Tag Archives: Health

Unconditional Love

 Day 3 of Blogging for TSC Awareness Month

by guest blogger Caroline Clyborne Ramirez  (Austin, Texas)

image4-2Since our son, Leif, first learned to talk, we’ve been drilling him on a basic call and response:

“Why do I love you?”

“Because I’m your son.”

We did this because we wanted him to know that he was loved, no matter what. He had our permission to be lost and a knucklehead while figuring himself out. He could worry about other problems, like having to eat vegetables and sharing. He did not need to worry about courting his parents’ love.

Then, my daughter was born. At four months, we learned that Colette had a diagnosis– tuberous sclerosis. She had about 20 benign brain tumors and epilepsy. We didn’t know if she would be smart or independent. Our blank slate of a baby came with no guarantees.

The grief and terror of the first couple of months were intense. I image7wanted to pull away. I wondered if I could ever love this child like I loved my son. What had I told him? “I love you because you’re my son.” I’d promised him. Could I sincerely offer that to my daughter? I felt like a fraud.

Life got busy. I stepped away from my career and into the life of a medical advocate. Colette had weekly PT, OT and eventually speech therapy. She had frequent overnight hospital stays to adjust medication any time we saw seizure activity. There were eye appointments every 3 months because her seizure control medication endangered her vision. We drove to Houston every image6three months to participate in a clinical study. The insurance company required weekly hounding to cover the basics. It was only the beginning, and already, the tasks made me a busy bee. My son loudly demonstrated his frustration with the redirection of my attention. I tried to be enough and constantly fell short. I worried that our sleepy, medicated baby was the most flexible member of the family. Her big blue eyes sparkled, and she never complained.

It’s an odd thing to be given an open-ended diagnosis. There was no adjusting to the news. The hope and despair pulled me up and brought me down like a roller coaster– tea leaf predictions from smiles and gas. I wanted to either grieve or enjoy my child. The image2“what ifs” of the future were easy to Google, from skin lesions on her face to LAM in her lungs. What if she can’t learn and spends the rest of her life in diapers? What if she develops behavioral issues and hits us? My one life experience as a substitute teacher in a Special Education had taught me that was NOT my population. I did not reach out to moms with older kids whose fates scared me. I clung, tooth and nail, to the shallow end of the pool and hoped we would never have to drown.

I was in constant fear that she would take a turn for the worst and we, as a family, would not be okay. Meanwhile, Colette was a bright-eyed and happy baby. She splashed the water in her bath and gnawed on her Sophie giraffe. It was a bizarre juxtaposition. Colette was the poster child of innocence. I was her strung out Mom. In tiny slivers of clarity, I dug my nose into her neck and smelled her yummy baby smell. Regretfully, I often saw TSC more than I saw my daughter.

That was when she had seizure control. When that ended at 10 months old, my nightmares developed a physical form. I took detailed notes of what movements we saw and sent them to the white coats in this army. Please, I said. Please protect Colette. Our precious baby continued to smile, but she almost never babbled.

Even though we were creeping toward the chasm that I’d feared would swallow our family, I felt calm and sad. I acknowledged more publicly what was happening, and wept big tears as I faced how little control we had over a disease that had no cure. Colette had good days and bad days, and so did I. I spent my time taking her to appointments, arguing with insurance, and trying to keep things normal for our family. I felt depleted and I felt despair.

I realized at some point that my nightmares were a very loud image3statement to both my kids. Colette’s imperfection had made Mommy sad. TSC was in her DNA. Colette, by simply being born, had brought TSC and all of its challenges into our home. Her sweet demeanor may have been lovely, but it was a consolation, a kindness that momentarily offset a mountain of pain. She had more to worry about than having to eat vegetables, and even more to worry about than experiencing seizures. She had caused her family to suffer by means of existing. Something was terribly wrong, and that something was within me.

There was a woman on Facebook with a daughter who was cognitively two and physically 25. She kept posting proud mommy posts, and she baffled me with her acceptance of her child. I didn’t understand her, but something in me was shifting. I realized that a 2-year-old is lovable and delightful. My expectations of her child– that her child act 25– imposed onto her child’s existence something presumably painful that might not be real.

