Tears of Fear?

I just can’t stop crying today!

I just cried in the bakery, and then in our Pediatrician’s office and now I am crying as I write this. Or rather try to write this because I am so overwhelmed with intense gratitude, joy, and relief that I can’t think straight or, well, again, stop crying long enough to be able to type clearly! You see, today is a big day in our family, a big, big, BIG day!

Today, February 6, 2014, we celebrate our littlest man, #4, being seizure free for one entire year!

Today is a day that I never thought would come, that I feared never would come, that I so desperately hoped would come. And now it is here and an entire year of fear is pouring out of my eyes

Let me tell you this, it feels phenomenal to be letting go of fear; to be fully exhaling for the first time in 365 days (or at least feeling like it.) I feel like I have been holding my breath just about every single second for the last year, hoping, praying that the next second wouldn’t bring another seizure; that the next second wouldn’t bring me to my knees, watching the clock to know when to give the emergency medicine to stop the seizure, to stop potential damage; that the next second wouldn’t push me to yell to my sons to grab the phone and “bring it to mommy quick” so that I could call 911 and get my son oxygen immediately as we raced to the Emergency Room, again.

Today the only thing the next second is bringing is a smiling, laughing, and curious, two and a half year old acting like R2-D2 by walking around with a storage bucket over his head while making all sorts of beeping sounds. Okay, and it is also bringing a stubborn, mischievous, troublemaker, but that side of him doesn’t often faze me because I am just so grateful. So grateful that he never had another seizure; that he never received the final life long diagnosis of Temporal Lobe Epilepsy; that I won’t ever have to check “epileptic” on the thousands of school forms; that I won’t have to tell him, “Sorry babe, you can’t get a drivers license;” that I don’t have to worry that if I look away for one split second that a seizure will start and I will miss the opportunity to give him his emergency medicine on time, just as I did during the last one.

Yes, I am grateful for so much. But today, today I think I am most grateful for the tears for they are finally pushing all my fears and sad memories out of my heart. The tears are forcing me to finally feel all that I have felt for the last year and half regarding this matter but was afraid to feel because I felt I needed to be strong, and calm, and pulled together to manage the situation. The tears are bringing the traumatic feelings of having to watch my baby son seize numerous times, of having to watch his lips turn blue and his eyes become black and distant and gone, of having to then feel that it was my fault because I didn’t give him the emergency medicine fast enough and that is why his last seizure was so horrific, to my mind.

The tears are helping me to breathe a little easier and for that, I am so grateful.

I have lived much of the last year in a constant state of anxiety; anxiety that a seizure would strike, that the meds wouldn’t work, and that, well, that shit would hit the fan and my darling precious baby would suffer damage from the seizure. After all, that was starting to be the doctor’s concern. All of the doctors, even though none of them agreed on #4’s final diagnosis because he presented different than the norm, agreed that his seizures were too severe and potentially damaging to be left untreated. They all agreed that one more seizure and serious precautions would be needed. So I spent a lot of the last 365 days in a quiet state of panic, slowly counting down every day we survived, seizure free.

At first we went two and a half months, the longest period without a seizure. I jumped for joy. Then it was three straight months, and four and five and six. Soon I stopped counting because I felt safe, I felt that we were in the clear. Then September came, bringing the anniversary of his first seizure – and the beginning of germs season at school, a potential trigger for him. My anxiety increased; I just wanted to get through the sick season seizure free, I just wanted to get to today to say, “YES! We have gone one year seizure free!” because I knew if he did make it, that the doctors would feel that we were indeed, in the clear.

So here I am, here we are, in the clear and yet everything seems blurry because I am crying my eyes out over such immense relief that I can let go of my fears…and such intense love for my little guy.

* * * * *

So here I am, totally over emotional wondering if I should post this because it has nothing to do with yelling. But it does. I held my tears of fear in for over a year. While my fears might have been legit, holding them in probably wasn’t. I mean, it was a normal thing to do, but based on how good I felt today, how I finally felt free like I was me and that I wasn’t hiding anything, I wish I had let them out a little sooner.

Bottled up emotions do me no good; they just push up against me on the inside, day in and day out, urging me to open my big fat mouth with a huge yell so they can get out. I used to be really good at letting my emotions out; then I became worried what people would think of me. So I stopped. And I started keeping it all in, trying to stay together for the sake of opinions surrounding me. The truth? The four most important opinions to me (well five if you include my husband) are those of my kiddos.

I know bottled up emotions make me cranky and prone to yelling and probably create a not so high opinion of me at times. Sure, my kids are going to have not so high opinions of me at times – I am cool with that and welcome it as it probably means I am parenting right! But if I can prevent some of those moments by bottling up less and sharing more, I am going to do so. Today’s tears proved to me how much I have been holding in this past year. Yes, year. It is no coincidence this year was harder to yell less than the previous one where I shared more! So there is another reason I am grateful for my tears today: they have opened my eyes up to the fact that I need to start opening up more so that I can more easily yell less and love more.

