The Final Part of the Story and My Thoughts as a Mother

This is part three of our story of Joe's epilepsy diagnosis.

Part One


Part Two

The next day we saw the sunrise from our 6th floor hospital room. It was beautiful. It was kind of like God was saying, "Today you will be at peace."

Sammy and the sunrise

The night before we had received a definite time for the MRI, so we planned our meals accordingly. It was much less stressful that way.

Joe was still tethered to his EEG machine, so he couldn't go far, and it was starting to bother him. Thankfully we crafted a play area on the floor, brought him toys and the nurse moved the camera so he was content for awhile.

The mega neurology team came early in the morning. Dr. Cruse sat down to deliver the news of Joe's EEG results. "Well, the EEG is normal. That's good because we can rule out the 'bad' stuff." He went on to explain that no medication would be needed since it was just a one day thing and that we'd just have to watch out for anymore episodes. We would still have the MRI just to rule anything out.

While I was very happy to hear that no "bad stuff" had been found, I still felt uneasy. Was this seriously just a fluke thing? A one time deal? I was fearful of the thought of going home with no answers. I would be constantly paranoid that it would happen again... this time in a much worse manner. Would I ever feel comfortable enough to let him stand on the kitchen chair and help make cookies? Would I constantly be following close behind him while he walked for fear that he'd seize and violently fall over? I am a control freak who wants to know what is going on. I hate unanswered questions. Was this whole torturous (and expensive) hospital stay for nothing?

We spent the rest of the day waiting to go down for the MRI. A vascular team came to put in an IV. Even these specialists were impressed with how strong Joe was. It went a little smoother than other times, but you can never get used to your baby being in pain. Then we learned the MRI was bumped from noon to1:00. While we were waiting, the EEG technician came in to remove the electrodes. Joe freaked when he saw him but we assured him he'd like this part. Joe fussed a little when the tech was removing the electrodes, but for the most part stayed still. I sat in bed with him thinking that he'd want to get up and play now that he was free, but he was getting tired, so we popped in another movie.

Probably 10 minutes after the EEG guy left another doctor came up. I recognized her from Dr. Cruse's neurology team. She introduced herself as Dr. Zuccarelli and pulled a chair up to the bed. When she did that I knew something was up.

"I know we told you that Joe's EEG was normal. But that was based on an earlier reading from last night. He just read the rest of it, and it does appear that there are abnormalities."

It was then she told us the diagnosis: myclonic epilepsy.

His brain was just made a little different, and these nerve currents just fire a little differently. He has a disposition for seizures and certain things like lack of sleep can trigger them. Just a few weeks ago Ryan and I cut out his afternoon nap in hopes he would start sleeping better at night and I fear that could have been the cause.

She went on to explain the precautions we'd have to take, what to do if he has seizure and different issues and situations to look out for. She explained the medication he would now have to take and the emergnecy medicaton we would have to carry on us at all times (like an epi-pen) in case he had a seizure lasting 5 minutes. She was so nice and comforting and straight forward.

I sat there holding my son and tears streamed down my face. Joe was starting to nod off to sleep and I just held him tighter and tighter. I was so glad to have answers, but this just broke my heart. I knew this could be the diagnoses, but actually hearing it said out loud was heart wrenching.

She left and soon it was time to wheel Joe down to his MRI. Ryan and I went with him and waited awhile in the pre-op area reading him books. The anesthesiologist came in to do a quick check up and when he was listening to his heart it was taking a long time. He told us to lean him back and we did and he listened to his heart again. He said the reason he did that was because he heard a heart murmur. I was like "Are you effing kidding me?!?!" I almost had to laugh because SERIOUSLY?! But he assured us that it was a very very common thing and as soon as we laid him back the murmur went away. 

Soon the nurse came in and gave Joe some anti-anxiety meds into his IV and he gladly went with her. She didn't give us a chance to say good bye as she walked away. We were lead to a waiting room. I went up to nurse Sam, meet up with my dad, and grab some lunch.

When I came back to the waiting room I sat down with Ryan. We hugged and talked because that was really the first time we could do so since we go to the hosptial. Joe being in the MRI was probably the hardest part. Thinking about him being alone in a metal tube made me sad. I knew he was sedated, but I was still forlorn to be away from Joe. I was afraid he'd wake up and be afraid that we weren't there.

When they called us back he was still very very very asleep. We snuggled him in a wagon and rolled him back to his room. He stayed in a deep sleep for a very long time. Ryan's mom and my dad left. Ryan loaded up the van because we would be released soon after Joe woke up and ate something.

Sleeping after his MRI

When Joe woke up he was very loopy and goofy. It was actually pretty funny. They gave him some food and tried giving him his first dose of Depakote. They sprinkled it on some pudding thinking he would think it was sugar, but he wasn't fooled. We had to do a lot of coaxing and convincing for him to eat the pudding. Soon we were all packed up and ready to wheel him out to our van.

