Friday, December 17, 2010

The one about hard things

On Thursday November 11, I looked over at Dawson and saw him making a very strange face. His eyes were crazy, he was stiffly holding out one arm and he was shaking. My insides twisted.

No, no, no, I though, Not you. No.

Halle had so many thousands of seizures back in 2007, so I KNEW what I was seeing but I did not want to believe it. I tried replaying it in my mind, talking myself out of it . . . He was just doing one of those silly things babies do, I am paranoid because of Halle's seizures, I must be seeing things . . . But deep down I KNEW what I had seen.

I told Kevin via text while trying to not jump to conclusions and fall apart. Suddenly, I felt like I HAD to get out of the house ASAP to fight the panic. I loaded the kids in the car and took Kevin dinner at work. I kept asking him, "Do you think I'm crazy???" I wanted him to tell me I wasn't and yet I wanted him to tell me I was.

The next couple of days went by and I saw several other episodes. I kept pushing the thoughts away. No that wasn't a seizure. He's just going to the bathroom . . . He's just twitching how all babies do in their sleep . . . but with each episode it became more and more obvious. I knew I was getting closer to having to face it. On Thursday, a week after the first episode, I made an appointment with the doctor.

Saturday, when Kevin was home, he saw an episode for the first time. I didn't want to ask but I did, "So . . . do you think that was a seizure???" When Kev said "Yes," I fell apart inside.

It was real.

Not my baby. Not Dawson.

Monday came and I took him to the doctor. It was like stepping into a nightmare.. I was trying sooo hard not to let the old emotions from 2007 tangle up the present but it was hard. I felt ok until Dr. Mower said, "We'll get him on Fast Track up at Primary Children's Hospital . . ." Even the thought of taking my sweet, beautiful baby to that place- the place where we tortured my other baby, where I felt like I was in mourning for my daughter who was right in front of me- was just too much.

Not just the fears of the seizures themselves, but everything that comes with seizure disorders. Socially, emotionally, mentally, behaviourally, the medications with their crappy side effects . . .

I took Dawson into the lab for the blood work. Holding him down as he screamed, remembering the days of holding a screaming Halle down for the very same reason . . . the ache was intense. The nurse was so sweet and meaning to comfort said, "You can do this." I wanted to yell, "NO! I CAN'T! I'VE DONE THIS BEFORE AND I TELL YOU, I CAN NOT TAKE IT!!!"

Dr. Mower and I talked a lot about Halle's past. He said, "Tell me about your other son, Drew. Has he ever had any signs of seizures?"

"No. We've never seen anything with him," I said.

The next day. Tuesday, November 23:

I was trying my best to pack for our Thanksgiving trip to Vegas but I had the flu and wasn't getting much done. I finally gave up and went to bed. Unable to lie still while there was SO much I needed to get done, I got my video camera out and let Dawson crawl around me so I could catch seizures on video for the doctor. Sure enough, he had a few episodes. As I turned off the camera, Drew (who had fallen asleep next to me) "woke" up, his wrists bent, arms went stiff, his eyes glazed and he laughed/grumbled for maybe 30 seconds. I watched him in disbelief.

"Drew? Drew . . . are you awake? Drew can you see me?"

After several seconds, his eyes came into focus, he smiled at me and then immediately went back to sleep. As I lay there confused, he did the same thing. I decided I would video it if he did that again. Sure enough, he did and I recorded it on camera.

OK, now I KNOW I am losing my mind.

I called Kevin and told him I was crazy, because I thought I just saw Drew have a seizure!?! What are the odds that while video taping one child having seizures, you'd capture another having his first? It was too bizarre.

The next day was a crazy one; Kevin had a dental emergency, almost broke his thumb, I was still sick from the night before, there was supposed to be an awful storm & record bad Thanksgiving day traffic . . . but we got on the road and arrived in Vegas around 2 AM.

Over the next several days on the trip, I continued to watch Dawson's seizures - maybe 5 or so a day, and MANY, MANY more at night- and kept a very close eye on Drew. Each night as Drew fell asleep he repeated what he'd done on Tuesday night. Kev and I didn't really know what to think. They definitely LOOKED like seizures, (especially because each time his left eye would twitch) but it was just too strange. We were still in shock about Dawson . . . how could this be happening?

