Gratitude and Perspective

I just finished watching the movie Henry Poole Was Here. It wasn't a movie that I loved, but I felt too invested to not finish it. So I did. Without spoiling the movie, I will say I took away the message about living in the moment and enjoying the gifts we have. 

I'm trying this year, sometimes successfully and other moments not quite so much, to be present. Life last year was a wicked reminder that nothing is guaranteed and that our lives can change in an instant. (The ironic thing with cancer is that we feel as though our lives change in an instant, yet the change is already happening inside our bodies for some time before it's discovered. Perhaps that's too deep for this blog, but I'd like to think the same is true for positive changes as well ... that they're occurring long before we see the results.) Anyways, my intention is to be present and soak in the moments, finding the joy and happiness that exists each day.

Last week Teddy woke up at 3:30 a.m. Not for a bit before falling back asleep. No, he woke up for the day at 3:30 a.m. 

I'll be the first to admit my gratitude at 3:30 a.m. is outweighed by my desire for sleep. However, I checked weather and determined that, yes, indeed, it was warm enough to take Teddy outdoors. So Dave hung with him until 4:30 while I was super productive prepping cookies and breads for my bakery. Then we bundled Teddy in snowpants and all his gear (because warm enough in Wisconsin March still means snow gear to protect from the chill). And we headed to run with my friend at 5 a.m.

5 a.m. photos are a bit blurry.

Fortunately, I have incredible friends who aren't surprised when we have an extra running buddy for our early morning runs. Better yet, a few of them willingly offer to help push him! Teddy absolutely loves hanging with my friends and loves running with us (even if there's no popcorn and barstools afterward). So we did 5 miles of both cardio and strength training (as he weighs a solid 100 pounds now, plus his chair) before 6 a.m. 

Although we joked about being out of shape for pushing, I headed home from that run filled with gratitude that I can still run with Teddy. So many things have become more difficult or impossible through the years, and this is something we both love doing together that we can continue to do. 

And, let's be honest, few things make you feel more like a kickbutt human than pushing your son for a 5-mile run at 5 a.m. even if you wish he was still sleeping then.  

Crazy in Love

That's either a song title or a movie, isn't it? It's also how I feel about Teddy. Some days he drives me crazy, and other moments I'm crazy in love with him. Just tonight, he was riding with Dave to mow the lawn, and I was push mowing at the same time. He looked at me and grinned with his mega-watt smile, and I couldn't help but smile and appreciate the moment.

Now, I realize he was grinning at the lawn mower, not me. He loves lawn mowers. But I still got to see that gigantic smile and appreciate his joy for life. That boy lives life to the fullest and lives in the moment. The good things are oh so good and rewarded with giggles, laughter and smiles that make you smile. Someone recently commented that his dimples are so big that they're visible even when he's not smiling. If he makes it to old age, he will have the best smile lines because he does that so often.

Of course, when he's upset, you know it. He feels everything in the moment and lives in that moment. There's no reasoning about the fact that supper is almost ready if he's melted onto the floor miserable because he wants to eat now. In that circumstance, the best thing to do is lay right next to him on the floor and snuggle into him. When you make that effort to connect with him, he usually can peel himself off the floor and out of that moment. 

We've often said how much we wish we could know what goes on in his mind at any given moment. Teddy's great at communicating what he wants, but his actual thought processes are entirely a mystery. Just yesterday, I watched him place his notebook and pen high on a shelf that he normally doesn't set stuff on and then run into the other room. I have no idea what prompted those actions and often wonder about the little things like that.

No wondering here. He is mesmerized by the tractor.

This has been quite the rambling post, but it's been a long day and a long week (mostly at work, not so much at home). I'm grateful for the times Teddy takes away the stress of other things by helping me live in the moment. It's only fair that he does that since he so often is the source of stress for us. 

So Many Faces, So Many Countries

When we first connected with our PIGN-CDG Facebook group, I believe there were at most 5 other families who had a child or children diagnosed with PIGN. It was a monumental day when a new family joined because it happened once or twice a year. I could tell you each child by name and location, along with their parent(s). 

