Redefining Typical

A Mother, A Son, A Journey…..with Autism

Seizure May 12, 2011

Filed under: autism-acceptance and hope — Cheairs @ 5:41 pm
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I am just sitting down to write about what happened to our little guy this past Saturday. To be able to put it on paper makes my hands quiver at the keyboard and my eyes fill with tears. To write about what has been replaying in my head is like trying to write about a clip from the “Matrix” – seeing and experiencing something that happened so fast, but also so slow at the same time. Only this time it was not the Matrix. It was my son. Having what we think was a seizure.

I have never felt so helpless. I truly thought I was losing my little boy. Not in the way that I usually lose him when he does not respond to his name, but losing him. I thought he was dying. The horror of that word – it frightens me so that I cannot look back at the word that I just wrote.  I sit on the couch, I pull at my hair and feel the heaviness in my stomach and tears sting my eyes. The thought of losing my little Dawson.  To type it on a piece of paper, to put it on my blog, makes it so real, but it was real. It was terrifying. In those split seconds – those minutes – my little boy was gone and I felt every ounce of his stillness in the depths of my soul.

It happened at the kitchen table. Dawson had already been up and had his usual sippy cup of soy milk. He had jumped on the trampoline. We were in our slow-go groove on a Saturday morning on the home front. My hair was sticking straight up on my head. My husband had done his morning check on the computer. Mae Mae was making her usual request for Special K.

Then it happened. A moment that will be forever stained in my head, like Georgia red clayon a pair of khaki pants. That clay will always be a part of that piece of clothing. That moment with Dawson will always be part of my being.  As I puttered around in the kitchen, I heard my husband say, “Dawson, you need to sit up.” This is not an unusual request to make to Dawson. He has low muscle tone and flops around on his chair like there is bacon grease on it – sliding this way and that way. I heard my husband make the request again, “Dawson, you need to sit up buddy.” I walked toward Dawson to help him with his ever-moving body. I can still feel the steps as I moved toward him. His head was almost at the floor. Something was not right. Oh my God, he was not moving. I screamed, “Dave, he is not breathing. Oh, my God. He is choking.”  My little boy’s beautiful blue eyes were nowhere to be found. They were rolled back in his head. I yanked him out of the chair and Dave was beside me, telling me “He cannot be choking. He cannot be choking. He has not eaten anything.” I screamed back, “Yes, he is choking. He is not breathing.”  We lifted his lifeless body in our arms, trying to do the Heimlich on his sweet body that was not choking. We were holding him in our arms, screaming, “Dawson, Dawson!” My husband looked at me.  In those moments we were helpless. I heard my Mae Mae’s voice, “Mommy, what is wrong with Dawson? Mommy, why is the toast burning? Mommy what is wrong?” I did not answer. I couldn’t.

Seconds. Minutes. I do not know how long is lasted. It felt like hours. But then there was a breath.  It was like I was hearing him cry for the first time when he came from my belly. I knew he was alive.

We carried him to his bedroom. He was pale, so very so pale, and his skin was so wet. He was whimpering in his daddy’s arms. My husband was whispering to Dawson, “It is okay. You are okay.” I was not convinced that he was okay. I thought maybe he’d had an asthma attack.  I ran to my purse to get his Albuterol. My Mae was still sitting at the kitchen table, “Mommy, what is wrong with Dawson? Mommy, Mommy…” I snapped at her, “Mae Mae, your daddy and I have to take care of your brother. We have to take care of him now.” I ran back to Dawson’s room with his inhaler. My Mae Mae was alone in the kitchen. Who was taking care of her?

Dawson was still in his daddy’s arms when I got to his room. He was breathing but looked so exhausted and so confused. I gave my little guy his Albuterol even as my husband tried to convince me that Dawson did not have an asthma attack and that Dawson could not have been choking because there was no food in front of him at the table. Then what happened? What just happened to my sweet baby boy?

I headed back to the kitchen to get the phone to call the doctor. There was my sweet Mae Mae sitting in the same chair, knees to her chest, arms wrapped around her little princess pajamas. Oh, my Mae Mae. What have I done? I walked over to her with tears in my eyes. I know that little girl. I have been that little girl – so afraid, so scared. Being left alone in a room while her brother was in distress. I know her pain. I caused her pain. She needed me as much as Dawson did in this crisis and I left her sitting by herself. I had snapped at her.  Oh, my Mae Mae I am so sorry.

I walked over to her and she looked at me and I said, “Sweetie, that was really scary wasn’t it?” This time she was the one who breathed. The tears came flowing down her cheeks and she sobbed, “Yes.” I brought her to my chest and felt her warm tears on my cheek.  I was crying too. She held me tightly. “Oh, sweetie. I am so sorry sorry. I am just so sorry. I am here. I know it was scary. I am so sorry.” She cried. I held her tightly. I touched her head, “I am so sorry I left you. I am just so so sorry.” She lifted her head from my chest. Her hair stuck to her face from her tears.  “Mommy, what is wrong with Dawson?” I looked at her, “Sweetie, I don’t know. I just don’t know.”  “Can I go see Dawson?” I take her hand, “Yes sweetie, you can see Dawson.” We walked to Dawson’s room. My little guy was still curled up in my husband’s lap. Mae Mae walked over to Dawson and touched his leg, “Buddy, it is going to be okay.”