Saturday night I sat on the couch chatting with my cousin Haley (who's house we stayed at on our trip) and holding my two boys. Dawson would have a seizure, then Drew, then Dawson, Drew . . .

Kevin was studying in another part of the house. When he came out, I asked him to stay and watch the boys with me, to see what he thought.

He said, "Honey, I didn't want to tell you this but I saw Drew have a seizure while he was awake today."

All Drew's episodes had been while he was asleep so far.

"Are you sure???"

I felt sick. Kevin said that while we were in the gym, Drew was playing with him. Suddenly he stopped running, looked right toward Kevin without REALLY looking at him and laughed the same hollow laugh the he did in the sleeping episodes.

We went to bed and I kept my boys with me. Drew in one arm. Dawson in the other. I stayed awake all night counting seizures, unsure of what kind of strange unreality I was in. I knew I would have to fall asleep or Kevin would have to drive as I slept on the long road home, but there was no sleep in me. As long as I live, I will never ever forget that long night.

Or the next day . . .

Kevin woke up in the morning with the stomach flu. He was so sick. Damon and Ora were driving home too and we decided to drive together since Ora was sick with it too. Bad timing!! To make it worse, we hit a blizzard just a few miles North of St. George. So the drive should've been 5 hours but it took us over 10. 10 hours of slippery roads, with cars spun off the road on both sides. Sick hubby. Sleep deprived. Not just one but 2 of my babies having seizures behind me (Drew had 7 on that drive . . . the first ones I'd seen while he was awake). Choking on my tears the whole way home.

Waves of emotions kept coming the whole way. We almost didn't have another baby because of Halle's intense ordeal, since the only "reason" we had for her epilepsy is genetics. (Kevin's sister, Stacy also started having seizures at the age of 3 and struggled controlling them for 14 years) We waited well passed the age of Halle & Stacy's seizures start of epilepsy, and Drew flew through the years without a single sign of anything.

Why now? Why both?

I fell apart over and over thinking that if Drew's had started earlier we wouldn't have had our Dawson . . . my little sunshine.

WHY ALL of my babies? WHY, WHY, WHY?? What am I doing wrong?!? Could I have made this happen . . . ???

We pulled into Provo at almost 11 PM. Everything was buried in snow. If I can't get in my garage tonight, I will officially lose my mind, I thought. I didn't even want to look and see how much snow we'd have to shovel. We got closer, and there it was. HOME- with a perfectly shoveled driveway and walkway up to the door. One of my sweet angel neighbors had done that for us. Words can not tell you how heavy my heart was that night and how much it meant that someone had done that for us, unaware of what was going on and all.

Heavenly Father was aware. We'll be ok. I cried again.

I took Drew the next day to the doctor, exactly a week after I'd been there with Dawson. I told Dr. Mower I felt like he must think I was nuts, like one of those mothers who makes up stuff for attention. We tried to brainstorm anything that could've started BOTH boys' seizures. He got Drew's name added to the Fast Track list for Primary Children's hospital (PCMC). I (again) held down my boy for blood work. He was so brave. I told him if he counted to 25 it would be all over. He cried/screamed/counted to 25 and broke my heart.

Not my Drew too. Please.

The next week was intense for us all. Trying to get in PCMC (who lost our names on the waiting list- TWICE!?) was so frustrating. Counting seizures every day, all day. Drew usually having more than 10 and +triple that at night. Dawson still about 5 a day, +triple that at night also. Most nights I slept with the boys. Not because it helped or anything, but because I didn't want to be away from them. People told me I need to get my sleep . . . but what mom can sleep better just hearing the seizure and doing nothing?

Not this mom.

We FINALLY got the appointment scheduled at PCMC for Tuesday, December 7th. I tried to not go nuts waiting for Tuesday.

I chatted with my Aunt Jana who lives a few minutes from PCMC before going. I thought maybe if we had to kill some time between tests maybe we could visit rather than sitting in waiting rooms. Before she knew any of this was going on at all she said, "Oh, sweetheart, do you need anything? Because we're ready for you if you do. I had the feeling that I needed to get our guest room ready. So I washed the linens and the baby crib is ready and everything. Do you need to come by?"

Heavenly Father was aware.

Tuesday finally came and I took my sister Ora with me for the extra hands and support. We left at 6 AM and got there just in time for Drew's first test; the Echo cardiogram.