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17 thoughts on “Tears of Fear?

  1. Congrats OR!!! That’s an amazing feeling of relief. My DD had a febrile seizure when she was 13 mos due to a high fever. The docs told us it could happen again but that she’ll grow out of it by the time she’s 5. I held my breath each and every time she got a fever for the next four years. Thank god it never happened again but I couldn’t let go of that fear for four years.

  2. I am so glad you shared! It may not have anything directly to do with yelling but indirectly it does, it definatly does. Congrats to you and your little man. Keep sharing. I love it. It makes you seem more human and gives me more and more confidence that I can do better. Thanks a million times over! Go celebrate!

  3. so very happy for you and your family!! and wow, yes, no wonder this past 365 days have been so difficult. an anxiety like that literally weighs a person down, until even the smallest task seems overwhelming. add in 4 kids, and i’m impressed you all made it through the year mostly sane! congrats, and here’s to a whole new 365 days!!

  4. That’s wonderful news.

    By the way my best friend growing epilepsy but it was manageable, she drove and she kind of “feels” when she is off. She drove for a long time but now she isn’t, it comes and goes. I then married someone with epilepsy. It is a huge thing that my hubby can’t drive esp when you have a baby you have to wake up to take and fetch him from work. But it could be a lot worse. He is on a lot of medication… But you know I am grateful that he has a job and he is ok. Brett only discovered it in university although it was a birth defect.

  5. Oh damn. How terrifying and heartbreaking. I was holding my shoulders up to my ears reading that. Then I let them down toward the end.

    Hugs to you and your little bug. I’m so glad he’s doing better.

    Thank you for your tireless dedication to helping us all out. Your blog started me on my quest to be a better parent and its working. I’m over a month yell-free. We’re all feeling so good.

    Thank you thank you thank you.
    Lisa Solar

  6. I am so overwhelmed to read about your #4. Mothers have sleepless nights even if her baby sneezes once and you were dealing with such a big thing. God bless all of you and i am sure your all kids will lead a healthy and happy blessed life because they have got a super mom :)

  7. Thanks be to God!!! I went through this with my son when he was three. It was the hardest thing I ever had to do, I felt helpless. Especially when he was having a seizure, I was so afraid for him. We struggled that year too, praying and watching over him. He has been seizure free, and he’s turning nine this year. Keep up the good works,Orange Rhino Mama, you can do it!!!
    Be Blessed.

  8. I cried for you, reading about your tears! I’m so happy for you, & your little boy. You’re a stranger to me, but I hold you in the highest regard. Thank you for all you do to help other families. Thank you for all that you share of yourself.

  9. I came to your site for your no yelling challenge, but am so much more blessed by this post…this is what I typed when I shared it on my wall…
    we are almost at 2 months…Patrick’s weren’t like this little boys…his were short, but often, multiple a day, sometimes 10 or 20, or so it seemed…but it was still scary…he fell out of bed, one time he fell down the stair…before we knew what hey were he let go of my hand in Old Town, thankfully we were on the sidewalk and not the street…he unbuckled his seat belt as we were merging on the interstate…he would put things in his mouth, small things that he could choke on…the fear in his brother’s eyes that knew what was going on, especially Jacob…the fact that he is still scared to have a favorite small toy with him in bed because for months we said he couldn’t in case he had an episode…his doc says two years is our mark…but one year will also be a great day…there are still fears, like when we ran out of medicine during a snow storm, or when we accidently skip meds…but come Mikey’s b-day a week from tomorrow we will be at 2 months…then hopefully we will make it to Jacob’s b-day next month and that will be 3…Christmas (give or take a day or two) is or day…I think it is a perfect day…honestly he doc didn’t expect this third med to work fully on his own, we were looking at multiple medicines…so in reality to me, this medicine working on it’s own was an is a Christmas miracle…and I thank everyone for all their prayers and hope they continue…

    • I worry that we will get to a point, say 6 months or 9 and then he will still have one…it is in a way like being in remission…but you know what 1 day seizure free was a big deal…because for 5 months he had multiple a day and night and was not getting good sleep…because of that he really was an overly sensitive, angry kid…I mean who wouldn’t be if you woke 4 times a night have a mind exhausting seizure…for 5 months and before meds had just as many if not more during the day…they were draining…once he got on his new meds his attitude change, he got the rest he needed…and things, though not perfect…are much more pleasant…his trigger was being tired…which his seizures were causing him to be tired…so it was like we a puppy running in a circle chasing our tails…

  10. This was such a wonderful post, I am so glad that you put it up. Last fall my son ended up being life flighted to another state because of breathing issues. I never cried through the whole experience…my husband was enough of a wreak for both of us. Even though he has been cleared to return to normal activities my heart still stops whenever he begins to cough or show symptoms of a cold. That constant fear can totally have an effect on my parenting. The best thing I can do to get a handle on my fear is to take a deep breath…a trick that works when I feel like yelling too!

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