Happy Belated Birthday!

Two weeks ago we celebrated Teddy's 12th birthday. While 12 may not seem like a milestone, every birthday for Teddy feels like a milestone because of the medical literature that existed when we got his diagnosis when he was 2.5 years old.

At that time, there was so little known about his disorder (at the time called Multiple Congenital Anomalies-Hypotonia Seizures Syndrome 1, now known as PIGN-CDG) that Google returned less than 10 results. And tucked into those results was the life expectancy of 3 years.    

Imagine reading that when your child is only 6 months away from turning 3, wondering why he has this invisible expiration date that you didn't know existed, contemplating how your relatively healthy child could be dead in months. 

Needless to say, the medical literature was wrong. While his disorder does unfortunately take away far too many of our children far too early from complications from seizures, respiratory illnesses and a world that is too hard for those sweet ones with medically fragile bodies, others are surviving and thriving well into their 30s and likely beyond. Given that this disorder was only discovered in 2011 and that there's so few known cases, that's why we aren't aware of older individuals, not because they don't exist.

So that's why birthdays feel monumental. At times they feel challenging because it's hard to know what to get Teddy some years. Other years it's a reminder of another year of age, yet developmentally not being where his peers are. We never know quite what emotions will arise with birthdays. 

But this was a sweet year, a day filled with a bunch of family and friends. A day spent playing with all his people, loving that more than any of his gifts, though he did great opening his gifts. A year with lots of ice cream gift cards, so he and his best friend can keep visiting Baskin Robbins like it's going out of style. 

Oh, and there was dancing and a giant dinosaur balloon to ride ... until it died. But it's probably an OK thing that it died because Teddy was about to make all the adults ride it. 

Birthday boy with his toys. 

Happy Birthday Buddy!

How is it possible that my little guy is 11?!? 

He's not so little any more ...

Teddy's birthday is often a mix of emotions:

• Gratitude to have another year with Teddy. When we got his diagnosis at 2.5 years old, we read the life expectancy was 3 years old. Given that there are only about 100 known cases of PIGN-CDG in the world, we know far too many families who've buried their children from this diagnosis. Yet Teddy and others continue to thrive and write their own stories.  
• Sadness that comes with comparison. In the words of Teddy's namesake, "Comparison is the thief of joy." Some years it's easy to get lost in the rabbit hole of what Teddy can't do compared to others his age. It's especially easy when shopping for gifts is hard.
• Happiness of the celebration with family and friends. The best thing for Teddy isn't presents, but rather the presence of his favorite people.

This year was extra chaotic because I had a farmer's market the morning of his birthday, so this year didn't come with quite so many emotions. I lived in the land of happiness and gratitude, loving seeing him so happy as he spent his afternoon and evening with his favorite people.

Birthday buddies - Teddy & Collin got to celebrate their birthdays together last week.

We invited family, neighbors and friends, and so many of them made an appearance (whether that was for Teddy or the pulled pork is debatable). I snuck him away for a quick visit for his sitter's graduation party, and he was overwhelmed when we returned home because so many of his favorites were here that he couldn't decide who to play with first! 

We're so blessed to have Teddy as our son and blessed beyond measure to have the community that surrounds and loves on him!

Happy 10th Birthday!

Happy birthday Teddy! 

While I'd love to write a beautiful blog post, I'm exhausted. So here's a recent photo of the birthday boy, and I'll reminisce another day.

That smile. 

Happy Birthday AJ!

When Teddy was born and AJ first met him, AJ's first comment was, "Uh-oh!" He couldn't have been more right in his prediction about Teddy, but Teddy couldn't have been blessed with a better big brother than AJ.

AJ has always been a helper, even when he was 2 years old and Teddy was a newborn. I'll be honest, his helping skills have greatly improved through the years from the time he "helped" by pulling Teddy off the chair onto the floor because Teddy woke up from his nap ... at 4 months old. Well, that explained the thud I heard.

Now AJ helps by taking Teddy for ranger rides at the land, watching him for short periods while I'm otherwise busy in the house and playing with him as brothers do. He continues to talk about how he'll take Teddy on ice cream runs when he gets his driver license.

AJ is a super big brother!

