Invisible Illness (a mother’s perspective)

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Hey there!

I can’t tell you how excited I am to see November 1, October seemed so very long. One reason was because my sweet son Daniel had a bout of seizures on October 12. I was awakened at 140 am to Daniel seizing in his sleep, now if you followed my story you will note back in March 2012 Daniel had a febrile seizure. Which he’s had about 4 more since then. I know exactly what to do.  Time the seizure,  take his temp, give him motrin and monitor him for 24 hours.

So, I watched over him while he seized (so hard to do) and took his temp…his temp was normal.  This sent up red flags. I immediately called Children’s Hospital,  my mother and Ladarren so I could figure out what to do. We decided the best course of action was to bring him in immediately.  By this time Daniel was back to his normal self calling me names and being goofy.

We head to the hospital not knowing the entrance we always used closes at 9 pm, we arrived before 3am. While walking to find the next entrance,  Daniel has another seizure.  Thank God I was holding his hand or he might have hit his head on the concrete.  All I could do was cry. There was a gentleman who was leaving work at the hospital that Ladarren chased down to ask him for directions to the emergency room entrance.  Thank God for him as well. He got into a vehicle with strangers and guided us to where we needed to be. Once inside they take Daniel’s vitals and the waiting game begins.

We get a room 40 minutes later and wait some more. They monitor Daniel for several hours and he seems ok. At 9am they discharge us, I am signing my last paper when Daniel has another seizure.  That’s 3 with NO fever, I knew something was really wrong.  The great thing about this one is, the nurse witnessed it and timed it.

Long story short we were referred back to the neurologist and after testing Daniel was diagnosed with childhood Epilepsy.  The big “e” word,  something I honestly feared from his first febrile seizure.  I couldn’t believe the diagnosis.  The good thing is Daniel could potentially grow out of this (which is my prayer), but even if he doesn’t I needed to not be afraid.  The first few days afterwards, I didn’t let him do his normal activities, which was probably like prison for a very active 4 year old.

I soon realized that I couldn’t let the diagnosis change Daniel’s world,  that’s worse than the actual diagnosis.  Do we need to be more alert Absolutely,  but I Don’t want fear to limit him. I prayed,  did research and had a dear friend connect me with another mother whose son has epilepsy as well.

God allows certain trials and although I enjoyed the ignorance of not having the actual label for the disorder before,  that changes nothing.  This is what we deal with,  this is our lot. He now takes s daily medication and seems to be totally fine. He may never have another. I will never know for sure, but regardless I entrust him to my Heavenly Father

Prayer Warrior Mommy,

Reneé

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  1. #1 by starsinhereyeblog on November 3, 2014 - 4:23 pm

    The thing about labels, is that it gives you a place to start and a treatment plan. That’s it. It doesn’t have stop people from living life. Its scary ( I don’t know from your side, but I know from the other end) but God has put you on a path to allow him to live a full life. I am glad things are already going so well. I will continue to pray for him and for your entire family.
    ~Audrey

  2. #2 by Michele G. on November 5, 2014 - 3:02 am

    My son having epilepsy I have become a pro at handling it and the steps to take from beginning until it ends. I stay strong for him and help him come out of them and make sure he is OK then I go to another room and break down. He has had them since he was 5 and every single one breaks my heart because seeing your child like it is horrible. But like you said in your blog its what we were dealt with and I will be there for him every step of the way holding his hand and loving him through it.

    • #3 by radical7even on November 8, 2014 - 10:34 pm

      Hey Michele,
      Thank you so much for sharing. It is heartbreaking to see them go through this, but trusting God definitely helps ease through this new situation.
      May God Bless You,

      Reneé

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