Perfect heart results.

Next was Dawon's appointment with the neurologist. Then Drew's. We watched the video of seizures I had caught on our camera, but we didn't really need to. Drew had one right in front of the doctor. A bittersweet blessing that they were happening often enought to be able to see them first hand.

EEG's were next. Dawson's was first and he had 2 seizures when he was hooked up (another blessing) so they were able to confirm that they WERE seizures and tell us they were coming from the left side of his brain. (Halle's came from her right side). Drew had 2 seizures while he was awake, fell asleep and had 4 more. His also showed seizures coming from the LEFT side of his brain.

MRI's were the next day. They both had to be sedated. Having two kids there was tricky. I was holding Dawson for his IV while they wanted to start Drew's IV. "Wait for me, I have to be there for him." But then while holding my Drew (as he screamed but was soooo brave again counting/screaming to 25 as they tried several times to get his IV in) they wanted to started Dawson's sedation. Again, "Wait, I have to be there" and etc.

Around 5 PM when the boys were waking I had a melt down. Total. I got a message on my phone from our dentist. Halle had an appointment earlier that day that a friend had taken her to for me. "I'm sure you've got the treatment plan by now. For the pulpotomy and broken filling, your portion will be 14 hundred dollars . . ." I was bouncing a cranky baby and trying to wake up Drew (who WOULD NOT WAKE UP) when I got the message. Not one of my best moments, I tell ya. The emotional and physical stress of the last couple of days/weeks . . . that message put me over the edge. A nurse came in to check on me. "Oh honey! You need some help!" and thank goodness she noticed. She helped take Dawson and got another nurse to help Drew stay awake. All I can say is I'm pretty proud that we got through those days. Yay. And, thankfully, in all the chaos, I heard the message wrong. Our portion was $14, not $1400. (Relief!) See what happens when a mom doesn't get her sleep? Starts hearing all sorts of things. Lol.

I have to say that the hardest part of our days at PCMC though was going home. I had talked myself through the days saying We'll just get to Tuesday when we can get help from the Doctor . . . Going back home to "normal" which was so far from normal, with nothing changed was super overwhelming and hard. Super duper hard. No answers, just "See you in 3 months. Choose from these medications and decide which side effects you are more comfortable with, call if you need anything."

Ouch.

I felt (feel) very unqualified to handle the day to day situations with the boys. I didn't want to be admitted for days and days either . . . I just wanted to feel like I was going home better prepared and ready for what was coming. Didn't happen.

Results came from MRI showed both boys having normal results. No tumors, lesions, etc. Awesome.

The only hard part that came with this news is knowing that with all the normal test results (blood work, echo, MRI's . . .) there are no answers. When you don't know what is wrong, it's hard to know what to fix. So as happy as we are about them, it is hard anyway.

Bleh.

So here we are. Kevin's swamped with finals and hardly ever here, which is killing him wanting to be here for us. I worry about him so bad. He's living on hardly any sleep and no breaks. He's tough but he's gonna break at some point. I'm trying to feel the Christmas spirit, if only for the kids. And trying to not worry about the future for all 3 of them. Trying.

Basically, we are mainly trying to maintain normal for them here as best as we can. There are tough moments but we get through them. My friend, Vyki used to live by the saying, "I CAN DO HARD THINGS." I saw it written on a tile by her bed as she was dying. If I ever saw a human being pushing through and doing the hard things, and doing them well, it was Vyki. I'm trying to remember.

I CAN DO HARD THINGS.

Drew's epilepsy is a rare kind. Gelastic epilepsy. Supposedly only 1 in 1,000 children with epilepsy will have this kind, and only a few new cases in the country per year. He stops what he is doing, holds his hands in fists (sometimes he might clap or slap his legs over and over), his left eye twitches, and he "laughs" for aprox 60 seconds. It isn't his normal laugh, and I can tell in his face that he isn't being funny. Lately he is having a cluster of 3-8 of these seizures within a few minutes of each other, and then he'll have a break for an hour or maybe two. He is normal in between the episodes. He is completely conscious and can semi communicate through them. He will hear if people laugh and him and can be very shy and embarrassed afterward. This continues day and night, though more frequently as he sleeps.

