One of Those Days

We all have those days.

I knew yesterday was one of those days when we were at our 9 a.m. physical therapy appointment. It started great with Teddy doing really well balancing using his core and enjoying the activities. When we switched to walking, though, things went downhill. He quickly became frustrated and mad at me and his therapist because we were forcing him to slow down. All he wants to do is run, but he needs to learn how to shift his weight to actually walk. It's hard for me to see him frustrated, especially when I'm the one causing his frustrations, even though it's for his own benefit.

From therapy, we went to the store. Normally AJ is well behaved and accepts the fact we're not buying toys with minimal complaints. Of course, he proceeded to whine and beg for the entire time we were shopping. (Hearing the word please 100 times in 20 minutes does not make me happy.) This led to me banning AJ from tablets or movies for the entire day, which really punishes me more than him.

Since all three of us were less than happy, we headed home. That was when I got the first of two bad pieces of news for someone in our family. Lunch helped improve our moods somewhat, but then Teddy determined that he didn't need a nap. No nap for Teddy is almost a guarantee that two of us will be crabbier.

I spent nearly an hour on the phone trying to sort out medications and then insurance coverage of speech therapy for Teddy. After getting transferred to the wrong department (and finding out after spending 10 minutes on hold), I might have informed that person that I "loved wasting my time on hold to be transferred to the wrong person." When she offered to transfer me to the right department, I told her I could call the number myself to sit on hold and then hung up on her. My parents raised me better than that. I know better and usually can use my manners even when I'm frustrated to the point of tears. My apologies to that person at our insurance company. (And to my mom.)

From there, we tried another store hoping that getting out of the house would help. It didn't. We left empty handed with all three of us grumpy.

Because it was one of those days, my husband texted me that he would be late home from work. I really appreciate the heads up, but it was just one more thing.

And when the boys seemed to be playing together happily on the rocking chair, I warned AJ not to crash the chair into the wall. Let's just say that our wall has 2 new holes in it, and the rocking chair is banished to the garage.

Moral of the story: I do not have it all together. Even though I brushed my teeth before 3 p.m., it was still one of those days.

I'm glad today wasn't.

Brotherly Love & Trampolines

Our boys are just shy of 2 years apart, the perfect amount of time to be the best of friends and the worst of enemies. Since Teddy is Teddy, he thinks they're always best of friends, and AJ's the only one who feels the worst of enemies when Teddy won't let AJ play by himself. (Can you blame Teddy? Would you want to not play with your favorite toy in the whole wide world, your older awesome brother?)

AJ's not strangling Teddy-that's just how he hugs Teddy.

Yesterday was one of those days with heart-melting moments and heart-stopping moments. Few things make me truly happier than watching AJ interact positively with Teddy, like when he spontaneously cheers and claps for Teddy doing something. "Mama, Teddy sat in the chair all by himself! Good job, Teddy!!!"

But 10 minutes later AJ's bouncing on Teddy. When I tell him to stop, his response is "We're playing trampoline." When I insist he stop because Teddy isn't a trampoline, then he throws a 4-year-old tantrum because I ruined his trampoline fun.

Give it a few hours, and AJ buckles Teddy into his gait trainer all by himself because Teddy was pulling up to stand by it when I wasn't in the room. Then AJ leads Teddy around the house, playing with him with non-stop giggles from both of them.

The heart-stopping moment was when AJ jumped out of our recliner to land squarely on Teddy who was crawling on the floor, right on top of Teddy's head. That was one of those moments where Teddy and I both screamed equally loud because I was scared and worried about how hurt Teddy was. I think he was more scared about being a landing pad for a human cannonball than actually hurt, so we both calmed down pretty quickly. We'll see if AJ's lesson on jumping on people is learned. (I'm crossing my fingers it is-he was apologetic immediately and realized he hadn't done a good thing.)

Bedtime might have came a bit early last night, not that they fell asleep any sooner.

