A Glimpse of the Fear

I tend to avoid politics here because this blog is intended to create awareness and share our story living with CDG-PIGN. Strong political opinions don't tend to mesh well with the open minds needed to learn. However, AJ's running buddy shared this story today, and it resonated with me.

You might be confused. My children inherited my pasty white skin. There's no reason I need to worry about my child being perceived as a threat because of their skin color, regardless of their intentions and the facts surrounding a situation. But every mom whose child has a skin tone other than pasty white likely has that worry, that their child will be judged in a split second based on decades and centuries of stigma and racism that may lie just under the surface even if it's not blatant. Will their child be perceived as a threat because he's out running? Because he has a cell phone in his pocket that he grabs? Because he is taller than someone? Because his skin is not white?

Still confused on why this resonates? Let me clarify. I don't worry about AJ ever being perceived as a threat. But let me paint a picture for you .... in another decade or two, Teddy will be a big guy. I don't expect he'll have the safety skills to be alone in the community, but I can see him still taking off for adventures. So maybe he goes outside unnoticed, wanders into someone's open garage door because that's an open invite and that someone calls the police. Teddy doesn't listen to the police's directions, doesn't answer their questions and ends up handcuffed or worse. Or maybe Teddy's outside walking, still with a gait that looks like he's had a few too many, and he doesn't heed the police's direction to stop. He approaches them, stumbling slightly, arms out for balance (or wait, is that a threatening move) and grabs at them to take their hand (or wait, is he going for their gun).

These might seem really far fetched, like I've spent too much time with my own imagination. But these are similar to headlines of people with mental illness who weren't able to follow police instructions or people with disabilities who were struggling to maintain appropriate social behaviors. These headlines are rarer than the racial ones. But they give me a tiny bit of perspective into what other moms with different skin tones might fear.

The point is that no mom should have this fear. No person should be afraid to wear a mask in public to ensure their own health and that of their community. We need to do better. All of us. No excuses for the older generation, no more small mindedness, no more indifference. We need to stop blaming others and calling for change in others without taking a hard look into our lives to see how we can do better. What are the biases we hold? What are we teaching our children? How can we change ourselves to start changing our world?

Lost and Found

Teddy and I were flying solo this weekend while Dave and AJ spent some quality time at the land. This morning we ran errands, and Teddy sat nicely in AJ's car seat. That's not always the case, since Teddy can unbuckle himself from that seat, which is why we reserve it for short trips. I didn't have the garage door opener in the vehicle, so I hopped out to open the garage door when we got home. I pulled in, parked and took the first load into the house, shutting the garage door as I went. I dropped the load and returned to the car for the second load and immediately noticed something was missing: Teddy.

It's normal for him to remain in the car while we unload or to unbuckle and play in the garage. This was not normal.

I immediately realized he had snuck out before the garage door shut and had a 30-60 second head start on me. I opened the garage door, frantically scanned outside, double-checked the garage and quickly called in the house for good measure.

Then I sprinted around the house, looking for any signs he went into the pond. Seeing none, I dashed up front and was ready to beeline to the neighbor's open garage door when another neighbor called that she had him.

Her boys had seen Teddy walk across their yard without me right behind him, alerted their mom and went after him. He made it to the next neighbor's house, where I found her holding his hand.

Teddy and I returned home with my heart racing. He may have only been gone for realistically 2-3 minutes, but that's long enough for something horrible to happen. Without the ability to speak and with water literally in our backyard, there's an awful lot of potential for awful to happen.

Thankfully, that wasn't the case today. We returned home safely, where I promptly thanked my neighbors via texts. We have incredible neighbors, and Teddy's guardian angel definitely has its hands full.

We went to the park this afternoon to make some positive memories. 

I'm Going On a Trip, and I'm Taking ...

Remember the game where you list all the things you're taking on a trip? I think there's different versions where people have to guess what the secret is to how to pick what you're taking or you have to remember what each person is taking. Here's my version:

I'm going on a trip, and I'm taking:

• Legos
• Magnetic toys
• Chewelry
• Pacifer
• Snuggly Blankets
• Books
• Lock puzzle board
• Pretend retractable knife
• Playdough
• Magic sand
• Bristle block stackadoos
• Wooden puzzle toy
• Mouse and cheese string toy
• Lacing shoe
• Jar of empty thread spools
• Roll of yarn
• Buckle toy
• Tablet
• Two toy cars
• Magic markers and paper
• Singing puppy toy (I just added that to my trip pile.)
• Rubber ducky
• Old wallet
• Sippy cup
• Backpack with stuffed animals

Can you guess where I'm going for my trip?

