Why We Worry

Life with Teddy is a roller coaster, filled with incredibly joyful moments and moments that my brain blocks out to prevent me from the trauma. (I wish I was kidding, but I'm not really.) We've spent the past 2 years living cautiously because of COVID. The reality is that any illness can trigger seizures for Teddy, and seizures terrify us. 

I realize both Dave and I have anxiety regarding Teddy's health, largely due to the fact that we've seen Teddy experience terrible seizures, intubation, hospital rides and ICU stays. We've seen how worried the medical professionals were ... and realized that worst-case scenarios could exist. Dave and I had a conversation the other month discussing that illnesses could lead to seizures and hospital stays, and then Dave tossed in "death." It was somewhat of a lightbulb moment because I never realized that Dave goes to the ultimate worst-case scenario every time Teddy gets ill. 

To paint a picture of what illnesses look like for us, Teddy spiked a fever 2 nights ago in the middle of the night. He was restless for a couple hours and woke up at 3 a.m. absolutely miserable. That ended our sleep for the night, as we were getting him medicine, snuggling him and worrying, especially because we were 3 hours from home. Teddy fell back asleep for a bit until 5 a.m. when he woke up still miserable. By 6 a.m. Dave and Teddy were on the road home, and by noon he was diagnosed with double ear infections. 

He's so miserable and pathetic.

It may seem like overkill to take Teddy in to the doctor for essentially a fever and a few occasional coughs on the same day he started with symptoms. Yet, he's non-verbal, so he can't tell us what he's feeling. We never know the full picture of what's going on, so at least a doctor visit can rule out some things or give us answers. 

This time we got lucky in the sense that we got answers: double ear infections. We were able to get antibiotics into him the first day. We rotated Ibuprofin and Tylenol every 3 hours, except when he was sleeping.

Dave slept in Teddy's room to keep an eye on him, and Teddy started getting restless again in the middle of the night. By 3 a.m. he was up with both of us in his room, snuggling him, laying on either side with him in the middle just moaning and whimpering with us worrying and waiting for him to feel better with the medicine. And that was the end of restful sleep for any of us.

That's just a snapshot - a cold isn't just a cold. It's a ball of nerves and worry until Teddy's on the mend. An ear infection is sleepless nights and worry. Fortunately things are looking up this time, as Teddy finally perked up near the end of today asking to go outside and actually smiling and laughing. 

This smile gives us hope and a bit of peace.

Witch Doctor Update

I referenced a follow-up visit to the witch doctor in my last post. Unfortunately that appointment was rescheduled because our boys both came down with sore throats, fevers and runny noses. So instead we did home COVID tests that were negative and took Teddy to the pediatrician instead of podiatrist to check for any other obvious, treatable illnesses. 

Fortunately it was just one of the many viruses floating around, and the fever didn't cause any seizures for Teddy for the couple days he experienced it. It did, manage, however to give us several solid days of worry and anxiety. As Dave and I reflected on it, I said that any virus that causes a fever causes us this fear of seizures. Dave's addition was " ... and dying." Dave worries more than I do, perhaps because I don't play out the worst case scenario and just worry about the first bad thing (seizures). 

This hit me, though, because the reality is that pre-COVID, we were always concerned about influenza. For us, a virus isn't just a couple days of a sick child. It's always that fear of something worse: seizures, ER trips, hospitalizations or death (apparently for Dave). Now, worrying doesn't change or prevent any of these from happening, so I know we both need to work on our coping skills. But we do focus on what we can control, which is trying to minimize some of that risk for Teddy.

Amazingly, the adults in the household avoided this virus. That is truly remarkable given the amount of snot we wiped off Teddy's face ... and our clothes. Disgusting! I'm going to attribute it to copious amounts of water loaded with vitamin C and other immune boosters, along with eating whole cloves of raw garlic daily for several days. Sheer competitiveness caused me to chew the clove the first day before switching to the much more palatable method of cutting it into small pieces and swallowing it like a pill.