Sledding Therapy

Teddy's a regular at physical therapy, occupational therapy, speech therapy and Birth to Three. He has more therapeutic goals than we'll ever work on in any given day (or even week if I'm completely honest). We do our best, pick a few to focus on and count much of our everyday play as therapy because in reality, all play is therapeutic.

Since Teddy was unmotivated to be in his gait trainer today, we decided to play outside in the snow instead. Teddy is getting so good at holding his hand out for mittens (and then promptly ripping them off because he didn't really want them on) and knowing that his socks, braces and shoes go on his feet. It's nice to see that recognition and (minimal) assistance with dressing instead of resistance or dressing a boy made of Jello. (The nice red socks are our way of keeping his mittens on underneath. He's a stylish boy.)

We're lucky our house has enough of a slope to go sledding right in our backyard. Teddy and AJ both had a blast sledding, and it was a fun experience that encompassed OT, PT and speech therapy. Teddy had to engage his core to stay upright on the sled while sliding down the hill and then being pulled back up the hill. It's something we don't think about, but it's a lot of work for a child with low tone. He compensated for some of this effort by holding onto the edges of the sled, which is great because one of his OT goals is to hold onto items with a sustained grasp. Lastly, he had so much fun that he was vocalizing almost the entire way down and then back up the hill. Speech therapy. The trifecta of therapy while having the best time sledding.

Watching Teddy sled today reminded me that one of his original goals for Birth to Three was to be able to go sledding with assistance from AJ last winter. He was able to do that, so he accomplished that goal. I think of how far he's come, though, from last winter when he was mostly dependent upon supporting himself by leaning into AJ. Now he can sled down the hill by himself in a regular sled while holding on and vocalizing how much fun it is.


Therapy is not always as fun as our sledding today, but it certainly is worth it when you can realize the progress.

Blessings

We attempt to get to church regularly with the boys. I say attempt because honestly we miss more than we attend most months. Sometimes when we manage to get there (at the right time ... oops, our church starts at 9 a.m. not 9:30 a.m.), we walk out feeling more frustrated than filled. Fortunately, we belong to a welcoming parish, where it's not uncommon to get words of support following mass.

Today my support came from one of the songs we sang at church, that referred to the Beatitudes. The thought had crossed my mind during mass that the Beatitudes carry a message of hope for Teddy.

Here are the Beatitudes:

Blessed are the poor in spirit, for theirs is the kingdom of heaven.
Blessed are those who mourn, for they shall be comforted.
Blessed are the meek, for they shall inherit the earth.
Blessed are those who hunger and thirst for righteousness, for they shall be satisfied.
Blessed are the merciful, for they shall obtain mercy.
Blessed are the pure in heart, for they shall see God.
Blessed are the peacemakers, for they shall be called sons of God.
Blessed are those who are persecuted for righteousness' sake, for theirs is the kingdom of heaven.
Blessed are you when men revile you and persecute you and utter all kinds of evil against you falsely on my account.
Rejoice and be glad,
for your reward is great in heaven.

And here's what I take away:

Although many things in this life will be challenging, I take hope in the fact that Teddy's path to heaven will not. Because of how God designed him, he is pure in heart and will forever remain pure in heart. I know this probably isn't true in a theological sense, but as a parent I almost feel that God made Teddy perfectly in a way that the devil cannot touch him. Perhaps that's why there are days that are so hard for me as a parent ... the devil knows Teddy's out of his reach, so he wants to provoke where he can with fear, doubt, anxiety, anger and such in me.

I also firmly believe that Teddy brings out the best in others. There are others who interact completely differently, in a positive way, with Teddy than they may otherwise. I believe Teddy gives others the opportunity to be merciful, so they can obtain mercy.  

These are obviously my thoughts for the day, not any theological expertise. Still, I hope others may find some comfort in them as well.