It's a 24-hour inpatient EEG with Teddy. Tomorrow. I had a legitimate nightmare about this a week ago and have been doing my best to avoid thinking about it. I don't sit well. I don't stay still. Neither does Teddy. Add in the fact that Teddy hates medical procedures and rooms and anything that remotely seems medically related, and I'm sure you can understand my nightmares.

Please, oh please, keep Teddy entertained oh magical suitcase of toys.

But, it's what we need to do to make sure he's at an effective dose of Keppra that there are no seizures. We were hoping to wait until school was done but realized we needed to do it as soon as possible after the last seizure in April. We want to make sure we're at a good place with his anti-seizure medication before we head halfway across the country on vacation. 

We've done several EEGs and even a sleep study at NIH (which was horrid, might I say, even if I wasn't the one who spent the night with him) but never a 24-hour inpatient one. The plan is to sedate him for the placement of the EEG leads instead of me holding him for 30 minutes or so while he screams hysterically while they place him. We're hoping that's the right decision that he'll wake up without being annoyed by all the leads and funky hat or at least less miserable than if he were awake for the process. I'm hoping the anesthesia goes well and doesn't have any side effects ... like seizures days later, which is what I think happened in April. To be honest, when they offered the option of sedation, I thought they meant more along the lines of a sedative to help him calm down and remain calm for the lead placement rather than full-blown anesthesia.

Once we get past the lead placement, then the challenge is to keep him occupied and content in a medical room for 24 hours. I'd be much less nervous if we were able to go the play room and wander the halls, but we need to stay in the room on camera for the EEG to be most effective. Hence the largest suitcase we own is almost entirely filled with toys.

Dave and AJ are coming up after school is done, so we're hoping that an hour or two of playing with AJ will be a nice form of entertainment for Teddy. AJ has already planned to save some of his tablet time to help Teddy play games on his tablet and is making him a treasure chest with toys to bring when he comes to visit. AJ really is the best big brother.

Then I'll head home with AJ while Dave takes the night shift because Dave is much better at getting Teddy to sleep than I am a saint. As soon as AJ gets on the bus Wednesday morning, I'll head back to Green Bay to relieve Dave. He'll go to work, and I'll finish out the EEG with Teddy. 

I'm crossing my fingers that he'll make it to school Wednesday afternoon, but I'm not holding my breath on that. We have a backup plan if we won't be home by the time AJ gets done with school. But, as I said to that person, if we're still at the hospital at 2 p.m. on Wednesday after getting admitted at 7 a.m. Tuesday, I'm going to need a lot more than you just watching AJ for a couple hours. Like sanity.

And as I told my mother-in-law, we have a suitcase of toys packed. We should be good ... at least until the anesthesia wears off. 

It needs to happen. It will likely suck. But it'll be done by sometime on Wednesday. 

The Time My Husband Gave Me a Panic Attack

Yesterday I got the following text from my husband:

Teddy took another ambulance ride to Childrens

Now, picture only seeing the text, "Teddy took another ambulance ride to Childrens (Hospital.)" That's the text from Dave that I got on my Smartwatch yesterday afternoon. I was in the basement putting away things from my friend's baby shower at my house. I immediately ran (which I'm not supposed to do on my stress fractured tibia) up the stairs while screaming, "No, no, no!!!!" I dived for my phone to get more information and saw the picture.

My immediate reply text to my husband was three words. One was "you." The other two were for mature audiences, only but they rhyme with ducking rastard. (I did apologize a few minutes later once I could breath again.) My two closest friends were still at my house from the shower and were asking what was wrong as I ran through my house screaming. I replied "Nothing" and tossed my phone at them to see the text.

Then I went back to the basement, curled in the fetal position and sobbed for a few moments while reassuring myself that Teddy was indeed fine and everything was OK. I went back upstairs and apologized to my friends for completely freaking out.

I'm not surprised that I had such a visceral reaction because I had similar experiences after I lit myself on fire. There was a time when I was in the same room as bacon cooking where it sounded exactly like the grease fire that burned my hand. In an instant I dove under the kitchen table and hurled myself into the bathroom. There's a whole lot of mental and emotional trauma from our experience last month still for me. I had known that, but yesterday confirmed that without a shadow of a doubt.

