PKS Conference

Where to start...
A weekend full of laughing, crying, fulfillment, disappointment, gratitude, LOVE.

I sat in the room where we were eating dinner Thursday night and was just speechless.  I looked down at Patrick and around at his PKS friends and thought about how all of this preparation, traveling, anticipation, love and excitement in the room, was all for them.   All of these people were here for these amazing, PKS kids.  The thought was overwhelming, calming and fulfilling.

Our weekend didn't go completely as planned, but was still a life changing and wonderful experience for all of us.  The hotel was very nice and we were all soooooo excited to be there.  This was our first real vacation since Jameson was born.   He had never stayed in a hotel before, and he was more then excited to get into our room(which was gigantic!!), and run around. 

 Cuddles in the hotel bed with my sissy :)

 

 First time destroying a hotel room....

 didn't take long

 

Taking over the beds

 



Thursday morning we went to the Field Museum, with our friend Petro.  Fun times!  I'm not sure if Petro will want children now(sorry Erin), after walking through a museum with the Kelley's, but it was fun none the less, and great to see him!

 Thanks for joining us Petro :)

I love this kid....

 



Thursday night was the first dinner and we got to see everyone together for the first time.   The only way I can describe this weekend is that it was like speed dating.  You're wandering through a room, trying to talk to as many families as you can.  You have wonderful, meaningful conversations.  You realize that every family you talk to is a perfect fit.  You connect instantly.  Then you realize there are so many others that you want to meet and talk to.  You may get to them, or you may not, because you find yourself lost in the moment with the family in front of you.  It can be overwhelming and amazing at the same time.

Anyway you look at it, you're connecting with people who you share a very rare, unique bond with. One you cannot describe to anyone other than the people in that room. 

 

 Patrick flirting with Mel.  Such a sweet girl :)

Was great to meet her and her Mom Tiffany!

O..M..G...like stop taking pictures of me Dad!

 

 

We ate dinner with Una and her Mom, Kerry and her brother.  Great company and Una knocked my socks off.  What a girl!  She was just reaching out and grabbing her food and feeding herself.  So exciting to see!!

I wish I could go through and tell you all about every single child and family we met or even the one's we didn't have a chance to meet.  They all deserve their own write up.  I was amazed by every single child.  Each one, on their own timeline.  Each one, proving doctors wrong.  Each one, just as adorable and sweet as the previous.   Learning about what they love to do, where they go to school, their favorite foods, how they love to swim.  Listening to their little voices sing and talk.  How they all sounded like our Bubbs, but in their own way. I could go on and on.....

Little Liz and her amazing Mama Emily.  Such a little cutie, and amazed me in the pool!!  What a swimmer :)

 

 

Patrick meeting his Irish brother Cormac.  He is so

sweet. These 2 look very similar, especially with their glasses on....but as you can see, neither one of them wanted to wear them for our pic :)

His family came from Ireland.  So nice to meet them.

 



Friday was conference day and we listened to the doctors from CHOP update us and talk about research.  Very interesting to listen to.  We had several other speakers through the day, different doctors and therapists.  And then a nice round table discussion with parents at the end.  After dinner and a rest, we went to the pool and swam with some other families.  It was amazing to see how relaxed our kiddos were in the water.  They truly love it.  We met little MJ and swam with Liz and their parents.  It was fun to watch them in the pool.    Although their dad's, and Tim, decided to take over the spotlight and dominate the water slide :) 

 Listening to the Orthopedic doctor.  He was very passionate

and nice to listen to.

 

 Look out Bubbs....there is a giant belly button behind you.

 

 My little baby was loving it.

 

Me and my boy :)  He loved it!!

 



That night we were hanging out with several families.  Just having fun.  We got back to our room about 12.  Bubby had fallen asleep, Tim was showering and I was getting Jameson settled down.....when all of a sudden......Vomit fest 2014 took place.....WHOA!!  Poor Jameson, was so sick all night.  We thought it was from drinking too much pool water or something he ate. But not sure that was the case now.  I probably got a total of 45 minutes of sleep that night.  I felt so bad for him.  He was having soooooooo much fun and then to get sick :(  So instead of sitting by the pool with the families on Saturday, I was pumping this kid full of fluids.  I was delirious from exhaustion and worry, and completely mad at whatever virus/bug decided to take hold of him....this weekend...of all weekends.  We also learned a few of the PKS kiddos also had caught something.  Such a bummer and scary to have a sick child away from home, so we are hoping that they are feeling better now too!!

Tim was able to take Patrick out for a bit before his nap on Saturday, so I was happy about that :)  But jealous and completely bummed out that we were missing the whole day.

He slept for 2.5 hours on Saturday and woke up seeming to be fine.  We decided to try and go to the dinner, just for a bit, so we could see everyone....Plus...it was supposed to be outside, so we felt it would be safe.  But....a massive storm came in just as dinner was supposed to start.  So we ended up inside. We tried sitting over in a corner and tried to keep him away from everyone. 

Lillie and her mama Amber.  Was great to finally meet this little cutie pie.  It was her birthday on Saturday :)

 

During dinner we were presented with the most generous gift.  Every family, within this family, is so generous.  Whether it is with just listening, giving advice, sharing equipment, etc. 

