More medication adventures

My last round of Botox left me with some strange complications. The day after the shots, I developed a stabbing pain in the corner of my left eye. It was on and off for two days and eventually subsided. I was left with a foreign body sensation in that eye for a few days after that. I’ve never had this before.

One shot on the left side of my head is incredibly tender, a week later. I can’t look at to see what’s going on, but I assume it’s bruised.

This time and the previous time, I had a new practitioner give me the shots. Before, it was the MD that runs the headache clinic. He’d come in, stab me all over like a sadist, and be done with the 36 shots in about 45 seconds.

This new practitioner, an NP, is slow and deliberate with each shot. It’s more painful this way. And, based on the last two appointments, causes me side effects.

I used to think the sadist was a little aggressive and maybe slowing down would be less painful. But, that’s not the case.

Next time, I have to see someone completely different, so who knows what sort of fun I’ll be in for at that appointment.

I’m hoping this sore spot goes away quickly. I hope it’s not infected or anything.

I also had more adventures trying to get my Ubrelvy refilled. The NP gave me a coupon. I tried to use it at a retail pharmacy, and my insurance company blocked the damn coupon. Once they realized I had a new script at the retail level, the mail order pharmacy canceled my remaining refills with them. But, now that I can’t use the coupon, I have to go back to mail order. So I had to go back to the NP and ask her to e-scrip a new prescription back to mail order.

All of this hassle! And I know how to navigate the healthcare system and the insurance companies. I can’t imagine what this is like for someone who can’t advocate for themselves.

I’ve said it before, but it shouldn’t be this hard.

Mini life update

I can feel the Botox wearing off. My neck and shoulders are stiff. I’ve needed the Ubrelvy more in the last week than I’m used to. My appointment is late in the week for the next round of shots.

The prior authorization on my Ubrelvy has expired. This is a double edged sword for me. I hate prior auths (PA) from the patient’s perspective. They approved it once, so obviously I meet criteria per the insurance company‘s policy. What possibly could change in a year that would make me no longer meet criteria? What a dumb practice this is.

From the pharmacist’s perspective, I like PAs. A lot of pharmacists have jobs working PAs. The job market for pharmacists in the US is over saturated. There are too many pharmacy schools churning out too many new grads. Not enough pharmacists are retiring and not enough jobs are being created to keep up with the surplus. The more jobs that stay in pharmacy, the better. Therefore I don’t want to see PAs go away.

There is also a PA on my Botox and that will expire soon, too. It’s always a fight to try to get things covered.

Today, I’m on seven days in a row of working. The neuro fatigue plus the headaches from the Botox wearing off is making this a bad week.

My oldest starts school this week. He has trouble with insomnia and his bus comes at 6:50 AM. I’m anxious about how he’ll handle the extremely early start.

My other kid was just prescribed an epipen. I’m fighting with the insurance company to allow an early refill so he has an epipen at school. I’ve had to call the school a few times to get the necessary paperwork for everything.

I hope things calm down, but I don’t think they will. I’m tired.

Fertility meets stroke

My children were all wanted. So much so, that I underwent four rounds of in vitro fertilization to have them. Two of those rounds were complete failures. The second round, I developed ovarian hyper stimulation syndrome. This causes the ovaries to swell and become painful. I couldn’t walk without severe pain. My abdomen was huge.

Despite all the eggs I made, none of the embryos survived that round. We didn’t get to transfer any. I was crushed, devastated, and all of the other synonyms you can think of.

I also, apparently, was somehow exposed to the Hepatitis C virus. But I didn’t find that out until later.

After the two failed cycles, we switched to a different fertility clinic. I had to start over with all of the tests, which included a full panel for any blood borne infections. I never imagined any of them would come back positive. To use a quote from my favorite Stephen King character, “God always punishes us for what we can’t imagine.”