This kid endures (yes, that's the right word) more than most do. Although most siblings bicker and fight, Teddy constantly gets into AJ's business, occasionally breaks his things and physically pushes, shoves and sits on AJ when he gets in his moods. Yet that doesn't change AJ's love of his brother - or his desire to raise awareness of PIGN-CDG - or his desire to fundraise to explore treatment options. 

AJ's a super special kid with a huge heart. Happy birthday dude!

Happy birthday dude!

Happy 9th Birthday!

One of my favorite aspects of Facebook is the Memories feature, reminding me of what was shared in past years. I chuckled today when I was reminded of AJ's first impression when he met his baby brother Teddy, "Uh oh." I think AJ accurately predicted life with Teddy before any of us knew any different. 

AJ predicted the future with Teddy.

It's been a wild ride with Teddy, living with the unpredictability and never-ending fear of terrifying seizures, a whole team of specialists including therapists who've worked with him now for 8 of his 9 years, more doctor's visits than I can count, 3 surgeries including one that lasted 7 hours and involved a neurosurgeon, 2 ambulance rides, one ICU stay and God only knows how many concussions. (Seriously, he's never been diagnosed with any, but I'm sure God knows how many he's had because I'm certain he's been concussed.)

Teddy's always up for adventure.

Life with Teddy is not what we imagined, yet we're blessed beyond measure. He lives life in the moment, wants to share the things that bring him happiness and radiates joy. He's changed so many lives, including ours, for the better. He's opened the doors to a world we never knew with other PIGN-CDG families, myTEAM Triumph, I Run 4, SibShop and Miracle League to name a few. There's a whole community that makes his life, and ours, better and more enriching. And he makes our community better by being himself, breaking barriers and preconceived notions about people with disabilities as he makes friends throughout his adventures. He's brought incredible childcare providers into our lives, who've truly become like family to us.

Just another ordinary moment for this extraordinary boy.

Life with Teddy isn't simple, but he gives us the opportunity to embrace the simple things, to be present and just be happy with him. What a gift!

Let's see how many more years this can happen. ;-)

Happy birthday to one of the weirdest, bravest, most determined and joyful people in the world! I'm so lucky you're mine (and that we have a good support system because I'd fail miserably on my own with you. You're definitely one who exemplifies the saying, "It takes a village.")

Birthday Bash

Teddy has been invited to one or two birthday parties for friends in the past, but it hasn't worked out for him to attend them. He was invited to a birthday party this week at Monkey Joe's, which is a bouncy house indoor activity place. Teddy's been there a couple times and had a blast, and it's such a great physical therapy workout for him! (It's also where AJ attended his first friend's birthday party ... and got stuck inside one of the bouncy obstacles for 10 minutes sobbing hysterically.)

Our wonderful nanny Bri agreed to take Teddy because it was right after his therapy appointment. At first Teddy was perplexed why he was there and uncertain whether he could actually play. But once he realized he could jump, bounce, climb and slide to his heart's content with his friends from school, he was ecstatic. He couldn't even be bothered to eat the pizza, although he did manage to stop long enough to eat a cupcake. 

No mask can hide his excitement!

I'm so glad Teddy had this opportunity!

Happy 8th Birthday!

It's hard to believe that Teddy turned 8 yesterday. With COVID still a reality for our family, we didn't plan a party. On one hand, Teddy adores people and enjoys the attention, so he'd absolutely love a birthday party with all his favorite people. On the other hand, his birthday is just another day to him without all the anticipation that typically comes for a young child's birthday, so skipping a birthday party isn't emotionally scarring for him.

I probably suffer with more "mom guilt" than any suffering on Ted's behalf. That's partially because we didn't arrive home until 5 p.m. on his birthday because we were on a backcountry camping trip with AJ. Again, Teddy's birthday is just another day to him, so it's not like he was devastated we missed his birthday, and it was truly the only time we could secure the camping reservation. Plus, he probably had way more fun with his 1:1 time with his grandma and then a sleepover with his babysitter. 

Ted spent his birthday visiting the small local zoo, where he was fascinated by the lawn mower and the police handing out books more than the animals. He got Culver's for lunch and pizza for dinner, followed by a birthday cupcake that he had to share with his sitter who went above and beyond to make our camping trip possible. 

Then we spent today, the day after his birthday, together as a family. We visited our other sitter's lake house and spent the entire afternoon swimming, boating and chasing Ted as he attempted to get back on the boat. (He really loves boats!) It was an afternoon filled with food, water, and fun, all things Teddy enjoys. 