In the past two alone, we've had 3 families join our group from 3 different countries. Let's just say I can't keep up with everyone any more. And I'm OK with that because it means we all have a greater support network, people to pray for us, root for our children and share their lived knowledge. 

One of the other moms compiled this video of the vast majority of our group for World CDG Day. It's obviously missing the 3 newest families, along with just a handful of others from our group. My thanks to Ashleigh for her advocacy for all our PIGN families. She is one of the most welcoming and supportive people you could imagine, who has kind words and honest support for everyone in our group. She was the first other parent we connected with after Teddy's diagnosis, and it felt like we were instantly close friends. I greatly appreciate her efforts in putting this video together and letting me share our children with the world. 

If you've ever wondered what PIGN-CDG looks like, or whether there's anyone in your country with this disorder, please enjoy our beautiful, determined children.

First Day of School

 After countless phone calls and e-mails (and discovering that the director of special education for our district knows Teddy by name and personality) and an IEP meeting two days before school started, we had our plan in place for Teddy's education this year. We're still working on approvals for outpatient therapy (particularly getting OT extended and speech approved for the school year), but thankfully PT is set for the rest of the calendar year. Teddy has settled back into his music therapy sessions without missing a beat. (Pun intended.) Our childcare provider is working with him on academic activities daily at home, which he's excited to do because it's new materials to explore. It's super fun to watch him concentrate on an activity because his tongue either juts out of his mouth or into his bottom lip, so it's easy to tell when he's truly focused. 

This week was the first week Teddy went to school for his academic time. If you recall, we had advocated for homebound education for Teddy due to all the risk factors, but that was oddly enough deemed too risky by the school district. So, we're doing homebound at school, which means that twice a week Teddy goes for 1:1 instruction in a designated room. We had coordinated with his team where that room is located, how it would be sanitized and that PPE would be worn by his teacher. 

We felt comfortable with all the pre-work done as his school designated a room immediately inside the building, so Teddy doesn't have access to take off to explore the rest of his school. His team even took the time to explain, without us asking, the two different levels of cleaning products they will use to sanitize the room prior to Teddy's time learning there. Still, I was a bit surprised when his teacher commented on the first day of school about his PPE and pleasantly surprised when he sent a photo at the end of the day.

Guys, Teddy's teacher wore full personal protective equipment (PPE) to teach Teddy. He wore the same level of PPE that is used for interacting with known COVID positive cases in medical settings (aside from a cloth vs. surgical mask). He wore a mask, face shield, gown and gloves. While this might seem like overkill (and candidly was more than we were expecting), this all but ensures that even if Teddy's teacher has COVID that Teddy would not be exposed to it. And you might not be able to tell from the picture, but I can tell you that his teacher did this with a smile to support Teddy with his learning. 

Teddy was a bit intrigued by the PPE but still had a great session.

Right now it feels like our world is returning to normal with little regard for those who are most vulnerable to COVID. We often feel like we're in the minority in doing the right things like wearing a mask, physically distancing and keeping a small social footprint, but we don't feel like we have a choice to keep Teddy safe. That gets disheartening, but the effort made by his school and team to safely educate Teddy truly gives me hope and warms my heart. He matters to them. His education. His safety. They're working with us to make it safe for Teddy to be in this world, and we are so grateful for their support. 

Often I hear of how people are tired of the PPE they have to wear to do their jobs. I'm sure that no teacher expected to wear a mask to school, much less full PPE like this. Life is different right now. It won't always be different, but we'll always be different because of it. We'll forever remember the helpers and those who eased the stress of these challenging times. (And we'll probably at least know how to properly wash our hands.) 

It Takes a Village

The phrase it takes a village is commonly uttered regarding raising children, and that's been on my mind lately. Often, it takes the terrible things, like Teddy's ICU stay, to make you stop long enough to realize how blessed you are. So, I want to intentionally pause to thank our village for all they do for us, even though I'm certain to miss someone who makes our lives better.