A few weeks later, I received a letter from the Department of Health stating that I tested positive for antibodies to the virus that causes Hepatitis C, and that this didn’t mean I necessarily had the virus or an active infection.

I was shocked and terrified. I was also angry that I got this news, not from my fertility clinic, but from a letter in the mail. I called the clinic immediately, and I was hysterical.

It took them hours to call me back. It was a Friday and I was an anxious mess thinking they wouldn’t get around to talking to me until Monday. I called a few times and begged for someone to talk to me.

Eventually, the doctor called me back. She explained that the clinic was aware of my lab results, and was not aware the Department of Health would be sending me a letter. The doctor said my labs indicated that I had been exposed to Hep C, and therefore had antibodies to the virus. The labs also indicated I did not have an active Hep C infection. The doc said I needed to see a hepatologist and that my fertility treatments were on hold until I was cleared by hepatology. They said they don’t allow embryo transfers to women with active Hep C due to risk of exposing the fetus.

I remember that hepatology appointment so vividly. It took at least two months to get an appointment. I had an early morning appointment, the first one of the day. I waited for two hours before I was seen. They brought me back into the exam room and no one came. I eventually left to go looking for someone, and was told the doctor wasn’t even in the building and they had no idea how long the wait would be.

I almost left. I came so close to leaving. Just fucking giving up. I cried alone in that exam room, so fucking frustrated at how awful it all was. All I wanted was a baby, and here I was, with two failed cycles, and now a fucking Hep C exposure? What the fuck was this life I was living?

I texted my husband to let him know I was going to leave. He convinced me to stay and wait, and he was right. So I waited.

Eventually, the doc showed up. I can’t remember if he apologized for being so late. But, I told him why I was there. He looked over my labs. He said, “you were exposed. No one will ever be able to tell you how or when, but you were somehow exposed to Hep C. However, you also don’t have hep C. The labs are clear about this. I’ll let fertility know.”

He softened as he was documenting. He said, “my sister had to go through IVF. They have a son now. I know how hard it is. I wish you luck.”

He was kind. He also said that he could have cleared this up with a phone call with fertility, and seemed annoyed they put me through the process of having an in person appointment. I was annoyed, too.

We got the green light for IVF. IVF is an emotionally taxing experience even in the best of cases. We transferred two embryos and that round ended up resulting in the birth of my oldest son. We also had 7 embryos make it to the blastocyst stage for embryo transfers. They were frozen for future use.

About a year after my son was born, we did a frozen embryo transfer. The doctor recommended we transfer two embryos due to my history of making shitty embryos.

I never imagined what happened next. And God always punishes us for what we can’t imagine.

That pregnancy resulted in quadruplets. Yes, both embryos split into two pairs of identical twins. One of them passed very quickly. The other three continued to progress.

I was terrified. All I could think about was premature babies, long NICU stays, brain bleeds (ironically, not my own), cerebral palsy, retinopathy of prematurity, and necrotizing enterocolitis. Plus the logistics. We’d need a bigger house and a larger car. I’d have to worry and stress about moving while still working full time, growing triplets, and having a one year old.

What the fuck was this life?

Look, I wanted kids. I did what the doctor recommended. They said to transfer two embryos and we did. But, no one in their right mind wants higher order multiples. It’s not good for the mom, and it’s really fucking bad for the babies. And our story is no different.

I almost immediately developed gestational diabetes and required insulin and frequent sugar checks. I had gestational diabetes with my first pregnancy, as well.

My baby B was found to have a plethora of problems. I was told at my 18 week ultrasound to expect him to pass within the next two weeks. I was also told his death might lead to preterm labor and I could easily lose all three babies.

I walked around like a zombie wondering if I would know when he died. If I’d feel different. If he was already dead by the time I got home.

Two weeks went by, I had another ultrasound and he was still alive.

We were stuck in the hell of limbo. Not knowing if he’d make it or not. Not knowing if I should tell people I was having triplets or twins. We didn’t get to celebrate anything because it always felt so dire.

