Sunday, January 8, 2017

It Was Everything

Oh, y'all. Life is so messy and complex and mysterious and so often joyful and too often scary and it's all mixed up together in a way that I can't begin to understand.

Last night's party began as such a good time. Burgers cooking on the grill and basketball games.





Even August got into the fun and he determined that he, too, could play basketball and as you can see, his daddy helped him. 

The ladies chatted and presents from Mexico were presented and sisters wore their new silver earrings, shining in the light, and Hank passed around a bottle of Xtubentun that we brought him back for everyone to try sips and children were playing and Maggie went from one pair of arms to another and then down to the floor in her beautiful lavender dress with a tutu, her birthday outfit, and the bigger boys played ball like crazy and rode bikes and then everyone ate their delicious burgers and hot dogs and slaw and beans and then, before the cake, Owen came to me and said, "Mer, I need to ask you something," but he couldn't remember the words and I saw that his eyes looked different and his mama and I talked to him and he grew more confused and the party was whirling around around us and we got him on the couch and he kept saying, "I'm fine," but he wasn't and then he puked and then he had what I have to say was probably a seizure, his hand twitched, he was unresponsive. 
His Boppy sat beside him and held on to him, I knelt before him and held on to him, gently, all so gently, his mother and father right there, holding him too. After a while, he came back a bit and we took him into his parent's bedroom and got him into bed and he slept hard but he knew who we were and...the cake? The happy birthday song? The guests? The one-year old Maggie? 
Ah. Life went on.
Boppy sat beside him as he slept and I laid on the bed behind him and we watched the regular breath of him, and May came in and laid behind me and we all just loved him and Lily and Jason went out and took care of the Maggie girl and we heard the Happy Birthday song. 


We heard the oohs and the ah's and Lily and Jason kept coming back to check and then Owen woke up, mostly himself, and wanted to go be part of the party again but first he sat on the couch with his mother, cuddled up in his name blanket and sipped some water and then, soon, he wanted cake and he had cake and by the time we left, he was himself and Lily sent a picture later of him playing Uno, his new favorite thing, with his daddy and his friend Gabe. 

It had been almost five weeks, I think, since his last episode and we had all been holding our breaths, not even daring to mention anything, not willing to tempt the gods, you know, meanwhile he had the MRI which showed nothing and we have started the journey, the process to get him into the Shands Pediatric Neurology clinic but now of course our efforts shall be redoubled because this is real. 
We videoed the seizure which felt so weird and wrong but we know that it's the right thing to do to show the doctors what goes on during them and Lily even said that oddly, she was glad that it happened when everyone was there because we could all help (not that there's really anything to be done except to watch and to wait) and that she thinks that he knew he couldn't have one while Bop and Mer were in Mexico and who knows? And May said, "Well, at least you didn't have to drive over here, you were already here," and all of this is true and I'm glad that Maggie is only one so that she doesn't know that her birthday was interrupted briefly but could eat her pink cake and play with the presents she had no idea she was going to get. 


That was after the bath she had to get to remove pink frosting from her everywhere's. 

And so that's how it went, Maggie's first birthday party and it was all of the things of life and of course I texted Elizabeth because she is my rod and my staff throughout all of this, my comfort and my source of information. 
Now we have more of a perspective on being able to tell when a seizure is about to begin and that is a helpful thing. His other grandmother and his uncle and aunt from Jason's side of the family were there and so they know now too, what to look for, to notice, to be aware of. 

Here we are on this journey of life which takes paths we would give anything to avoid but sometimes, we simply have to accept. As we sat last night with Owen while he was in the midst of it, I felt the now-familiar clinch of my gut, the panic response, but I knew in my heart that we had to simply accept what was real, to be there, to be calm, to be present, to love. Lily silently wept, Jason gently rubbed her back, over and over and we all gave comfort as we could and what else can be done until we can find out what's going on and how best to deal with it?

Here. It froze last night so yesterday I went out and picked some of my most beautiful camellias before the cold browned them.


The sky is blue as can be today, even though it is cold and it's going to freeze again tonight. We've had our oatmeal and I am going to clean out the hen house and Mr. Moon is reading the book his sister sent him. 


She figures prominently in it and he is so proud of her, as are we all. 
As the guys were playing basketball yesterday, Hank told Gabe that Owen's great aunt is in the Basketball Hall of Fame and Gabe was suitably impressed. 

Family. Family. Family. 
That which we are born into and that which we love into.

And I cannot end this post without mentioning that Waylon, who was at the party with his amazing mama, Shayla (Billy had to work) gave me a hug. 
Did you hear that? WAYLON GAVE ME A HUG! 

Well, we go on. 
Again and again and again, and we have each other to celebrate with, to share comfort and pain with, to sip from the bottle of sweet honey liqueur with, to hold on to, to sing with, to play with, to stop and be silent and bear witness with. 

