Through Thick And Thin

Monday, February 8, 2010

When Charlie was born I cried uncontrollably with happiness. When he smiled for the first time, my heart leaped 10 love sizes larger. When he spoke his first word and it was "Dah-Dah", rather than "Mah-Mah", I hid my own personal disappointed and clapped for the winnings of reaching a milestone.

When he developed the Swine Flu, I sat on his bedroom floor and watched him sleep, hoping that it wouldn't get any worse than it currently was. When his Swine Flu turned into Pneumonia, I held him in my arms and prayed to God, over and over again, that my baby would smile again someday. And then when he did finally smile again, I did everything that a mother could possibly do to hold onto it, and not let it escape us.

I love my baby boy. I don't love him more than I love his sister, but I love him very differently. Its unexplainable, really.

The first time I saw Charlie have a seizure, I pulled him out of his crib, and stared into his eyes. I stared long, and I stared hard. I stared through instant tears that blurred my vision and burnt my eyes, and I stared through complete fear.

"Do it again", I thought, and then instantly argued with myself "no don't! Don't do it again, don't ever do it again". I rested his head on my shoulder, and together we sat down on the ground. He crawled away from my lap to go play, and as if I had left my own body, I floated along with him, while not moving at all.

Another one.

"STOP IT", the voice in my head screamed, without ever being heard past my own ears.

Another one.

"This isn't real", I convinced myself. "My son isn't having seizures".

I didn't take my eyes off of him for the next 2 days. My sight was connected to his every move. I wouldn't miss a single seizure, if there were to be more. And of course, there were more.

I took Charlie to the doctor, and we agreed that they were myoclonic seizures. He'll lose control of his head completely, almost as if somebody is behind him pulling on a string attached to the base of his neck, and his head will jerk up and to the right, over and over again. His eyes roll back into his head, hes unable to continue doing whatever it was that he was doing, and all we can do is wait for it to stop. Sometimes its just a single jerk, I call those "baby seizures", and sometimes it will be several in a row. Five, six- its hard to concentrate on counting when you're holding your breath in terror just watching. I call those ones "big seizures".

The doctor didn't seem too worried, saying something about how its normal to have myoclonic jerks while falling asleep. I don't think he understood what I meant, when I said Charlie was usually tired when it happened. He's tired, yes, but... hes not asleep. I'll often see him rubbing his eyes, while coloring, and then out of nowhere his head is all over the place, and hes left with a blank stare of "what just happened" on his face, just for a few seconds, before returning to his game of blue-crayon-pony-paper.

The seizures seemed to die down after the doctors appointment. I thought maybe I had been overreacting, thanked my lucky stars that my baby boy was ok, it must have just been a one time (one week) thing.

Until the other day...

I knew nap time would be coming soon, but it was just too nice of a day to stay inside. We went for a walk with some friends, we played at a nearby park, we soaked up sunshine and inhaled fresh air for as long as we could possibly stand it. When we got home, Charlie went down for a nap, and shortly after, so did sister and Mama. Usually Charlie will sleep for an hour or longer, but because his sleep schedule was off from the afternoon's adventures, he woke up screaming, and after a few minutes of continuous cries, I got up from my bed (where I was just teetering near dreams), collected him from his crib, and brought him to snuggle with me under our red flannel sheets. He flopped himself around between the blankets and pillows, like he was playing bumper baby, trying to get comfortable, but he was just oh so excited to be playing on Mama's mattress. And then, something I hadn't seen in weeks.

A big one.

A really big one.

"No, Charlie!", I said out loud.

And then another one. And another one. Three or four really big ones, all just minutes, seconds, apart.

I cried for him, as he had no idea what was going on. He continued trying to get comfortable, I let him crawl on me, and I cursed myself for not demanding that we have that EEG done weeks ago when I knew we should have.

The next afternoon, about an hour after waking from a nap, Charlie was playing on the floor in the kitchen, a piece of tupperware in hand. Christopher and I just happened to be having a conversation, Charlie in between us, me looking at the back of his head, Christopher seeing him from the front.

And then he had one.

The look on Christopher's face was something similar to- shock? Thats the only way I can really describe it. Its not a look I'm familiar with on his face. This was the first time that he had seen Charlie have a seizure, probably the first time he had ever seen any kind of seizure at all, and I could tell that everything suddenly felt very real for the both of us. This wasn't a one time thing, I don't care what the doctor had said, this isn't normal. This is dangerous. This is scary.

Today we'll be in touch with a different doctor, the doctor that we should have seen the first time, and we'll start working towards getting answers. I've done my research, and I've done it well. I'm almost positive I know what his diagnosis will be, it isn't anything life threatening, but because I'm not the doctor, I'm just a worried mother who put hours upon hours into finding out whats wrong with her baby- I don't know whats happening to my son. Until we get everything figured out, my guard is up, and I'm going to be over protective. I'm on high alert, and my emotions are stuck in silent panic mode.

Please bare with us, as we wade through dark unknown waters, holding our children as high above our heads as our arms will allow.


