At 11:16 this morning there was a storm in our living room. Unlike a typical electrical storm where lightening is first seen and then the thunder rattles around, the type of storm that occurred in our living room had thunder upon thunder before the lightening started to strike.
boom. Cody you look a little pale, are you feeling alright?
Boom. Momma my tummy hurts.
BOOM. Cody do you want to sit down, are you going to be sick?
BOOM! Sick, sick, sick. and then the repetitive, uncontrollable motions, rigidity coursing through his little body. I am simultaneously noting the time, wiping his brow with a cool cloth, readying the Diastat in case it is needed, trying to remember my address for the person on the other end of the 911 call, and searching for even a flicker of a response from Cody.
crack. That would be the lightening storm in his sweet wonderful brain. His color is shades of blue and gray and the goose bumps cover his body. His eyes look but they do not see.
Oh Cody how I wish I could rip from your head that cloud that causes the lightening. I love you so much I hurt when I look at you.
It was the first of Cody’s seizures that Carter has witnessed, the first one in which he had a partial grasp on what was going on. I think it scared him more than he wanted to admit for when the paramedics showed up he panicked and ran to hide in the kitchen. I will have to remember to talk with him about it in the morning.
I do not always call 911 but this one was different and I was out of practice. It has been six months since his last one, just enough time to forget a little and to perhaps even get a little cocky and think that maybe, just maybe, the last one was the very last one.
I am tired. The boys are in bed. We need to go in and wake him in an hour and a half to dose him with more Motrin as we try to keep the storm at bay.
I ache for you. I hope it is many, many months until the next storm.
I hope so too. I keep thinking it will get easier to deal with when it happens but so far that does not seem to be the case.
Your boys are so lucky that you are their mom.
You are very sweet, thank you.
Hope Cody is back to his normal self . You are one strong person and you really make me want to do so much more for my children.
I feel honored that I inspire you and I thank you for saying so. We are still battling his fever but he is feeling good and has had no more episodes.
Thank God he is asleep and hopefully comfortable..I’m sure you will all be exhausted and fragile today. My heart is with you all and I am thankful that Cody and Carter have such a wonderful mom..
I think it is only Husband and I that are exhausted and fragile today – the boys are running around the house like nothing happened. Even with a fever, Cody has more energy than I do today. I am glad they bounce back so quickly.
my heart is with you – only another mother’s heart understands at least a little of what you are going through — extreme (hugs)
Thank you. I feel like I am just starting to heal from seeing his last seizure and then I need to get through another one. I am glad he is not traumatized by them. The most stressful part of the day for Cody was having to get the super sticky monitor stickers off his legs and shoulders that the paramedics put on him on the trip to the hospital. Poor kiddo.
Hugs aplenty, Mama Shoes…Hope you got some sleep.
“Mama Shoes” – I like that. 🙂 Thanks, I got some sleep last night but am still dragging today.
I had no idea that you were going through this with Cody. I am so sorry to hear this.
It is not that common of an event and I don’t write about them all the time so it would have been easy to miss. His first one was in 2008 when he was almost two and a half. He had one in 2009, none in 2010 and then six last year. He has only had two this year. It is awful and each time is just different enough that I question that I can handle it on my own. We have medicine to stop the seizures and have been trained how to manage them but I never feel prepared, never feel like I know what I am doing. I have to just keep doing the best I can and hope he outgrows them.
Oh gosh, that is so scary. I don’t know anything about seizures but I’m assuming you have to worry about them choking and hurting themselves. With no warning signs and how sporadically they come I don’t know how you would prepare or feel prepared for those situations. I can only imagine your feeling of helplessness seeing your child experience that. Praying for your son to outgrow them too
wow. thinking of you all xx
Oh the poor little lamb! I hope he feels better!
I do feel pretty bad for him. He is still running a fever even with the medicine on board but you would never know it by watching him and Carter play today. We just need to get through this illness and hope the next one does not bring with it another seizure.
I really hope he gets better. I been thinking about you all day!
oh poor Cody and poor Carter as well! Please give them both big hugs from this side of WA and let them know I’m thinking of both of them. While you’re at it hug yourself too!!!!
Hugs all around, got it! 🙂 Thank you my friend. We are holding up pretty well although I could use a nap or two.
I’m sending a very large hug to you all. It’s a difficult thing watching your child go through something so horrific, you are very brave and so strong. I hope he is feeling better soon and the Dr.’s find a way to keep the storm at bay.
Thanks Jodi. I am suprised by my reserve of bravery during this time but one must keep going and doing the best they can no matter what I guess. He is doing well but we are on high alert since his fever is still lingering.
I am so sorry for this event. I hope Cody will be okay soon.
Thank you, I hope so too.
and every single one is a shocking experience for those who witness it.. poor wee fella and poor you too.. so hard and very well written honey.. I hope that as he does outgrow the seizures, many kids do.. c
You are right – I keep feeling like I should be getting better at managing them but each one is a bit different and each one scares the hell out of me. We are hoping so hard that he outgrows them, the doctors all told us that most kids do, but he is almost seven and past the age when most are expected to out grow them. I hate the idea of putting him on everyday anti seizure medication. I will educate myself on them but try not to fixate on them.