With each successive ultrasound, he was still alive. He kept growing, but slower than the other two. He didn’t have a lot of amniotic fluid around him. There was a good chance his lungs would be under developed.

Around week 21, I got up in the middle of the night to pee. One of the babies waters broke. I sighed, thinking, “this is it. This is the end.”

I went back to bed and waited for labor to start. I cried. But, I never developed any contractions. I eventually fell asleep.

In the morning, I called my OB, who got me in right away. She said she didn’t see any leaking fluid and the fluid levels on the ultrasound were the same as the previous ultrasound. She convinced me I just peed myself. But, I knew that was bullshit.

I went home, and I kept leaking fluid. Not constantly, but frequent gushes of fluid. Despite telling all of the doctors, I never had a contraction and no one could ever see the fluid leaking, either on exam, or on ultrasound.

Eventually, around week 26, as we moved into our new house, that fluid turned bloody. This was a change and I packed my bags and just headed in to labor and delivery. Finally, they were able to confirm that Baby B’s water had indeed broken. I was admitted to the hospital until delivery.

This is where the story of my fertility journey and my stroke journey intersect, I think. The stress of those babies jammed into my ribs, pushing all my organs up, gave me crazy tachycardia. I could not breathe. I had a cardiologist consult in the hospital because I was so dyspneic and tachycardic. They found my heart was fine. But for almost six weeks, I laid there, stressed to the max, heart pumping, sucking air like a fish out of water, body taxed. And I believe that’s when and why my brain aneurysm formed.

The babies came around week 32. Maybe someday I’ll do a blog post about the NICU.

I still have five embryos frozen.

We live in a red state. Not the reddest of states, but it’s red all the same. With Roe being overturned by the SCOTUS, I have made the decision to have our remaining frozen embryos destroyed. I didn’t want to make this decision and I don’t make it lightly. But, it’s clear they are paving the way for IVF to be restricted. They have stopped fertility cycles at my IVF center because no one quite understands yet what will happen. I think it’s highly probable they will require frozen embryos to be implanted regardless of what the couple wants. We feel forced to make this decision.

I almost died, could have died, more than once in our fertility journey. I feel so sad thinking my daughter that I never got to have might be among those embryos.

But, I’m grateful to be alive and to see my four sons grow up. I hope they are grateful to have me around.

Possible TIA

I’ve had a headache for a week. Off and on, it comes and goes, but was constant yesterday. A squeezing pressure around my forehead, wrapping around my temples. My scalp is sensitive. Rated 8/10 at its worst, about 4/10 at its best. My vision has been blurry all week. When I walk, my left side is weak. I have trouble walking in a straight line. There is no facial droop. My upper extremities are fine.

The slur that I hate so much, the one that always gives me away as a stroke survivor, is worse than normal.

I maxed out my headache meds and didn’t get any relief. I called the stroke center for guidance. They said since my MRI was clear, they don’t think my symptoms are related to my stroke or my brain aneurysm. The nurse said she felt all of my symptoms were related to my ongoing headache. They punted me to the headache clinic.

I called the headache clinic, and they called me in a new prescription to get me out of this headache cluster: a 10 day taper of valproic acid. I took the first dose last night and the headache is somewhat better, but not gone.

I’m still wobbly, slurring, but my vision is better.

I’ve had at least one, and I suspect more than one, mini-stroke. My current symptoms feel like that. There’s nothing anyone can do for a mini-stroke. There’s no treatment, and it doesn’t show up on imaging studies. It’s diagnosed based on symptoms. I’m diagnosing myself at this point.

I don’t want to spend my weekend in the ER with a bunch of idiots who blew their hands off setting off fireworks. Especially when I know they can’t help me anyway. So, I’m riding it out, hoping it gets better.

A TIA is typically a warning that a major stroke may happen. I’m already on one anti-platelet. Having a mini-stroke while on an anti-platelet is not a good thing. I’m going to take some aspirin in addition to my clopidogrel for the two weeks to hopefully prevent a larger CVA.