Amazingly, no one flipped on the paddleboard.

Next year we'll do a party for all our family, and Teddy will be more excited to see his people than his presents. This year, he'll continue to open the fun cards and gifts that arrive and spread out the fun of turning 8. 

We had fun whipping donuts in the paddle boat.

Birthday & See Ya Later Celebration

This week we celebrated Ms. Sigrid's birthday, about a week or so early. She's been helping us out after school while she's teaching, but our new sitter started yesterday. Since we're not desperate for help, we are swapping risk by adding our new sitter to our circle and (temporarily) removing Ms. Sigrid. So, we wanted to celebrate her birthday and have an excuse to make a delicious dinner for her before she left.

We made green bean casserole, steak (because that's a treat particularly when you're in college), French fries and French onion soup stuffed shells. She bought into my idea for a cookie dough birthday cake to expand upon her request for chocolate cake. 

It's not a birthday without cake and singing!

We managed to celebrate with both of our sitters that evening because Ms. Sigrid picked a night that Ms. Bri is at our house because they enjoy sharing "war stories" of our children. I don't blame them. Teddy gets so excited when both of them are here together that he often can't figure out who to boss around. 

We enjoyed delicious food, if I say so myself, showed her the picture preview of her present that is still coming in the mail, gave her homemade cards, and Teddy even showed her a perfectly executed ballerina move. She's been working hard to teach him a new dance move that involves putting his hands on his head and spinning in a circle, but she's yet to see him fully execute it without her physically assisting him. He was being a ballerina during the halftime show, so she finally got to witness him complete the move with only verbal encouragement. 

Notice how she's carrying Teddy on her back. 

I love that we have such amazing people who are truly an extension of our family. Dave's birthday is next week, and I already told him the bar is much lower for his celebration. We'll miss Ms. Sigrid the next couple months, but we're already excited to see her again this summer when she comes back after student teaching!

Happy Birthday to the Best Big Brother

Nine years ago today, our dreams of becoming parents came true when AJ was born. With a little help from a lot of people, we celebrated his birthday quarantine style so well that he declared it to be the "best birthday ever!" I had reached out on Facebook to ask for a little extra love on his birthday, specifically cards to brighten his days. I intentionally said he didn't need presents but said that if folks wanted to tuck a dollar or two in the card that he's saving money for charity. The kindness and generosity of our family and friends means that he now has right around $100 to donate to the charities on his list. 

Happy 9th birthday AJ!

We still are quite careful regarding COVID and precautions, so that meant a birthday party with our two childcare providers replaced the usual gathering with all our family. Teddy was ecstatic to have both babysitters here at the same time and couldn't decide who he wanted to boss around with so many different options. We still did very small family celebrations, which spread the celebrations out to celebrate with each set of grandparents, and we have a virtual party planned to spend time with his cousins. There were a handful of masked visits, including much love from our myTEAM Triumph family. Masks might hide the smiles, but trust me, they were there for every visit. 

MTT friends surprised us with a cul de sac distanced birthday celebration. 

Today was an incredible day celebrating an incredible boy. We're so blessed to have AJ as our son and Teddy's big brother, and we're so grateful to all who made this day special for him. 

Things I've Learned in 7 Years as Teddy's Mom

Seven years ago today, Teddy made his entrance into this world in a rather dramatic fashion. As we celebrate his birthday during a pandemic this year, where birthday celebrations look much different, I thought it would be a good time to reflect on lessons learned living with Teddy. In no particular order, here goes:

