This week was parent-teacher conferences. I always look forward to meeting the kid's teachers and seeing how they are doing. It's always fun hearing about the boys and how they work, listen, and act at school. I guess for me it is usually my "you must be doing something right, because your son is a great kid" moment. I already know that of course...but it is still rewarding to hear it just the same. And this year was no different.
For the first time ever I received an email from a teacher saying..."I have been teaching for almost 30 yrs, thousands of students have come through my classroom, and Brennen is one of the few that has stood out from day one. He is a very impressive young man." At his parent-teacher night every single teacher told me the same thing..."I just love Brennen. He is such a pleasure to have in class." His audio visual teacher said..."That kid is just fun to watch...he has such a great sense of humor." I couldn't agree more.
Kaden and Grayson teachers told me pretty much the same. Grayson is a
hard worker, strong leader and always does his best. Kaden is a team player, awesome friend to others, responsible, and works hard to get great grades. Both of them received awards for being such great students. Grayson's was for Action. Kaden's was for Hard Work.
I am not sure why, but I cried as I read the email about Brennen. I cried again as I watch Grayson
and Kaden get their awards. I think am so
emotional because the truth is...
God blessed me with each of them. They came the way they are. I wish I could take credit...but I can't. I am
so grateful for my four little men. For the
love and examples they are to me. And for the opportunity to be called their mother. It really is an honor...and I will always wear it proudly!
I actually have four young super-heros in my house. Who are constantly amazing me with their powers! All of them have the power to destroy things with flying objects, create messes in a flash and propel all kinds of sticky stuff to extremely hard to reach places! They also try to leap from dangerous heights, swing off of tall buildings, and insisted that each other can fly. (Thanks to the help of an older brother both Grayson and Ian have accomplished this feat!)
But- today I want to write about my Superhero who can make all parts of his body swell. Kaden has known about his powers for sometime now...and we actually found out what it is that gives him his powers over two years ago. But, for the first time ever....we finally had the opportunity to meet others just like him!
Kaden and I went to Las Vegas a few weeks ago for the HAEA national convention! (Hereditary Angioedema Association)! It was for adults and kids who suffer for from this rare disease. We spent Friday- Sunday talking to other kids, moms, dads, and strangers who knew just what it is like to feel like Kaden. There were many specialists and doctors there, who have devoted their time to learn all they can about this disease and help those who suffer from it. There were drug companies there who have spent millions of dollars to come up with a medication to help prevent and reverse attacks!
The organization is only 10 yrs old....but it has made been a vital part of finally finding medications, support, and education for HAE! We learned that up to a few yrs ago there was nothing that could replace the protein that Kaden and others like him are missing. But- since then there have been 4 new products that have been FDA approved. We also learn that the Department of Defense has finally added HAE to the 22 rare diseases that are elligable for government grants to work on new medications and hopefully one day find a cure!
However...the BEST PART was watching Kaden hang out with kids who know what it is like to have a puffy hand or foot, a severe tummy attack, facial swellings and even have your throat close. They talked about their secrets that help them when they get their bi-weekly IV treatments. (That's how we learned about the numbing cream!) But- mostly they were just kids! They watched movies, made art projects, played games, went swimming and just talked! Kaden couldn't stop smiling. And to be honest, neither could I. It felt so good to talk with other moms and older patients and have them answer questions and share their experiences. I am so grateful for all of those who have pioneered the efforts on changing the lives of those who have this disease.
Here are a few photos of our trip to "sin city" and Kaden with his new "swell friends"!
Mom and Kaden hitting the road!
Las Vegas here we come!
The map where everyone put a pin in to show where they were from!
There were 4 pins right by us! Kaden loved the map!
Opening night social....Kaden kept saying "These people swell too!"
Kaden's pen pal Keala from Florida!
They finally talked in person!
They had a carnival for the kids!
Kaden and his new friend Brandon!
Kaden and Noah...he from New Jersey!
Kaden and the Jordan kids!
They are the ones who told us about the numbing cream!
Brandon and Kaden at the pool!
I even had a college friend who lives in Vegas came to say hi! Thanks Liz!
Yep...I think he had a great time! Can't wait for the next one!
Today has been a little green! I can't figure out why my boys love this holiday so much...maybe it is because two of them look an awful lot like this guy....
Or maybe it is because of the endless amounts of green food coloring
that can be found in all of their meals....
Their breakfast looked something like this...
and they found these green goodies in their lunches...
with a little rainbow bag of fish!
and their dinner look liked this...a little scary I know...but they ate it!!!
But, I hope the real reason they love St. Patrick's Day is because they realize how LUCKY they are to have such AWESOME brothers...and parents too!
se...but it is still rewarding to hear it just the same. And this year was no different.
emotional because the truth is...
