A Seizure at School

Last Tuesday I got a call from one of the nurses at Meg’s school telling me my little girl was having a seizure.  The nurse couldn’t give me a lot of information, she told me a boy from the class had just come down and the other nurse had just left to go treat her.

“We’re on our way!” is all I could say before hanging up.

My mind began to race though a gazillion questions

Did she fall? Was she in the classroom? Was she with an adult? Oh god the stairs! Did it happen in the lunchroom?  Was she hurt?

I could feel the back of my throat start to tighten and the tears start to well up in my eyes.

Stop it!  You have to keep it together!

I could feel anxiety starting in my chest and I was so glad my husband was home to drive and keep me grounded. Half way to the school the phone rang again and this time the nurse was able to tell us to head straight for the classroom once we got there!

It didn’t take long for us to get to Meg’s school, but it felt as though it took much, much longer!  As we walked up the stair to her classroom, my heart was still racing, and I just wanted to see my baby girl.  When we entered the classroom Meghan was lying on the floor, with the nurse by her side, throwing up.  I sat down on the floor in front of her to let her know we were there and to make sure she wasn’t still seizing.  Her eyes were a little dilated, she looked dazed, but she was definitely coming out of the seizure.  I scooped her up, held her in my arms and then I saw her teachers face, she was visibly shaken by the whole event.  She kept looking at me and saying… God Bless you! God Ble… I had no idea! I have such a new found respect for you! Again I could feel my throat tighten, I told her Meg was fine and asked her if she was okay.  I could see tears in her eyes and the concern on all of their faces and it felt good to know so many people were caring for my daughter.

It’s crazy how time can pass when you’re dealing with an emergency, sometimes minutes can seem like hours and yet, other times, it can feel like everything has happened in seconds and before you know it 20 minutes have gone by.  I think this is why there was a little confusion about how long Meg had seized!

From what I understand, the kids had just come back from lunch and they had put up tri-fold partitions to get ready for practice testing.  The teacher had noticed Meg’s partition didn’t look right and had tried to get her attention, but Meg had not responded.  Upon standing the teacher realized that Meg was having a seizure.  The kids were lined up and led out! Thankfully they didn’t really see much because of the dividers.  Meg was moved to the floor and laid her on her side.  From what the teachers described everything sounded characteristic of Meg’s normal seizures.  I gave Meg’s teacher a hug, thanked everyone and we headed home!

Once home we put a call in to her neurologist and gave Meg something for her headache. She slept for quite a while, which is pretty normal after having a seizure. By supper time Meg was more like herself, but we kept her home an extra day to make sure. It was so nice to receive calls and messages from the teachers and her friends; I honestly think it made her feel a little less nervous about it all.

Two days later, she went back to school and it was so hard to let her go!  Of course, I know things needed to be as normal as possible for her, but as her mom I just wanted to wrap her up in my arms and keep her home! I’ll admit I did walk her to class the first day back!  Her teachers all seemed confident and told me they were ready if she were to have another seizure.  Her friend had made cupcakes for her coming back and the kids went on as if nothing had happened, which I think was really important for her.

I can’t say I’m not nervous about another seizure happening at school, this was her second, but it helps to know her school is prepared and willing to stand by her and do whatever they can to make sure she’s safe.

Random Ramblings and Fears

Today I feel like an emotional basket case! I haven’t blogged in a while and it’s not for lack of wanting to it’s because I didn’t and still don’t quite know how to express what I’m feeling! There’s so much going on in my personal life and I tend to have a hard time separating my feelings into categories! Family… check! Epilepsy… check, check! Instead they all mull around in my brain and make me feel overwhelmed and a tad over emotional!

Meghan has been doing great all things considered! I know I’ve mentioned to some of you about the remedial reading course she’s taking in order to be promoted to 4th grade. She loves her teacher and she seems to be progressing nicely! My only worry is they don’t have a nurse on staff or someone who can administer diazepam if she were to need it. Luckily we live literally less than a block away from the school where the class is being offered! Not that it makes it any easier, I stress about it constantly, but I can get there in about a min if anything were to happen! I am definitely going to approach the school board about making sure someone is available for those programs in the future.

Last week Meg had another seizure! It was upon waking and started out with the usual swallowing episodes, but quickly turned to what sounded like choking and she started to turn blue. I know these things have a tendency to go hand in hand with seizures, but it didn’t make it any easier to watch. I’m used to dealing with focal seizures that progress into leg and arm twitching, her blank stare, random noises, but the last few she’s had are much more violent with thrashing, tongue biting, choking sounds and it kills me! I know she doesn’t remember them, but I can’t seem get them out of my head and I’m petrified. I’m scared to death of SUDEP and the seizures not stopping! I feel like lately I’ve been in a constant state of worry and fear. Recently the doctor suggested and scheduled a PET scan and told me these are generally done to determine whether or not your child is eligible for surgery.

Surgery… another thing that scares the bejeezus out of me! Will it work? Won’t it work? How do I explain it to her? How the hell do I get through it and stay strong if she is a candidate? Will she come back to me the same way she went in? What happens if something goes wrong? What if it doesn’t work? What if it does?

