Friday, November 3, 2017

Testing my heart strength

I had one of those eye-opening moments, a "no wonder I'm stressing" minute. This boy of mine has already tested my heart so much.

This boy of mine... I know he has been through a lot, but I didn't realize how much until today, when I started to list them in my head. I know, others have gone through more. But our Gus Gus...

  • We thought we lost him at 8 weeks gestation, with a bleed.
  • We started labor at 26 weeks and had a very long 11 weeks of bedrest.
  • He was born blue, recovered within a minute thanks to our great nurses, but still scary.
  • He was born with three holes in his heart. All three resolved by the time he was a year, but still scary.
  • He got whooping cough at four months.
  • He got diagnosed with a peanut allergy when he was 2.
  • He was diagnosed with epilepsy last year.
  • He has earned an asthma diagnosis now, too.
So, his daily regimen includes seizure pills, two kinds of inhalers, and frequent ibuprofen to prevent febrile seizures, as well as carry an epi pen and a seizure-stopping diastat. I have spent as many nights at his bedside praying for him to get better, as I have spent with all his sisters combined.

And then, he has conversations about Heaven as if he went there on his last summer vacation. This week he said "If I make it to Christmas..." what four-year-old says that!

I guess the bright side is, he's not at all afraid of all these health issues. My worse case scenario is a pretty happy ending for him.

But until then. We all appreciate every day we get. We medicate him through the health crud. And we love every goofy smile and dance and song.

Thursday, October 19, 2017

One year later

I heard a medical provider say this week that a patient shouldn't be showing post-traumatic stress symptoms because the incident in question was 18 months ago, and -- I quote -- he should be over it by now -- end quote. I walked away silently, because you can't educate someone who has never gone through a traumatic experience.

It's been almost a year since our Gus Gus had his second status seizure, almost a year since I woke up to a horrible sound and found my son seizing and blue, almost a year since I tucked in a little boy tired from a wonderful Halloween and woke up to a nightmare.

I got a pretty direct reminder of it this week, on my way to work. I was praying a rosary, with my focus on something that now seems trivial. And, while I was laying my wishes at God's feet, I heard this voice in my head say, "Last year about this time, you were saying a rosary that your son would wake up with an intact brain." Subconscious message or divine intervention, either way, I got the message: We've come a long way, baby.

First off, John... talking up a storm, walking, running, learning to ride a bike. Last year, he wasn't able to walk more than two steps without falling. He wasn't able to finish his sentence or find the right word. Those side effects only were for a short time, but what a scary time. He is on maintenance meds, specifically Topamax. We haven't seen any seizures since his EEG. He is such a smart little man, retaining information, learning so quickly, entertaining us whenever he can. We saw a ditch digger at the gas station last week, and he had to tell me all about the supports that come out from the side called stabilizers, and how the trench digger worked, and what the scoop does, and how it takes two drivers to operate. This week, he brought home a worksheet full of little "A"s written with intent concentration in a way only a preschooler can master. He loves his sisters, all of them, and is learning what it means to hurt people's feelings, and cries so whole-heartedly when he learns he hurt someone's feelings unintentionally.

He still talks about Heaven a lot, mostly telling me what it's like there. A couple months ago, I picked him up from daycare, and he randomly informed me that "Heaven looks just like this Earth, only it's not the same. Everyone is everyone but doesn't feel the same as they do here." This mama's heart is grateful he isn't still mad at me for making him come back here "where it hurts."

And then there is Lainie, more than three years post-seizure, and 4 months without preventative epileptic medication. She has changed, without the medication, and it's not a bad thing. She is more assertive, more typical in her emotions. You definitely know when she is upset. Sometimes, she shows her anger more passionately and more publicly than a typical girl her age, but I have to assume that is a side effect of being on a mood stabilizing drug for 6 years. She has not learned how to control her emotional response; or, she is having to learn how to control her emotions in a very short time frame, with a middle school girl emotionally maturity that just isn't there yet. Academically, she is doing well. The attention deficit is still there, definitely, but the processing speed seems to be improving. Or, maybe that's just a mom's wishful thinking. Most importantly, she has not had a seizure... yet.

I can't help looking at John and Lainie, being afraid of The Next Big One, probably not unlike a Californian waiting for the next earthquake. Then, I start realizing there are probably Big Ones out there that I don't even know about, threatening to upset our equilibrium any second. I try to redirect my train of thought, try to not think about my worst fear, that fear of losing a child. Most days I can redirect; some days I can't. But I am not letting my fears keep me from enjoying these moments. If anything, it makes me appreciate every morning they all wake up, and every night they are safely tucked into their beds.

I just hope the rest of the world doesn't have to go through the hurt of losing or almost losing a child to learn the art of appreciating every moment God gives us. And that we can all have compassion for those who have... no matter how long it's been.