Patrick was chosen to receive one of the 2 Upsee's donated by an amazing family.  Tim and I were both overcome with emotion.  I am blown away by this family and their complete generosity. I can't put into words the feeling of that moment.  We told them how thankful we were and that someday, we strive to pay it forward, in a way, that we see the happiness for someone else, that they gave to us.  So this is a public Thank You to them!!!  You have brought happiness and the hope of getting Patrick to another levelin his development.  We are truly grateful and blessed.

Naomi and her mom Edythe.  Such an amazing family.

Naomi is an absolute doll!!

If you don't know what an Upsee is....check out the pics.  Its a new device that allows your child with a disability to walk with you.  It is something Tim and I have been looking at and was on our Bubby wish list, to someday get for him.  Now he has it.  We were sooooooo excited last night that after baths, unpacking, and Jameson was in bed, we tried it.  Probably wasn't the best time of day for Bubbs, but we did it anyways :)

 So beyond excited about this!!

 Modeling in his PJ's

 He didn't like it, in the beginning, but slowly became relaxed and stood tall.

 

So as I am crying and talking with Naomi's family, Tim is in the bathroom.  We decided we were going to take Jameson back up to the room....and then....Jameson pulls on my leg, and I could see the look on his face.  He didn't feel good...it was going to happen.....I tried to pick him up to run out of the room.....nope.  Instead I was showered with it.  I.....felt....so....bad!  Not only for him, but that we were stupid enough to bring him down there in the first place and expose everyone.  Ugh!  We just so desperately wanted to see everyone:(  We are praying that no one else at the conference gets it, especially any of the kiddos.  Tim was victim #2 in our house, this morning.  Thank God, we were home though.

I have to apologize to the people who came up to us and tried talking to us as we were running like mad people out of that room. So sorry:( There is something very humbling about walking through a hotel with your, now naked, kid and dripping wet from him.  I am hoping it is something to look back and laugh about....someday?! 

Bubbs had the best weekend.  So happy...so relaxed.  Almost like he knew he was with his family and friends.  It was so great.

I love everything about this picture!

Amazed at how they are all sleeping in the same position.

Jake, Patrick, Simon, Todd

 Anthony, Luke and Patrick

These boys are such charmers!

Luke was loving Patrick's hair :)

This picture cracks me up. 

You have Patrick, Luke, Anthony and Kara, all connected.

Then I love that Jake is looking at the camera and posing for us.

Then there is photobomber Jameson.

 

And then there is Avery.  Oh, how she enjoyed her weekend.  I have to thank Sally (Todd's mom)for encouraging Avery and Gretchen (Simon's mom), who wanted to make sure she was included with the older siblings.  A lot of the siblings have known each other for a few years, so already have that connection.  It's not always easy for a 12 year old to walk over to a group of peers.  Gretchen went out of her way, in the midst of her busy night, to introduce Avery to her daughter, Maddy.   Then off Avery went for the weekend.  She was so excited to spend time with them. I'm not sure we saw her more than 2 hours the whole weekend.  The pure enjoyment that she got from being with these kids.....I can't put into words.  Last night, she was telling us about her weekend(and if you know Avery, there was no detail to spare) she told us how nice it was to be around kids, who "just get it" and she didn't have to explain why her brother doesn't talk or why he shakes his head all the time.  We heard stories about all the other PKS kiddos, through the stories Avery had learned from their siblings. 

 

It makes me cry, when I think about how amazing these siblings are.  Truly!  I was so impressed to watch them interact and take care of their brothers and sisters without hesitation and with so much love.  I often found myself just watching them.  We talked to Avery about how she shares a bond with these kids that is rare, and is shared by few people in the world.  That was one of the high points for me this weekend.  The world could learn a lot from these kids, and I hope they do!

Avery and Airyn taking a selfie

This little girl is amazing and an inspiration to us and Avery has

told us several times about how much fun she was!

 



Lastly....the PKS kids board.  The people who spend years organizing and planning this event.  An inspirational group of people, who put the needs of our PKS kids and families first.  Who make sure we are all comfortable, welcomed, and love all of our kids as their own.  How they have time to plan such an amazing event, with families and a PKS child of their own, is beyond me.  It was amazing.  No words can describe it otherwise.  I only really got to enjoy half of the weekend.  I can only imagine the fulfillment of a full weekend!  You all are great at what you do and deserve major props!!  Thank you for what you do for our kids!!

Long post for a long weekend!  I know it was long, when both of my boys slept until 10 am today!!!

A few regrets....
we were not able to talk to everyone as much as we wanted, or meet everyone we wanted to,
our poor little fella was sick :(
And I am awful at remembering to take pictures, even though I love taking them.

Going to this conference would not have been possible without the support of our family and friends!! So thank you, thank you, thank you!!! All of you!!

A special thank you to Aunt Laura.  You know why.....and we love your love for us and your family in general, and your dedication to Bubby!! xoxo

                                                Bubby took one for the team and gave his
                                              brother his binky in the car on the way home.
                                             Your family thanks you....and half of Michigan!

                                                   Enjoying some brother piano time
                                                             when we got home :)