As I thought about her child, I was flooded with memories of my beloved Grandpa. Grandpa had Parkinson’s. He was sweet. He threw a purple foam ball back and forth with me. I didn’t “know better” that he’d lost something. I just loved him, and he loved me. Maybe I didn’t need the conditions I had for loving my child. Maybe I could just love my child.

As my eyes opened wider, I became aware also of how my vanity bled into my relationship with my son. He was so smart. He was so handsome. My pride appreciated pieces of him he never chose for himself. It was an easy mistake to make. In a family of nerds, his brains made him feel like our boy. However, he was getting extra credit because of his luck– because I was proud of his gifts.

How unfair of me. My job was to help him develop his character, and my preference for his smarts added conditions to my love and modified my expectations of him. His sister aside, I saw a rot forming in my parenting. Colette’s condition challenged my vanity and made me see both kids more clearly.

Humbly, as a flawed person mid-stream, I am challenging myself to change what I expect of both my kids. I am going to love them both because they’re my kids. I am not going to give Leif extra credit for being smart, and I am not going to turn Colette’s existence into a burden anymore. I’m just going to support her health as she needs and enjoy her in the present, stripped of all the disparaging “shoulds” that diminish her humanity. If I need to, I’ll think of Grandpa and find a way to throw a ball to my daughter. I’ll appreciate the day she can throw it back, but I won’t love her more for it.

I’ll keep love simple. That way, my kids can stop worrying about the quality of my love and start focusing on the road in front of them. When I whisper in my daughter’s ear that I love her, I now really know the answer. I love her because she’s my daughter– no matter what.

Brain surgery is coming this month. Finally, we’re ready.

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Tuberous Sclerosis Complex Awareness Month – Joy

Third Annual Blogging for TSC Awareness Month  Day 1

by guest blogger Ryan Kennedy  (Woodward, Iowa)

Joy

Who knew what this journey had in store?

I was going to be a father again.

My wife held a child within.image1

A healthy birth, everything looks great!

Joy!

Who saw this coming?

A heart murmur

A routine doctor’s visit

A heart tumor

Hope.

This can’t really be TSC. Can it?

More doctorsimage3

Neuro, nephro, cardio, genetics

My son has TSC.

Pain.

How bad will it be?

Infantile spasms

Sleepless nights

My son has autism.

Grief.

What does this mean?

He walks.

He laughs.

He smiles.

He has joy.

He gives me joy.

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A trip to the ER and other medical hassles.

And of the medical hassles, the ER was the most pleasant one.

Our Christmas Eve tradition for the last few years is to have family over for Christmas Eve dinner. We stuff ourselves with appetizers and leave a ton of leftover ham, mashed potatoes, pasta salad and green bean casserole. Within three minutes of our guests leaving, hardly even giving us time to complain about the bottle of wine that we opened and was hardly touched (it was one of those mondo size bottles that leaves me torn between not wasting perfectly good wine and the fear of sleeping through Christmas Day in a stupor), Connor was fussing for his iPad by the kitchen table and went down with a loud thunk. I picked him up and set him on the island, hoping for his standard forehead bruise. It’s a constant battle to keep his forehead a normal skin color, and that is why he frequently wears head protection. I realized he was bleeding and called to Chris for paper towels. One swipe and I knew we had a problem. This was deep.

We headed to the Kennestone Hospital ER where Connor received three stitches. We were in and out in just under two hours. It was impressively simple and undramatic, but I guess when you’ve already done the NICU and brain surgery, three stitches ain’t no thang. In fact, Connor had spent the entire day being royally uncooperative as far as smiling for photos, giving me the first in the waiting room with a hole in his forehead.

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Getting the stitches in was easy. Getting them out turned out to be the pain. The ER doctor informed us that while we could come back after the holiday, the wait would go back to standard long waits and suture removal is bottom priority. He recommended getting them removed at his pediatrician. I love his pediatrician. I do NOT love the office staff that stands between us. I called to make an appointment and was told that she’d have to check and see if anyone would do it on a young child’s face. “It’s just three!” I tried to persuade her. Two hours later, a nurse calls me back and says it’s okay. She transfers me to the scheduler. “Well, they don’t usually do this on kids under three. I need to check.”

“We just went through this,” I explained. “I was transferred to you by the person who got the okay.”

“I still need to check.”

WTF.