Reneesance February 8, 2010 at 7:05 AM  

I'll be thinking good happy thoughts about you and your family to help get you through this. Alex had to have all kinds of testing when he was 3 months old and I know theres nothing in the world more scary than knowing that somethings not right with your baby and not being able to fix it. I know you guys will get through it and let us chicks out in blog land know if there's anything we can do to help out!

Shannon February 8, 2010 at 7:15 AM  

Tia...there are no words I could possibly say to make any of this easier. Just know that your entire family is in my thoughts, and I'm just an email away if you need to talk.

craftattacks February 8, 2010 at 7:23 AM  

ohmygod! that is so frightening, Tia! I hope you get the answers you seek.

Oh Mandie! February 8, 2010 at 7:45 AM  

My thoughts and prayers are with you guys Tia! Charlie is such a strong and sweet little boy, he'll be alright and thankfully he has an amazing and caring mommy like you to make sure of it!

Hugs and love to you and your family!

Christina February 8, 2010 at 7:53 AM  

I will definitely be praying for Charlie. I'm sorry, Tia. :( Kavi hasn't had that but he had some other issues(but all taken care of now), and it's so scary and sad when something is going on with them that we can't control.

The Momma February 8, 2010 at 7:54 AM  

Oh, Tia... That sweet, sweet angel. I'll be keeping your family in my thoughts and prayers that you get the answers and some peace. Give that boy a hug from me!

NessaGurl February 8, 2010 at 8:17 AM  

I can't begin to imagine what you and Christopher must be feeling. Thankfully we haven't had any major things like this happen to us yet, but I freaked out over a rash/hives Charlotte got so I couldn't imagine what I would do if I saw her having seizures.

I hope your appointment goes well today... chin up, you'll get some answers and Charlie will be just fine.

We are all rooting for you :)

Johanna February 8, 2010 at 8:43 AM  

Oh Tia, my whole heart is with you. I can only imagine that every ounce, every bit of you is focussed on Charlie.
I'll be praying for you, Christopher, Eleanore and of course your beautiful baby Charlie.

Johanna February 8, 2010 at 8:43 AM  

Oh Tia, my whole heart is with you. I can only imagine that every ounce, every bit of you is focussed on Charlie.
I'll be praying for you, Christopher, Eleanore and of course your beautiful baby Charlie.

NONtRENDY February 8, 2010 at 8:48 AM  

Oh my. I'm so sorry.
I hope everything will be ok for you and your family.

Kyla Roma February 8, 2010 at 9:44 AM  

This is so scary- you guys are in my prayers <3 Keep us in the loop if you can!

ElegantSnobbery February 8, 2010 at 10:04 AM  

Oh Tia! So sorry you are going through this! Poor Charlie! How rough!!

AlyGatr February 8, 2010 at 11:28 AM  

Poor little Charlie. Hopefully you will find the right doctor to give you a good diagnosis and a course of treatment...and soon. I have you all in my thoughts and pray they get to the bottom of it.

soul_searching_mama February 8, 2010 at 12:46 PM  

You all are in my prayers. I hope you guys get some answers. I'm so sorry you guys have to go through something so difficult. *hugs*

Kunklebaby February 8, 2010 at 12:51 PM  

Ohh I am so sorry Tia! Two of my children have febrile seizures and I know the fear you spoke about ALL too well!!
We went through the tests, EEG's, appointments with specialists. Your in my thoughts! Stay strong and you'll get through it together. Email me if you ever want to talk.

Casey February 8, 2010 at 2:20 PM  

I'm so sorry, Tia. I am sending love & support your way.

Philomena Bohemian February 8, 2010 at 3:00 PM  

Wow, this is so heartbreaking, just know that you have a whole lot of people praying for your family right now. Always trust your gut- a mother knows best! Don't let those doctors tell you otherwise! I hope the new doc is able to give you some better answers. Please give that sweet sweet baby boy a kiss for me~

CraftGirlAlli February 8, 2010 at 7:32 PM  

Definitely have you guys in my thoughts and prayers! Poor Charlie!

joyfully gray February 8, 2010 at 8:10 PM  

Oh Tia - I will be thinking of you all non-stop. I wish I had to right words ... or could say something to make this better, easier. I cannot imagine how frightened you are right now - I know you want your baby safe and you want answers. I will be thinking and praying for you all, especially little Charlie.

Amy February 9, 2010 at 11:20 AM  

How did my reader miss this post yesterday??

I'm so sorry you're going through this, you guys, but am thankful for your new doctor and that your concerns are being taken seriously. Living without answers is HARD.

Betsy February 9, 2010 at 12:56 PM  

Oh my goodness!! Reading this seriously gave me goosebumps. I'm so sorry this happened and I am PRAYING that Charlie will be ok.

That 22 year old housewife... February 10, 2010 at 4:15 PM  

I am amazed at your strength as a mother! i admire your love for your children and feel for you for all you and your baby have been through. Its such a blessing to read other mothers stories and triumphs to help us make it through our own.

Thank you for sharing.

joyfully gray February 10, 2010 at 8:55 PM  

Hey little Charlie man - we've been thinking and praying about you all the time up here in Oklahoma. Have a fun-filled week with lots of love!

Your friends,
Lucia and Sarah

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