One of the wonderful traditions in my husband's family is a Christmas party where the majority of his mom's family gathers at a hall. They need to rent a hall because his mom is one of 13 children, so there's lots of aunts and uncles, more cousins and now more second cousins than most in attendance can name. All the little children tend to gravitate to the gymnasium, which I swear they barely heat in winter, to run and play.
Teddy loves the bleachers in the gym, climbing up and down them, making others sit next to him and generally spending a lot of his time there. That is great, until he notices the stage, which is supposedly off limits. Other children go on the stage, but we do our best to keep our children off to avoid getting into trouble, particularly Teddy. Once he notices the stage and how fun it appears to be, it's sometimes a physical struggle and tears to keep him off both sets of steps, one on either side of the stage.
This year, however, it became a game that was great fun for him and a pretty darn good speed workout for me. He'd take off for the stairs, and I'd dash past him and sit on the stairs. He'd start giggling and turn back toward the other side. I'd beeline past him, sit on the stairs and he'd keep giggling. We continued this for quite some time, with Teddy laughing so hard that he fell over ... twice.
For whatever reason, it was hilarious to him, and I couldn't help but laugh as he collapsed into giggles. We both had a great time instead of a great fight over whether he could go up the stairs, which made for a great afternoon (although I was rather tired by the end of the party).
It's hard not to attend these parties and think back to the first years with Teddy, where it was so hard because we couldn't stop comparing him to the other children his age (or younger) who were far ahead of him developmentally. Time has helped us to appreciate the joy in what he can do, which is an awful lot. This little boy was running, giggling and loving life. And I was able to be present (physically and mentally) to soak up the magic.
Showing posts with label party. Show all posts
Showing posts with label party. Show all posts
Sunday, December 15, 2019
Wednesday, July 31, 2019
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.
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.
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.
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| The birthday boy doing one of his favorite things. |
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.
Saturday, March 2, 2019
King of the Party
Teddy crashed a Mardi Gras party at my work today. OK, he was invited because my co-worker wanted me to come take pictures. She offered to help wrangle Teddy (my word choice, not hers) to make it easier for me to say yes. This party was intended for the clients who we support, so Teddy was the only young child there. That didn't stop him from making friends and having a fantastic time. He alternated between wearing the awesome hat my co-worker got for him that was "Teddy proof" and trying to make other people wear it. (The hat was remarkably Teddy proof. He only lost one bell the entire afternoon.)
Teddy though the table of beads was intended for his personal shopping. He walked away with several necklaces, most of which ended up around my neck by the time we left.
He loved that there was music and a designated dance floor. He didn't know whether to dance or just stare in awe, though, when people were blowing the party horns. It's so incredible to see him with his version of dance moves. Trust me, mine aren't much more sophisticated. It's not just the happiness and joy that music and movement bring him, but it's the coordination and all those years of therapy that enable him to do something like this that he likes with other people. He can actively participate instead of hopping around the floor wishing he could do what others are doing.
All in all, it was a fantastic afternoon. I got my bucket filled from seeing the incredible effort our staff put into this party and the enjoyment of all those who attended. Teddy was welcomed with open arms and was such a good listener (although he preferred my co-worker to me because she let him explore more than I would have).
Teddy finished the afternoon by pushing the button to open the doors for people who were leaving. That was a compromise to him pushing the button and running outside away from me, so that's a win-win.
I did make Teddy promise not to tell AJ how much fun the party was since I downplayed it because I only wanted one child maximum to allow me to be somewhat useful. I'm confident Teddy won't say a word, and he brought home tons of beads for AJ.
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| Such a cool hat! |
Teddy though the table of beads was intended for his personal shopping. He walked away with several necklaces, most of which ended up around my neck by the time we left.
He loved that there was music and a designated dance floor. He didn't know whether to dance or just stare in awe, though, when people were blowing the party horns. It's so incredible to see him with his version of dance moves. Trust me, mine aren't much more sophisticated. It's not just the happiness and joy that music and movement bring him, but it's the coordination and all those years of therapy that enable him to do something like this that he likes with other people. He can actively participate instead of hopping around the floor wishing he could do what others are doing.