Family Christmas Pary

Dave comes from a large family since his mom is one of 13 children. Every year, all the aunts and uncles, cousins and kiddos all get together for a huge Christmas gathering. I remember when we first were dating trying desperately to figure out everyone's names. Now we all just struggle to remember all the little ones who we only see a handful of times throughout the year.

We put Teddy in his gait trainer right away, so he could check things out on his own. He owned that place! He was everywhere, going across the fake grass, onto the mats and all around the gym where the party is held. He probably spent 30 minutes in his gait trainer when we first arrived, which is a really long time for him to stay content, motivated and active in it. It was adorable when one of the kindergarten-aged cousins was helping to steer him from behind, and he kept looking over his shoulder giggling and smiling at her.

Teddy made it into his gait trainer for a bit more while at the party and thoroughly enjoyed himself. AJ enjoyed himself until his knees became obnoxiously swollen and painful. He had a rash for the past 24 hours, but no joint swelling until partially through the party. He had been complaining his knees hurt, but I knew we were headed for an ER visit when I saw how swollen they were.

We left the ER with a referral to a rheumatologist for AJ but no diagnosis or treatment. (The swelling was gone by the next day, and the rash disappeared a few days later. His follow up with the rheumatologist was uneventful as well, considering all tests and labs were negative or normal. Just a fluke, unless it happens again.)

Despite the fun of spending a few hours in the ER, I ended the day fairly content. More often than not, when we see children Teddy's age or younger able to do so much more than him with so little effort, it eats away at us. Partially, we hate to see him work so hard to do everything. Partially, we hate the reminders of what he can't do because we don't have that side-by-side comparison. (We're not naive. We know Teddy is delayed. But when we see him day in and day out, we see Teddy and what's normal for him. Seeing others his age or younger is a stark reminder that what's normal for Teddy is not typical.)

But this Christmas party was different for me. It was the first time that instead of the sadness and comparison (like I had felt the previous year's Christmas party and so many other times) that I was so proud of him and excited for what he could do. I know that's how I should be all the time, but it's so much easier said than done particularly since it's more of a sub-conscious thing. I hadn't even realized it until after we left the party.

I know I won't always have the mindset that allows me to focus on what he can do, but it's certainly more uplifting than the alternative.

It's not getting any easier to get a good picture of both boys at the same time!

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?"

Diagnosis Day

Teddy was diagnosed with the genetic disorder Multiple Congenital Anomalies-Hypotonia-Seizures Syndrome 1 as a result of exome sequencing. There was a 25% chance of finding the cause of his uniqueness, so we were surprised to get an actual diagnosis.

As far as the diagnosis goes, well, we were astounded to learn this condition was discovered in 2011, and Teddy is the 15th known case in the entire world.

That means when we got married, one of our future children would have a disorder that wouldn't be discovered yet for another 5 years. It's crazy. It's hard to wrap our arms around.

We hadn't really speculated as to what we might learn because we had already eliminated most of Dave's (paranoid) guesses from his research, which didn't include this diagnosis. There's 3 things on Google: two research papers and a NIHS article, all of which we got from our genetics department at Children's Hospital in Milwaukee. In our age of Google, 3 true related hits is insane.

So, the genetics counselor asked if we planned to have more kids. My answer was "Not after today." Dave's thought was "F--- no!" We love Teddy. We love AJ. Way back before Teddy was born with a will stronger than ours, we wanted 3 kiddos (3 healthy boys was my wish). But there's a 25% chance of another Teddy syndrome (and a 50% chance of carrier status). Not a risk we'll take. We had been waiting for these results to see if we would even consider more kids, and this slammed the door shut. That's hard.

Aside from me actually enjoying pregnancy, it ends some dreams. The worst of it is AJ won't have a typical sibling. We feel we're robbing him of that experience. It feels like the best case scenario is he's responsible for taking care of all of us when we get old. And that's so unfair. I know he'll gain immeasurable things like empathy, compassion and acceptance, but it's still not fair to him. This is one of the hardest things to accept.