnt that whilst the experience has the potential to overwhelm, a notepad and the means to quickly research and question makes me the best advocate for my daughter. Thank you for your guidance thus far.
    And good luck!

  2. says

    I love your lioness strength of heart, soul, spirit in the care of Addie. I am like this with my notes, notations, files, lists in the caregiving of my Mom and I don’t give a flying shitball when any nurse, technician, physician gives me “the look” or says (this has happened), “Oh, you’ve been reading…” Damn right. Now I just have to get me a pink Clinique bag and I’ll feel as prepared and as perfect as you. Safe travels. Joyous discovery. Lots and lots of love… xo
    Sharon – MomGenerations.com recently posted…Food Review: Going BOLOCOMy Profile

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