Our families are incredible support systems for us, particularly our parents who will come to our house with a single phone call, regardless of the time. They've been with us through some of Teddy's worst seizures, as luck would have it, and were able to step in to help AJ through those times, although they had to be worried sick themselves. They are Teddy's greatest cheerleaders and supporters. Then there's our siblings, who ensure Teddy has the best shirts to help him make a statement (ranging from I do my own stunts to Genetically Enhanced). There's Teddy's cousins, who've learned to love and accept him (most of the time). Our aunts and uncles keep Teddy in their prayers and play with him. From tractor rides to ranger rides, my dad and uncle make sure Teddy is entertained. My dad helps us to adapt things to allow Teddy to participate, including his incredible Beast for winter tubing. My grandpa has embraced Teddy for who he is, no longer wondering whether he'll talk but instead having conversations with him and allowing Teddy to push his walker all around with them giving each other rides. My aunt lives in Milwaukee, where we've spent countless hours with specialists, and she's been at so many of those appointments if only to keep me company and help entertain Teddy. And she manages to make each visit seem like a treat that she gets to see us, instead of the other way around. 

AJ is often on the receiving end of support for our family, but that child deserves his own mention. I'd say Dave and I struggle to help him understand at times that we're the parents and that's not his role to be Teddy's parent. Yet at the same time, he watches out for Teddy's safety, helps get him dressed (because Teddy often fights less if it's AJ helping him) and does things like wipe his brother's nose without even being asked. He does so much for his brother and makes our lives as Teddy's actual parents easier.

The angels, other captains and their families and the crew of myTEAM Triumph (MTT) are an incredible blessing in our lives. At first it was the sense of true belonging and acceptance, whether we licked the race chair (Teddy) or dragged people inside the storage trailer on hot days (also Teddy). It has evolved into friendships, people who I know would be here to help if we ever needed it. And they help so much in each training run and interaction that lets us know they care about our family and we're a part of the MTT family. I'm also coming to realize the parents in that group have lived so many situations we're likely to encounter and are terrific resources.

Then there's our neighbors who welcome Teddy with open arms, share their toys and keep their garage doors closed to save me from chasing Teddy into their garages. (Sometimes it's those little things that make life easier.) They also keep an eye out for Teddy and helped me track him down the one time I temporarily misplaced him this summer. 

Teddy's first playmates were his outpatient speech, physical and occupational therapists, and he's still fortunate to see most of his original team 6 years later. They pushed him and made him work, but they also celebrated his successes, demonstrated tremendous creativity and patience and encouraged all the work we do. He's also had music therapists and a team at hippotherapy that help him to learn new things and provide support for him to grow stronger in his skills. 

His Birth to Three team were similar to his therapists, although I always felt they focused a bit more on celebrating successes before setting the next objective. They came to our home, met Teddy where he was and were excellent at connecting us with other resources including his case worker and physical therapist who designs his braces. He's not only kept Teddy in braces that help him walk, but he's worked with us to get the right gait trainer and bike for Teddy. 

We have a great case worker who has helped us get a number of things that Teddy needed to be successful, from adaptive seating to an adapted bicycle to a running and biking chair! She understands our family's desire to spend time outdoors and helps to minimize obstacles for us to be active as a family in our community. 

We have been so blessed through the years to have fantastic babysitters who've worked with our boys in our home and taken them on adventures in the community. There's Jenny, who's watched our boys since they were tiny in Green Bay, and then there's a string of wonderful ones here in Oshkosh: Katelyn, Melanie, Bri and now Sigrid and Amanda. These ladies have our utmost trust and appreciation for spending so much time with our boys, helping out when the kids were sick and giving them such fantastic childhood memories. Our boys look forward to their time with their sitters, and it's because they're absolutely wonderful people who we'd be lost without. We cannot say enough about the relief it is to have reliable childcare, but these ladies often become an extended part of our family while they're with us. 

We've also appreciated the relative consistency of our agency staff the last year and a half. Although the last couple months were challenging with staffing, we're now one week into a new provider, and Teddy had a great first week. While no provider will be perfect, we've appreciated some flexibility and consistency, which is tough to find through agencies.

