Day Eighteen

When Oona and I walked into Ada’s room to say good morning we found Jon and Ada laying side by side on the floor sweetly as if gazing up at the stars, sharing cool ideas. Moments like these, when joining Ada in her norm creates such meaningful connectedness…are ABSOLUTE MAGIC
So me and Oonsy joined them! I gave Oonsy to Jon and laid next to Ada on the other side. Ada soon popped up in the excitment of hearing Oona noises. She sat up still in floppy morning grogginess that because of hypotonia lasts all day long everyday. People ask her ALL the time if she’s tired but it’s just her reality and I truly believe she needs this down time in order to have the strong bursts she’s now capable of.
So we read Ada’s cues…we sit with her, and flow WITH her and listen for ways to connect. Ada’s music therapist calls this “cuddle talk”.  I mimic sounds she makes, I respond with the same sounds then after some reciprocal repetition the sound morphs and we turn it into a little ditty. It sounds like she says the “b” sound so I ask her if she wants to read the bear book sitting close by. We tap together and sing “bear bear bear, I give a care…it’s fun to share”…changing my tone and using just plain silliness but slow and gentle and always listening for her to direct and shape my moves and decisions in a peaceful and respectful way. This is fairy talk. This is the alternate world she creates IF you give her the time and patience and build a strong heart foundation. We continued to read sing and stay connected for about 45mins…while Willa and Oona had their own sweet parallel reading time together. Willa beefed us up with 5 more books as Ada helped turn pages and remained very engaged. There wasn’t one moment of even feeling like I might need to redirect or keep her attention. With Ada you learn that by walking into an experience completely free of expectation and control you become vulnerable and open to just being and sharing and feeling truly connected. I walked in and hit the floor thinking I just want her to feel loved and heard and to know that she has a legit play partner in me. This is why I was “successful.”

She is a teacher with wisdom so deep it’s foreign to most humans.
Btw mamas getting a shower then it’s official day 18 photo taking time!
#benotdo #connectedness #read5books #bookworm
#PhelanLucky #OneIn5Million #WorldofMae #ThisIsUs #ThisIsPMS#sisterhood #PhelanMcDermidSyndrome #fairystrong #RideTheWave#KapowGrashow #protector #LeanOnMe #happiness


I’m sporting our tortoise & hare World of Mae 5k shirts…
Because we celebrate EVERY pace!
#benotdo #connectedness #PMSF #PMSFAus #PMSFUK
#PhelanLucky #OneIn5Million #WorldofMae #ThisIsUs #ThisIsPMS#sisterhood #PhelanMcDermidSyndrome #fairystrong #RideTheWave#KapowGrashow #protector #LeanOnMe #tortoiseandhare

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