I never thought this would be my life at 42.

The Summer Ahead

I have a pretty stressful summer ahead.

It was already stressful with my MRI. Thankfully, that’s over and everything came back ok.

My son has a number of health issues. He’s facing at least one, and most likely two surgeries this summer. He also needs labs that can only be drawn at the Cleveland clinic main campus branch. These labs have to be done two days in a row. Depending on the results of those labs, he might need an MRI, which will require general anesthesia.

My other son is undergoing intensive therapy called interactive metronome to help him manage his ADHD symptoms. He goes three times a week for six weeks.

My oldest son has a number of dental concerns. He has sensory issues with his mouth and just immediately vomits while the dentist tries to work on him. So, he has to go under general anesthesia to have all this dental work done.

The kids have T-ball/baseball games. My oldest has Cub Scouts. I’m trying to get him together with kids from his class for play dates because he has difficulty making friends. He wrote in his journal at school last year that he wanted friends. It broke my heart.

My job is continuing to implode. Everyone is quitting. Those of us that are staying, are looking around for something else. We are all miserable. I’ve applied to several other positions and been immediately rejected. Everyone is trying to move around. The competition is insane.

Our air conditioner isn’t working. Between paying all the bills, the unexpected expense of my dining room needing to be rebuilt, and now this….I’m stressed about finances.

The fatigue has been worse the last two weeks. I have a big presentation at work next week, and I’ve been working late hours on that.

At T-ball this week, the assistant coach asked about the triplets. He did it in a kind way. He didn’t ask, “did you do fertility treatments?” I snap judge anyone who asks me how my kids were conceived. It’s rude and none of anyone’s business. Anyway, he asked who was oldest. And I explained they were triplets. He asked how we do it. And I told the truth. It’s hard. It’s chaos. It’s exhausting. He asked me how I take care of myself and I didn’t have a great answer.

It’s something I need to work on. Self-care is something I don’t have a lot of time for, but I need to make it more of a priority. The mountain of shit that is looming over me right now is just awful. I’m anxious, tired, and worried.

I really hope for better days ahead.

MRI

I had my MRI today to check on my aneurysm and to look for new ones.

Last week, the cerebrovascular center called me and told me the NP I had an appointment with after the MRI was out on leave. She went out on leave in April. But they “just got around” to letting me know about it four days before my damn appointment.

I have a VP shunt that may be inactivated by the magnet in the MRI. It’s imperative the shunt is checked after each MRI. This was drilled into me when the shunt was placed

But, the person from the cerebrovascular center had no idea. I had to tell her at least four times that I needed to be seen to have my shunt assessed. She stuttered and stammered and placed me on hold. She eventually came back on the line and gave me a phone number to call after my MRI. She said they’d help me get my shunt checked.

Can you guess what happened?

If you guessed that I called the number and the people on the other end had absolutely no fucking clue what I was talking about, you’d be right.

I’m on vacation from work this week, and I got to spend the entire day downtown at the world class Cleveland Clinic waiting for someone to get their shit together and tell me if my shunt was programmed correctly.

Luckily, the X-ray tech was not only polite, but he recognized I needed help, and he did not hesitate to juggle his patients and assist me. He told me that usually when he gets an order for someone with a shunt, they provide him with a pager number for someone to come and check the shunt. He said it was odd that he was not provided this number.

He knew the number and he paged the guy. This guy is not someone who was familiar with my case and didn’t feel comfortable clearing me. I understand the liability aspect and I didn’t blame him.

He had to review my case with the surgeon who placed my shunt. I waited awhile, but was eventually cleared to leave.

Now, I have to wait an agonizing two days for a virtual appointment to go over the results of the MRI.

I’ve been having more headaches and vision problems. I’m definitely anxious and concerned about the results.

The issue with the shunt did not help my anxiety.