All in all, it was a fantastic afternoon. I got my bucket filled from seeing the incredible effort our staff put into this party and the enjoyment of all those who attended. Teddy was welcomed with open arms and was such a good listener (although he preferred my co-worker to me because she let him explore more than I would have).
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| Teddy modeling in the photo booth. |
I did make Teddy promise not to tell AJ how much fun the party was since I downplayed it because I only wanted one child maximum to allow me to be somewhat useful. I'm confident Teddy won't say a word, and he brought home tons of beads for AJ.
Monday, August 29, 2016
Hey Mister DJ!
Teddy discovered his vocation this weekend at a wedding reception. He is destined to be a DJ. Or to stare and smile at DJs ... repeatedly ... at least 20 times in a night.
We attended a wedding reception for Dave's cousin this weekend, and both our boys loved the "dance party" as AJ called it. AJ danced with mostly with his cousins, including a slow dance with one of his cousins, which was adorable with the slow awkward side shuffle step that his dad (and honestly, I) still use.
Teddy was in his element from the moment he was released from his Kimba Kruze after dinner. He loves being around people, so having 150 people in a room is pretty fun for him. He put on many steps, leading whomever around the dance floor, weaving in and out of people. We tried to get him to dance a bit here and there, but his version of dancing was racing across the floor.
He kept circling back to the DJ booth. He'd stop, stare and smile at the DJ. Then I'd lead him back on the dance floor. He'd go past the front of the DJ booth, turn it at the other side, stop, stare and smile at the DJ. Then I'd lead him back further onto the dance floor, and we'd make a lap or two before visiting the DJ again.
I was slightly worried when the dancing began with the strobe lights and flashing colored lights, even though nothing like that has ever been an issue for Teddy with seizures. Thankfully, my biggest worry ended up keeping up with him as he explored everywhere.
The wedding was way more fun than I anticipated (as I had expected it to be a lot of work to manage Teddy). I knew AJ would have a blast with his cousins, as he'd been practicing his dance moves for a couple weeks. (He also panicked that morning when he couldn't find his clip-on tie because he "wouldn't look snazzy enough." Don't worry, we found it, so he looked the appropriate amount of snazzy.) AJ even ordered his first drink at the bar by himself - water with a sword of cherries. I hadn't realized how much fun I'd have watching Teddy and AJ in their element.
Congrats Tracey and Eric! Thanks for a great evening.
We attended a wedding reception for Dave's cousin this weekend, and both our boys loved the "dance party" as AJ called it. AJ danced with mostly with his cousins, including a slow dance with one of his cousins, which was adorable with the slow awkward side shuffle step that his dad (and honestly, I) still use.
Teddy was in his element from the moment he was released from his Kimba Kruze after dinner. He loves being around people, so having 150 people in a room is pretty fun for him. He put on many steps, leading whomever around the dance floor, weaving in and out of people. We tried to get him to dance a bit here and there, but his version of dancing was racing across the floor.
He kept circling back to the DJ booth. He'd stop, stare and smile at the DJ. Then I'd lead him back on the dance floor. He'd go past the front of the DJ booth, turn it at the other side, stop, stare and smile at the DJ. Then I'd lead him back further onto the dance floor, and we'd make a lap or two before visiting the DJ again.
I was slightly worried when the dancing began with the strobe lights and flashing colored lights, even though nothing like that has ever been an issue for Teddy with seizures. Thankfully, my biggest worry ended up keeping up with him as he explored everywhere.
The wedding was way more fun than I anticipated (as I had expected it to be a lot of work to manage Teddy). I knew AJ would have a blast with his cousins, as he'd been practicing his dance moves for a couple weeks. (He also panicked that morning when he couldn't find his clip-on tie because he "wouldn't look snazzy enough." Don't worry, we found it, so he looked the appropriate amount of snazzy.) AJ even ordered his first drink at the bar by himself - water with a sword of cherries. I hadn't realized how much fun I'd have watching Teddy and AJ in their element.
Congrats Tracey and Eric! Thanks for a great evening.
