Palm Trees & Dragonfly Dreams

I was approached today and asked if I would talk about PTSD in caretakers of children with Rare Diseases. Would I mind or was it too personal or too difficult? Immediately, I said 'yes, I would do so' quite willingly even though doing so is a bad trigger and I know ahead that I will have to stop and walk away from this then come back to try and explain some more. Yes, It is very personal, quite personal in fact. And as with all things in my life it is difficult. Yet, here I am typing furiously away and here you are reading. Quite often when one hears the term PTSD one thinks of combat veterans. Well I can't compare myself with that as I've never been in the military. But I am fighting. I am fighting for my son, I am fighting for his childhood. I am fighting so that others after me don't have to feel they way I've felt. My enemy is my son's diagnosis of a rare genetic condition.  I will try to make this as general as possible because I think that...

      te·nac·i·ty təˈnasədē/ noun noun: tenacity the quality or fact of being able to grip something firmly; grip. "the sheer tenacity of the limpet" synonyms: persistence , determination , perseverance , doggedness, strength of purpose, tirelessness, indefatigability, resolution , resoluteness, resolve , firmness , patience , purposefulness, staunchness, steadfastness, staying power , endurance , stamina , stubbornness , intransigence , obstinacy , obduracy, pertinacity "she practices her gymnastics routine with the tenacity of a bulldog" the quality or fact of being very determined; determination. "you have to admire the tenacity of these two guys" the quality or fact of continuing to exist; persistence. "the tenacity of certain myths within the historical record"     Some days I feel that all I do is eat, drink, and sleep "AWARENESS" and then there are oth...

Hello everyone! We hope you all are feeling fresh and ready for the new year and hope that it is everything you need it to be. I have our projects set up for school this month, and I thought that I would just make a quick blog and share them with you here are just a few. As everyone that follows ( www.facebook.com/POMCmomma )  Nate's story knows Monday is our Baking Day and boy I am looking forward to our monthly 'Raddish' box to help with our kitchen skills, (no they are not paying me to advertise) They have a whole lot to offer the homeschool community look for the link on their page, and their Bonus bites. I have already made little books out of the information they have on the website. https://www.raddishkids.com/ As part of our 'daily walkies' we will now be going for a lot of bike rides! Nate got a super bike just before the holidays and we had special pedals added so he could safely ride it. I love it, he loves it! Thanks to our 'evac-u-c...

 Our summer was chock full of Adventures with a capital "A". Hurricane Irma set her cap to come our way and because of Nate's many medical issues I was urgently setting things into place, various things that I could only hope would keep him safe from the unknown safe from the what ifs. Now I will be the first to tell you that I love storms. I love the sounds and the smells of a good thunderstorm. Hurricanes too, well that was before Nate came into the world. now they bring a whole kettle of worry So as things happened, a friend of mine insisted that we reach out to our 'Island of friends' on social media to help us evacuate to NY/Vermont. So I did. Wow!!!! In a matter of hours we had enough funds to get us there. What an amazing blessing! Just the trip in its self was a overwhelming challenge but I did it. I did it with a LOT of help from my friends. So, what normally would take 2 days. ( 24 hours drive time) took us 4 days. Four long 9 hour days of ...