After a long hold, she comes back. “You’ll have to take him back to where you got them.” I don’t think a doctor was even consulted. It was just “office policy.”

I was pissed now. I informed her we would not be going back to the ER. I did not inform her of how wasteful of time and money this was, or what a burden this kind of crap is on the system. I asked if an urgent care would do it. She thought they would. But after careful consideration of the all the germs floating around in waiting areas and the fact that the flu is reportedly raging through Georgia, we opted to Google stitch removal and do it at home. If there were a lot, we wouldn’t, but three seemed doable, and it was actually pretty easy. So take that, idiotic office policy.

I also handled the fact that last month’s paperwork glitch regarding Connor’s Sabril (vigabatrin) prescription was apparently never resolved. Typically, if there is an issue filling this prescription, a group called SHARE works with the manufacturer to make sure prescriptions go out. I learned that this is not the case if you are marked non-compliant with the eye doctor paper work. They had sent us last month’s prescription in spite of the screwup. Thanks to the FDA, they couldn’t do it again.

You see, Connor takes a seizure med that carries some risk to peripheral vision. The FDA, when they finally got around to approving it in 2009 — 30 years after initial clinical trials — decided that if you wanted to use it, you had to have eye exams every three months. They also recommend ERGs every three months. An ERG requires Connor to be put under for 45 minutes to an hour. We stopped those a long time ago. He had one come back indicating a change. But nobody could tell us squat about what that meant, or if it was even more than a fluke. Not even all eye doctors recommend it. Some bend to the fear of the FDA and others flat out tell you it’s a waste of time and they can tell you very little with young children.

The regular eye exams (at which the eye doctors also acknowledge they can’t tell you much and it’s just an empty requirement) are very mandatory. Paperwork must be submitted to keep the meds coming. Some parents speak of obtaining waivers for these, but those waivers seem like unicorns to most of us. Something wasn’t submitted properly. Then it didn’t get fixed properly. And then it was decided by all parties (other than me) that the best option was to not give my child his seizure meds and status seizures, brain damage, even death was a better possible option than some minor impairment of his peripheral vision. The FDA is apparently well aware that one needs 20/20 vision when on a ventilator fighting for life. I did not inform the manufacturer or pharmacy that I was able to obtain some for Connor so that he was not at risk for the terrible dangers of cutting a med cold turkey. Eventually the kickass assistant at his neurologist’s office was able to fix the situation, further proving that they are the only medical office I have ever been able to count on.

Sabril was not the only source of my fun with pharmacies. I tried to refill his Onfi. When I called to do so I was informed they were out and I could fill it locally if I had the local pharmacy call to transfer it. Annoying (don’t you plan for your regulars?) but okay. I had filled it at CVS before. First I tried Walgreens because it’s closest. No pharmacy in the area had it. Then CVS. Nope. Then Kroger. Nope. I called the mail order pharmacy, Optum Rx, back and asked what was I supposed to do now.

“Well, you may have to call his neurologist and get a prescription for something else.”

Something else? Just replace his highly addictive benzo?

“I don’t understand how you just run out of something you are supposed to mail on a regular basis. I want a supervisor.”

Three people later, we were able to piece together that by “out” what they actually meant was that they could have it to me by the following Wednesday, but they didn’t have it that day (Friday). It apparently took three people to get this vital piece of information that took a major issue to a non-issue. In pissed relief, I told them that was fine.

Have I mentioned I have three different pharmacies for Connor? So much for safeguards where the pharmacist can be that extra set of eyes watching for interactions and issues. I have to get Sabril from CVS Caremark (which is great as long as the FDA stays out of it), Onfi is from Optum Rx (their motto is “At least we’re not Accredo”) and all others from a local CVS.

So now we’re stocked back up on meds. It’s 2015. Despite all the venting in this post, I think it will be a good year and I hope it will be a good year for all my friends in the epilepsy community that spent the holidays in hospitals. I will leave you with some pics of Connor’s Christmas (three times in three homes!) to cleanse the palate.

Emptying the stocking.
Emptying the stocking.

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With Aunt Donna.
With Aunt Donna.

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Checking out the turtles with Grandpa John.
Checking out the turtles with Grandpa John.

 

A night in the hospital.