Monday, July 18, 2016
Party Like It's Your Birthday
We celebrated Teddy's birthday this past weekend, although his birthday isn't until this Thursday. Since he giggles and laughs whenever we play the Purple People Eater song, we did a purple people eater party. Last year I started the tradition of baking sugar cookies. I like that because then we can give them to Teddy's therapists and team members, so they can join in celebrating with us.
Of course, we still need to have cake. The monster cake had gold wings (to fly obviously) and a golden horn. Let's just say that Teddy had fun devouring his horn once I filled it with ice cream. He did a great job isolating his pointer finger in the bottom of the cone once he ate the bottom.
There's a funny story about our purple people eater toy, which hadn't been working for months despite new batteries. I asked my brother, who is a computer engineer, if he could fix it. So he ripped it apart, cut wires and the whole nine yards. Turns out one of those new batteries didn't work, which was the whole problem. So after soldering the wires back together, the purple people eater worked just fine. Oops. Guess next time I'll try two new sets of batteries just to be sure.
Teddy's always been fond of food, and Dave caught him looking quite serious while destroying his cake and ice cream horn. He managed to stay awake until everyone left (aside from my family who were staying longer).
I feel like this is the first birthday where he's really been interested in ripping open presents. He did pretty good with the first present and then was completely distracted. (Why do I need to open anything else? This is awesome!!!) Fortunately, he has an older brother who was more than willing to help.
Teddy loved playing with all the family and friends. Whether it was joining the water balloon fun outside and playing with the hose or wrestling inside, he had a great time at his party. Thanks to everyone who was able to join us celebrating Teddy's birthday.
P.S. You can expect a birthday post later this week as well.
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| Monster cookies are easy to frost because they can look messy. |
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| Silly purple people eater ... we'll eat you! |
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| Purple smile. |
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| Dad, I'm busy eating right now. |
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| Opening presents is a milestone for Teddy. |
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| It's my party. I'll tackle you if I want to. |
Wednesday, June 22, 2016
Party Like You've Been Seizure Free for a Year
In case you thought I was kidding about celebrating today as the anniversary of one year since Teddy's last seizures, I wasn't. We really had a party for him tonight.
It was just a small gathering with my friend and her daughters, which was perfect. Her younger daughter plays so well with AJ, and her older daughter adores Teddy. We made homemade pizza, ate delicious cupcakes and simply spent time together.
We also had balloons, which Teddy loves, party favors and decorations. Like I said, it's a day to celebrate, and celebrate we did.
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| One happy boy with his cupcake! |
It was just a small gathering with my friend and her daughters, which was perfect. Her younger daughter plays so well with AJ, and her older daughter adores Teddy. We made homemade pizza, ate delicious cupcakes and simply spent time together.
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| Dollar Tree is the best for simple parties. |
We also had balloons, which Teddy loves, party favors and decorations. Like I said, it's a day to celebrate, and celebrate we did.
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| Word of warning: never buy these whistles. They are the definition of annoying. |
Today We Celebrate
Today is a good day. An amazing day. A day to celebrate.
Today marks the one year anniversary of Teddy being seizure free. Teddy's last seizures were on Father's Day on June 21, 2015. Here's my Facebook memory from a year ago: Happy father's days to all the dads, especially Mike Kassie and Dave Blondheim. I'd be lost without you guys. On a positive note, AJ drew his first picture of a person tonight-a picture of Teddy to make him feel better after he had another seizure. Right now Teddy is sleeping with ice packs under him, trying to keep the fever from spiking again and causing more seizures. Obviously Keppra isn't going to stop him from ever seizing again, not that I really thought that but it was nice to pretend.
Some children with this diagnosis have frequent, at times uncontrollable, seizures. We've been extremely fortunate that Teddy's only had seizures every couple months or so, starting when he was 5 1/2 months old. Don't be fooled by the word "only." That word describes the frequency, not the fact that each seizure episode ripped our lives apart, scared us beyond belief, at times entailed an ER trip and took a few weeks each time to ease back into normalcy. Although I'm grateful for the relative rarity of Teddy's seizures compared to what could be, in ways I think it made each episode harder because we got up our hopes that he wouldn't have more ... that he had outgrown them ... that we were safe not to worry constantly ... and then the next episode would happen and shake not only Teddy but our entire world.