Panic attack

Earlier this week, I had the worst panic attack of my life.

I’ve been on a nightly dose of Klonopin for the last couple of years. My psychiatrist put me on this to help with my PTSD symptoms.

A little over a year ago, I tried to come off the Klonopin. I slowly tapered down the dose. The nightmares came roaring back. I woke up one night, drenched in sweat, heart pounding, having had a nightmare that I no longer remember. I got up, and paced around, trying to calm down. A few minutes later, I heard my son sobbing. It was around 3 am. I went into his room, and we sat and talked for a bit. He’s prone to growing pains and was having pain in his legs. I gave him some Tylenol and a kiss, and he went back to sleep. Taking care of him briefly took my mind off my own issues.

Ultimately, I decided going off the Klonopin was not worth the effects on my mental health and I re-started it.

I decided a few weeks ago to try weaning off of it again. It seemed to be going well until a few nights ago. In general, I’ve been feeling better over the last few months.

A few nights ago, I fell asleep just fine, but woke about an hour later. My heart was pounding out of my chest. The tachycardia was so intense, the bed was shaking. I was short of breath. I was convinced I was going to die. I’ve had a number of panic attacks before, but nothing to this scale. I’ve never felt like calling 911 during a panic attack before. But, this time, the thought crossed my mind. Ultimately I didn’t go that route because I didn’t think I could actually speak to the 911 operator and effectively tell them what was wrong.

I managed to take a Klonopin, I put on a guided meditation for severe anxiety, and I also took a beta blocker to slow my heart rate. Eventually, I fell asleep. But for a good 2 hours, I was in an agonized state.

I hate that I’m so reliant on medication to manage my symptoms of anxiety. I’m going to try to power through the Klonopin taper. My goal is to only use it if I really need it, and not default to taking it every day.

I hope I am successful this time around. But, that panic attack really scared the crap out of me. I don’t remember having a nightmare. I’m not sure what triggered it.

I’m hoping by stopping the Klonopin, I’ll have more energy. The sedating effects of my medications could be contributing to my fatigue.

The last few nights since this episode, I’ve slept well and haven’t had a recurrence of the severe anxiety. Here’s hoping it was just a bad night.

Quick update

I was supposed to get my next round of Botox shots this week. Because of the new schedule at work, I had to push it back. The Botox has always worn off about two weeks before my next dose was due. That would’ve been two weeks ago.

Since I pushed it back, my appointment for the Botox is not until the 26th. 36 shots to the head, neck, back, and shoulders.

As expected, my headaches have come worsened. I’m also sick, and the sinus pressure isn’t helping matters.

This is all so frustrating to me. I have no control over my schedule at work, and I have no control over these damn headaches. But, despite the headaches, I have to keep working.

I’m trying to get as much rest and fluids as I can. The decongestants help somewhat. The Ubrelvy helps when the headaches are unbearable.

I can feel the muscles in my upper back, and neck getting stiffer with each passing day. It’s amazing how much the Botox helps with the muscle tension.

I’m hoping the next round of Botox takes effect quickly. Typically, it takes about two weeks to kick in.

Last night, I had pretty severe vertigo. I’ve never had that symptom before and it made me anxious. As with any new neuro symptoms, my first though is, “is this another aneurysm?”

My MRI is about six weeks away. Hopefully, everything is clear. But, it’s always on my mind.

Five years ago

Five years ago today, my brain aneurysm ruptured. I had a number of surgeries, complications, and after-effects.

I had coils placed, and then an external ventricular drain. I developed Takotsubo cardiomyopathy. I was extubated, and then re-intubated. I developed hydrocephalus that didn’t resolve. I had vasopasms that wouldn’t stop. I had another surgery to inject medications into the aneurysm to stop it from spasming.

I spent an agonizing 36 hours awake, alert, and intubated. The anxiety, panic, and trauma from this experience will live with me forever.