It was kind of bittersweet to say goodbye to the nurses. They had been such a tremendous help. It was also kind of scary because now we were on our own. We were armed with informatoin and medication, but it was aways kind of comforting to know the nurses were right around the corner in case there was an emergency.

We drove home, grabbed his prescription, let him watch a Batman movie and all went to bed together. I cuddled Joe, grateful that we were in our own comfortable bed. Tears rolled down my cheeks again as I tried to process it all. It really felt like it was all a dream.

My mom had told me how proud she was of me for being so strong. I have to be strong for Joe's sake, but I'm tellling you this has been so hard. Joe has always been so healthy. He went a whole year without seeing his pediatrician. I'm just so confused as to how this could happen. Dr. Z assured us that he would develop into a happy and healthy little boy even with epilepsy, but there will be a part of me that will now be forever paranoid.

I've always been a little paranoid as a mother. The sickening thought of losing my son HAUNTS me. Just thinking about those mothers and fathers of those precious babies killed in Newton, CT last year makes me sick to my stomach. Just knowing that one minute I can be holding my loving healthy boy and the next minute I could be burying him in the cold hard ground terrifies me. I whisper prayers of protection for Ryan and my boys numerous times a day. My love for Joe is so fierce and so strong that I just can't bear to think of him in any kind of pain. Hell, my heart breaks a little bit whenever he is ignored by another kid at the playground. I saw quite a few sick children there at the hospital, and while my heart went out to them, my heart especially ached for their parents. I am growing closer and closer to Mary, the Mother of Jesus now that I've become a mom. Sure, my son isn't suffering for the salvation of souls, but giving God the control and trusting in his will is hard no matter what.

Then of course comes the mommy guilt. I keep thinking that maybe if I wasn't so tired and zoned out or piddle farting on facebook so much that I could have caught these seizures sooner. I feel guilty that I've put my needs in front of my own children. This has definitely been a wake up call for me. I hid a lot of "friends" from showing up on my newsfeed on Facebook and no longer feel obligated to read a ton of blogs or comment on them. I've always felt this overwhelming "need" to blog... like I have such "important" things to say and I just itch to get them out there on the interwebz. But I don't think there are a whole lot of people out there reading these words, and that's OK. I don't plan on abandoning this blog completely, but it just won't be a concern anymore. I foresee a bunch of tickle fights and crafting in the future rather than blog posts about our hopes and dreams.

Joe has been doing well since this whole ordeal. He hasn't had one single seizure, at least when we've been around. We've had to switch from the Depakote crystals to liquid form because no matter how we tried to disguise it, he always figured it out there was medicine in his food. I felt like Kathy Bates from Misery when I was hiding the meds in his oatmeal. We have to take the normal precautions as any parent of a 3 year old does, but we have to be a little more vigilant. One thing that Dr. Z mentioned was that he can't really climb the monkey bars without us close by in case he has a seizure. Even the short myclonic seizures that last a second or two can cause him to fall and get seriously injured.

We aren't going to treat epilepsy as a disease or disability. We'll make the appropriate changes, of course, but we will strive to keep his life as normal as possible. There is a chance he could never have one ever again and even grow out of this epilispy. Since this has happened a lot of people have contacted me telling me they know someone who had/has epilispey and they have normal happy lives.

I just feel like Joe being diagnosed with epilepsy has placed limits on his childhood and general being a boy-ness. Just the other day at the park there was a 8 year old boy at the very top of the jungle gym. Of course Joe will be doing that someday, but if I am present I will be freaking out. Dr. Z said that if Joe goes swimming either Ryan or I HAVE to be there. He could drown in even one inch of water. She made it clear that it HAS to be Ryan or I there to supervise. Not even just Grandma Mary or Memaw and Papa. I asked her how that would work when he's 15 years old and wants to go swimming with his buddies. He will not want his mommy hanging around. She told us that we'd approach that problem when he is 15. But I get so scared thinking there is an ever present danger lurking in his brain that could cause him to get seriously hurt. I don't want this to hold him back from having a normal childhood. 

I am not wasting my time wishing and complaining that Joe didn't have this condition. It is what it is, and I have to deal with it instead of wishing it away. I DO hope and pray he outgrows it and that he never has another seizure again.

I think all of us who are mothers grow and change as the years pass us by. We go from brand new moms who are scared crapless about everything to moms with more experience who are still scared crapless, but have a little more confidence cutting baby fingernails. This situation has definitely shaped me into a slightly different kind of mother... hopefully a better one.

I want to thank everyone for their prayers and kind thoughts and words during this ordeal. It was truly scary, but I definitely felt the peace and calm from your prayers.