We put Teddy on Keppra in May 2015 after switching neurologists to a wonderful doctor who engages Teddy and asks us each visit, "What is on your heart?" (Beyond that, rumor is he's pretty darn smart, too.) It's not that our former neurologist didn't recommend Keppra, but we never got our questions answered to the extent that we felt comfortable putting Teddy on an anti-seizure medication with potentially serious side effects. The Father's Day episode one year ago were the first, and only to date, seizures since putting Teddy on Keppra. (It was one of those two-for-one seizure specials he sometimes has. Technically his last seizure was at 1 a.m. June 22, which is why this post will go up at 2 a.m. June 22.) After that, we increased his Keppra for about a month until we couldn't stand how miserable he was. We decreased his dose just in time to enjoy Teddy's true personality again for a family vacation. Since then, we've tweaked his Keppra twice to accommodate his growth and keep him in the therapeutic range of the medicine.
But that's enough medical history. Today we celebrate.
We ignore how much more the next seizure will shake our world because we've gotten so comfortable. We don't get our hopes up that in another year Teddy might be able to wean off anti-seizure medication. We don't relive the past. We don't worry about the future. There's time enough for that on other days.
Today we eat delicious peanut butter cheesecake brownie cupcakes. (Teddy told me that's what he wanted. I read his mind. Or my mind.) Today we make homemade pizza with friends. Today we play with balloons. Today we celebrate and are grateful for this milestone.
Today marks the one year anniversary of Teddy being seizure free. Teddy's last seizures were on Father's Day on June 21, 2015. Here's my Facebook memory from a year ago: Happy father's days to all the dads, especially Mike Kassie and Dave Blondheim. I'd be lost without you guys. On a positive note, AJ drew his first picture of a person tonight-a picture of Teddy to make him feel better after he had another seizure. Right now Teddy is sleeping with ice packs under him, trying to keep the fever from spiking again and causing more seizures. Obviously Keppra isn't going to stop him from ever seizing again, not that I really thought that but it was nice to pretend.
Some children with this diagnosis have frequent, at times uncontrollable, seizures. We've been extremely fortunate that Teddy's only had seizures every couple months or so, starting when he was 5 1/2 months old. Don't be fooled by the word "only." That word describes the frequency, not the fact that each seizure episode ripped our lives apart, scared us beyond belief, at times entailed an ER trip and took a few weeks each time to ease back into normalcy. Although I'm grateful for the relative rarity of Teddy's seizures compared to what could be, in ways I think it made each episode harder because we got up our hopes that he wouldn't have more ... that he had outgrown them ... that we were safe not to worry constantly ... and then the next episode would happen and shake not only Teddy but our entire world.
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| This was our first ER trip for seizures on New Year's Day 2014. |
We put Teddy on Keppra in May 2015 after switching neurologists to a wonderful doctor who engages Teddy and asks us each visit, "What is on your heart?" (Beyond that, rumor is he's pretty darn smart, too.) It's not that our former neurologist didn't recommend Keppra, but we never got our questions answered to the extent that we felt comfortable putting Teddy on an anti-seizure medication with potentially serious side effects. The Father's Day episode one year ago were the first, and only to date, seizures since putting Teddy on Keppra. (It was one of those two-for-one seizure specials he sometimes has. Technically his last seizure was at 1 a.m. June 22, which is why this post will go up at 2 a.m. June 22.) After that, we increased his Keppra for about a month until we couldn't stand how miserable he was. We decreased his dose just in time to enjoy Teddy's true personality again for a family vacation. Since then, we've tweaked his Keppra twice to accommodate his growth and keep him in the therapeutic range of the medicine.
But that's enough medical history. Today we celebrate.
We ignore how much more the next seizure will shake our world because we've gotten so comfortable. We don't get our hopes up that in another year Teddy might be able to wean off anti-seizure medication. We don't relive the past. We don't worry about the future. There's time enough for that on other days.
Today we eat delicious peanut butter cheesecake brownie cupcakes. (Teddy told me that's what he wanted. I read his mind. Or my mind.) Today we make homemade pizza with friends. Today we play with balloons. Today we celebrate and are grateful for this milestone.
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