Monday, January 16, 2017


It's confirmed. Gus Gus has a form of epilepsy, specifically generalized epilepsy with febrile seizures plus, or GEFS. He started on Keppra on Monday, at half the therapeutic dose so we can ramp up to the correct dose after a week. Keppra's usual side effects include agitation and aggression. Our neurologist continues to impress me. She called me back the day after the EEG, when they had told me it would take 7-10 days for results. She talked to Lainie's neurologist before calling me, so we had a family-wide game plan. She took over Lainie's care, so we can try to combine our appointments in Kansas City. And she told me her number one priority for John is to keep his wonderful personality intact, to just help him be a seizure-free version of himself. If the first medication changes his personality, we will try a second or a third until we get the right combo to not lose John, not sedate him or change him, but to keep him safe.

Since then, he has been a grouchy Gus, a wonderful nickname from John's daycare provider. But, it's hard to tell the difference between a tired toddler and a medication side effect like that.  In my mind, we give it a month before we decide if it's the medication or a bad day. And in that month, he will have another physical with our pediatrician, and then an MRI at Children's to rule out a more sinister cause of the seizures. But let's be realistic -- with a sister with a similar diagnosis and a second sister who had one febrile seizure, a tumor is a pretty far-fetched fear. Still, we will need to rule it out.

Personally, I'm doing okay. I cried for about an hour. But that's all I needed. That, and Jay. I think I had accepted this was likely back in November. I worry about Jay; he is hurting from this. But he and I were both overwhelmed and bolstered by the outpouring of support on Facebook, of the random gifts of prayers and books (THANK YOU!) and cards and so much more. Our prayers are strong, but they are even stronger in bulk!

I think it's funny, too, how even how I approach a child with epilepsy is different with a boy. With Lainie, I worry about how she can have kids, carry a pregnancy, while on anti-epileptic meds. With John, I worry about if he will be able to drive when he is in high school. There are so many other things to worry about, but those are my big picture things: John and his independence, can Lainie be a mom.


My therapist has me reading a book called The Gifts of Imperfection by Brene Brown. There is one chapter titled, "Cultivating a Resilient Spirit: Letting Go of Numbing and Powerlessness." It talks about what we do to numb ourselves from feeling pain, but that if we numb our emotions from pain, we also numb them from joy. Some numb with drugs or alcohol, some with food, some with busyness. I do believe I numb with busyness. If I'm too tired to think, then I don't have to feel.

It talks about hopelessness. It asks, "how do you feel when you believe that you are powerless to change something in your life?" I do feel powerless to change this, and that's why I also was feeling hopeless. But I was focusing on the powerless to eliminate epilepsy, Instead, I need to redirect my self-appointed goals. My goal is not to eliminate epilepsy. My goal is to keep my kids safe, to do everything in my power to help them survive, intact, to adulthood. And I am not powerless in that regard. We have medication to prevent seizures, we have tylenol to prevent fevers, we have a healthy diet and lifestyle to do the best we can to prevent illness, and we have medication to stop the seizures if they do come. So, with a change in perspective, I'm no longer powerless, and therefore I'm no longer hopeless. 

The book also talks about being afraid to love, afraid to feel so deeply, because you know that sets you up for extreme pain. It's that ridiculous game I play on even the best days, where my mind starts wandering to thoughts of what-if, what if Katie had a car wreck, what if J or L had another seizure, what if Maggie continued to struggle with her own behavior issues, what if Nat feels invisible. Sad thing is, all of those what-if's have come true; all in the past six weeks, in fact. But we have survived.

The biggest what-if -- the What-If of losing one of my kids, the What-If that rise up in my nightmares so vivid that I wake up crying --  has not come to fruition. And for that, I need to remember to practice gratitude. I am practicing being thankful for what hasn't happened and not focus on what has.

And so tonight, at 1:53 a.m. on my first night off in four days, I am thankful for the day. I'm thankful for the hour or so that the kids played outside, thankful for four girls taking pictures of our ice storm, thankful for Natalie and John running happily in the hoop building, thankful for John splashing in every mud puddle he could find. I am even thankful for the emotional storms we have endured that taught me to be grateful for big messes from little people, and know that the mud washes off but the memory of their laughs while getting filthy lasts forever.

I am thankful, even though I now have Lainie in the bathroom with a stomach flu, even though I am praying her version of this illness doesn't spike a huge fever like it did for Maggie, praying that if it does cause a fever, that her medication will keep her seizures away.

I am thankful, even though I also have John at my feet sleeping on the basement floor, because after bedtime, he started coughing and is pretty rough. Delsym and a xopenex breathing treatment helped for about three hours, but he needed a second treatment at the four hour mark. And so I pray for no fever for him, no seizure for him, that his breathing is eased, that we can stay away from the ER tonight.