1. I know what seizures look like. Well, at least a wide variety of seizures. There's still a part of me that wonders if we've missed some of Teddy's seizure activity because we're not well enough trained to see them. But those shake, rattle and roll ones, those we recognize.
2. A rare genetic disorder diagnosis changes everything and nothing in an instant.
3. The world is much smaller than you think. Teddy's gotten birthday cards from Poland and birthday greetings from Germany and Australia from other families with his diagnosis.
4. Live in the moment. All the time.
5. If you are excited to see someone, show them. Preferably by jumping up and down and grinning like a maniac. 
6. If something is fun, share it with others. Fun things aren't meant to be hoarded, they're meant to be shared.
7. If you're hungry and it looks tasty, eat it. Apparently this applies to paper products as well ... not sure about that.
8. If someone says no to a request, you clearly didn't ask them in the right way. Continue to ask, and be persistent. They'll often agree to your request eventually. 
9. Licking people is funny.
10. Only one person can ride in the back of an ambulance ... if they even let one person. Otherwise, only one person can ride up front. 
11. We have an incredibly supportive family, who will drop anything and come when needed, even in the middle of the night. 
12. Cell phone service in the Oshkosh emergency room is rather poor.
13. Speech, OT, PT, hippotherapy and music therapy all can do amazing things to help someone progress. 
14. Progress can be measured in inchstones rather than milestones.
15. It is possible to backpack a 55-pound child who is getting really tall. It's just not possible for long distances anymore. 
16. Persistence is key. If you keep trying, eventually, you can find a way to do most things. It may not be pretty or perfect, but you can find a way to make things work.
17. Always bring baby wipes to swim class. Always bring baby wipes everywhere. Wiping poop with your fingers is something you never want to repeat.
18. Poison Control Center folks are really pleasant and helpful. Multiple calls have confirmed this.
19. On a related note, a child can consume an entire bottle of children's tylenol and be fine if they are the same weight as Teddy was. Also, if a child consumes hand sanitizer, the greatest risk is alcohol poisoning and you should watch for signs of drunkenness. Oh, vitamin E in small doses isn't overly problematic either.
20. Smile at other people. It makes life better.
21. My TEAM Triumph is an amazing organization that builds incredible connections in our communities. If you enjoy running, biking or swimming, you should definitely check it out. You don't need to be an incredible athlete to be an angel and make a difference in someone's life. Some of our greatest supports come from MTT. #runlikeangels
22. Children's Hospital has some incredible doctors and nurses, as does Oshkosh emergency room.
23. Dr. Terrence Edgar is an absolutely phenomenal pediatric neurologist. I hope Teddy ages out of pediatrics before he retires or moves. 
24. National Institutes of Health does all sorts of rather awesome research and treatment. There's also an extremely nice facility for families to stay at during their visits there, although airport-level security is required each time you enter the facility. 
25. Life doesn't go as planned. Ever. But trusting that God has a plan and the prayers and love of all our support help us manage through life. 

Happy 7th birthday Teddy!

Birthday Adventures

So, this is more than a week late, but Teddy is 6!

Birthdays are a gamble with Teddy. Will they be joyful occasions, celebrating all that he's accomplished and the fact that we've been blessed with another year of life with Teddy? That's what each birthday should be because the medical research we got with his diagnosis had a prognosis of not more than 3 years for life expectancy.

The reality, though, is that sometimes birthdays are hard. Sometimes, they're a reminder that he's another year older, which means the gap between him and his peers only increases. He's now 6, and I've still never heard the words "I love you." (Trust me, he communicates that loud and clear in other ways.)

Then, there's other years, where he's struggling to sleep, so we're all frustrated and stressed, which makes the thought of a birthday party less than appealing. That was this year. But, we still had a fantastic day, and both David and Teddy got naps, which helped greatly.

For Teddy's birthday this year, we spent his actual birthday on our land riding around, checking out the scenery and making the most of the weather between storms. For 6 hours of driving in a day, we had a great time with nearly 5 hours there playing and exploring. For Teddy, riding around in vehicles is the best thing ever, so it was a pretty cool birthday.

The birthday boy doing one of his favorite things. 

We did his party a week later, and we had a bit fewer folks than normal due to trips, work schedules and life being busy. The great thing is that Teddy is excited enough for presents, but what he really loves is all the people. He was eating up all the company and the opportunity to play with his cousins. When it came time to open presents, he wanted to direct everyone else to help open his presents to make sure they were included in the fun. That's one of the things I love about him--not that he's a little dictator--but that he loves to share his joyful experiences with others.

Teddy tries our patience daily, particularly now that he's mastered escaping out the front door through two sets of locks in less than 10 seconds. But, he has such joy for life, such determination and the ability to live in the moment. There's plenty of times that I need to channel my inner Teddy because there's so much awesomeness in that little boy who's not quite so little anymore.

An Exciting Invitation

Two weeks ago, Teddy brought home an envelope from his kindergarten class. It was an invitation for a birthday party. Let me make sure you understand: it was his first invitation to a friend's birthday. And it was a friend from his kindergarten class, not his class with other children with significant special needs. 