STOP! Take a deep breath! You aren’t there yet! One day at a time! Stop living in the what ifs and live in the present! It’s hard to do sometimes, but I feel as though I constantly have to remind myself to do this! It feels like I’m always preparing for the worst. When we go out, in my head I’m thinking, where’s the safest place to take her if something happens so we can administer her rescue meds? What if someone tries to capture it on a cell phone?

Stress? Yeah! I feel as though I’ve come to know her quite well.

So on days like today, when Meg is at school and I feel like a complete and utter emotional nutcase, I realize I need to take a few moments to let it all out! I have to allow myself, at least for few moments, to take off the happy mask and release what I’m feeling from that box in my head labeled Place Emotions Here! It doesn’t make me weak! It doesn’t make me crazy! It doesn’t make me a bad mom! I think it allows me to process what I’m feeling and get my feelings into check so I can be level headed and taken seriously when it comes time to make decisions, meet with people or answer question. It also allows me to release all those fears and live in the present with my daughter, to laugh with her and teach her life lessons.

I’m not perfect, I’m still learning how to manage all the emotions that come along with epilepsy let alone the ones associated with just being a Mom! I can tell you I’m beautifully flawed and I say this because I know the emotions I feel come out of a place of complete and utter love for my child! I still get nervous and scared, but I’m also a fighter! I want my child to live and to succeed to the very best of her ability! I may cry and beat myself up every once in a while and I might have to learn through mistakes along the way, but I will do everything in my ability to make sure that happens.

Our First Run/Walk For Epilepsy!

I’ve always wanted to attend the national walk for Epilepsy held annually in DC, but each year something seems to come up that prevents us from going!  We were unable to attend again this year due to hubby’s work schedule and because finances were tight! So… when my sister-in-law told us about a local 5k/1 mile fun run The Epilepsy Services Foundation hosts each year called the Hare Racing Experience we signed up right away!  We forwarded the race link on to our family and friends and soon we had a nice little group joining us for the race!

On the day of the race we all had a case of butterflies, but our jitters quickly disappeared and were replaced with excitement when we saw the number of people who had shown up for the race!

It didn’t take long for my husband to find Meg’s Aunty R, Uncle J, Pop pop who were all gearing up for the start of the 5k race!

This was hubby’s first 5k and we were so proud of him!

 Meg and I wished daddy luck, snapped a quick picture of him holding our Talk About It sign…

and then they were all off and he was lost in a sea of runners!

Meg and I headed off to the track field to find her cousins who would be participating in the 1 mile fun run with us!

The time passed so quickly and one by one our group crossed the finish line!

My anxiety was up and down throughout the day, but I was determined to push through it!

I wont lie there were definitely moment I wanted to run and I don’t mean in the 5k or the 1 mile, I wanted to sprint like a gazelle to the nearest exit!

I managed to keep it under control and before I knew my nerves were gone and we were lining up for our 1 mile fun run!

Meg was excited her uncle and cousins were running with her!

She flashed me a smile and then she was off…

and she did really great!

before I knew it she was lapping me!

She crossed the finish line with her cousins and high-fived her Aunt and Uncle!

I was so proud of my baby girl!

Everyone did a great job and we feel truly blessed to have such caring family and friends that are willing to talk about it!

Music by Rusted Roots

Appearances Can Sometimes Be Deceiving!

I once told a good friend of mine who has five children, two with infantile spasms, I thought (still think) she is an amazing woman! I praised her because her journey with Epilepsy has been much harder than mine and yet every time I see her she seems to have it so together; she’s always had such a strong faith and just an air of strength about her.   It wasn’t until she sent me a heartfelt letter laying out all the truths and fears she had and would face in her lifetime that I understood we weren’t so different! We actually shared a lot of the same insecurities and fears, she was just a little better at hiding it on the outside than I and truth be told that letter only made me respect and love her all the more!

Let me be the first to say I have insecurities, I definitely have fears and I’ve become an expert at the what if… game!  There are times I’ve doubted my strength and felt as though my faith was broken. I’ve had moments where I’ve felt I needed much more than I’ve supported my family and friends. I’ve been hurt by a person’s insensitive comment and resisted the urge to tell them exactly what I thought and instead tried to reason with and educate them.  I’m all to familiar with that sucker punch in the gut, where you feel helpless, can’t catch your breath and all you can do is cry, because it’s the only thing you have left in that moment!  However, I’ve also come to understand it’s during these moments, after that release, we’re able to pick ourselves up, dust off and draw strength from places we didn’t even know existed!  We see our child’s smile, the comfort they find in us, their innocence and realize we have to keep moving forward no matter how difficult it might seem, because they need us and simply put we love them!

I always envied how strong I thought my friend was, but I now understand her need to make everything look okay on the outside. Without trying to sound to much like Lady Gaga, I have come to appreciate that we all have a poker face of sorts, not necessarily because we want to, but sometimes because we have to! The alternative would be to bare our souls and share how vulnerable we really are!  I wonder though, is that such a bad thing?  Don’t get me wrong, I don’t think we should walk around with a dark cloud over head, telling every stranger we meet all our life afflictions!  But when and if we decided to share our true emotions with someone in similar circumstances, I think it will enable us to connect and empower each other to become stronger, because we’ll realize all those insecurities and fears we’ve been feeling aren’t a lack of strength at all, in fact they’re quite normal!