Depending on what he's doing when they come makes the biggest difference in how bad they are. In a crowd he'll be more embarrassed. If he's climbing things (he's ALWAYS climbing something) he can get hurt. So far he's only fell off the counter once. Another time he was holding Dawson and dropped him. The other day he was climbing on the stair railing and went into one. Halle called me in a panic as she was holding him from falling off. Another time we were coming out of Target and I noticed Drew was gone. I looked around and found him frozen in the cross walk, hand in the air, "laughing", and unable to coordinate himself to get out of the way of all the cars. Another night he threw up in a seizure - unable to control his body so it came through his nose and everything. What an oxymoron to puke and "laugh" through the whole thing!! For him to be totally aware, it was awful. I can't imagine how that would feel.

We continue to have more of these types of things every day. Today's adventures: Drew was putting away the silverware for me and happened to be holding a sharp knife as one started. He repeatedly jammed the knife (I got it away from him pretty quickly before he got hurt) into his pants, "laughing" and watching himself without being able to stop. Then tonight we went out to eat, Drew accidentally rammed his nose into Kevin during one and got a bloody nose.

AHHH!

One of the hard things about these Gelastic seizures is how badly they put me on edge all day. Anytime Drew (or even Halle) laughs I automatically think "seizure." I hope it doesn't take too long to be able to enjoy my kids' laughter again.

As Drew fell asleep just a few minutes ago, one woke him up and he was mumbling/laughing. Then he called out/still seizing . . . "Mom . . . Mom . . . I . . . need . . . to . . . tell . . . you . . . I . . . need to . . . tell . . . you . . . I . . . love . . . you . . . so . . . much."

Dawson's have remained about the same from the first one I saw. Often falls over, mild shaking, stiffening on one side, going limp on the other, makes a crazy face, eyes roll around slightly, lasts around 30 seconds. I am not sure how conscious he is, but he smiled at me once in the middle of it, so that makes me think he's at least partially there. After each seizure he will lose the muscle tone in his neck for about 2-3 minutes. So his head will drop, he'll pick it up, drop, pickup, drop, drop, drop, drop . . . This is the hardest part for me to watch. A few nights ago the "head drop" went on for over 10 minutes and I was about to go to the ER. I. Do. Not. Like. It!!!

The other hard part of Dawson's seizures is it frequently wakes him in his sleep. So I feel like a mom with a newborn some nights, up every few minutes or so helping him get back to sleep. Randomly, he will have a normal night. I don't know what makes the difference. He is used to 12 hour nights, and then two naps throughout the day. So most days the naps aren't happening or are very short, and he has interrupted sleep in the night. Not so good - for either of us.

So many of the feelings I am having bring back the 2007 memories so fresh. I remember vividly the night I felt like Heavenly Father chose the wrong girl to hand this. It was 4 AM or so and I was lying in bed with Halle, feeling so unable to be what she needed in a mom. I didn't know how to make her better, I didn't know how to stop being sad . . . I knew I just wanted the best for my daughter and did NOT feel like that was me. Her personality and behavior was so different. I would stare at her and ache and ache, missing my innocent, fun baby girl. I knew she was still her, but my brain couldn't connect it. I felt so guilty for this. I was overwhelmed and wishing I could give up. Halle woke up out of a deep sleep and said, "Mommy? I picked you. Heavenly Father helped me, and I picked you." Then she turned over and went back to sleep.

If I hadn't been there and heard it myself, I wouldn't have believed it happened. I remember thinking, "Did she really just say that to me?" But I felt so much comfort from that. I still do.

Heavenly Father is aware. He understands my thoughts, my feelings, loves and helps me anyway. He hears me.

Tonight as I type and type my feelings it's hard to process all of this has happened in just barely over a month. For the first couple of weeks we didn't want to tell anyone. I didn't want it to be real and I wasn't ready to answer questions when I was in denial. Now, however, most people know and we are ready, even wanting to talk (sometimes). It helps knowing people care and it helps Drew so people can know how to react in a way that will make him worry as little as possible.

I would be surprised if anyone actually reads this far since it's so long (this is more for the record than anything) but if you do, please keep us . . . KEVIN, HALLE, the BOYS, and ME . . . in your prayers. We could ALL use them. We will get through this. We can do hard things. Kevin and I are beyond blessed to have our 3 amazing, strong, beautiful, wonderful angels.

