Day Twenty-Six: Affectionate Ada

Cuddle Bug…finding ways to connect figuratively & literally

Almost every school day Ada cuddles with her friend, Aubree’s mom, Christy Harvey-WarnerūüėČ Ada meets her at the door and melts literally to the ground as Christy lovingly supports Ada. I love how Ada truly senses kindness with some sort of fairy radar;)

When Ada feels comfortable and wants to spend these close moments I share with the person that these actions seem to be part of her love language and that you really need to use your muscles to ensure safety cause girlfriend will literally throw herself on you. Ada’s music therapist calls this “cuddle talk”, her speech therapist calls it “hug therapy” it’s like a slow motion wrestle and before you know it, Ada’s got you pinned!

#PMSF #PMSFAus #PMSFUK #mamabear #DisabilityRights

#PhelanLucky #OneIn5Million #WorldofMae #ThisIsUs #ThisIsPMS #PhelanMcDermidSyndrome #fairystrong #RideTheWave #KapowGrashow #protectors #LeanOnMe #cuddles #loveLanguage #hugTherapy

Day Twenty-Five: Fairysteps

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Usually during Ada and Jon’s weekly grocery trip Ada rides in the buggy…this weekend guess who walked hand in hand the entire time?! Way to go Ada Mae! Jon said she navigated through the store like a champ;)

Phelan-McDermid makes gross motor very challenging. Ada learned to walk at two…lost that ability at 4.5 and then again at 5.
Tonight as I helped her walk down stairs she’s unfamiliar with it took her forever for her foot¬†to venture down to the next step it’s not just a physical challenge…for Ada it’s also cognitively and psychologically really difficult.

So we stay loving and supportive wherever the functioning may land and know that her smile is a hell of a lot more important than a step but when we get both that’s icing on the cake!

#PMSF #PMSFAus #PMSFUK #mamabear #DisabilityRights
#PhelanLucky #OneIn5Million #WorldofMae #ThisIsUs #ThisIsPMS#PhelanMcDermidSyndrome #fairystrong #RideTheWave #KapowGrashow#protectors #LeanOnMe #theseBootsWereMadeForWalking

Day Twenty-Four

Today we got to spend time with my Grandma Beardsley, Jennifer Blatz & Pap (Bill Beardsley).  
As soon as Grandma walked into our house Ada ran over, tapped her and vocalized the sweetest fairy greeting.  I also love when my Ada and my Grandma share such beautiful moments like this, as my grandmother has modeled to me how to fiercely fight for the needs of people of ALL abilities.

I apologize for the clutter this photo exposes! ¬†Let’s be real, being a family living with severe disabilities AND a baby…it gets messy!

IMG_8341That was a big deal because with Ada’s slower processing when we have company Ada tends to retreat into a quieter space away from the group, usually in her and Willa’s bedrooms. We proactively make sure that we take turns having close Ada time and it¬†helps when our guests are understanding and also feel comfortable going into Ada’s more comfortable spaces and meeting her where she is. Otherwise she would get left out…which is not an option.¬†
Jen & Ada shared sweet moments together today as Ada is experimenting with new poses and positioning that display great bilateral functioning, core strength…AND peaceful fairy sass;)

 

#PMSF #PMSFAus #PMSFUK #mamabear #DisabilityRights
#PhelanLucky #OneIn5Million #WorldofMae #ThisIsUs #ThisIsPMS#PhelanMcDermidSyndrome #fairystrong #RideTheWave #KapowGrashow#protectors #LeanOnMe

Day Twenty-Three

Be a voice for vulnerable creatures without one!

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Our 2 & 3 is mixed up just like this current administrations idea of how to treat Mother Earth! Please help us resist and be an advocate for those without a voice.  #ispeakforthetreesIMG_8295

#PMSF #PMSFAus #PMSFUK #nuture #wildlife #mamabear
#PhelanLucky #OneIn5Million #WorldofMae #ThisIsUs #ThisIsPMS#treehuggers  #PhelanMcDermidSyndrome #fairystrong #RideTheWave#KapowGrashow #protectors #LeanOnMe #babybear #pups