I looked at Dave. We were numb. I left the room to call the doctor’s office. As I dialed, I thought, “Could it have been? No. Please Lord, no.  Not a seizure.” I have read the statistics. I know that children with autism are more likely to have seizures. My brother, who is no longer living, had epilepsy. I remember it like it was yesterday – his seizing and my parents having to take him to the emergency room because they could not get the seizures to stop.

I had hidden the thought of my son ever having a seizure far away. I had hidden it so well that I had convinced myself that it was just never going to come out, that a seizure would never happen. Well, like all games of hide-and-seek, the game does have to end.  Whoever or whatever is hiding does have to come out.

I do think that my son did have a seizure four days ago on that ever-so-typical Saturday morning at our house.  We have talked to several doctors and we will move forward with testing for him – EEG, MRI, overnight stay at the hospital. This will all have to be done. We will use every tool that we have to help him, and we will hold his hand and hug him tight.

We’ll also talk with Mae Mae. We won’t leave her alone. We’ll wrap her up and be present with her.  

As for me, I’ll hold my husband’s hand, and choosing a hot cocoa and long walks when I am stressed. That is what I will have to do.

And I will write. I will share. I will allow others to hold us, to help us. That is what we must do. I will take that breath. We will all take a breath and breathe as a family.  I feel a hand on my shoulder. It is not Mae Mae, but someone I know who I cannot see. I feel their presence. This time, they whisper to me, “Cheairs, it is going to be okay.”

Copyright © cheairs graves May 11, 2011


24 Responses to “Seizure”

  1. jen_alluisi Says:

    Oh, how scary. Scary, scary, scary. I’ve been there, sort of. Nearly 2 years ago, my husband (a Type 1 diabetic) had a grand mal seizure in the middle of the night. Woke me out of a sound sleep because of his seizing, and I was screaming his name and trying to wake him up and crying and trying to make him talk to me. We’d been together (in total) 7 years then, and I’d never seen this happen. To his knowledge, he’d never had a seizure before. I had called 911; he sent the paramedics away after his blood sugar was higher. We ended up in the emergency room anyway when, 30 minutes later, he told me his tongue was numb and he was having trouble breathing. We spent all night at the hospital, coming home exhausted at 7 am with no more answers than we had the night before. I was terrified. I still am when I think back on it.

    I know it’s not the same. My husband is not my son. He is diabetic, not autistic. It’s different. But oh, I know the scare. And I am so, so sorry. You need to be held.

  2. Kate Says:

    I cry as I read this. You put such emotion in your writing. So honest. I have had several students with seizure disorders and seen most of them, at one time or another, experience a seizure. It is scary, you don’t know what to do. My thoughts and prayers are with you as you go through the many tests and doctor visits, and the waiting, that this experience requires. Love you, Graves Family!!!!!

  3. Ann Davies Says:

    Cheairs, I’m so sorry! I can’t even imagine how scary that was for y’all! I’m so glad Dawson is okay now. I’ll be praying for those tests to be as pain free as possible and that Dawson is healthy! You and Dave are amazing parents-no doubt! I hope this Saturday won’t be nearly as stressful! Hang in there!

  4. Ms. T. Says:

    It is most assuredly going to be ok. Will things be difficult? Yes. Scary? Oh my gosh, yes. Terrifying even. Will things turn out the way you initially planned or wanted? Probably not. But in the end, you will come together as a family and wrap your arms around each other and you will get through this. You’ll come out on the other end with your hearts in each others hands. This I know is true. Y’all have all of my love and support. xoxo Michelle

  5. Karen Says:

    Oh, Cheairs! I am so very sorry! I cannot imagine how terrifying all of that must be! I am glad to know your son is okay now! We all know that you will do whatever it is you need to do for all of your family! It WILL be okay! Sending thoughts and prayers and virtual hugs your way! Wish I could do more!

  6. And it will be. I promise. Deep breaths, long walks, hot cocoa up the wazoo. I am so deeply sorry, Cheairs. I cannot imagine how scared you were/are. The only time I even brushed with an experience that intense was last summer when my baby had meningitis. That was the scariest time of my life. I’ll be holding you in my heart. Please know that if there is anything that I can do, just let me know.

  7. Cheairs Says:

    I can not begin to thank you for all of your support. I shared on my facebook page that we have gone the rest of the week with out another “incident” . It took me two days to write the post. I really felt like I was siting down to talk to a good friend and just cry to them. The friend looking at me and knodding their head when I would get stuck and could not describe my feelings… I thank you for being that friend. We will take it one step at a time. Dawson really has been all smiles and Princess Mae Mae is up to her sparkly self. When kids are ok then MaMa is much more likely to be a okay. For your support….for your prayers…for your words of kindness and care…I thank you!!!!

