Tuesday, September 5, 2017

Buddy Walk 2017

CHOP Buddy Walk is less than a month away! Porter's Peeps will be back in action at Villanova University, ready to celebrate our best Homie with an Extra Chromie! We love reminiscing over memories of Buddy Walks past and are looking forward to many more Buddy Walks in the future.
How can you help? Join Our Team or Donate to Porter Thanks so much for your continued support! 

Off to Kindergarten

Way back in June, Porter graduated from Pre-K. This morning, we'll send him off to kindergarten. As I've been told, I've spent his whole life advocating for this. I'm so thankful God gave him Penny, a big sister who is happy to be by his side on his first day, to be sure that he's headed in the right direction. And, equally thankful that God gave him Paxton, a little brother who definitely looks up to him and is excited to see him get on that big yellow bus this morning.

Of course I have many fears sending him off to school. I'm nervous for the bus ride- will he follow the rules and cooperate? I'm sending him off 90% potty trained, not 100%. While he can and certainly does communicate, he is still working on telling us exactly what he wants and needs. Will they understand him at school? I know he will be in good hands, but they won't be my hands.

For the stay-at-home mamas, sending kids off to kindergarten must have some intense detachment feelings that come along with it. But, for a working/daycare mama, that doesn't exist. I know that he is capable of following school routines. He's been at the same daycare his entire life, so today will bring many changes for him. I hope that he'll be excited and adapt. There will be many changes for me and I hope that I'll be excited and adapt, too! So far his teachers have been wonderfully responsive to the information we've provided. I'm excited to meet his full team and get to know more about how they'll work together to help Porter grow and learn. I'm excited to meet the kids in his classes. Our district has 1/2 day K and he'll spend the afternoon with 21 other friends in a typical classroom. In the morning, he'll spend the day in a special education room where he'll get to focus on improving his communication skills. This will build more of the skills he needs to continue on in regular ed and succeed! I'm not worried about him learning facts- he picked up colors, numbers, shapes and the alphabet at age 2. He's starting to read and is fabulous at memorizing sight words. He loves books! He's already found a comfy spot in the school library and is going to make himself at home there. I'm more worried about independence. About elopement in a school without classroom doors or a fence around the playground. About social norms. Because he spent infancy with many of the kids in his pre-K class, the other parents in his class grew up with him too. He had a village. And today, he's got to start building a new village. He's got some friends and neighbors who will be there to help. And he's already sneaking hugs from his new speech therapist and flashing his trademark grin to work his way under her little finger. And, he's got Penny by his side. I know he'll be fine. And that soon our village will grow by leaps and bounds.

This time of change also makes me reflect on motherhood. Motherhood looks nothing like I imagined it looking. I never imagined being a working mom. I never imagined how hard it would be to cook dinner while three ravenous children weave between your legs, begging for the food to be done...how difficult it would be to get them to eat nutritious meals. I never imagined the juggle. I never imagined that it would take such a village, but am so thankful for the village that's been there by our side every step of the way. There are so many people who've played a role in getting Porter and us to where we are today. To the parents and rockstars in MCDSIG/NDSS/DSDN and our world-wide Down syndrome community, thank you! To the doctors and entire CHOP community, thank you! To our therapy team, who taught us so much more than we ever imagined we'd learn, thank you! To our families, our daycare village, our friends and neighbors, thank you! We wouldn't be where we are today without all of you. So, Mr. P, get out there and show them that you are capable. Show them that inclusion is important. Show them that we should have big goals for your future. Show them all of it and more. And to the mom from DSDN's Rockin Mom group who created a template for us to use, thanks for helping us put our vision to paper. Here's Porter as he heads off into the kindergarten world today. We're so proud of him and all the people who've played a role in getting us to today! Love you Bubby!




Saturday, March 4, 2017

$21 for 3/21

Help our local Montgomery County Down Syndrome Interest Group (MCDSIG) grow their mission by donating $21 for 3/21 with Porter!
$21 for 3/21 Porter loves MCDSIG!
Our local MCDSIG has been essential to our family's success. From day one, we were connected to parents who have helped guide us int he right direction, always just a phone call or message away with support. These families have connected us with therapists, helped us with issues and have helped us feel supported in an amazing community. Penny and Porter have made some amazing friends within our community and I'm so excited for Pax to do the same as he grows!