I'm actually hoping that yesterday was one of those moments that helped me process more of the baggage that is still hanging around from last month. I know Dave meant the text as a joke, and I would have been able to roll my eyes at it had I seen the picture with the text. I'm just glad he sent the text when only my two closest friends were here instead of a houseful of 20 people who I barely know to witness me wig out.

Today I can see the humor in my reaction to what was intended as a humorous text. I'm still not sure there's a morale to this story. Maybe that Dave is still alive and didn't need an ambulance ride of his own after sending that text message?

Back-to-School Stress

The morning radio show yesterday shared the top three stress points for parents regarding children heading back to school. They were, in no particular order, waking children up for school, helping with homework and packing lunches. Then they opened it up to listeners to share their biggest stress points ... and my mind went through my list of questions and fears.

Let's start with the fact that Teddy is not able to communicate, verbally or otherwise, what happens to him at school. He's going to a brand new school with likely a brand new team of therapists (that won't be determined until after school starts) where he knows no one. (OK, that's not true. I discovered last week my goddaughter and her cousin go to the same school, but they are in much older grades and likely won't cross paths often, if ever.)

That means that if something horrible happens to him, I won't know unless someone tells me. That means that if he has a miserable day, I won't know unless someone tells me. That means that if someone makes fun of him, I won't know. That means I will have no idea how he spends his day, what he does in therapy and whether he's enjoying himself and making progress ... again, unless someone tells me. That means I won't know when he does something amazing or makes someone's day with his mega-watt Teddy grin ... unless someone tells me. I won't know who his friends are or if he even is friends with his classmates. I'll know nothing unless someone tells me.

I know I can work with his team to get regular communication and key updates, but just think of all the little things children tell their parents about their days that I never get to know. And now that I'm in tears, I'll move on with my laundry list of stress points in a handy bullet point list:

• Teddy had a horrid time with his bus rides home from school last year for the first two weeks, screaming hysterically the entire ride home. At least I could get a report from AJ about what happened because I felt like neither the bus driver nor the aide were willing to speak to me or even make eye contact when I helped a sobbing Teddy off the bus day after day. I really don't want to repeat that experience, especially since there's no AJ riding the bus with Teddy this year.
• I worry about Teddy being picked on. I know he will be. I know kids will stare, laugh, point and do far worse things because he is different than them.
• I don't want AJ being picked on because of Teddy ... or AJ hearing other children making fun of his brother. I know both will happen, probably not this year at school but still on my list.
• I realized that Teddy is one of the 11 most profoundly disabled children in his age bracket in the entire school district. One of 11. And given what I know about his class last year, I'm going to go on a limb and guess he's one of the 5 most profoundly disabled children in his age bracket. This was somehow an epiphany to me despite being with Teddy much of my days, taking him to therapy and knowing his strengths and challenges. Somehow, it never occurred to me in that context until this week. Most of the time, when I'm not stressing about school, Teddy is just Teddy and that's perfectly normal.
• Then I wonder how on earth our home school, where AJ is going this year, will accommodate Teddy next year? I can't even picture what that looks like because Teddy is at such a different skill set than other children his age. 
• Then I worry about Teddy and AJ being at different schools and all the additional questions and stress points that come along with that topic.
• The next illogical step for me somehow jumps all the way to Teddy moving into the adult service world and living in a group home because I'm afraid he'll require that high of level of care ... and feeling like a horrible parent for contemplating placing my child outside our home and wondering if group homes will still exist or if we'll move backward as a society to institutional care because it's cheaper and blah blah blah.

That, my friends, is my short list of back-to-school stress points. Oh, and I still have to figure out whether AJ is taking hot lunch or packing lunches. 

Brave is not the Same as Fearless

Yesterday at hippotherapy, Teddy's therapist commented on how brave Teddy was. My response was, "There's a difference between bravery and having no fear." She meant that Teddy was willing to try whatever position they maneuvered him into on the horse with complete confidence that they'd keep him from falling. They had Teddy ride side saddle to engage different muscles with the side-to-side motion. They had him lay on his belly across the horse to work on his neck and core muscles. They waited for Teddy to notice he was sliding off the horse and encouraged him to readjust himself, which he actually did several times.

