17 January 2013

grateful for support

i'm off of work for the next 5 days & we are headed to mn for some time with my side of the family. today, as i was leaving work, i was scheduling meetings for next wednesday, the first day i'm back in the office. while doing so, i mentioned to a couple co-workers, who are also friends, that i am off on tuesday for ruby's neuro appointment at the muscular dystrophy clinic.

i don't know why exactly, but hearing myself say it out loud, to my friends, that that is the actual clinic ruby is being seen in & having an actual conversation that this diagnosis could be a possibility, really sent me over the edge.

i mean, really over the edge. suddenly, my mind started racing and i couldn't stop thinking about her appointment. the words "muscular dystrophy" were left on repeat, and i stated to feel completely & hopelessly helpless. it felt a little like what i imagine a panic attack to feel like.

i ran through the list of people i could call to talk to. T, my sisters, my parents, my bestest friend, michelle. but i didn't want to just be comforted, i wanted to talk to someone who knows ruby & her development and needs. so, i called her physical therapist on her cell phone.

it turned out that lisa (ruby's PT) was at home & not with clients today. i apologized for bothering her at home & she told me not to worry about it. i told her that i was starting to freak out about ruby's appointment now that it's getting so close. and then i started crying. like, really losing it.

lisa was such a support and calming force, even just over the phone. she reminded me that i am scared because i love her so much and that we are great parents, doing what's best for ruby - finding answers for why she's not developing correctly, physically-speaking, and looking for ways to help her. she reminded me of the fact that we (nor she) have seen muscle wasting & that some muscles have gotten stronger. i admitted to her what i am most afraid of - ruby's life being cut short due to a dystrophy diagnosis. and she told me that that is her biggest fear, too, because ruby is such a beautiful, funny person. and then she told me about all the treatments that have been found for various dystrophies & possible medications available. she ordered me to stay off google (you're right, erin!!) and made sure i wasn't taking ruby to the appointment alone. and then she told me to call her anytime i needed to and that she would be praying for ruby & us.

i don't think there was a better person for me to talk to in that moment. she went way above her role as our physical therapist. and i can't express in words how grateful i was/am. i don't know how we would get through all of this on our own. but we aren't alone. and that is very comforting.

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