Teddy's first birthday party invitation to a friend's party.

I know AJ brought home several all-class or all-boy party invites, along with a few special friend party invitations, through the past two years. It's fairly common at this age to have entire classes invited to parties, although that sounds like a nightmare to me. Who wants that much crap from 20 kids who have no idea what your child likes? 

But this is notable for a few reasons. First, it means that Teddy is actually included in the kindergarten classroom enough that he was included, assuming the entire class was invited. Second, it means he was included, regardless of his differences because I cannot imagine that his classmates don't share about the boy who doesn't speak. 

Unfortunately, we were up north, so we couldn't attend. I say we because I would have had to supervise and support Teddy if he attended, which would have been interesting to say the least. But we had planned family photos up north, so that's where went with happy hearts that Teddy was included.

Let's be real: I would have been doing that move with Teddy at the party.

We managed a fairly normal family photo.

Happy 5th Birthday Teddy!

Teddy turned 5 this past Friday and had a fun-filled weekend celebrating with family and friends. His cousins were in town all day Friday, so we met for an afternoon at a place with giant inflatables since it was raining. AJ and Teddy had an absolute blast playing with their cousins. They spent 3 hours straight running around, climbing inflatables and sliding down in a tangled pile of arms and legs. It was one of my absolute favorite memories of the cousins for a couple reasons.

First, everyone had fun. It was something Teddy could do alongside his cousins, even if he was a bit slower with climbing the inflatables or needed a helping hand here or there. It's rare to find a level playing field for cousins ranging from 5 to 9 with a wide range of capabilities, and this was perfect for them all to enjoy.

Second, this was the most I've seen Teddy's cousins play with him, wait for him and help him. I'm not sure if it's because they're getting a bit more mature or if it's because it was his birthday, but his two oldest cousins were constantly helping him and cheering for him. You can see in the video how they both help Teddy (who didn't always need the help they provided, but that was half the entertainment). 

Last, but not least, the amount of skills Teddy demonstrated shows how much he's grown in the past year. Progress with Teddy is slow but steady, so sometimes it's not obvious until you see him:

• Climb up bouncy, wiggly inflatables that are 20-feet high
• Focus his attention to keep climbing even when there are other children behind him
• Run around for 3 hours - the stamina and effort
• Play appropriately with peers (aside from when he was hungry and tried to eat someone else's food)

It was a perfect afternoon that left my children perfectly exhausted. We followed that up with dinner at Red Robin, where Teddy had a quivering bottom lip while they sang him Happy Birthday. But it was worth that minor trauma for the ice cream he shared with AJ. (It's so hard to gauge whether something will fascinate or terrify Teddy.)

Saturday was a mildly construction-themed birthday party filled with fun times with family and friends. Teddy loves my Grandpa's walker and hopped on immediately for a ride. Then he proceeded to make my Grandpa sit down and attempted to push him around. Teddy made himself at home in one of his best friend's laps to open his gifts and devoured his cake. A happy birthday indeed!

Here, Great Grandpa, I'll help you push this!

Race Weekends are the Best!

A year ago was Teddy's first race with myTEAM Triumph (MTT). Since then, he's crossed the finish line 5 times with angels by his side, including the Fox Cities 5k this weekend. Although he was still plenty distracted by the cheering crowds of people, it's amazing to me how much his walking has improved throughout the past year. He also has become well known among MTT where so many people know him. He can get away with just about anything because he has them wrapped around  his finger.

Case in point, there were three big motorcycles by the MTT group that immediately caught Teddy's eye. When I told him that they weren't his motorcycles and that he couldn't ride them, one manly biker said, "Oh, yes he can. He can ride on the gray one." So Teddy (and AJ) spent some quality time driving a motorcycle both before and after the race.

Teddy and AJ both enjoyed riding the chopper.

As much as I loved that, I loved even more that three rough and tough bikers were angels for a first-time captain who couldn't communicate verbally and needed assistance drinking her juice. They took amazing care of her and made sure she had an awesome time, including getting the local police department to flip on the lights and sirens for her. One of them said, "We may be fat and we may be slow, but we sure know how to have fun!" Those type of moments are what make MTT so special for everyone.

Team Teddy is all smiles at the Fox Cities 5K!