His fearlessness showed  through at the parks we visited yesterday as well. There was the time he was going to just go off a 4-foot drop that was at the top of the rock climbing wall. He didn't try to walk off it. No, he safely sat down on his butt and was going to scooch off it. Safely, of course. (I caught him.) Then there was the time he thought it would be a good idea to walk across the uneven steps that were suspended 3 feet off the ground, with each step about 1 foot apart. After catching him multiple times, I lowered him to the ground.

As much as he does need to develop a healthy appreciation for his own safety, his fearlessness gives him the freedom to try new things and continue to push to do more to keep up with AJ and the other kids. He walked, safely and successfully, up and down many gradual ramps at the park all by himself without holding onto anything. He walked up a steeper ramp with rock climbing holds while holding onto the rails, all by himself. He continued to pop up to his feet whenever he fell (or dropped to his butt to safely navigate an obstacle that he knew he couldn't manage on his feet).

That fearlessness gives him freedom ... and lots of scrapes, bumps and bruises. (Most of which he doesn't even notice, so I suppose that further enables his fearlessness.)

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.

Gene Therapy

There was a segment on the Sunday Morning Show on CBS this weekend about using gene therapy to treat, or possibly cure, rare genetic disorders. It's absolutely amazing how far modern medicine has come that it's actually possible to remove a person's stem cells, replace the faulty gene and reintroduce the altered stem cells back into the body (via the HIV virus of all things! That part actually makes sense because it spreads throughout the entire body, and they modify the virus to ensure the person is not at risk of AIDS).

It's worth the 9 minutes of your time, so click here to watch it.

Of course, this particular treatment involved traveling to Italy for the clinical trial and returning twice a year for the trial follow-up. And it's absolutely worth it to keep your child safe from the disorder that robbed you of one of your daughters when she was 5 years old. Unfortunately, that clinical trial is no longer accepting new patients, and none are being done in the United States and may not for years to come.

This story makes me wonder if, one day, a similar therapy might be available to remove and replace the PIGN gene in children like Teddy with one that functions normally. Could it happen? Maybe. Could it give these children longer, more fulfilling lives? Maybe. Will it ever happen for Teddy? No, realistically it won't.

But that's OK. The disorder featured in this segment is one of, or similar to, the disorders we were actually warned about before we sequenced Teddy's DNA. We were told we might find out that he has this horrible childhood version of Parkinson's that has no cure and would rob him of every function before taking his life. I think that's part of the reason this story moved me so much, to see parents with fully functioning 2-year-old children lose their children in such a torturous way. Yet, the parents still found ways to move forward, to have a purpose in life. One of the families founded The Calliope Joy Foundation with the sole purpose of helping others with the same disorder that's taking their daughter from them.  What strength and grace!

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 ...

Who's Afraid of the Big Bad ... Doctor's Office?

When we visited my mom in a rehabilitation center following her knee replacement, Teddy was freaked out by her room there. At first I thought it was the contraption that automatically bent and straightened her leg, but that didn't seem to be it. Rather than fight it, Dave kept Teddy entertained in the common area, checking out fishies and scoping out the rest of the place. We chalked it up to Teddy being scared of seeing Grandma out of her normal environment and capabilities (although he had a blast with both her walkers).

Teddy was teaching Grandma how to walk.

So I was a bit surprised when I took Teddy to his neurology appointment last week when he cried when I set him on the scale for his weight. I became more perplexed when he continued to cry and act afraid when we went into the exam room. Teddy's norm is to engage new, smiling faces and attempt to take any of the objects they're using to get measurements because they are obviously toys for him. Instead, he whimpered and cried and eyed the nurse like she was Santa's helper the entire time. (That, folks, is not a compliment in Teddy's mind.)

He settled down and warmed up quite a bit as the appointment continued with his awesome neurologist, but he still wasn't his usually Teddy self. (He didn't even try to eat the doctor's pet parrot Jabber.)

Honestly, I'm befuddled as to what caused this change for Teddy because there was nothing traumatic (from my viewpoint at least) at the rehab place or the neurology office. No labs, no confining tests, nothing that would agitate Teddy (and even those rarely cause much more than a few tears while they occur). Although I'm happy to see him demonstrate his emotions and dislikes, why couldn't he develop a fear of being too high when he climbs onto the kitchen table instead?