All love...Ms. Moon

29 comments:

  1. Your family shines so bright you make my eyes water. So much love.

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    1. And so much love back to you and your beautiful family. Somehow, we ARE related. I have no doubt about this.

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  2. Oh love and the whole wide wolf world underneath terrifying and beautiful. Elizabeth is my standard bearer too though I don't tell her often enough. Love from somewhere out in the Pacific Ocean.

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    1. Yes, sweet and wise Rebecca. Terrifying and beautiful and we can only bear witness to both.
      Elizabeth is an angel, a goddess, a warrior, a kick-ass woman/mother.
      We are so lucky to have her. And to have each other as well.

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  3. Oh my goodness, Mary. Poor little Owen but Lucky little Owen in the same breath. Your family is the loveliest, most genuine example of how to do it. I do hope he gets the expedited medical attention he needs, like right now! Thank you for this post, puts everything into perspective.

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    1. We hope he gets the care he needs too. Thank YOU for your words and wishes.

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  4. I don't talk about this much but when my daughter was a baby she was diagnosed with Neurofibromatosis. Oh, Mary. It was so scary and awful. All the appointments and genetic testing and MRI's. We had some sort of appointment 5 days a week for 3 years. (Speech and hearing, physiotherapy, occupational therapy, doctors, paediatricians, geneticists, special needs preschool to name a few. ) So when I say I understand what you are all going through, I do. I'm sitting, holding space. No words. Just holding space.

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    1. Oh Birdie! This gives me so much more insight to you and your life. PTSTD upon PTSD.
      Thank you for holding space.

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  5. That "sweet honey liqueur of light" it has a sharp bite to it sometimes as it goes down the throat.
    Love to precious little Owen and all his family.

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    1. Yes. That sweetness with the bite of anise.
      Thank you, dear Liv.

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  6. Videotaping is a wonderful idea. When my son was first having seizures, I honestly could not get them videotaped...it was usually at night and so chaotic. And, what we take for granted now on our phones was, back then (8 years ago), something "new." But those videos are priceless for the doctors to actually see what is happening.

    Thinking of Owen and his family.

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    1. Yes. As obtrusive and weird as it seems, I know it was the right thing to do. Thank you, for thinking of us.

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  7. I hate that Owen's family is going through this fear and uncertainty. I know it must be so scary and sad. I hope you all can focus on the now, and not fears about his future, because who knows what developments that will hold, medical and health-wise. Love to everyone. I wish it wasn't happening though. Wishing them courage.

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    1. We have great hopes. And as Owen told me today, "I had a seizure during Maggie's birthday. It wasn't a big deal."
      Bless him.
      Bless him.

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  8. I'm loving on you all. Reading this I silently cried. A scary situation but one you just need to go through. I feel so helpless so I'll just continue to think of you all.

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    1. Thank you, Jill. I am grateful for that.

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  9. I am so sorry to hear about Owen, Mary. I am glad you got a tape of it. Poor little thing. I send my love to him, all of you, Lily and Jason. He has a beautiful, strong family full of love to back him up. And Elizabeth. And Magnolia's party could go on. Life is complicated but you do what you have to do as you are. Sending you a warm hug. I love you

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    1. Joanne- you are such a sweet person in our lives, always there. You have no idea how much we appreciate you. Thank you.

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  10. Your family know how to support each other so beautifully.

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    1. No matter what happens, we do know how to support each other. It is a miracle of love.

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  11. I am so sorry this is happening to that sweet little guy. I'm hoping for the best for him, and for all of you.

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    1. Thank you. Me too. All of us are hoping for the best. Owen is the sweetest, he is my prince.

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  12. So glad sweet Owen is surrounded by such a loving family. Fingers crossed that Shands can sort this out and treat him quickly.

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    1. Thank you, Laura. We are hoping all of that as well. And doing whatever we can to make it happen.

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  13. Oh, Lord. I'm so sorry this happened again. But YES, it's great that you were able to capture a video to show the doctors. I had SO hoped that we'd seen the last of those spells.

    Somehow it's a comfort that Maggie's birthday continued amid this sad development. Like, bad things happen, but life continues too, and all the happiness as well.

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    1. It's just a funny thing, life. Isn't it?

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  14. Oh. I'm only coming here from my own Seizureland and now my tears are flowing at all this Moonland love and your sweet words about me. I hate that Lily is going through this and wish I could sit with her and just hold her hand. That Owen is a strong boy, and he will be fine. Seizures suck -- they are unlike anything else and so godawful to witness, even when you're experienced like me. I love ya'll and am happy to help in any way I can.

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    1. Oh, Elizabeth- you DO sit with us and hold our hands. That is exactly what you do. And we feel you and we love you and we are so very, very grateful for you.

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