Another example of Teddy having people wrapped around his fingers it that not only did he get to explore the back of the MTT truck, which he loves, he also got to "drive" the truck. He honked the horn with his head when he was trying to press on the gas ... that child!

Teddy is ready to drive the MTT transport truck!

Teddy crossed the finish line with his Aunt Lindsay and Uncle John (who ran despite the heat and injuries). He also had an angel named Kevin, who jumped in at the last minute when more angels were needed. Kevin was a great sport keeping our pace and causing my brother to tell him there were support groups to help people like him ... because he's already ran marathons in 18 different states. One of the neat things was we discovered Kevin had been in a costume the night before at the kid's run ... and we have AJ's picture with him!
 

Kevin & AJ from the Kid's Run, which Teddy also did.

Kevin also was volunteering on the half marathon course the next day and told us he'd be wearing a T-rex costume. I guided Kevin across the group of runners, so my MTT team could get our picture with Kevin in costume. So Kevin was a key part of our weekend whether in or out of costume.

Kevin with Team Tom for the half marathon.

I always say I don't know how the next race will be able to top the previous with MTT because it seems like each race is so special in its own way. All I know is that I'm so grateful our family is a part of this organization!

Happy Birthday with an F-Bomb

We received Teddy's diagnosis when he was around 2 1/2 years old, after nearly two years of searching for answers from his first seizures. Along with that diagnosis, we received 2-3 medical research documents that were literally all that was known and documented about the disorder in the medical community. One of those, from the National Institute of Health, read:

Multiple congenital anomalies-hypotonia-seizures syndrome 1 (MCAHS1): An autosomal recessive disorder characterized by neonatal hypotonia, lack of psychomotor development, seizures, dysmorphic features, and variable congenital anomalies involving the cardiac, urinary, and gastrointestinal systems. Most affected individuals die before 3 years of age.

Talk about a kick in the stomach to read that when your child is 2 1/2. Our first questions back to our geneticist surrounded that life expectancy. This is the answer we received:

I do not think we have any reason to believe that this syndrome would have an impact on Teddy's life expectancy. He is overall doing extremely well, and his seizures are in good control with the Keppra. There are a very small number of patients who are known with this condition, but certainly a good number of them are older than age 3. We also do not know what the cause of death was in the individual/s who passed away at age 3 or what other complications/medical problems they had. I will investigate further and let you know if I learn anything further about this.

I'm grateful our genetic counselor provided this answer, which seemed both realistic and optimistic. I've heard horror stories of parents who were told their child would never live, walk, talk or reach a variety of milestones. We've never encountered that personally from any doctors, yet we had it printed in black and white. And, you know it must be true if you find it online ... especially when it was one of three valid search results for Teddy's diagnosis. (Yes, when Teddy was diagnosed, even Google had little to no answers for us. Seriously, three search results. When was the last time you searched for something Google couldn't find?)

Teddy takes the saying Your presence is present enough quite literally.

So, this is a rather lengthy way to say, "F-ck you!" to the medical research we received in November 2015. And happy 4th birthday to my favorite Teddy in the whole wide world.

Birthday Shopping is Hard ... Birthday Partnies are Fun

Birthday shopping for Teddy is one of my least favorite things to do. When I told my mom this, she laughed, until I explained. It's not that Teddy is hard to buy presents for because he enjoys a number of things and likes to play with toys. It's not even that there's nothing Teddy needs because he tears through clothes like no other, and most toys help him so much more than a typical kid with furthering his skills.

Happy birthday boy opening his presents.

It's that buying a birthday present serves as a stark reminder of where Teddy is not. Rarely would any of the toys appropriate for his actual age be appropriate or of interest to him. The things he would like are geared toward a much younger age group. Dave and I used respite last year to go searching for something for his birthday, and I ended up fighting back tears as we left Toys R Us with a single baby toy. This year I went to two toy stores after work, with a specific type of lacing toy in mind, so I thought it wouldn't be bad. I left the one store disappointed they didn't carry something like what I wanted. I left Toys R Us with a bit of extra moisture in my eyes but with a different toy that I thought Teddy would enjoy. Maybe I'm just allergic to Toys R Us.

Birthday shopping is the worst. It's because it's the time to buy presents for Teddy that correlates to his age. Don't get me wrong ... Teddy turning 4 is a whole positive, remarkable blog post in its own for later this week. Birthday shopping is what sucks.