At school, Teddy has such a support team. His team of formal supports and those who regularly support him is probably close to 20 people including his teacher, all the paraprofessionals in his class, his first grade teacher, his gym and adapted PE teachers, his music teacher, his art teacher, the nurse, all his therapists and the assistive technology specialist. That doesn't include the ladies in the office, who know him by name (doesn't hurt that he face plants into the glass window by their office because he's so excited to be there ... well, it might if you weren't Teddy). There are so many people in his school who know him and look out for him, including friends in his classroom and the first grade classroom. And there's also the other wonderful, caring teachers and teams he's had through the years. Although he's only in first grade, this is his fourth year in the school system. 

We'd be remiss to discuss school without mentioning his bus drivers. We could not ask for a better person to take Teddy to/from school. Lori is absolutely a blessing, from providing reminders and helping keep track of schedules to being flexible when we ran into scheduling issues. We never doubt Teddy's safety nor his enjoyment when he's with Lori. Not only does she care for Teddy, she makes sure AJ also is included in her generosity. 

There's our friends, those who stay in touch through Facebook and that handful that are there in person. Specifically, my friend Amber and her entire family have helped more times than I can count. They've let me borrow their older children to help entertain my own children, and their girls interact with Teddy without a second thought. Alexis and Hannah are two of Teddy's favorite people to see because they play with him and often let him dictate what and how they play. 

Less than two years ago, I started running with some other ladies who were crazy enough to run at 4:45 a.m. through the heat and the sub-zero temperatures. I cannot imagine life without those ladies, who provide much-needed stress relief but also are willing to help each other with whatever life throws our ways. When I was heading on a trip, one friended Dave, so she could give him her numbers and availability and offer to help if anything was needed. So many of these ladies have also joined me as angels for Captain Teddy through MTT, creating special memories. 

We have a fantastic team of doctors now, and we had a terrific geneticist who helped us search for answers for two years. Teddy's pediatrician understands our paranoia, for lack of a better word, when Teddy is ill and works well with Teddy. Our neurologist is someone who I'd drive hours to see because I don't doubt his brilliance and couldn't imagine finding someone else who treats Teddy so well and cares about us as parents. 

Both Dave and I are blessed with understanding and flexible employers. We have some generous co-workers, who've shared both monetary gifts with us and gifts of time by taking Teddy to a MTT event on their own. We've needed flexibility when life with Teddy happens (or AJ for that matter), and we've been given that flexibility along with offers of how they can help. 

The last several years our lives have been richer with the friendships made through I Run 4. Both AJ and Teddy have incredible running buddies who cheer for them, encourage them and make them both feel mighty special. (I happen to have a really cool running buddy myself.) This has been so wonderful for us. Even though so much of this support is from afar, it truly impacts our lives. 

Another group that has enriched our lives is other families with CDG-PIGN. Our group is such a tremendous resource for each other because collectively we know more than most doctors and can freely share information and experiences. There's friendships that are formed, even if we never meet in person, because of our shared bond. These are people who simply get it. They're living some other version of our lives and can share advice, empathy and support. That is invaluable. 

Then there's the adapted aquatics class, which was such a novel experience for us at first because someone else wrestled Teddy for an hour while we got to watch the pure joy on his face. He was doing something he loved, and we got to appreciate it because we weren't working with him the entire time. Now that time has evolved to us taking advantage of that time to work on projects instead of watching the entire class mesmerized, and it's still a blessing. 

Last but not least, there's all those who pray for us. I know that our family, and Teddy in particular, are the benefactors of so many prayers, and we're grateful for that. 

So, I know this is long, and yet I still likely forgot someone or some group. There are so many people who help us quite simply keep Teddy alive and then help him be his best self and live a fulfilling life. To all those people in our village, thank you. We couldn't do it without you. 

Beyond Blessed and Grateful

As promised in my previous post about Teddy's incredibly scary seizure episode, this post is about gratitude. Although I hope that each of you reading this never endures anything of a similar scope, I am incredibly grateful for the tremendous outpouring of love, prayers and support we received. Experiencing that much goodness allowed me to fall asleep the first night home by counting my blessings instead of my fears.

First, I have no doubt that God watched over Teddy throughout this entire experience. Due to Dave being ill, he was home from work and able to attend the Christmas program, which wasn't originally the plan. My mom was over visiting to help the next few days, so she was instantly there to help keep AJ's life normal while we were gone. The huge snowstorm that was supposed to hit never materialized (although that could just be a result of me not working in Green Bay because I was in the ICU ... it always snows when I drive to Green Bay this winter).  We had the most incredible nurses, doctors and medical staff working on Teddy both in Oshkosh and Milwaukee.

