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FEATURED BLOG: Epilepsy woke me up this morning

epilepsy wake up

epilepsy wake upThis morning laying in bed, just opening my eyes from a deep sleep, here is what was going through my mind.

My 14-year-old daughter had her first seizures in February.

Within days, she was diagnosed as having epilepsy and prescribed anti-epileptic medicine.

On March 4, about a week after being back in school she had another seizure in math class.

The doctor gave her  a new medicine.

As of today, she has not had any more seizures.

The medicine is working.

The doctor is quick to tell me though she is not cured, her seizures are being “controlled,” “managed” because of the medicine.

“There is no cure for epilepsy,” he tells me directly and without any apologies.

The summer is wrapping up now and in less then a week, she’ll be back out in the world alone, without me by her side, knowing her every move, and being with her each time she leaves the safety of our home.

She’ll be alone in the hallways of a large, crowded high school for the first time since being diagnosed.

The anxiety that raged through me just after her first seizures, then subsided when summer vacation began, is starting to rear its ugly head once again.

My only hope is that the medicine continues to “control,” “manage” her seizures.

I rely on that medicine the same way I rely on the air to fill my lungs each and every time I take a breath.

I rely on that medicine the same way I rely on the ground to still be under my feet with each and every step I take.

I rely on that medicine the way I expect the sky to still be there when I walk outside.

I rely on that medicine to continue to do what it was created to do.

My heart hurts a little, my head is weary with each thought of the first day of school.

But not for the same reasons I once fretted over. What I’d give to have my only worry be that she eat her lunch all gone or that she find her classrooms.

What I’d give for my only worry for her to be that she makes nice friends.

This is what woke me up this morning.

Epilepsy woke me up this morning.

Until next time love each other. Be thankful for the easy mornings and simple worries.

Bittersweet

VIA: http://www.chicagonow.com/bittersweet/2013/08/epilepsy-woke-me-up-this-morning/

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11 Comments

  1. School systems in America need to educate on what to do when a child has a seizure!! Please contact your Superintendent of schools or the PTA groups of your schools to ask for that information to given to the teacher’s and students!!

    Reply
    • there is a program through the epilepsy foundation called school reach it is an hour long and free.You can find more on epilepsy foundation.org My daughter is 13 and we are finally doing it at our district on 8/21.Be persistant in bugging the superintendent.I called weekly sometimes 2 or more times a week.Good luck and god bless.

    • Just like school staff, from K-12, must be instructed and some school districts be certified in CPR. The same requirements should be enforced/required because of the students who are diagnosed and undiagnosed because of the dangers that seizures can sometimes cause.

    • Thank you so much for reading and for your kind and thoughtful words. I am so moved by all the comments.

  2. They also need to be aware of how the seizure affects a child. Just because they look fine on the outside does not mean they are OK!

    Reply
    • I “liked” this article, not because its content is pleasant, rather because of the way it describes so well the anguish any parent feels for a child who is living with a condition like epilepsy…or any illness or injury that can strike without warning. It’s that feeling of utter helplessness and frustration, a desire to rescue, to hold on and to never let go. What we must remember is that we as humans are vulnerable, every day, in every situation that life brings our way, regardless of how carefree and happy things may be going for us. It’s daunting, however, when we know for a fact, that the risks are imminent, such as is the case with seizure disorders wherein there is often no “warning” before the fall—-and the guilt parents feel can be so consuming when these dangers involve our most prized and loved gifts: our children. We are tasked with the incredible responsibility of keeping them safe, out of harm’s way and from the very days of their births, we are not only overjoyed, but sometimes even overwhelmed when we take a moment to realize this great role. The good news is that, in all of the tragedies of the past several years…tornadoes, wars, school invasions, etc, one theme has prevailed: the good in people always shines through. People want to help. People have a genuine need to connect to others and to understand others. The bad guys, the “bullies” who would tease during a seizure are the exception. The heroes rule. Trust in that.

    • Thank you! Debbie, the biggest fear, yes, that there is no warning before the fall! I appreciate your comments so much!

  3. sezuires are draining but also educational

    Reply
  4. im the oldest of my sisters,i thanxxs my sis Evelyn Cotto she was yunger then me and she took care of me from the moment i got up till i went to sleep my mam was at work sow my sis took care of me,love you Evy

    Reply
  5. I just wanted to say my heart goes out to you. My oldest son has narcolepsy and cataplexy. I have epilepsy. I had my first seizure at 19 and they did a weeks worth of tests, back then, it was an arteriogram, (if they ever say that word, kindly, say no). They have replaced many out dated tests for that. Also they did spinal taps. But, today tests are advanced, your MRI’s and ct scans etc. .They also put me on phenobarbital, which made me repeat one of my college classes.

    Also, where I’m going with this is, today there are surgeries, I would suggest you get more then one opinion. My nephew had the surgery and has been seizure free for two years. It doesn’t come without dangers, but, talking to a good neurologist will help with decisions. I have been on a combination of dilantin, tegretol and tranxene for 12 yrs, yes it took that long for a dr to discover the right combination, but, as I said today is different. There are many more available to you.

    My son has a very severe case of what I described above, narcolepsy is where he falls asleep anywhere, and I mean anywhere, also the cataplexy leaves him helpless to move. The dr. told us once that he had the worse case he’s ever seen. He was also 14. So my understanding of what you’re going through is much more then I can say. I went to his school nurse first, explained with a dr’s note that he would be falling asleep in class, if someone starts poking him or horsing around he may fall to the floor. Every muscle collapses. The nurse was wonderful, she said, we will let all of his teachers know and she made sure they understood what to do. And if need be, and my son said ok, they explained what was happening. ( education, go figure!!).

    Be persistent Mom, ask for the help that is allowed to your child for extra time to complete homework, if need be, and classwork. The success story is: I went to college, have had a career for many years and my son completed his masters in electrical engineering and has a wonderful job now. Married and has two children. His wife knew what he had and loves him so much.

    Epilepsy is just a word, people need to get educated and Mom, your concern won’t go away, because you’re a good Mom!! Stay on top, ask the school and a dr what can be done. Also guidance dept. can help also. The nurse can dispense the medicine, so make sure you set that up now. God bless and if you ever need to talk, reach out, I won’t talk as much, I am a good listener, just wanted you to know it can be done. You’re daughter has a wonderful Mom!!!

    Reply
    • Thank you everyone who commented and shared your heartfelt advice, and thank you Vicki for sharing so much personal information and encouragement with me. Thank you for all the suggestions. Today was the first day of school and all went well! But it really is day by day. Right!? Blessings and good health to you all!

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