And what's the point of all this randomness? We all were healthy enough to go on our planned vacation, which I'll share about in my upcoming posts!

Oh, and Teddy went back to the podiatrist yesterday, and she confirmed that his wart was completely gone! 

I Remember When 2 a.m. Was Bedtime ...

 ... a long, long time ago the semester I lived in Spain. Even when I returned stateside, I had no desire to be awake at 2 a.m. That hasn't changed in all the years since college as I firmly believe 2 a.m. is meant for sleeping.

Teddy, on the other hand, determined that 2 a.m. was the perfect time to wake up Sunday morning. We were at the land, and he began stirring and moving around. He was sleeping on the bed next to Dave, and I was on the couch.  I checked my watch and realized it was 2 a.m. and hoped he'd settle back to sleep quickly. Then I heard him cough and realized we had forgotten to bring his rescue medication for seizures down to the land. Immediately, my mind was wide awake piecing together that obviously since our childcare provider was being tested for COVID that Teddy was probably sick and that's why he woke up, he had a fever and would start seizing and determining which one of us would call 911 to get an ambulance to meet the other en route to the hospital 20 minutes away. All because of a single cough. I spent the next 30 minutes worrying about all of this for two reasons:

1. When your child has taken two ambulance rides due to seizures (one of them intubated), the fear of illness and the associated seizures is very real. We spend every winter on heightened alert because of flu season. We worry that when Teddy wakes up in the middle of the night that its because he's ill and has a fever. Trust me, there have been too many times he's woken up in the night for us to discover her with temps over 100. When you add in potential COVID exposure, your mind goes to bad places, no matter how much you rationalize that potential exposure as minimal. With all these fears, the obvious thing would be to check him for a temperature immediately, right?
2. Except for the fact that when Teddy wakes up in the middle of the night, he will not settle back down if you acknowledge you're awake. Once he realizes you're awake, then he wants to play. Or wake up everyone in the room. Or go for tractor rides. Or do anything but sleep.

At 2:30, I heard Dave give up and acknowledge he was awake. Then I spent the next 30 minutes trying to tell myself I could fall back asleep because Dave would check Teddy for signs of illness. Dave attempted to get Teddy to snuggle back to sleep to no avail. 

So at 3 a.m. Teddy and I headed out to the Tahoe. That might seem odd, but middle of the night drives are fairly common to get Teddy asleep or to occupy him while others are trying to sleep. We drove (often at idle speed) around the land, down the road to the county park and back around the land. After an hour of driving, I was hoping Teddy might be tired enough to sleep because I certainly was. I knew by the occasional giggle that he probably wasn't, but it was worth an attempt.

After 10-15 minutes of blatant disregard for sleep, Dave took Teddy back to the Tahoe. He put in a movie for Teddy to watch, reclined the seat and attempted to get some sleep. (I had offered to go put a movie on for Teddy in the vehicle, but I planned to lay down a seat, bring a sleeping bag and pillow and snooze with Teddy securely strapped in his carseat. (It's one of the few ways that Teddy is truly contained, so it would be safe to rest.) I got to go back to bed for a few hours, until I woke up at 7 a.m. and texted Dave that I could take over (out of a sense of obligation, not because I was well rested). He brought Teddy into our garage, and Dave got a couple more hours of sleep while the boys and I ate breakfast, went for ranger rides and even a short tractor ride. 

Teddy fared remarkably well that day, only a few minor meltdowns and some whining on the drive home. He was exhausted but had no desire to sleep until he finally crashed at 7:30 p.m. How that child can manage to be awake from 2 a.m. to 7:30 p.m. with no caffeine is beyond me ... heck, me being awake as much of that time as I was even with caffeine is beyond me. 

2 a.m. to 2 p.m. and going strong. 

Would You Rather?