Heavenly Father is aware.

11 comments:

JustusJohnsons said...

Oh Mari...I don't even know what to say! I read the whole thing and the part where you wrote about what Halle said almost made me burst into tears. Even though we aren't the best of friends you and your family have a place in my heart! I am here for you if you need anything! Honest! You and your family will definitely be in my prayers and even though this is such a hard and trying time, I truly hope you have a very Merry Christmas! I love ya!

Rasmussen Family said...

Mars- I Love you! I had no idea that you were going through all this tough stuff. I do know that you are an amazing person and that you are the perfect mother for these precious children. I know that Heavenly Father is aware of you, just like you said. And he has that power to help you through whatever is placed in your way. I am so thankful for His goodness and mercy. I know he love you very much! I love you too! Know that you are in my thoughts and prayers.

n.davis said...

Mari, I am bawling. I seriously don't know what to say, i'm so sorry for all your heartaches and hard, long nights. but your faith in our Heavenly Father is just beautiful. You are such a strong, brave, beautiful mother. Our Heavenly Father knew this, and entrusted you with these beautiful, sweet children. I hope you can keep your faith high, and your spirits lifted. Even though it's sooo hard, just know you can do it! And please, know that i'm here for you whenever! Don't feel embarrassed or anything to just call and say you need help..or need some sleep. Seriously, i'll help out in any way! We are praying for you and your sweet family! You can do hard things, but just know that Heavenly Father doesn't want you to do them alone.

Alicia said...

Oh Mari, I am so sorry! I KNOW you can do hard things, I'm just sorry that you have to keep doing them. I also know that words cannot make this trial any easier, but hopefully knowing that there are so many people who love you and are praying for your sweet little family will help lighten your burden. I know miracles happen. I know you have seen miracles happen and I pray that you will again experience miracles in your life. Please let me know what we can do to help you.

Tucker & Tiffany said...

You guys will always and forever be in our thoughts and prayers. Love you so much! You CAN do hard things, and you DO do hard things. And like Nikki said, you don't have to do them alone. Heavenly Father is always with you, and you have a whole lot of people who would drop anything to help in anyway that they can.((HUGS))

Emily said...

Mari- It was sooo good to be with you today...finally. And to see your sweet kids. They are lucky to have you for a mommy! I am going to be hoping and PRAYING that you get answers and help soon!

Bambi said...

Mari, You can do hard things!!!! I am such a bad friend that I haven't been able to help you with stuff through this. I am here now so please call me even if you are having a melt down and I'll cry on the phone with you or try my very best to say something witty to get you to laugh. I love you so much and I know that the only reason Heavenly Father is allowing you to go through these trials is because you CAN handle them and will be stronger and better for them. Please call me when you need to chat. Please come over if you need to get out, our place is baby proofed and small so the kids won't hurt themselves most likely if something does happen. I miss you and hope that you will think of me if you need something. I'll always be here for you. This won't last forever and when it is all over normalcy will never be so sweet. Love you to pieces Mar!!!! You have always been one of my best friends and one of the most beautiful and wonderful people I have ever had the pleasure knowing. My thoughts and prayers are with you.

Hugs and kisses.

Linley and Austin said...

Oh Mari...now I feel even a billion times more awful that I woke you up this afternoon. Seriously, slap me the next time you see me. I just want you to know that you guys will be in my prayers. I know that you will get through this. I hope you know that if you ever need anything, that you can call me. Please :) Love ya.

Ora said...

Gee thanks for making me cry! Your kids (and me and my fam) are all so lucky to have you in our lives. Love you!

Crystal said...

Oh Mari, I am so sorry. I had no idea all this was going on. Please if you need anything please call me. Your family is in our thoughts and prayers.

Sara said...

I really don't know how well you know me. Kevin was in my ward when I was a teenager and I remember you and Ora from school. (Cami is my cousin.)

A bunch of your posts just popped up on my google reader. I just wanted to say that I really appreciate your honesty. I don't think I have ever had to deal with anything so trying, and you are an inspiration. Your family has been in my thoughts all day since I read your post! You are such an amazing, strong woman! I know that Heavenly Father is aware of you and your family and I know that you will have all the strength you will need to carry on.

I hope you don't mind me replying. I pray that you can find some answers or some solutions to help with the seizures!