My Baby Has Epilepsy

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You never really know how you are going to react to bad news.

I have been dealt some bad news in my life and I would like to say that by now I have it mastered.
I would like to say that in the doctors office I got on my knees and prayed.

But I didn’t.

I was so confused.
So overwhelmed.
So scared.

The doctor said, “Your daughter has epilepsy.”

I just sat there… sad, broken, and terrified.

In order for this to make any sense I need to back it up to last fall…
MaryGrace had about a dozen seizures over the course of a few days.
In hindsight… she may have even had a few in the months prior. (some seizures can be much less obvious that others)

I took her to the hospital and within a few days she was getting an EEG. Everything came back normal.

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I thought to myself… Ahhh, good. Maybe it was just some fluke thing will never happen again.

Everything was going well until about a month ago when she had another one.

It was time for her follow up so I talked with the pediatric neurologist about the past episodes as well as the more recent one.

By the end of the appointment my daughter had a diagnosis, a label… a neurological disorder.

If you are like I was… you have probably heard of epilepsy but you are not quite sure exactly what it is… well, here ya go:

epilepsy: a neurological disorder marked by sudden recurrent episodes of sensory disturbance, loss of consciousness, or convulsions, associated with abnormal electrical activity in the brain.

Essentially MaryGrace goes stiff in a full starfish position and then shakes.

It is the most terrifying experience as a parent.

There is nothing you can do to stop it.

When it does finally stop she cries the most heart wrenching cry you have ever heard.

It really scares her.

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So there we were sitting in the sterile office when the Doctor tells me that my daughter has epilepsy.
In my gut I knew it to be true… but I couldn’t seem to wrap my brain around it.
I still can’t, really.

A million questions were swirling around in my brain.
Some I was able to formulate in to words and others were written on my face.

How did this happen?
What does this mean?
How do we fix it?

The Doc explained that they don’t exactly know the hows and whys of this disorder. He also started giving me some reassuring statistics, like… 2 out of 3 kids grow out of it.

The question that must have been written on my face was answered when he looked into my teary eyes and said that it wasn’t my fault.

I still get bogged down by wondering if during my pregnancy there was something I did wrong? something I ate? or too much stress?

Sometimes I lay in bed at night and replay the pregnancy. I replay the crazy season while she was growing in my belly. Is there a reason for all this? I can’t help but to feel like it is my fault.

But… I am working on that part of all this.

The Doctor prescribed some meds for her. She has to be on them for at least 2 years. When she has gone 2 years without a seizure they will consider the epilepsy in remission and try taking her off the meds. That’s when we will find out if she is one of the 2 out of 3.

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MaryGrace has been the happiest, silliest, and most smiley baby that I have ever been around. She is truly joy-filled. Unfortunately, the main side affect of the meds is agitation. So now she is a bit more grumpy, a little less smiley, and a lot harder to please.

But the consequence for not taking the meds is far scarier than a grumpy baby…
New research has found that seizures that go untreated/unmedicated are causing intellectual damage in many forms.

Therefore… we are going with the meds. I want my girl to be happy, healthy, and smart even if that means a rough couple of years.

We are going on 2 weeks now without seizures… only 102 more to go!

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I am focusing on the next 2 years and praying for a healing.

I can’t weigh myself down with the questions of her future. I can’t get wrapped up in how this will affect things like school, sports, driving and having a “normal” life.
I can’t.
Not right now.

It’s going to be a long journey.
Can I ask you a favor?

Will you pray for my girl?
Will you pray for my family?
Will you pray that the seizures go away?
Will you pray that the meds don’t make her too crabby?
Will you pray that her brothers are patient with her?
Will you pray that all the kids get the adequate amount of attention despite the disorder?
Will you pray for Shane and I?

If you will… Thank you.
Seriously, thank you, from the bottom of my heart… I believe in the power of prayer and I know my God is bigger than any diagnosis.

