Day Seventeen

Today had puke and a step back BUT it was also full of connection!
We started our day with more questions than usual and randomly got to FaceTime with a new PMS super insightful and kind mama friend and her absolutely beautiful daughter.
PMS is aways so mysterious so as we figure out tweeks to navigate forward we milk simplicity and sweetness. Ada practiced her kisses on Oona and

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Willa cheered Ada up with tons of giggles during her after puke bath. Jon and Ada shared a great music session… I overheard Willa singing to herself while coloring: “my mom is a queen” (lol)
it is what it is…and we are in it together!
#PMSF #PMSFAus #PMSFUK
#PhelanLucky #OneIn5Million #WorldofMae #ThisIsUs #ThisIsPMS#sisterhood #PhelanMcDermidSyndrome #fairystrong #RideTheWave#KapowGrashow #protector #LeanOnMe #happiness

Day Sixteen

Written St. Patrick’s Day, March 2017

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Slainte is Gaelic for health and traditionally used as a toast.

Following text from a fellow fairy mama: Chrissy Turnock Kaiser…xo!!

~~Today above all days is important to the Phelan-Mcdermid Syndrome community. Only 1500 (in the WORLD) have the diagnosis so we band together to get the word out about our kids. I truly believe that there is someone out there that will see this and help us get closer to a cure.

How can you help? Share my post. Post your own Phelan Lucky photos (even if you don’t have a shirt!). Read about the syndrome: www.22q13.org

It isn’t easy being special needs parents but it is easy to love Mason and his determination every day. 🍀~~

Cheers to the spirit and sweetness and raw beauty Ada and her PMS brothers and sisters bring to this life. We are so very lucky to spend our lives with Ada, our magical, courageous, and clever teacher! #ForAda

#PMSF #PMSFAus #PMSFUK

#PhelanLucky #OneIn5Million #WorldofMae #ThisIsUs #ThisIsPMS #sisterhood #PhelanMcDermidSyndrome #fairystrong #RideTheWave #KapowGrashow #protector #LeanOnMe #happiness

Day Fifteen

#giggles #lightbright Ada’s bright shineyness is currently in full effect!
I’ve mentioned Ada’s regression which took all functioning away from our fairygirl at 4.5…including her extreamly cheerful disposition. Regressions are common with PMS as are seizures. Ada had her first seizure this fall after much speculation over if she had ever experienced one or even hundreds before. Hypotonia (low muscle tone) causes poor neck control, similar to the fragility of an infants neck. Well this floppiness looks exactly like what’s called a “drop head” seizure. So PMS parents in this among so many other ways need to be constantly monitoring and vigilant detectives!
As Ada’s body heals from these rocky waves that truly pummel her, so does her spirit. Just like when the clouds part after dark days, Ada’s spunky sweetness shines so blindingly bright…illuminating everything around. For instance she giggles every PT session lately and yesterday Ada and Wills shared a wrestling/cuddle sesh in which she cracked up the entire time! We cherish these days and moments as we have only so much control of when or how often her rays MAE shine.
#PMSF #PMSFAus #PMSFUK
#PhelanLucky #OneIn5Million #WorldofMae #ThisIsUs

Day Fourteen

While Jon plays music with Ada…Willa wraps Oona up in a beautiful bow…reminding us that the best gifts in this life are our loves.
Jon first learned to play the guitar when Ada was in the depths of her debilitating regression (4.5 years old) when the only thing that would soothe her were visits from her music therapist. So Jon has become a music therapist of sorts since.  With his instantly sweet, mindful & loving daddy style, their music bond is very rich and fulfilling.  I notice the joy they create during these special sessions spilling into many aspects of our life.  #daddyloveDSC_4967
#musicislove#musictherapy
#PMSF #PMSFAus #PMSFUK
#PhelanLucky #OneIn5Million #WorldofMae #ThisIsUs #ThisIsPMS#sisterhood #PhelanMcDermidSyndrome #fairystrong #RideTheWave#KapowGrashow #protector #LeanOnMe

Day Thirteen

School in the morning and therapy in the afternoon on Monday, Tuesday & Wednesdays.

On Tuesday afternoons my mom, Grandma Eileen, takes Ada to therapy to give my assistant (Oona) and I a chance to work on Ada’s school stuff, and all sorts of other random serious jobs that pop up such as inspecting toy collections like these blocks here.  Prep time for a teacher is essential and since starting this Early Childhood educational setting at our local library, I have been so grateful for the support system that allows me to to keep this program sustainable.
My mom, our BSC, our TSS, and our home health aides create our consistent support system. Every PMS family needs to have a team;)
#ispeakforthetrees #ittakesavillageIMG_8040
#PMSF #PMSFAus #PMSFUK
#PhelanLucky #OneIn5Million #WorldofMae #ThisIsUs #ThisIsPMS#sisterhood #PhelanMcDermidSyndrome #fairystrong #RideTheWave#KapowGrashow #protector #LeanOnMe