This week we wear purple.

When Poppy was born, I was dropped suddenly, unaware, through some unnamed trapdoor. Like Alice down the rabbit hole, Lucy through the wardrobe – I was hurled into the opposite of never-never land… And I would do anything to go back and continue walking along the path of naïveté. Blissful oblivion. Dare I even say, a mediocre, yet healthy existence. Poppy saw neurology on January 2nd to evaluate the seizure episodes. Since being on the medication the frequency of these episodes increased about 200%. After viewing  a video and actually capturing an episode with her own eyes, the neurologist said she wasn’t convinced these were seizures at all. She did, however, bump her EEG up to be done that very day to rule out something “very scary” that she wouldn’t even name.

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It was a long day, and Poppy was absolutely forgiving for all of the poking, prodding, taping, scrubbing, adhering, and such. She really impresses me on days like these. The neurologist called on our drive back home to discuss the EEG results. Normal. The “scary thing” was ruled out and the test didn’t reveal any peaks or signs that showed seizure activity or a higher risk for seizures. She said that while this didn’t mean definitively that Poppy was not having seizures, she felt confident enough to take her off meds and “watch and wait.” Thank God. Since taking her off the meds the episodes have decreased drastically and while these odd, rhythmic, uncontrollable movements are still occurring – they are a touch less frightening now that she has been seen.

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Our flight to Texas leaves in 4 days. I am looking forward to meeting Dr. Fearon – but terrified of everything else. Flying, unfamiliar places, airborne illnesses, impolite strangers, air pressure, anxiety, the works.  If anyone would like to offer up a safe-while-breastfeeding anti anxiety remedy I am all in. This week has been especially hard on my heart. A friend from long ago lost one of her 4 year old triplets to a congenital heart defect. As I read the news my stomach lurched and I felt the color leave my face. “It’s getting too close.” I thought. Every minute of every day I fear that I will lose Poppy. This mother buried her baby girl on Wednesday. I cannot comprehend. I struggle to fathom how she manages to keep moving for her other two babies. I never want to know that sorrow or muster that immense strength. I wish I could scoop her up and hide her away in a safe, secret world where mothers never lose children, and children never suffer. Nestled in my prayers for her comfort and peace are my own selfish longings to be spared such heart-breaking offense.

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That said, I scheduled a follow-up with pediatric cardiology to check the status and size of the ASD’s (small holes) in Poppy’s heart. It is my intention to try with ALL that I am to remember to cherish the moment. Stare at her face for an hour, count the hairs on her head, smile when she is throwing a fit. Fear is understandable, but it is also consuming. I want joy and quiet. I want laughter and squealing. I want forever and ever.

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6 thoughts on “This week we wear purple.

  1. ♥ mama
    In sharing your journey you inspire.
    The midwives rec Bach’s Rescue Remedy for calming. I can’t say that I’ve felt drastic results… but it may be worth a try.
    Godspeed.

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  2. I carry hope in my heart everyday for your little Poppy to no longer have to worry about poking and prodding, but rather to fret over which toy to play with or how can she build the blocks before they topple. May you travel safe and I carry you in my prayers

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  3. I wanted to share with you that i felt a huge connection reading this post. My daughter was having what we thought were seizures (eye rolling and blank stares. It’s like she wasn’t there.) We went to the neurologist and ended up having two EEG’s done. Both came back normal. No one could explain what was happening but the ‘seizures’ were still occurring. We ended up seeing Dr. Eric Blake at Holistic Health downtown and he did some food intolerance testing and gave Zoe daily doses of different herbs. Zoe’s ‘seizures’ stopped within a few months of his treatment. Totally natural and safe. I wanted to share this with you because I was terrified and Eric helped my daughter which helped alleviate my fears.
    I second the Bach’s Rescue Remedy. It can be very helpful. Good luck on your journey.

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    • Rescue Remedy or another Bach Flower combo could help, I also use milky oat tincture for anxiety (totally nursing safe).
      Flying tips- nursing during ascent and descent of course- but also having a bottle as a back up (if she uses bottles). We recent flew on Virgin America and it was so great- bigger seats, friendly flight attendants, and a changing table in the bathroom!

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  4. Motherwort and kava kava are herbs that are safe to take while nursing, and stronger than rescue remedy. You can take 1-2 dropperfuls 1-2 times a day, and more if you need it situationally. Love to you family.

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