In the game of parenting, I'm guessing most parents would pick a mild fever over vomit. I'll take vomit any day as long as there's no fever. See, illnesses in general, particularly those accompanied by a fever put Teddy at a greater risk for seizures. Anything that weakens his immune system can also weaken his threshold for seizures. We see this most often with fevers, even mild ones.

**Disclaimer** Stop reading if you have a weak stomach. Don't read this if you're eating. Don't read this if you're about to eat. Feel free to continue reading if none of those apply. We're taking a ride on the vomit comet.

So when my mother-in-law informed me Friday night that Teddy puked, I wasn't overly concerned. (I was at work finishing a critical project, which is why I had left Teddy at my in-laws last minute after his therapy appointment.) When she said he puked his entire supper, I was a bit more concerned because that wouldn't be explained by eating too fast or playing too hard to cause him to throw up just a bit. When I had to drive home alone with Teddy in the dark along the same stretch of highway where he seized non-stop and ended up in the ICU, I was even more worried. I didn't know if his crabbiness was tiredness or because he wasn't feeling well, but he made it home with no issues.

However, as soon as he stepped inside the house, I could tell he was going to puke. And this was when I realized there's no good way to help Teddy puke, except for perhaps a bucket, which we didn't have. Poor kid. As a child, I always puked in the toilet, which I thought was gross, but sometimes the grossness of it helped me puke and then feel better. AJ pukes in the toilet, when there's enough warning of course. I'm pretty sure if we tried to help Teddy puke in the toilet, he'd lick it or stick his head in the water. So he puked partially in the sink, partially on the floor, partially on the brand new roll of toilet paper and hey, some made it on the toilet for good measure.

He was back to normal today, so the just-in-case bucket was a hat.

Then I had Dave gagging and informing me that he had to leave or he'd puke. AJ sighed and said, "I'll help clean up the puke." I reassured AJ I didn't need him to help clean up the puke, but I would appreciate a few minutes to clean it up before he showed me his prize from school that day. (I'm pretty sure I still had puke on my shirt when I saw his prize.)

We were all pretty concerned, but Teddy managed with no fever, two bouts of puking and a few hours of miserableness. As gross as it is, I'll take cleaning up half-digested hot dogs and banana chunks from a sink over a fever. Yes, my mother-in-law lied. Teddy didn't puke up his entire supper at his house. I can vouch for that. 

In the Middle of the Night

I remember hearing stories from other parents who panicked when their relatively newborns slept through the night unexpectedly, waking up and rushing to check that they were OK and nothing bad happened. That never happened to us, either because our children never slept that darn well at an age where we would have panicked, we were too exhausted to notice or we were just more relaxed in our parenting style (or some combination of the three).

As time has passed with Teddy, though, we've worked through many times that he's awake in the middle of the night or wee hours of the morning. Sometimes he's crying, sometimes he's just whimpering and sometimes he's kicking the walls. (Yeah, that is annoying to say the least.) Teddy cannot leave his room on his own for his own safety. (Left to his own devices, he could elope from the house if he unlocked the garage, got in a vehicle and used the garage door opener to open the doors. He's done exactly that, just not in the middle of the night).

Since he's non-verbal, there's also no way for him to call to us to let us know if he had a bad dream, if he's thirsty or, most importantly, if he's not feeling well. So we're left to guess, when we're half asleep, whether it's something that requires us to check on him.

You might think the natural thing to do as a good parent is always to check to make sure he's OK. But, with Teddy, it's not uncommon for him to be awake at night. Us intervening when nothing is wrong can turn into Teddy deciding it's morning and that we should go downstairs to play. That's not what we want at 4 a.m.

So, unless he's hysterical, it's a guessing game where intuition is the only advantage we have. Sometimes he's only whimpering, but I'll have a nagging feeling and check to make sure he doesn't have a fever. That's how we've discovered a few illnesses that completely shift our plans for the day because a fever immediately puts Teddy at risk for a seizure.