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19 thoughts on “My Baby Has Epilepsy

  1. Jack and I will be praying for a healing. You will all be in our prayers . So grateful we serve a mighty God.

  2. Sweet MG is in our prayers. My cousin on my moms side had epilepsy as a child as well. If you would want to ever reach out to my aunt I’m sure she can give you a wealth of knowledge, support and hope. She is an amazing woman of faith like you. My cousin grew out of it- was a division 1 college water player and got her masters in theology from Berkeley. I’m sure your lil darling will be just like her and accomplish beyond your dreams. Love you Christen

  3. Praising God, MaryGrace has the best parents to walk her through this journey. My prayer for you is to remember His promise that He will never forsake you! In addition I commit to praying daily for a miracle healing;) and many not so cranky days!
    Oh how He loves each of you, as do we:)

  4. Dear Christen I’m at a loss for words. Please know that I love you and your entire, precious family!I can only imagine what a horrific diagnosis it was. But it was an answer, like you wrote, that deep down you feared was a possibility.  It is NOT the end of the world. It is NOT a death sentence, so to speak. Please keep your faith and take one step at a time. As a mother, I completely understand your fears.She is ok, you know it. She is beautiful and healthy in soooo many ways!You and Shane are strong. I’ve known you for many years and one thing is certain, you are tough and can brave this storm.  My Grace has been on seizure meds since 10th grade. I will not go into it, but let’s just say, the meds work. They should control her seizures. Then wait and see… only time will tell… and you have a lot of time dear one. You are all in my prayers…. it will be ok…. Love,Tina

  5. My son has suffered from febrile seizures since he was a year old and those moments are the
    Moments I count as the absolute worst of my life. I am so sorry for the many times you have had to experience that horror. But- we live in such a blessed society with incredible medical care and a God who has His hand in all of this. I will be praying for your family. I will be praying for your girl. I will spend a little extra time praying for you because Lord knows these moments are hardest on momma bear.
    Love, Becca
    P.s. Just as a side not of encouragement-I have several friends with epilepsy who are living a totally normal life- and not only living but are thriving. It will be okay 🙂

  6. We love every one of you and each struggle and triumph! I am sorry you ever have to see your sweet girl uncomfortable or in any pain. Always here, Jess

  7. What a curveball your little MG and the entire family has been thrown!! But, as you well know, His Light will always be shining upon you in addition to the prayers & love your family and friends are sending your way. He never gives us more than we can endure but He also never guaranteed us an easy journey. You & Shane have proven many times over the strength to move through the darkness and you will again in this instance. Trust He has equipped you and the whole family to handle this challenge. Breathe deep, accept all prayers, help and love with open arms. It is coming to you always! Know MG will continue to flourish in so many special ways! Watch for them! Kisses all around!

  8. As I read your story my tears ran down my face, 16 years ago we were Blessed with our 6th boy. At two days old I noticed that something was not right. His little leg would start shaking, followed by his arm, as his head twitched, followed by a loud cry. We immediately rushed him to the hospital as this was happening every hour :(. We met the pediatrician at the hospital. He was able to witness our baby have a full seizure .I at that moment did not know what a seizure was. He immediately ordered a EEG followed by a CT scan. We were admitted and waited patiently for results. A Neorologist came in to the hospital room. He looked at me , looked at my husband and said, Mr and Mrs Saavedra?, we said yes? He said, I’m sorry , your child is MR and has also been diagnosed with a Seizure disorder. He said I’m Sorry, I will be writing up some orders for a Seizure Medication, atthis time We do not know the severity. I can say that with these test results and scans your child will probably never walk or talk. I felt as someone had poured a bucket of cold water over me. I followed him to the Nurses station and asked questions he could not answer. I ran outside and cried my eyes out. I cried out to God and asked him why us? Why our child. I was angry, questioning him as to why he Blessed us with 5 healthy boys and now one special needs. My husband came and we talked , I asked him how he felt. He responded to me and said, If God feels that we can take care of a special needs child , that’s what we are going to do. We will Love him exactly the same . I continued to cry and could not pull myself together. I felt as if the Sky was falling on me. We were discharged from the hospital after about 2 weeks. Baby came home with heavy duty Dilantin for his seizures . He was always sleeping and had a blank stare. One Sunday morning my mother called me and asked me if I would be interested in attending Church as an Evangelist was going to be a Guest Speaker at our Church. She knew how I felt about Church as I continued on my Pity party, How can this be happening to us? I decided to attend Church that morning , The Sermon was for me. I really thought my mother had spoke to the Evangalist and shared our story with him. That was not the case. As he closed his sermon he made an altar call, asking for those who needed healing in their lives to come forward. He finally asked for the lady with the child to come forward. I knew he was referring to me. I came forward , he prayed for me and said to me, there is healing in your home. Jonathon or as the town knows him as Jonny Saavedra, 3 year starting point guard for THS Varsity Basketball team, 3.50 GPA , a humble heart and a kid with a Great testimony . Miracles still happen and not one day goes by that I don’t Thank God for our Miracle Child. He has Asthma and a severe peanut allergy,that is nothing compared to what was diagnosed . I will keep your Beautiful daughter in my prayers . Keep the Faith