But  his birthday party didn't. Because everyone else is able to focus on what I still struggle with when birthday shopping: the amazingly happy little boy who loves people. Our family and friends found wonderful presents for Teddy including blue jeans with elastic waistbands (to hold up to his wear and tear and allow him to help dress) and hilarious shirts (about not needing sleep or naps). He has a new assortment of toys that he (and AJ) will love.

It's not his fault he's dirty. He ate dirt cake. ;-)

Teddy spent his birthday party hanging out with all the people he loves, eating delicious food and opening (most) of his own presents with the assistance of his handy helper cousins. It was so neat to watch Teddy open most of his presents because that's something that's taken quite a while for the focus and ability to come together.

So the end to this ramblings is a heartfelt thank you to those who celebrated Teddy's birthday early with us (as we're heading on vacation on his birthday). You made his day special with your presence alone, but he'll also enjoy your presents much in the months to come.

So Proud

I'm not sure I could be more proud of both my boys than I was today.

AJ and Teddy were playing nicely together when all of the sudden AJ runs out of the room without an explanation. He comes back with a Kleenex and proceeds to maneuver around Teddy for 30 seconds trying to get all the snot out of Teddy's nose and then throws the Kleenex away. Seriously, how many 5-year-olds wipe their own noses, much less the noses of their little brothers? Especially without any prompting? (Don't worry. There were plenty of moments they weren't playing nicely together, too. I won't pretend that they always do.)

And that snotty-nosed Mister Teddy? Today he walked all the way to the end of our road and back, holding only one of my hands for support (and for me to keep him from exploring every open garage door). That's nearly 1/4 mile, and he didn't fall once. Although Teddy's been walking independently for more than 6 months, this is a significant milestone for me because this was a goal we had established for Teddy during the Birth to Three program. I was so excited that I e-mailed his team from that program, even though they no longer support him.

To top off that amazing walk, Teddy helped Dave open his birthday presents. For the first time I can recall, Teddy opened not one, but two gifts, by himself with absolutely no assistance. In the past, he's opened presents with some prompting and help getting things started and redirecting him when he loses focus. Tonight he deliberately opened two gifts.

So proud. Not much more to say than that.

Winter Hot Tub

This weekend we attended the 3rd birthday party of our niece and nephew. These are the cousins who have been the hardest to see with Teddy for a simple yet selfish reason. These cousins are 6 months younger than Teddy. Despite being premature, these spunky twins quickly began to run laps around Teddy in terms of milestones (literally). It's gotten easier as the years have continued, but those early months and years were so hard to watch them do things easily while Teddy tried so hard and still couldn't master those skills.

Anyways, enough of a troubled trip down memory lane. The point of this post is that we spent a few very fun hours at a hotel waterpark as part of their birthday party before heading back to their house for cake, ice cream and playing with other kids' toys, which are always way more fun than the endless toys we already own in our house.

All 7 cousins had so much fun playing in the water. There was a kiddie area that was perfect for entertaining most of the kids, complete with a little slide. Teddy loved the slide but collapsed back into the slide instead of sitting upright. That meant that every time he went down with his mouth wide open, he had a mouthful of water in his huge smile when you pulled him out. I just started tipping him upside down to drain out the water before plopping him back on his feet for the next round.

My favorite part, though, was the indoor/outdoor hot tub. It was about 15 degrees outside, but it was so comfortable and refreshing to be in the hot tub outside. We took all the cousins outside and even managed a quick family photo of the 4 of us. Nothing quite like being outside in your swimsuit with snow on the ground.

Thanks to my sis-in-law for standing outside barefoot in the snow to take this picture.

Bay Beach Birthday Fun

Last week on Teddy's birthday, Dave took the afternoon off to spend the day together as a family. Even though it was nearly 90 degrees, we headed to Bay Beach Amusement Park in Green Bay. It's a place with all sorts of carnival rides, and tickets are only a quarter. Granted, some rides cost 4 tickets, but the most you pay for any one ride is $1. So for less than $30, we spent a couple hours going on rides and cooling off with a combination of ice cream, root beer floats and frozen lemonades.