Sometimes, though, that nagging feeling is worry rather than intuition. That still results in one of us laying by him until he falls back asleep because checking on him and just heading back to bed results in hysterics as soon as we shut his door.

This morning, it was worry. That's why I'm writing this at 4:30 a.m. Dave volunteered to lay with him, so I can still meet my friends to run at 4:45 a.m. (Yes, we know we're crazy.) Such is life with Ted.

This camera can't tell us whether Teddy's sick. That takes the human touch.

Feel The Burn!

No, this isn't about every muscle in my body (although it could be after this last week with my successful attempts to finish a running scavenger hunt). It's about the fact that Teddy's arm has what appears to be a burn mark.

I say appears because we don't know exactly when it happened, but we have a pretty good guess. He's extremely interested in just about everything, including the grill, and is mighty fast in transitioning from happily playing somewhere to being somewhere else without warning. As we were grilling lunch, we thought he only touched the handle of the grill before we redirected him. (That's my polite way of saying that we ran toward the grill and pulled him away while shouting "No!")

Apparently his arm also touched where the grill was hot, hot enough to leave a burn mark on his arm. We didn't put cool water on it right away or burn cream because we didn't know he was hurt until several hours later. He spent the afternoon playing at the Children's Museum with his babysitter and brother, and we noticed the mark when we were doing bathes tonight.

These are the moments that I feel like a horrible parent who failed her child. It's not just because I couldn't keep him safe but because I couldn't make him feel better and fix the wound. I hate that I don't know he's hurt until after the fact.

This is one of those situations where his lack of communication skills and incredibly high pain threshold work against him. I'm not sure whether the pain registered enough, but we didn't see some form of communication from him because we were distracted by trying to ensure his safety. Or, it's possible the pain didn't register for him because of how his brain processes.

Regardless, it makes me feel like a cruddy parent and serves as a reminder that:

1. He needs even closer supervision (as in he's probably only safe if we're carrying him and then he's likely to hurt both of us).

2. We really need to get in the habit of checking his body routinely for marks, skin breakdown or other signs of injury or illness.

Will He Walk?

For some reason, this past week, as we watched Teddy wander through the room, I asked my husband if there was a ever a time he believed Teddy would never walk. And he said yes, there was a period of time when he didn't believe Teddy would ever walk independently.

There were so many days at physical therapy that I just wanted to hear his therapist say, "Oh, I've seen kids with these tone issues, and he'll be able to walk independently just fine." Instead, I heard things like, "Our goal is to help Teddy learn how to use his gait trainer, so he can safely navigate his classroom when he gets to the school setting."

Still, there was one defining moment for me, and I don't recall exactly what it was ... It may have been as simple as Teddy cruising along furniture or walking holding one or two of our hands. I remember becoming confident that although it may take time, Teddy would learn to walk independently.

Now, as I watch him confidently wander around the house, never watching where he's going and moving with the grace of a drunk monkey, I'm in awe that we ever doubted he could walk. When I watch him pop up unassisted in the middle of the room, it still makes me smile because it's something he couldn't do a month and a half ago.

As I enjoy these accomplishments for him (and let's be honest ... for the long-term future of our backs and bodies as Teddy's parents), part of me wonders if speech could be the same way. The first babbling sounds we heard from Teddy were last April, right around Easter, and sounds from him have been sporadic since. He goes through periods where he is more vocal, but his babbling hasn't really progressed. School is working with Teddy to use buttons to ask for more snack or milk. We know of other children with the same diagnosis who use assistive technology to help them communicate. We know of some who use some sign language, and we have made half-hearted efforts with Teddy with signs. We also know of some children with Teddy's diagnosis who can speak at least some words.

Part of me wonders if one day I'll look back and think to myself that I was so silly for doubting Teddy could learn to speak actual words.

Then again, part of me fears that day will never come.

