A hard, hard, hard day.
Owen had another episode at school today and Lily went and got him and took him to the neurologist's office immediately. Jason met them there and I got there shortly. We had been under the misunderstanding that if they could get an EEG as close to an episode as possible, it might show something but one was not done and according to our community expert here, it would have done no good anyway. The doctor said that although he doesn't like giving medication when the specific problem isn't known, he prescribed medication which was confusing, to say the least.
And an MRI has been ordered and most importantly, the process has begun to get Owen into the pediatric epilepsy center down at the University of Florida at Shands which is supposed to be a very, very fine place.
We watch, we wait.
This is taking a toll on all of us, of course. Everyone in the family is involved. Jessie picked up Gibson from school and took him home with her, Mr. Moon got on the phone and called Shands himself. Hank and May are offering whatever support they can give. I am texting our community expert and getting her advice and wisdom and sharing that with Lily and Jason.
And I'm sure that Owen doesn't have the slightest idea what to think.
BUT. Our family is built on love and support. That is never in doubt and never will be. Emotional, physical, financial. We have all of the pieces in place and this is when their value, worth and truth is most important and obvious.
And all will be well. Owen will be fine. He is sturdy and healthy. He is strong and he is smart. And he is loved and all that can be done to figure this out will be done.
And that's what my day has been like. I sat in the waiting room of the neurologist's office to be there if they needed me to take Maggie and for a moment, I thought I might pass out. I've never passed out in my life. I got myself together and went to the women's room and peed and washed my face with cold water and took good breaths and went back to my seat and soon enough, Jason and Maggie came out, followed by Lily and Owen who was glad to see me and Maggie was gorgeous and wanted to walk around and wave at everyone who would look at her because that's what she does and then we went and got some lunch and Owen ate chicken and noodles and fruit and then Lily called Shands too and made the calls to get things together to get an appointment and Jason and Owen went and picked up Gibson and Lily took Maggie home where she made more calls.
And making calls for Lily is as hard as it is for me.
She and Jason are the most amazing parents and I am so proud of them.
I went to Costco and bought an organic turkey and balsamic vinegar and then to Publix where I bought butter-flavored Crisco to make the pie crusts and now Mr. Moon is on his way to auction to buy cars for clients because this is how he supports us and provides for his family.
And now, because everything has been so hard and so strange and so difficult lately, I want to end with a video that Lily made the other night of August watching his very first cartoon on TV which was "Finding Dory." Lily reports that he watched for such a long time and she made popcorn and he sat on the couch and watched and laughed and ate popcorn like a grown-up.
We have much to be thankful for. Because of it all and despite it all.
Much love...Ms. Moon
Reading this brought back the angst when our grandson had to have surgery at a month old. The feeling of total and utter helplessness is overwhelming. And you've already been through some shit, so this must be even harder for you. Yes, keep in mind that your strong, loving family sticks together....and together you'll deal with anything. Thinking good thoughts for all of you!ReplyDelete
Those very same thoughts are what are sustaining me and my family, as well. Thank you, Catrina. So much.Delete
Mary, I wish I was there to do something for you. Your last few weeks have been especially cruel for you and your family. Today I was I a thrift store and came across a cashmere sweater and thought of you. I'm worried for and about you. I know you are trying to brave. Sending you all the love I have.ReplyDelete
I hope you bought that sweater. I am grateful for your worry and your thoughts and your love. I am, Birdie. Truly.Delete
It was too small. But I was thinking about you way up here xoDelete
All good thoughts to you and your strong family and wonderfulReplyDelete
Thinking of you, Owen and your sweet family.ReplyDelete
Sending so much love. Owen is lovingly held.ReplyDelete
Holding all of you in my heart, with so much love.ReplyDelete
the uncertainty of what exactly is going on with Owen must be frustrating and frightening......although I think there is a good guess based on symptoms. Poor little boy man and his poor Mama and Dad. How wonderful that the love of all of you combined will help them through this. You've raised a wonderful family and should be so very proud (I know you are).ReplyDelete
Thanksgiving blessings on you all
and yes, we did have rain in Calif!
You are going through such challenging times. I am wishing for the best outcome for dear Owen. My grandson is an Owen too and is just a little bit older than yours. He has some challenges and I feel every one of them as you do. I hope your family strength gives you some peace.ReplyDelete
Well, you know what I think. All shall be well. I love you so much. And that whole kick-ass family of yours, too.ReplyDelete
For what it's worth, let me tell you about my wonderful charming clever friend Nicholas. He is an explorer, a husband, a father of three wonderful children, a pianist, a cyclist, hill walker, bush walker, amazing cook, he speaks many many many languages and he always knows the best jokes, he is a professor of linguistics, he writes books and scholarly articles, he is currently living in deepest Papua New Guinea studying the complicated local languages and he is an epileptic, has been since childhood.ReplyDelete
At times like this a loving family is the best thing you could want for and you have that in spades. Owen is the most amazing little boy, he can handle anything, you know that. He's probably the one who is the least scared. You'll get through this, everyone will get through this.ReplyDelete
I love you dearly.
He will be ok. It will be ok. He is a sturdy child with a family full of support. I'll be thinking of you all with a little bit of angst, but not too much b/c he will be ok.ReplyDelete
Well, as Roseanne Rosannadanna's daddy use to say...it's always something. so sorry to hear Owen had another seizure. but you and your wonderful family are doing everything and he will be fine once they figure out what's what.ReplyDelete
This is a strange situation but I have no doubt they'll figure it out. My hopes are still pinned on some kind of transient seizure condition that will resolve itself. You all certainly set a powerful example in how you care for each other!ReplyDelete
Sending love and hugs to all of you who are surrounding and sustaining dear Owen. Sending healing energy to your dear boy. x0x0x0 N2ReplyDelete
So sorry to read this Mrs Moon. Dear Owen, your first grandson. Must be extremely hard on all of you. Will send good vibes.ReplyDelete
I am sorry this is happening to sweet Owen. My hope is, like Steve Reed says above, that it resolves itself and goes far, far away.ReplyDelete
Oh, you guys. I know you're going to manage this so well, I just wish you didn't have to.ReplyDelete
Ugh, I had no idea this was happening, reading backwards. Damn. No wonder. No wonder you're so out of sorts. Oh my gosh, asking the universe to send lots of calm and comfort your way. Thinking of you all.ReplyDelete