Hmm, I think you are very right to get as much info first, meds change and are hopefully being improved. I am sure you have researched diet, and he is on a very fresh clean diet with no processed foods. In itself a difficult ask.. I do know, but one you can take control of. Sometimes we just have to deal with a situation, a solution is not always there.. we just do our best then. And I know that you and your family are doing all you can.. fingers crossed.. keep in touch, let me know how he goes.. c
There is some room for improvement in our diets as I must admit that we are not 100% processed food free but we eat healthy and buy local and organic as much as we can. You are right in that there are those areas such as diet that we do have control over and I think I should focus more on those. What I have learned of and heard about regarding the long term anti seizure meds makes me cringe and want to run for the hills. Nasty stuff and a last resort in my book.
And I just have to say that I am very taken with your lifestyle and general way of being. I grew up on a small family farm (much smaller than yours) and knew the names of the chickens and cows we ate and who gave us eggs and milk. Our food was grown and raised up and loved before it became food. They were a part of our family but also a part of the cycle of life. I do miss that greatly.
Oh Shoes…My heart goes out to you and Cody and your family. It must have been horrible but I am glad that he is doing alright. He is blessed to have such a strong Mom and so are you as well for having such a strong little man.
His strength and positive attitude does a lot to bring out the best in me and makes me stronger. He was acting great and in such wonderful spirits today that the panic and scare of yesterday seems far away. It is always just under the surface in my mind, the possibility. It is hard to stay on edge for so long and sometimes I feel like it is chipping away too much of me. It is tough sometimes to take care of myself enough so that I can take care of him.
I’m so sorry to hear Cody has had another seizure. I hope he’s feeling a lot better now. Do you think the fact that it had been a longer time since his previous one is a good sign?
I hope Carter is feeling less scared, too.
Thanks Heather. Cody is still running a fever but he is acting fine. I used to think that the time between seizures mattered but now I don’t really think so. He went one year without one. If I averaged it I would say they happen every seven months or so.
Carter and I talked about it and I hope he understands that it is nothing to be scared of but that it needs to be treated seriously. I am a little glad that he saw Cody have one in case Cody has one while they are playing and I am not in the room. Heavy stuff for a four year old to deal with – heavy for all of us.
Oh, I hope things are better now. So scary for Carter to see. Hopefully, they will be farther and farther apart and just disappear. Sending good thoughts your way.
Thanks. We are still watching him like a hawk until the fever is completly gone. At least he is in good spirits.
I am so sorry to read about your son Cody and hope that is doing well, now.
When my daughter was younger she use to pass out when she was mad because she would hold her breath for so long, it was so scary, but as a Mom, something just kicks in and you deal with it the only way that a mom can. I’ve never had to deal with seizures, and I can only imagine, that even though you handle it well, dealing with the aftermath of your emotions has to be difficult. It’s so hard to see our children suffer.
Thanks for stopping by and saying hello on our blog today, It’s nice to meet you:)
Glad you popped over to say hi as well.
Your daughter must have had some spirit to hold her breath until she passed out when she was mad – what a way to commit! You are right about that mom thing that just kicks in when warranted. It is the processing and questioning of ones self that occurs after the event that takes time to get through. And, of course, the waiting and watching for the next one.
oh shoes! I hope that you and your lovely family are doing ok. Tell the Cody and Carter that there are tons of us who wish them the best.
Thanks Alex. I will let Cody and Carter know that momma’s bloggy friends are all wishing them well. 🙂
How powerfully this hits home for me. This is another parallel in our lives- something I rarely touch on in my own blog because writing about it is so difficult. Is it hard for you to write about it? My 3-year-old daughter has something called Eosinophilic Esophagitis. We only recently found this out after almost a year of trying to figure out why she isnt growing well – she is small and she is skin and bones. Your line, “I love you so much it hurts when I look at you” – captures moments I experience daily. What challenges we face!
I usually end up in tears while writing about the medical out of my hands things so I don’t often do so. And then I feel strange posting it because what are all of you to say? There are the kind words and wishes for wellness and I am grateful for all of them, but I wonder if it makes the reader feel out of their element and awkward.
It is strange the number of parallels our lives seem to have. I am very sorry to hear about your daughter. These things are scary and awful – we would give them the moon if only we could grasp it – and all we can do is our very best. I like to think that since we love them so hard and rise up to protect them as much as we can that it makes both us and them stronger.
Sending lots of love your way and hoping that one day soon the “last time” will actually be the “last” one.
Thank you. Oh how I wish for the last time to be it and no more!
There are many storms and tests in this life… and sometimes they are wearing… but faith and love see us through. The child finds courage in your strength. And there will be peace and fulfillment after the storm.
And from my son’s courage and trust in me I grow stronger and braver. I wish that is were not and that we did not have to face this storm but it is here and I will continue to do my very best. Thank you for your kind comment.
I have always thought that there needs to be an other button rather than always clicking on LIKE. I don’t LIKE that you have to be in this situation but I love your mother’s heart. It reminds us all that we all have our stories and our blessings. May your blessings be many in the NEW YEAR!
Thank you. I understand your issue with the “like” button in such situations.
I have a lot of good stories but like everyone else there are some not so good parts. I try my best to focus on the good but sometimes there is nothing to do but write about the bad and hope it helps me to better process it and move forward.