Another One of Those Days

Today has been another one of those days ...

5 a.m. I wake to Teddy fussing. I attempt to ignore him, hoping he'll settle back to sleep on his own.

5:15 a.m. I give up and decide to take a quick shower, so I can settle Teddy down while Dave leaves for work.

5:20 a.m. Dave lays down with Teddy.

5:30 a.m. Dave asks me to get the thermometer. Teddy's temperature is over 100ºF.

5:31 a.m. Teddy gets Tylenol, is stripped half naked, gets cold compresses applied, gets his Keppra, gets a stuffed animal from the freezer to snuggle and gets lavender and peppermint essential oils applied.

5:50 a.m. Teddy settles back to sleep in Dave's arms downstairs. Dave insists on staying home at least until Teddy wakes up. I alternate between standing beside them staring worriedly at Teddy and putzing through the house and picking up things.

6:50 a.m. AJ wakes up. (Of course, this is the type of day that he sleeps in this late.) AJ helps me with laundry, picks up a bit of his room and packs his backpack for school. Then he plays Legos.

7:45 a.m. I begin making pancakes for breakfast since AJ loves them and rarely gets them fresh on weekdays.

7:50 a.m. Teddy wakes up. He crawls down to the floor and hops around, which is a positive sign. He seems much cooler.

8 a.m. We eat pancakes for breakfast, AJ is thankful Papa is home yet from work but sad Teddy isn't feeling good.

8:20 a.m. Dave leaves for work.

And after that, let's see ... AJ played really nicely with Teddy for a while. AJ picked out some toys that I traded him money for him to donate to Goodwill. He got $1.10, and I got a box partially filled with items leaving our house. Then AJ headbutted Teddy, and that's where my day went from bad to worse. Removing tablet privileges for the day ... and now rest of the week due to continued whining and fits ... makes for a tough day. AJ drew pictures of him mad and sad to show me how he feels. (Mine would be foaming at the mouth with hair standing on end, just for the record.) Teddy refused to nap despite being miserably tired ... until he finally went down about 20 minutes ago.

As trying as these days are, I'll gladly accept them (and complain about them here) as long as Teddy doesn't have a seizure. That continues to be our prayer for today.

What's the worst that could happen?

Teddy's open house went well tonight, and we got to meet his teacher and her assistant and his OT, PT and speech therapist. They all seem very nice and competent, and I'm sure they'll fall in love with Teddy. (And, yes, I gave them all a copy of his letter.)

But with school starting in two days, I feel like I've pushed all my worries and fears about school about as far back as possible. So I thought it might be fun to put together a mostly comprehensive list of all my fears and worries ... and then I can check them off if/when they occur. (I know, I need better hobbies.)

If I could fast forward a week or two, I'm sure things will be fine. But for now, here's my list:

1. I won't know exactly what happens, both good or bad, because Teddy can't tell me.
2. Teddy will have injuries of unknown origin. 
3. There's 6, soon to be 7 children, in his classroom with one teacher and one teacher assistant. One of those children is Teddy. You do the math.
4. Teddy will disrupt the learning environment for the other children because he'll require more attention than anticipated.
5. Teddy will be the most challenging child in the class because of his delays.
6. Teddy will lack skills that all the other children in his class have.
7. Teddy will sit on the other children ... or tackle them ... and then sit on them.
8. Teddy will bite the other children (but in his defense, this probably only happens if they put their body part in his mouth).
9. Teddy will find a way to climb into that little window I saw in the classroom.
10. Teddy will climb everything else in the classroom.
11. Teddy will eat the books.
12. Teddy will fall out of the chairs.
13. Teddy won't follow the instructions and will not comply with classroom activities.
14. AJ isn't there to protect Teddy, translate for Teddy or report back to me.
15. Teddy will escape the 5-point harness on the school bus.
16. Teddy will be a miserable cuss on the 40-minute bus ride.
17. Teddy will destroy many things in his classroom. 
18. Teddy will have a seizure at school.
19. Teddy will have a seizure on the bus.
20. I'll be that mom.