I had surgery to have a shunt placed right before I left for rehab.

After my rehab stay, I had another surgery to put a stent around the aneurysm to divert blood flow away from the neck.

My last angiogram was all clear. I have an MRI in June. It’s always anxiety inducing. This year is no different. I’m having more frequent headaches. I have weird vision changes a few times per day. Flashes of light, mostly. Will there be something on the MRI? I don’t know how I’d live with the anxiety of knowing I have another one. I hope this isn’t the case, but I’m preparing myself mentally in case it is.

I’ve learned a few things since my stroke, and it reinforced things I already knew.

◦ You never know what someone is going through. To look at me, you’d never know I had a massive stroke, suffer from depression and PTSD, or that I have a headache most days of my life. It’s important to be kind and patient with people. It goes a long way.

◦ You don’t have to be grateful it isn’t worse. Being a stroke survivor sucks. There are days i wonder why I lived. While I’m glad I have regained as much function as I have, I’m still dealing with headaches, brain fog, aphasia, and severe fatigue. That’s a lot for someone who also works full time and has four kids.

◦ You don’t get to judge someone else’s trauma. Their feelings about what happened to them are valid. PTSD isn’t just for veterans. Trauma is complicated and affects everyone differently. In my case, the most important thing I did to control my PTSD was to stop numbing it with alcohol. I haven’t had a drink in almost two years. This has allowed me to “feel my feelings.” I’ve been able to work on shadow work, inner child healing, and parts work. I’ve was able to diffuse my biggest trigger.

◦ Sleep is more important than anything. I wish I could stay up late to enjoy some TV. But, I just can’t. I need more sleep than I did before the stroke. I need sleep so I don’t have a raging headache the next day. I need it to decrease the brain fog and, of course, the fatigue.

◦ Being OK with things not being perfect: I have to choose what to spend my energy on. I can’t work, take care of the kids, take care of myself, and deep clean my house consistently, for example. I can’t pull weeds every day. I can’t study to advance my career. I can’t do all of these things. I can do some of them sporadically. So, I have to accept that things are not picture perfect. My house is not as clean as I’d like. Those damn weeds are already taking over my flower beds. I can’t do it all. The risk of burnout is just too high.

I kissed my kids today, and went to work. Live is probably as normal as it’s going to get. The headaches, fatigue, brain fog, and aphasia are things I will always deal with. That’s the price I pay for surviving.

My son’s brain injury

My family members have many complicated medial issues. My son was born with a coarctation of his aorta. He had heart surgery when he was six weeks old and weighed about 3 pounds.

His surgery was delayed a few times due to acute issues such as infections. On the day of his surgery, my parents watched his two co-triplets. My older son was at daycare.

One of the triplets was showing signs of being ill. He was lethargic, not drinking like he should be, and was hard to arouse. I asked my parents to keep a close eye on him. I knew something was wrong. I also knew I couldn’t be in two places at once. I had to be downtown for my son’s heart surgery.

I keep texting my mom asking how he was doing. She told me his feet were cold and she was having a hard time keeping him awake.

The heart surgery was a success. The pediatric cardiothoracic surgeon was practically giving out high fives. My tiny boy was fixed, or so I thought.

We stayed with him post op for a bit. We couldn’t hold him. He was still intubated. He was lying on his stomach, the big gash across his back was glued closed.

Eventually, my husband nudged me that we should go. We drove home. My father handed me my other son when I walked in the door. I was sure he was dead. He was yellow. He was limp. His eyes were closed. His head bobbed to his chest when I picked him up.

Alarmed, I started rubbing his sternum with vigor. He moved, but barely. I took him upstairs and put the thermometer in his armpit like the NICU taught me to do. 93 degrees. That can’t be right. It has to be broken. I’m doing it wrong.

I tried the other armpit. 93 degrees.

It must be broken.

I yelled for my husband. He came and tried the same thermometer while I went to look for another one. 93 degrees.