There has been a lot going on lately. Last Sunday I attended the celebration of life for Trinity Sumlin. I met her mother Sheryl when we were fighting for medical cannabis and HB 885 during the last Georgia legislative session. A couple months after HB 885 failed to pass — thanks to political gameplay, not lack of support — Sheryl took Trinity to Colorado to treat her. They were one of the families I shared about in this post. But sadly, Trinity passed away September 5. She was only 11. I was honored that Sheryl asked me to write the story to go in the children’s book she wanted to pass out at the celebration.

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Connor’s seizure activity has been up and down. We really don’t see much activity in his waking hours, with the exception of little myoclonic jerks of his arms or sometimes his head. But all his complex-partial and tonic-clonic seizures are sleep related, so those happen during naps or at night. He’s also had a couple strange incidents in which he was not having obvious seizure activity, but he was weak and lethargic as though he had. Sometimes that has lasted several hours which concerned us. On Friday he was like that all day. Sometimes he’d start to perk up, only to decline again. He couldn’t sit on his own or even support his head. I slept with him on Friday to keep an eye on him. By midnight he was raring to go and things looked promising. Saturday morning he wasn’t quite as perky, but he did eat breakfast well (the day before he had no interest in drinking and eating) and was laughing so we thought it would turn out to be a normal day. Chris’ parents were in town and we all  had plans to go to the North Georgia State Fair. This is how the day started:

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As you can see, Connor looks less than enthralled. The one ride I took him on I had to hold his head to keep him from slumping over. We had never had two days of this before and all I could think was that there was some subclinical seizure activity going on (for those who don’t live in the world of epilepsy, that means seizures that appear on EEG but don’t cause visible activity). We called his neurologist’s office and his actual neuro also happened to be the one on call–which makes life soooooo much easier–right, TSC families?! When I told him he wasn’t really eating or drinking, he advised us to go to the ER. We were hesitant. believe it or not. That probably sounds crazy to those outside this life, but as most of us who have been dealing with this stuff for a while know, you start to realize how little can really be done at the ER. You’ll find many special needs families that have the attitude of “what can you do at the hospital that I can’t do at home?” (Besides infect me with MRSA).  I mean if he was in a status seizure, or had something life threatening going on, that’s obviously ER territory, but this? We weren’t real confident. But it had been going on so long, we followed the advice. This is how the weekend ended up:

Getting fluids in the ER.
Getting fluids in the ER.
This bandaid is AMAZING!
This bandaid is AMAZING!
Typical man.
Typical man.
Perking up!
Perking up!
Doc says it's time to roll out! (to tune of Ludacris)
Doc says it’s time to roll out! (to tune of Ludacris)

They ran all the standard blood and urine tests (Connor chose not to pee for hours so when he did fill the bag there was no way to get it off without spreading the golden warmth everywhere). He was also hooked up to a keto-friendly (he’s on MAD) saline drip. Tests all came back normal. But when he didn’t really perk up after the saline, our neuro told the ER doctor not to send us home. This is where things got hairy. The ER doctor told us we were being admitted because of possible subclinical activity. So guess what we thought? How does one find out about subclinical activity? WITH AN EEG!!! I went home to pack a bag while Chris stayed with Connor. I was on my way back when I got the text. We were admitted , but they don’t do EEGs on the weekends. The rest of my texts to Chris were 90 percent F-bombs. The. Monopoly. Children’s. Healthcare. System. In. Georgia. Doesn’t. Do. Emergency. EEGs. On. Weekends. I was well aware that they didn’t schedule routine EEGS on the weekend, but…but…but… (And I later found out this happened to another TSC family who went in with INFANTILE SPASMS on a weekend).  This is inexcusable. Utterly inexcusable. But I’ve never been quiet about how I feel about Children’s Healthcare of Atlanta at Scottish Rite (or CHOA in general). So we spent the night with Connor hooked to an IV to keep him hydrated. He did start to perk up late that evening and was much better the next day so we were discharged. I was happy to have him get the IV until he would eat and drink again and I totally understand why he was admitted. When we talked to Connor’s neuro, he said that was the reason he asked for us to be admitted, and that’s fine. The ER doc was either confused or we misunderstood the implication about the EEG, I guess.

