So cold today. So very, very cold.
And I am so very, very anxious.
I miss my husband being around to joke with, to hold on to when I feel as if I need holding on to but he has to be out in the world and that's all there is to it and I will be fine and I've taken my daily Ativan and that will help.
What a miracle to have that to fall back upon.
Here's another miracle- having made blog friends who can advise us on how to deal with what's going on with Owen. Elizabeth, of course, who has connected me with someone who is advising me as to neurological pediatric clinics in our area and also SJ, who works in insurance and has valuable information in that regard.
It helps so much to feel as if we have these lights in the darkness of our confusion.
We shall get help for our boy and that's all there is to it. Whatever it takes is what we will do.
Meanwhile, as I said, it is so cold. The heater in this old house just can't keep up with it and I have turned a space heater on in my bathroom and when it warms up in there some, I plan to take a hot bath to see if I can get warm. I have no place I have to be today except to take some laundry to Lily's that wasn't finished up here when they left last night.
AND...I have just gotten a call from Lily who has been able to make an appointment for Owen at Nemours pediatric neurology clinic in Jacksonville for THURSDAY! THIS Thursday! This clinic was recommended to us by the connection Elizabeth set me up with via Facebook. It's just for an EEG and although he has had several here, they like to do their own. And so- we shall begin and I am so vastly grateful and so incredibly relieved.
I will go with them for this visit. Owen has to be sleep-deprived so my job will be to keep him awake in the back seat on the way over.
I can do that.
I can do whatever it is I need to do.
Once again, I thank all of you who come here, who read here, who have offered your support in all of the ways that you have offered it. We feel blessed in your caring. We do not feel alone.
Thank you, thank you, thank you.
we are a real community. and of course you/we will do everything possible for Owen.ReplyDelete
Well, who could blame you for being anxious, given all that's going on. I hope all goes well with Owen's appointment, and yes, thank goodness for the expertise of Elizabeth and others.ReplyDelete
I feel like this blog has been such a positive force in my life. I mean- you and I got to explore Cozumel! I am so grateful to Hank who told me to "do it!"Delete
This is great - I'm so happy you're all feeling relieved. I hope you find just the right doctor.ReplyDelete
Me too, Jo. Thank you.Delete
Elizabeth has opened up my eyes to a lot about the world of seizures and also disability in general. My son is on the fringes of disability, always being borderline and then catching up, only to fall behind again. We are in a stage of overcoming hurdles and Elizabeth shows me constantly that you have to show up for your kid, but you don't always have to be "strong". I wish your family good luck with these new specialists. I have found that the right doctors make a world of difference. Peace and love to you all! ~Sarah from ColumbusReplyDelete
Yes. I have learned a hundred times more from Elizabeth than I ever learned in nursing school about disabilities in general and epilepsy in particular. She and her writing are forces for good and for education.Delete
And yes- I love that. Showing up always even though we can't always be strong.
Even the possibility of something helpful for Owen is a blessing.ReplyDelete
I love him, love your family, all of it. And thank god for the discovery of that little pill, finally a bit of help for you. SJ and Elizabeth? - god sent for all who know them.
I love that picture, kind of icon in being a glimpse into a real home. I used to collect the fish bottles too, they give such a pretty light.
I love you! - SJDelete
Thank you, Liv, for those sweet words. And those bottles are Buddha bottles. Buddha beer! It's not bad beer and worth the price just for the pretty bottles.Delete
Love to you and Owen and your whole beautiful family! Everything is going to be ok! 💛ReplyDelete
Thank you, Jennifer.Delete
Wonderful news. That Elizabeth is a force of nature, and bless SJ, too, and all of you who are rallying around your boy. I love what he said about having an episode at Maggie's birthday. It speaks to his resilience, his sense of being held. LoveloveloveReplyDelete
He is a strong boy and yes, resilient. And he is certainly held in love.Delete
What a mature, grown up boy Owen is becoming. So glad things are moving along. I wil echo what everyone else is saying, so much love surrounds you all. Thank you Elizabeth and SJ.ReplyDelete
Yes, yes, yes! Thank you.Delete
Hooray for a Thurs appt!!!ReplyDelete
I know. So relieved.Delete
I do love you, Mary G Moon, and I have for years and years. I will always help you and your family -- we are all family and connected in ways we can't know. I will help no matter what.ReplyDelete
As I said to you before...thank GOD for Elizabeth. I know a drop of rain, she knows a bucket.
Damn. Aren't we lucky?
Bless you, my other-daughter. I love you.Delete
Well, who would've thunk I'd be "advising" from clear across the country? It's a weird, wonderful world. I am so hopeful that your appointment will go smoothly and that Owen will be taken care of and that his parents and grandparents will feel all my love and experience and calm wrapped around them. Be strong. I'm sending you so much love.ReplyDelete
I truly feel your presence in my pocket every moment as we go through this journey. The comfort and love I feel from you can not be overstated.Delete