And I pray for my own heart, that some day these typical childhood illnesses won't make me so damn scared.  I pray that I can stop being frustrated, and can some day understand how one boy can go from the running through the mud puddles to struggling to breathe and twitching all over in a matter of hours.

Sunday, January 15, 2017

EEG day

Little man handled his EEG like, well, a boy. He was mad that they kept washing his hair, but once that part was done, he was fine with it. He definitely liked the pancake breakfast afterwards much better, loved the train that runs on the ceiling, and played with the light up magic ceiling before we left for home.

Sunday, January 8, 2017

Stay awake

This is how we keep a three-year-old awake until midnight:

We are staying at the Ronald McDonald House for the first time, and oh my gosh, it is paradise. There is an entire basement where we could let John run around until his midnight bedtime. It even had free arcade games and so much more.

Ironically, now that it is midnight, the boy won't fall asleep. It's  going to be a harsh morning in 3 1/2 hours!

Kansas City bound

A year to the day of John's first seizure, we are headed back to Children's. In the morning, he will have an EEG that will decide whether he goes on medication daily or not. And so -- we are heading to KC early to make it a fun time. We have to keep him awake until midnight, so we are heading to Cabelas, the candy store, a long supper. We are staying at the Ronald's McDonals house and brought tractors, hot wheels, books, a computer, and a farm set, all to help keep little man awake.

Today I'm not praying for anything but a safe trip. I'm ready for answers, not matter what they are.

Wednesday, January 4, 2017


Healing from a break takes months. At first, it hurts even if you don't move. You can't use the broken limb. Everyone babies that wound, protects it from further damage. Slowly, so slowly you don't even notice it, it stops hurting constantly. It's so slow, you are almost surprised one day to find out you can move without pain. But still, you baby it, nurture it, so it doesn't get rebroken.

That's where I'm at -- freshly mended, functional, no longer hurting every day, but so afraid of new injuries.

I have had to work hard to heal this time around. I have started taking supplements that help boost serotonin production, another to help my adrenal gland, another to help my thyroid, another to help my hormone regulation. And they worked, within just a matter of days.

I have started counseling, talking through things I don't want to talk about. Our big two goals is to work on me being a little more selfish, and a little less shame-filled.

Even posting these is a selfish act, in my mind. Talking about my pain is selfish. Others are hurting worse than me; why should I share my pain and make the assumption that somehow my hurt is more important? But writing is therapeutic, more than talking, especially when I'm writing to no audience, when I think maybe 1-3 people will read this. And so, I'm being selfish, and I'm writing, and I'm publishing it, for me.

And shame. Shame I didn't catch the fever, shame I couldn't stop the seizure, shame I didn't know he was getting sick. And shame for not being only overjoyed that he survived. Shouldn't survival be enough? Shame at doing anything but focusing on my family. And shame for years of other events, all accumulating to a fragile being.

And so, two months after my world was rocked once again, we are taking some steps forward, weary, afraid, hesistant, but steps just the same.

We learned this week that neither Jay nor I, nor Lainie, carries the genetic markers for epilepsy. Obviously, our kids have a genetic predisposition for atypical, severe febrile seizures. It doesn't decrease the risk any. But it does mean that in a year or so, they will once again attempt to take Lainie off her anti-epileptic medication. We will again test the waters and see if she can make it through a fever and illness without seizing. That's one event, one fear, that I'm placing in a nice little box, closing with industrial-strength duct tape, and shoving in the back of the closet to deal with when it gets here.

And on Monday morning, John has an EEG. That will tell us whether he goes on a daily anti-epileptic medication. It will tell us the likelihood that he will have another seizure. That event is not far enough away to shove in a box in the closet, so I am focusing on coping with that, preparing for it, walking through it.

But, I know I do not walk alone. I know God will be at my side, carrying me when I need it. These lyrics from a song by Citizen Way hit close to home:
"These are the thing That I need to pray
‘Cuz I can’t find peace any other way
I’m a mess underneath
And I’m just too scared to show it
Everything’s not fine And I’m not okay
But it’s nice to know I can come this way

When I’m with You
I feel the real me finally breaking through
It’s all because of You Jesus
Anytime anywhere any heartache
I’m never too much for You to take
There’s only love
There’s only grace
When I’m with You"

 And while I need to know God's on my side, that He isn't being a hateful, vengeful being, that he has my back, I also need a physical being who also has my back. I'm leaning heavily on Jay right now, and I'm so glad he is there to hold me up, to force me to take those first steps, to encourage me when I want to curl up into a ball and block out the world. He and I have been through a lot, it seems, over the past 17 years. I just hope we can get to the sunny side of life for awhile and climb out of these shadows for good.