God certainly heard the prayers of all our family, friends and their family and friends who were praying for our family, even before the prayers were sent His way. At the ER, I posted to our PIGN group, where each family has a child or children with Teddy's diagnosis. Unfortunately, they relate all too well to how quickly a seizure or illness can change everything. That meant that within minutes we had prayers from across the country and literally around the world. We had an offer that Chicago wasn't that far from Milwaukee if we needed anything. We had people in New York and Florida offering to order food for us or whatever we needed. Had we asked or given them the information to do so, it would have been there without a doubt.

We had offers from at least 5 different people to take AJ while we were in Milwaukee, some expected from dear friends, others from co-workers and one quite surprising yet sincere offer from one of Teddy's therapists (who had met AJ one time). Thankfully my mom had that under control, but it was reassuring to know that we had so many people willing to include AJ into their families.

Both Dave and I are blessed to work for employers, and bosses, who are extremely understanding. It's so nice to be able to focus on what matters most instead of worrying about missing work. Both our bosses offered to assist however they could, even bringing things down to Milwaukee if we needed. 

Dozens of people sent their well wishes via texts and Facebook, along with prayers and positive thoughts. Many offered to help (multiple times) with anything we needed. We had folks we hadn't seen in years who live in the Milwaukee area offer their assistance.

The one thing I discovered, though, in the process is that it's really hard to ask for help even when you want it. The only person we asked, aside from my mom caring for AJ, was for my aunt who lives in Milwaukee to pick up some necessities we had forgotten. (Necessities at that point included Tylenol and leggings for me, pacifiers for Teddy and decent coffee for Dave's folks. Standard necessities for nursing the stomach bug and a sleepless night in the hospital.) Not only did my aunt oblige our requests, but she also brought donuts and other snacks for us, along with a singing Christmas toy to entertain Teddy. (Teddy was so miserable the toy did nothing for him until we got home, but he does indeed like it now that he feels like himself.) She also came back for a second visit later in the day, bringing Dave's favorite sandwich for dinner.

I had someone offer to bring us a pan of lasagna the Saturday we got home. I almost said yes because lasagna sounded really good to me but said no because we really didn't need it. It seemed selfish to have that person make lasagna, especially heading into a holiday weekend. However, when Teddy's teacher asked to stop by after school on Friday with his artwork and Christmas present for us, she surprised us with a card from his team that included a generous gift card to a local restaurant. She explained that they wanted to do something and figured we didn't need to worry about cooking a meal after the events of the past few days. I greatly appreciate the gesture and the lesson that I need to take away to simply do rather than ask or say to let me know how I can help. It's incredibly hard to ask for help and much easier to accept it when it's simply given to you.

The boys love that the card sings. I love the thoughtfulness.

A few acts of kindness surprised us in the mail. The boys both received cards and pictures from their cousins—a sweet gesture to let them know they were in their thoughts. Teddy also received a card that was quite unexpected from one of his bus drivers. I'm assuming his teacher told the bus drivers why Teddy wasn't on the bus, and she mailed a card to him letting him know she's praying for him.

This was completely unexpected kindness.

When we went to Dave's family Christmas gathering the weekend we returned home from the hospital, we had several people comment that all they needed for Christmas was to see Teddy smiling and being his usual self. If there was ever a doubt of how many family members were praying for Teddy—not that there was—it would have been removed by hearing from Dave's family. (His mom is one of 13 children, so there's a whole lot of people at that party checking on Teddy.)

It's a combination of expected support from dear friends and family, who've been with us through the initial seizures, to the prayers and love from our PIGN group to the overwhelming support from co-workers, our employers and everyone who knows Teddy.

To everyone who supported us, thank you. What you may have viewed as simple posts on Facebook, texts you sent without worrying what you were typing or another ordinary prayer made us feel so loved and supported through those trying days. I couldn't have imagined the outpouring of support we received, but I am oh so grateful for it.