But that doesn’t change my thoughts on the matter. There is no excuse that someone can’t get an EEG on the weekend for an emergency situation. I understand that hospitals aren’t as heavily staffed at that time, but this is not okay. So if a child has a seizure for the first time ever on a Friday night, you are crap out of luck until Monday? If a child presents with infantile spasms on a Saturday morning, too bad? We can’t confirm until Monday even though IS requires immediate treatment? I’m just at a loss.

I do want to say that other than that, the stay itself was probably the best one we’ve had. Attentive and proactive nurses and the attending doctor on the floor was fantastic, a far cry from the time he got EEG glue in his eye and I had to demand something be done for 17 hours before anyone would look at him. By then his eye was swollen shut and he was in terrific pain and requiring antibiotics. It also made me feel better about the fact that it took 16 hours to get paper towels brought to the room and that the urine sample that was spilled never got mopped or sanitized (there went our four paper towels that were left in the room). Requests were definitely made by our nurse and techs for those things to happen, but whoever was on the other end of the line has a sweet job because they never bothered to do it.

On an amusing note, the pharmacy didn’t have his meds on hand (a specialty one they never have, and the other they didn’t have in the right form) so we were asked to turn over our meds to be dispensed by the pharmacy. (Wonder what that will look like on the bill?) They have to keep his Onfi under lock and key because it’s a controlled substance. His Klonopin is too, but I didn’t turn that over since it’s just for clusters. It’s funny to think he’s prescribed two meds with more street value than the medical marijuana the law prohibits me from having.

Rosie the dog and Connor had an exciting couple of weeks. My parents went to Italy so we had their batsh** crazy full-grown kittens for two weeks. Rosie is in love with Thatcher the black cat. Followed her adoringly and stalkerish the whole time. She also enjoyed chasing Theo, who spent a good portion of the past two weeks hissing at everyone. One of them broke a wine glass. They were allowed to live only because my wine wasn’t in it.

I awoke one morning with four cats in my room looking at me. It was an eerie glimpse into the life of a cat lady, a possible calling I chose to ignore. I emailed my mom to tell her of the terrifying experience and she responded by offering to bring these back from Italy for me:

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Random note: Connor and I made the local news. Check it out here.

I leave you with photos of our zoo. Our two cats are not present in the photos as they opted not to set foot outside our bedroom for the duration of this social experiment.

My mom bought them a cat tent for the stay should they become too unruly during the stay...Connor took a liking to it--more than the tent we actually bought him to play with.
My mom bought them a cat tent for the stay should they become too unruly…Connor took a liking to it–more than the tent we actually bought him to play with.
I'm like a cat. I wanna sit in laps.
Me, me! I’m like a cat! I wanna sit in laps!
Might as well taste the goods.
Might as well taste the goods.
Rapunzel....Rapunzel...
Rapunzel….Rapunzel…
Neighborhood Watch
Neighborhood Watch
Wanna play?
Wanna play?
Where are you going?!
Where are you going?!
Naptime.
Naptime.
I don't know what they were doing, but somehow they collapsed the tent down on themselves.
I don’t know what they were doing, but somehow they collapsed the tent down on themselves.
What goes around, comes around.
What goes around, comes around.








 

Another blogger talking about the #IceBucketChallenge! *groan heard worldwide

Too bad. I’m gonna write about it anyway. I’m terribly jealous of it, you see. What I wouldn’t give  for this kind of exposure for TSC. But what it has done for the ALS Association is amazing. From July 29 to August 21, the ALS Association  received $41.8 million in donations, compared to just $2.1 million during the same time period last year.

Amyotrophic lateral sclerosis (ALS) is a progressive neurodegenerative disease that affects nerve cells in the brain and the spinal cord. Motor neurons reach from the brain to the spinal cord and from the spinal cord to the muscles throughout the body. The progressive degeneration of the motor neurons in ALS eventually leads to their death. When the motor neurons  die, the ability of the brain to initiate and control muscle movement is lost. With voluntary muscle action progressively affected, patients in the later stages of the disease may become totally paralyzed.”

Despite how horrific the disease is and the incredible success of the ice bucket challenge, the amount of criticism is incredible.

1. It’s a waste of water (everyone who said this better be taking three-minute showers).

2. Not everyone who does it is actually donating (okay, I agree that’s lame, but maybe, just maybe, they challenged someone who challenged someone who wrote a big fat check. And at this point if you haven’t at least heard of ALS, you are living under a rock).