We had missed the Ferris wheel the one time we went last year because a storm came while we were in line. I took both boys on the the Ferris wheel and managed to keep Teddy in the chair the entire time. He really enjoyed it, aside from being a bit antsy while they loaded the entire wheel since we were the first ones on. As for me, I got to experience why my mom didn't liked the Ferris wheel. I never thought a Ferris wheel would make me queasy, but apparently my equilibrium likes to be messed with less as I gracefully age. AJ loved it so much that he begged to go on a second time, so Dave took him for a spin while Teddy and I hit up the carousel again.

I'm sure that safety bar was plenty delicious ... hey, it kept him in the car.

I think it's a fair statement to say that Teddy believes the carousel is one of the greatest things on the entire planet (along with the slides at the water park). He gets so excited when he sees it and puts some pep in his step as he's walking toward it. He does a great job holding onto the handle, unless he sits on the antelope. Then he holds onto the antlers because ... well, why not? Teddy rode the carousel at least 5 times and enjoyed it as much the last time as the first time.

My favorite picture of the day.

We also checked out a few other rides, like a big ship that we all rode together, and a train that loops through the park. Teddy also really liked the giant slide that required me to climb 3 stories worth of stairs while lugging him and a burlap sack. (I'm not complaining about the burlap. That wasn't the heavy part.) It was worth it for his giggles on the way down.

Birthday boy smiles.

It was an absolutely perfect afternoon as a family, making memories and celebrating the joys of childhood fun. I thought it was cool that two of the rides Teddy wouldn't have been able to do earlier in the summer because you had to be at least 3 to ride. Wait ... had we went earlier, then I wouldn't have had to carry him up three stories of stairs ...

And if you're wondering, his brand new white shirt was no longer white by the time we ended the day, especially not after cake when we stopped by his grandparents' house for supper while we were there.

I shall smear this everywhere. Cake in my hair? Don't care.

Happy 3rd Birthday Teddy!

Three years ago Teddy made his entrance into this world, taking everyone by surprise a bit although his arrival was completely expected. He simply did things on his terms, and that hasn't changed at all in the past few years.

Teddy's birthday brings mixed emotions for me. I almost ended up in tears walking the toy aisles because the toys that would entertain Teddy aren't the ones marked 3-5 years of age. I'm reminded, not that I ever forget, of how far he lags behind milestones ... and how he may never hit some milestones ... and how much I would love to hear him say, "I love you."

Instead, I know that for now, his laughs, smiles, arm flails, squeezes and tackles are his way of telling me, "I love you." And by that measure, Teddy tells me, "I love you" many times every day.

As much as that sadness lingers for what isn't and what may not be, birthdays also serve as a reminder of how much Teddy has accomplished. Two years ago today, Teddy got into a seated position by himself for the first time (in our tent at Crater Lake National Park after a horrid night's lack of sleep ... not that I still remember that). Last year, we caught him clapping for one of the first times ever while taking his 2-year pictures. He used his gait trainer at his birthday party last year for close to 30 minutes, which was a record for him, and a long time for everyone to dodge him because he had no concept of steering and crashed into everything and everyone.

In the past year, Teddy's babbled. He's learned to give high fives, although we need to keep working on that to keep it fresh in his mind. He's given me my first true, intentional hug. He understands the command, "load up," and willingly grabs on for a piggyback ride (although we're still working on holding on the whole time). He's able to climb on and hold on while I get him tucked into a back carrier. He's climbed everything that could possibly be climbed. He can walk fairly long distances holding two hands for assistance. He can walk short distances holding one hand for assistance. He can walk 10 feet by himself. He can balance standing for nearly 5 seconds. He can stack rings. He plays the "stinky feet" game. He's taught us how to understand more of his preferences when he communicates his wants.

This is typical Teddy, climbing and smiling.

When we got Teddy's diagnosis last November, we were shocked to read in the literature provided to us after we left the geneticist's office that, "Most affected individuals die before 3 years of age." We wouldn't share the name of his syndrome with our parents until we received clarification from our geneticist that there was no reason to believe Teddy's health or life was in immediate jeopardy.

In the past 8 months, we've connected with 10 other families who have children with the same diagnosis as Teddy, which has been a tremendous blessing. We've mourned with those families as two children passed away this year well before the age of 3. And we still remember their losses.

But today we celebrate Teddy. We celebrate that he's defied the medical literature, and hopefully his story will someday be included to give other families a better prognosis. We celebrate all that he's accomplished and look forward to another amazing and fun-filled year with him.

Happy 3rd birthday Teddy!