Hmm, only 20 things. Why does it feel like so much more to worry about? The reality is in two weeks, this will all be a moot point. Many, hopefully most, of these things will never happen. We'll develop solutions for the few fears that become reality. Now to survive the next two weeks ...

Carrying Mountains

Life with Teddy is an emotional roller coaster. Sometimes, it's cycles of days, weeks or months where things are mostly positive and then a slump. And sometimes, in the course of a day, I manage to hit both depressingly low points and amazingly high points. The last week or so has been one of those funks for me, which is why this quote from Najwa Zebian struck a chord with me:

"These mountains that you are carrying, you were only supposed to climb." 

I feel as though I've been carrying mountains instead of trekking up them, enjoying the views and the hike along the way. This was what I needed to hear last night.

And then, of course, I had one of those roller coaster days today. While I was at work, I was typing a witty reply hinting about when I might be able to return to work on a schedule that resembles full time more than my hodgepodge of hours now. As I went to type, "It's only two more years before Teddy is in regular kindergarten," I almost ended up in tears. 

The reality is that Teddy will not be in regular kindergarten. He'll never be in regular school. He'll be in classrooms adapted to his needs that maximize his potential. He'll have a smile and personality that light up those classrooms. He'll be amazing because he's Teddy, but he'll never be regular. 

As his mom, that reality hurts sometimes when it sneaks up on me and makes me reword my e-mail to something along the lines of "It's only two more years before Teddy is in school for a full day." It's nothing, but it reminds me of everything.

After my work day, I picked up two very happy boys who spent the day playing outside at a park with their fantastic sitter. We came home to find a package from Teddy's running buddy Heather from I Run 4.

He looks so big opening his mail.

That's when my day went to top of the roller coaster, incredibly grateful for the support of our running buddies. While Teddy opened his mail, AJ responded to two of his buddy's messages, sending her more silly pictures and dictating his messages.
 

Teddy's too excited to hold still for a picture.

Teddy's buddy Heather sent him two medals, one from a 5k and the other a Darth Vader half marathon medal. Teddy especially loves the Darth Vader medal because the inside middle part rotates, so it's a perfect toy for him. Heather also sent him a runner version of Mickey Mouse. Teddy prompted attempted to nibble Mickey's nose while grinning his mischievous smile. Heather tucked in a Mickey Mouse tsum tsum (little soft Japanese-style toy for those as tsum tsum illiterate as me until I read the tag) for AJ, so he didn't feel left out. This package of goodies for the boys reminded me how lucky we are, how thoughtful people who were strangers 6 months ago can be and how good the view on the hike is instead of being buried under the mountain.

Both boys love their respective treasures!

Siblings

One of the first discussion points for us after Teddy's diagnosis was centered on AJ and what Teddy's diagnosis meant for him. It was easy to immediately jump to thoughts of guilt and worry that AJ wouldn't have a typical brother and that meant he would miss out on so much and shoulder responsibility that he shouldn't have to. Even during those first conversations, I tried to look for the positives of how Teddy's diagnosis would affect AJ.

This past week I had the opportunity to attend the Circles of Life conference and spent two days listening to speakers on a variety of topics from financial planning to advocacy for children with different needs. Overall, it was a really good conference, although I'll admit it was a bit difficult to be there and fully embrace the fact that I have a child with special needs. (That was actually one of the reasons why I wanted to attend.) I would have been much more comfortable attending to represent the non-profit service organization that is my employer, but my job was to be there as Teddy's mom.

I met some wonderful people, saw some amazingly cute kiddos and heard some pretty awesome stories. The final session included a guest panel of typical siblings who attended the conference with their families. These teenagers shared their thoughts on a few topics, including the hardest part of having a sibling with special needs:

• The stares. It's don't like it when other people make fun of my brother for who he is.
• It's hard not to have a sibling who understands you and who relates to you.
• I understand it's not favoritism, but it's hard when my sister needs all my parents' attention.