Thanksgiving in AZ

We spent Thanksgiving in Arizona with family. Grammy and Pa moved to Arizona right around the time we moved this past summer and we were so excited to finally make it out to see their new digs. Paxton enjoyed his first flight, we had a quick layover in St. Louis, which made the trip feel like home for RC and we got to spend quality time with people we love! The sunrises were amazing! We made lemonade, baked and ate our fill of turkey. We had amazing adventures with the whole family! So far behind, so here's a picture recap of the fun:
 


 




  








Friday, December 23, 2016

Catching up...

 It's been way too long since I've actually sat down to write. So here's a quick update...CHOP Buddy Walk was amazing! The kids had a blast, the team was amazingly supportive and Porter's Peeps raised over $11,000 for the Trisomy 21 Program at CHOP. THANK YOU to our village who came out to make this happen!  

 
We spent much of October outside, as we were blessed with a mild fall. We played basketball, had lots of fall festival fun, cheered on Penny as she cheered during football games, enjoyed playground time, celebrated daddy's birthday and so much more! 
For Halloween, we had fun dressing up as the crew from Doc McStuffins. The kids LOVE this Disney Channel show and so do I! The "Time for your Checkup" song has definitely made doctor appointments easier for Porter and Pax to understand.  
Porter started horseback riding. He loves riding "my pony," Gaelan. Therapeutic riding is such a cool therapy...he definitely enjoys it!
 
 We celebrated Nana's birthday with our cousins.
 This crew is definitely fun!
And, before the month was over, Porter took a pause and spent three weeks in a full leg cast. We're still not certain of what the injury was (we know he hurt his leg wrestling with Pax), but the orthopedic doc was on point...three weeks in a cast seemed to do the trick.
We traveled to Phoenix to visit the Thompsons for Thanksgiving...I'll post about that fun soon. And now, we find ourselves at the end of December. We've been reading a Christmas book a day as in years past. We've been chasing our elves around the house. But we've been on the go  much more than ever before. The days pass quickly. These kids grow in the blink of an eye. They  make life interesting and fun and messy and perfect all at the same time. 

I hope to post more about our many adventures soon. Happy Holidays!

Saturday, October 1, 2016

NYC and Lehigh Valley Buddy Walks 2016

In September, we headed to NYC for the NDSS #NYCBuddyWalk 
This was our 2nd trip to NYC for Buddy Walk (we went back in 2014), and Porter's 2nd time on the big screen in Times Square. Thanks to Erik and Kelly, Devan and Porter's love was on display for all to see.
We had a great time in Times Square and had an adventurous day in the city...the kids saw some characters in Times Square. We got to ride a school bus through the city, which is an experience in an of itself...our trip from Central Park back to Times Square included a stop on a narrow street due to a disabled vehicle that our bus driver and a few other Buddy Walkers from the bus in front of us literally picked up and moved out of the way so we could continue. 
We walked in Central Park. Porter, Penny and Nana had a blast! Many thanks to Nana for making the trip with us...I couldn't have done it on my own!
The next weekend, we Buddy Walked in the Lehigh Valley with Devan's Designer Genes. 
These two! They're game changers for sure! Love seeing them together!
Again, Nana joined us to make the day possible, while Daddy stayed home with croupy Pax.
This year, our buddy Evan also joined the team. Porter was so happy to see two of his favorite people in the same place. The Lehigh Valley Buddy Walk has so many fun things for the kiddos to do! They always have an amazing day at the Velodrome!  The sun was shining and spirits were high as we spent a day with some amazing friends celebrating some amazing kiddos!
 
Tomorrow, we'll Buddy Walk for CHOP at Villanova. We can't wait! Praying for good weather and safe travels for all our family and friends who will make the trip to join us. It's our most favorite day of the year! 

Thursday, September 1, 2016

Calling our Peeps!

We're one month away from CHOP Buddy Walk. We'd love for you to join our team!
Visit Porter's Buddy Walk Page for more information!
These two hope to see you there!
Thank you so much to everyone who has and continues to support Porter's Peeps in the CHOP Buddy Walk!

The Down Syndrome Diary

I finished my entry for the Down Syndrome Diary in July. It's a project started by a mom from the Detroit area who has a goal of providing more than just medical information to those who receive a Down syndrome diagnosis. By sharing our stories, the hope is that others will gain knowledge and find support through our community. The original diary has been to ten countries and is close to complete. There are six new diaries making the rounds and I had the opportunity to share our story in one of those!
 
  
Here is what I wrote:







Thanks always for following our story and supporting Porter! We are so thankful for our village!