3. People aren’t including the link or contact info to donate, or any factual information about ALS (ideally, yes people should make it as easy as possible to donate. If you haven’t done it yet, please include the link to ALSA.org)

4. Participants just want attention. JUST DONATE AND SHUT UP ABOUT IT.

Yep, number four is the one I want to address. Wouldn’t that be wonderful? Wouldn’t it be delightful if people just woke up and said, hey, I think I’ll donate to charity today! Yes, of course that does happen sometimes, but the reality is that it often takes a big disaster, media coverage, huge event, celebrity endorsement, or a diagnosis of a friend or family member.

Some people think the ice bucket challenge is nothing but people wanting attention when they should just quietly donate and say nothing. I might have made that cynical statement myself a few years ago. But I know something now that I didn’t know back then. It is extraordinarily difficult to get people to donate to your cause when you don’t have the NFL wearing your awareness color for a month or celebrities talking you up on late night television. And I think a lot of people criticizing it have no idea what it is like to try and draw attention to a charity that is helping your child, spouse, family or friend.

Those of us dealing with lesser known disorders are begging for support on social media. And if some “annoying trend” of dumping ice water on your head is what does it, so be it. We don’t have time to worry about whether our campaign is “like totally annoying” or “trendy” or “stupid.” What we know is that someone we love is hurting and we want relief for them. As I stated on Facebook (and was met with WAY too much enthusiasm by my friends for seeing me covered in crap) I would roll around in horse poop if it would bring in the donations. Just imagine what the critics would say about that. And then I would show those critics a video of Connor seizing or a picture of his two seizure-related black eyes.

If a silly gimmick brings in the money, so be it. I’d rather people donate because of a fun challenge than because they have received the heart-breaking news that they or a loved one have received a terrible diagnosis.

The first TSC walk we participated in was a couple months after Connor was born. He had just gotten out of NICU. We raised six times the goal. In the two years since, we have only raised about a third of that amount each year. I don’t say that to be critical. If you have ever donated at any point, I am extremely grateful and don’t consider anyone obligated. But I share this to make the point that it takes something big to get the donations. Connor’s new diagnosis was the big event that triggered such generosity in 2012. But now it’s just a normal, run-of the mill, annual activity of mine to raise money for the walk that no longer garners the same degree of attention. Who knows; maybe I really will have to roll around on a stable floor to get the attention I got the first year. That’s just how it goes when fundraising for charity. I mean, why do charities do walks, 5ks, banquets, or sell products? Why don’t people just donate! Because we’re human. We like t-shirts, food and Girl Scout cookies. And now — dumping ice water on our heads.

Why does something bad have to happen to inspire people? Is it such a terrible thing that people are donating because of something light-hearted and fun?

And to my friends that were challenged and opted to do it on behalf of the TS Alliance, I thank you from the bottom of my heart.

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Seizure Hunter — The Elusive Prey

Seizures are really obvious. I couldn’t possibly miss one. We’ve all seen them on television: the fall to the floor, the violent thrashing, maybe some foaming at the mouth. Therefore, it’s really easy to keep track of them for the neurologist and make decisions about which medication is the perfect match for your situation.

Hear that? That is the sound of the collective eye rolling of the epilepsy community. Just kidding, ya’ll!

It turns out that a seizure can look like damn near anything. Eye rolling, staring, wandering, confusion, a single limb jerking, lips puckering, a split second head drop, a split second loss of muscle tone that sends a person plummeting to the floor, jackknife motions of the body, going stiff as a board, a scream…or nothing. Nothing at all. All you know is that suddenly your child went from smiling and laughing to laying his head on the floor and going to sleep, or he’s suddenly so weak that his arms give out and he smacks his head on the floor resulting in two black eyes. It’s not just seizure freedom that can be elusive, but the seizures themselves.

Was that a seizure? Was that? And what about that? Do I count that if I’m not sure? Was that one seizure or two different ones back to back? And that one? That one looked like a weird combination of tonic clonic and complex partial, so which do I mark it as on my Seizure Tracker app? Our smart phones fill with videos of suspicious behavior we share with our online support groups and doctors trying to get answers. It takes an hour to do the dishes because I turn around and look at the baby every 30 seconds to see if anything is happening. Every stoplight I turn around and squint at the baby mirror. If he has actually managed to go a few days seizure free, when one happens, I play mind games with myself about putting it in the tracker. That was a small one. Am I sure it was really a seizure? Does it count if I don’t record it?