These teens confirmed every worst fear I have for AJ and Teddy. But they also reaffirmed my hope and belief that AJ will be a better person because Teddy is his brother. When asked about the best part of having a sibling with special needs, the answer was similar from everyone:

•  It makes me more understanding of others. I've learned not to judge other people because of how they look or act. I have more patience with people. I'm more accepting of other people. I'm a better person.

I also heard in their answers how fiercely protective they are of their siblings. Sure, they may not always like having a sibling with special needs, but they would be the first to stand up for them or their rights. These children were amazing, just like AJ will be.

Romans 12:12

One of the harder things when Teddy doesn't sleep at night, aside from losing much needed sleep, is all the time it gives me to ponder things. About a year ago, I was consumed with fear, anger, frustration and a feeling of complete helplessness after one of Teddy's seizures. I couldn't fall back asleep after Teddy finally succumbed to sleep, so I was searching for something: answers, peace, the ability to fall asleep ...

When I was a child, I read the Bible cover to cover, underlined favorite passages and jotted down lists of verses that resonated with me. That night I couldn't sleep, I looked up all the verses I had written down as a child until I got to Romans 12:12.

That was where I found what I was looking for: guidance, hope and a bit of peace.

"Let your hope keep you joyful, be patient in your troubles and pray at all times."

It's applicable to nearly every situation for me.

Worried about the future? Let my hope keep me joyful.

Beyond frustrated because Teddy is screaming not sleeping? Be patient in my troubles.

Fall while running and land in a bush? Pray to thank God I didn't land in a cactus. (True story. Happened in Zion National Park this month.)

Every time Teddy has a seizure that turns our world upside down all over again? All of the above.

"Let your hope keep you joyful, be patient in your troubles and pray at all times."

Guilt

All parents feel guilty at some point, I think. Sometimes, it's probably warranted. And sometimes it's over things that are far beyond our control.

As it became clearer that Teddy wasn't a typical child, the guilt and worry kept creeping into my mind.

Was this because of my Crohns and medications I took during my pregnancy? I had followed my doctor's orders, which were even more conservative than with my first child. (I had even participated in a multi-year study following my first son's birth to check the possible effects of the medication.)

Maybe it was the fact that his umbilical cord was wrapped around his neck when he was born. Maybe we should have been more concerned that he was blue at birth and advocated or did something differently.

Or perhaps it was that moment when he tumbled out of a chair, and I learned he could indeed move his body that way instead of being a motionless baby. Or perhaps the time his big brother "helped" him out of the chair by pulling him down into the over-sized stuff animal that served as a landing pad that was never intended to actually be used.

Was there something we did wrong? Something we could have changed?

After getting a diagnosis, it alleviated pretty much all the guilt associated with how and why Teddy was Teddy. (Don't get me wrong - there's enough guilt for other things because I'm still human.) In many ways, it was freeing to know this was how God made Teddy. It wasn't my fault. I hadn't caused this. It wasn't my Remicaid infusions. It wasn't me failing as a mother by having his cord wrapped around his neck (although I realistically had no control over that). And it wasn't those few times he tumbled.

It was Multiple Congenital Anomalies-Hypotonia-Seizures Syndrome 1. It was a genetic mutation of the PIGN gene. It was how God made Teddy.

There's been so much that's been difficult to accept (process is the word I use most often), but this relief was almost instantaneous with the diagnosis. For that, I am grateful. I had been making progress on accepting that even if Teddy's symptoms were caused by something in the past, there was nothing that could be changed aside from doing what was best for him in the present. Still, the diagnosis brought full closure for me on that aspect and made it easier to accept the "What's next? What's the best we can do for him now and in the future?"