  8. Catherine Says:

    Cheairs! I am so terribly sorry to read this. How terrifying for all of you. The silver lining is that Dawson was home with you guys when it happened and that Dave was in town as well. I wish we lived closer so we could offer support. Know that you are in our thoughts and prayers. Keep us posted as you proceed with testing and diagnostics. Thinking of you.xoxo

  9. Oh my word, I’m so sorry to read this. There are many hands on your shoulders, and it WILL be okay. So glad to hear there hasn’t been a repeat so far. My thoughts are with you.

  10. Malinda Day Says:

    Cheairs-My heart hurts for you. I will pray for you and your family. I love you-Malinda

  11. Floortimel lite mama Says:

    Many many hugs
    My SIL has seizures and its so very scary

  12. Diane Says:

    So scary and confusing. I feel for your wonderful family and deeply pray for no more incidents/seizures. Hang in there and know we are only a few feet away!

  13. Donna Says:

    My heart goes out to you…believe me I recently experienced my worst nightmare. Last July, while on vacation with my only child, then 13 and my husband, my son had a seizure in the morning around 9am just after waking. We felt exactly as you and your husband did, it was horrifying one minute he was telling me he was tired and the next he was convulsing in the bed, lips turning blue and arms clenched. My husband has been a homicide detective for 22 years and he thought we were losing our son at that very moment. Our minds raced we thought it was a brain aneurysm, stroke, we didn’t know. Neither of us have ever seen a seizure nor have it in our family history. Frantic, we called 911 and by the time EMS came he was coming out of it, but his speech was slurred so we thought he had brain damage. It was terrifying. The ride to the hospital seemed to take forever and by the time we got there he was almost back to normal. I couldn’t believe it, tests were all negative. He was released after several hours and was diagnosed with having a seizure, possibly from lack of sleep cumulatively. Back home, we had sleep deprived EEG and regular EEG both of which showed absence seizure spikes. This meant he was having them during the day, unknown to us, where he would just “daydream” not like the one we saw. He was put on medicine and everything seemed fine until this past week. At 6:50 am just before school while brushing his teeth he dropped to the floor. I heard the noise and ran in the bathroom and there he was sitting upright, eyes rolled back, arms outstretched and mouth open having a seizure. I was able to put him on his side until it was over keeping my hand just below his head so he wouldn’t hit his head on the floor, then he began snoring. Keep in mind my son is now 6 ft tall and 160 lbs. My mom and stepfather were there to help me bring him to his bed, where he was disoriented and kept trying to get up, he was so emotional and all he kept saying was “i love you mom” “i love you mom” and hugging and kissing me…..the tears were streaming from my face as I cradled him and tried to reassure him he was okay. He then fell asleep for 5 hours. After 10 months we had a false sense of security with him, it took 2 months for my husband and I to not cry every time left the room and be okay with letting him go somewhere without us and now we are back to square one again. The doctor said he has to get 7 1/2 hrs sleep MINIMUM or he’s increasing the medication. He normally gets only 6 hours sleep, not enough for a child with this condition. I’m sharing my story with you so you know that even though the first time was horrifying, the second time, while still horrifying I was prepared and knew exactly what to do. The most important thing is knowing what to do. Do alot of reading on the condition and you will be prepared should this happen again. I hope it never does…..but I am here if you have any questions at all. My best to you and your family…

    • Cheairs Says:

      Donna my heart just broke when I read your story. Your kindness in sharing your story and offering your help well generous does not even begin to cover it. We are still waiting on testing but we have not had any more “incidents”. Please know that your sharing your story touched me so and helped me. I hope that your son is doing ok.

  14. Marijean Says:

    Oh wow — I’m so sorry I didn’t know this until just now. You guys are in my thoughts and prayers.

  15. […] need to put together a social story for Dawson to help prepare him for his MRI and EEG, which will be taking place very soon. I have been asked many times, “What is a social […]

  16. […] page as a note. It is a bit scattered, but that is how I am feeling today. I am feeling scared. *Here is the link that will give you the history on why we are having an EEG and MRI for our little g…   Leave a […]

  17. ((hugs)) Hoping you find answers and peace. ((hugs))

    • Cheairs Says:

      Thank you for your hugs. Please know they were felt! Dawson is doing good. The tests came back clear. So thank you for the support. Thank you also for your writing! I so enjoy your blog!

  18. Perla Says:

    Cheairs, I feel your pain. My daughter was recently diagnosed with a seizure disorder. It has been almos three weeks that everything happened and up to this date everytime I remember whes she was going through the seizure I start crying, as you as well, I felt helpless and really scared of losing her.Many people does’t understand how shocking that can be, I’ve had seen people having a seizure before and for sure I reacted with calm, but whith my daughter was another story, I couldn’t and still cannot believe that something so terrible as that happened to her.
    We have to have faith and believe that our beloved kids will be ok because that is what God want for them,

    • Cheairs Says:

      I am so sorry to know that you daughter has recently been diagnosed with a seizure disorder. I am just so, so, sorry! Please know that you are not alone.

  19. […] Dawson had a seizure. His second seizure in six months. […]

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