I think the first year was the worst. Babies are weird and do weird stuff. How do I differentiate normal weird from abnormal weird? Is he discovering his hands or is he seizing? Trying to roll over or seizing? It’s even worse if it is the first child and there is no one to compare him to. It’s a little easier with a toddler. Not easy. Just easier. It is easier for me to distinguish typical behavior from anomalies, or if a movement was intentional or not. Not all the time, but enough to do the dishes in a reasonable amount of time. Or settle for a quick glance in the rear view. Sometimes I even settle for logging the seizure type as “unknown .”

And choosing just the right medication? Yes, that was another collective eye roll. We experiment, and change doses, combine two, three, maybe even more seizure medications. We try one med with great anticipation because it made another kid seizure free, only to find that it makes our kid have more. And if we find one that works, eventually he insists on growing or something else changes, and the experiment continues.

I have to accept that there are limits to what I can fix and do the best I can.

Most importantly, I finally realized that it doesn’t make me a bad parent if I don’t always know. I WILL miss seizures. I won’t know what every movement is. There won’t always be answers. There will be good days and bad days. But they will be worth it.

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Thank you to joshprovides.org for granting Connor an Emfit seizure monitor.
Thank you to joshprovides.org for granting Connor an Emfit seizure monitor for his crib.

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Connor just walked his longest distance ever!

Tuesday Connor walked his longest distance ever independently. He’s been getting better and better at walking with the emotional support of holding a hand or even just a finger, and sometimes even just knowing our hands are hovering over his shoulders is enough. We were waiting for aquatic therapy to start and walking around the pool area for practice when he suddenly let go of my hand and went on his way. His previous record was eight steps in our house. This time he walked half the the length of the Olympic pool. The lifeguard clearly thought I was insane chasing after him, hands at the ready to catch him and whisper-shrieking “Oh my God, oh my God!” As we passed him by I gasped, “He’s never walked this far before!” So then the lifeguard got excited and when Connor finally did go down he joined me in clapping and offering congratulations.

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Chris did his part to add to the family excitement Tuesday, too. He mowed the front and back yard without incident, came in, showered, changed, sat on the couch to relax and THEN got stung by a bee. It must have gotten inside at some point during the mowing process as we went in and out. But his throbbing arm is simply the price that must be paid to lord over our neighbors.

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I have also been enjoying time in the great outdoors.

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My other exercise comes from picking up after Connor. He has always enjoyed starting his day by emptying his toy tubs and pulling all the books off the shelves, but lately he’s been a little too enthusiastic about chucking his belongings behind him. Once everything is in a pile behind him, he turns around and starts chucking everything in the other direction. He is highly amused and excited by this, so I think it’s a stimming behavior.

Which leads me to my plea. While I certainly lack the degree of cleanliness OCD my husband demonstrates, I do have an obsessive need for the house to be clean when people walk in (except for his at-home therapists–I blow their mind when I’m even actually dressed). I don’t care what it looks like five minutes later…but it must be clean when guests walk in. For that reason, you MUST be on time when you come over. The protocol typically calls for a mad rush of throwing all the toys in the correct baskets within the 10-minute window before expected arrival. Until you walk in the door, I must distract Connor from his need to rectify the disgusting clean I have made. It is not always pretty. But once guests have entered and caught a glimpse of the clean floor, I can unleash the kraken.

The weekend before last we went to a social event held by the Georgia early intervention program Babies Can’t Wait. It was a bit surreal as I heard my name and looked up to see someone I hadn’t seen since high school. I had this strange moment of trying to process that intersection of someone from my past crossing into the special needs department of my life. There were the normal “how are yous” and then the awkward trying to figure which questions were okay to ask. I was thinking, “I can ask, right? That’s not weird…is it?” Over and over. She was the first to break the ice and we discussed the two rare genetic disorders that had unexpectedly altered the course of our lives. But these are the things, along with Facebook support groups, that keep the bitterness and the feeling of being targeted by life at bay. Oh, the life paths you couldn’t fathom when you were walking the halls of high school…

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