New thermometer under the armpit. 93 degrees.

I ran to get the car seat to drive him to the ER. My husband called the pediatrician which went to an on call nurse at that point, which was around 5pm. I was packing the baby up, getting things ready to go while he explained to the nurse what was happening. She told us to go to the ER.

I grabbed the car seat to go. She called back. She said she changed her mind and we should call 911.

I don’t remember who called 911, but they arrived quickly. The EMT asked us to take him out of the car seat so they could assess him. His feet were blue.

We rode, sirens on, to the closest hospital. He was quickly taken back to a room, and he was hooked up to oxygen and monitors. About two minutes later, he stopped breathing completely. The doctor tried to stimulate him by jamming his fist into my son’s feet. There was no response. He activated the code button.

About 30 people flooded into the room.

They tried to intubate my tiny boy, to no avail. They bagged him in between attempts. But, he was without oxygen for awhile. They paged the neonatologist who came down from the NICU. I’ll never forget standing in that room, watching all of these people try to save my son. None of them would make eye contact with me.

At one point, I crumpled to the floor, sobbing. Finally just letting the overwhelming panic sink in. I eventually stood back up to watch the monitors, the nurses, the doctors, try to save him.

The neonatologist jammed the laryngoscope down his throat. I watched him put the endotracheal tube in, and take it out, trying feverishly to get it placed in his tiny throat. Every time it came out, it was covered in blood.

Eventually, he was successfully intubated. Eventually, he stabilized. He was transferred downtown, where his brother was, recovering from his heart surgery.

I arrived at that hospital, hours after I’d left my other son. The neonatologist there hugged me as I sobbed. I will never forget her kindness.

My son spent a few days there, in the ICU. He was diagnosed with a viral infection. A simple cold that almost killed him. It’s been said that preemies are tough. But, before they toughen up, they go through hell.

My son came home. He developed a host of neurological issues after his anoxic brain injury. He was always limp. He struggled with holding his head up. He struggled to sit up. Eventually, he couldn’t walk without falling. He had several injuries due to falls.

He had an MRI just after his second birthday that showed no deficits. We took him to two different neurologists and a developmental pediatrician. He was diagnosed with hypotonia and cerebral palsy. He has spasticity in his legs.

He started physical therapy at around four months of age. He still goes to physical therapy every two weeks. He wears casts on his feet at night to stretch out his tight muscles. He wears AFOs during the day to stabilize his gait so he can walk without falling.

He was diagnosed with ADHD last winter. He has mixed type, and it’s severe. He struggles with impulse control and hyperactivity more than inattentiveness at this point. I know as he gets older, this will change. He goes to OT every other week to learn things like turn taking, zones of regulation, and to work on focusing on things.

His teacher told me he’s “a rockstar” in the classroom. He shows leadership skills, empathy, and he’s a math whiz. He doesn’t show any issues with inattentiveness, impulsivity or hyperactivity. I almost cried when she said these things. While it’s just preschool, I’ll take the small wins when I can get them.

I question every decision I made that day. Should I have stayed home? Should I have called off my other son’s heart surgery? How would things be different if I had? Would he have died without that surgery that day?

The guilt and the trauma are insurmountable some days.

This will affect my son for the rest of his life.

I know what that feels like. I know how it feels to have a brain injury and to feel broken because of it.

He knows some of the story. He knows he got sick and a lot people had to come together to save him. He knows he’s different because of all the therapies, and the things he has to wear on his legs. He doesn’t understand ADHD yet. He’s not being medicated yet. I know that’s in his future.

I’m learning the ins and outs of his disorder so I can be equipped to best help him as he grows up.

I hope he can grow up and find something he’s good at, and also makes him happy. I hope he manages to cope with his ADHD symptoms. I hope he keeps up with his stretching so his cerebral palsy doesn’t disable him more than it currently is.

Out of my four kids, he’s the one I worry about the most.