Sunday, July 1, 2007

What a Weekend!!

This weekend, had every emotion possible. Laughter, pain, sadness, empathy, annoyance, sweetness, kindness, exhaustion, shyness, self loathing, spouse loathing, scared, puppy love, coveting, aspiration, true joy, and most of all gratitude!

We-well most of us, most of the time-went to the 17th Annual Cher's Family Retreat for the Children's Craniofacial Association. I hope I can tell you all that happened. I'm gonna go through the above emotion list, and tell you why we felt all of them.

LAUGHTER. So much laughing. Emma had such a good time at Lagoon. She got to go an ALL the kiddie rides, and LOVED all of them. There was a dance Saturday night. She was out on the dance floor, cutting up a rug! At one point, she sat down, and was spinning on her butt! Like breakdancing! Too funny!

Jack was so cute and silly. He just wandered everywhere, like he was at home! They had a stage, to make announcements from, for the entertainment, ect. Jack made his way over to the stage, and climbed right up! He was so cute, I couldn't get him off! Then at the pool, he discovered that when he sat st the edge of the pool, it was slippery enough, that he could spin around on his bum. Around and around, doing it with just his feet! He was so proud of himself!!

PAIN. Well, we went to lagoon. And WALKED everywhere! Need I say more? Also, Steve hurt his back. It was bad enough he only went to dinner, on Friday, and Saturday. He missed, the Ice Cream Social, Lagoon, and the Pool Party.

SADNESS. As mentioned above, Steve couldn't do most of the weekend. We were sad to not have Daddy with us. Also, Nick was at scout camp. So we missed him too!

But mainly, there were so many kids there, whose "appearance" makes me sad. Sad, because I KNOW how the world treats them. Sad, that because of their appearance, so many people will not see the wonderful people that they are. They are kids, and PEOPLE, just like the rest of us. Sad, because some of them look like they are in physical pain. Sad, watching their parents take care of them, and knowing it is a lifelong process.

EMPATHY. I got to meet and chat with some moms. Even though our diagnosis' may be different, we have in common, that our kids "need procedures", that they spend WAY too much time in the hospital, that they receive therapy. The biggest thing we have in common, is the doctors gave us ALL no hope. That my friend is empathy.

Annoyance. Let's see. I was annoyed to have to go to Lagoon...BY MYSELF! Annoyed that Parker, at first, only wanted to do what HE wanted to do! Annoyed to we couldn't stay in the hotel, and the kids asked EVERY night, if we could stay. Annoyed that it was SO hot at Lagoon. That Lagoon a beach was so crappy. That I didn't have enough money to get the kids stuff. But mostly, things were GOOD enough, that these annoyances were over shadowed by the fun times!

SWEETNESS. Watching all the kids interact with each other, and be completely accepted.was amazing. Watching MY children, not notice anything is wrong with them, totally sweet!

People were so kind to us. They would stop and talk to Jack, and the rest of the kids. You know, when you are in a room full of people, you have never met, but you have a very special thing in common. There is a kindness, you don't find in the outside world. At Lagoon, I knew, if Parker got lost, (which he did, see the scared paragraph) that he could approach someone wearing a CCA shirt, and he would be fine. We were treated like family. With kindness, and love. And in return, it was easy to reciprocate! It doesn't get better than that!

Do I really need to expand on this? Did I mention Nick wasn't with us either? I was pretty much on my own, the whole weekend. At least when Nick is around, I can leave Jack with him, and he'll watch Jack, and play with Emma. He can get Jack in and out of his car seat. He is a HUGE helper. And he wasn't there. And... it was over 100 degrees all weekend.

Plus all the emotional energy that goes into walking into a room full of strangers, yet family. Ya know what I mean? And...worrying about Steve, and Nick the whole time didn't help.

SHYNESS. I know, I know... Jenny shy? Well, I do better with...a wingman. I was all alone, well with the kids. It is hard to meet people, when I have to keep my eye on everyone, especially the ever wandering baby. I also, don't look the way I want. I'm much bigger than usual, and it's hard for me...RIGHT walk into a group of people, and be the center of attention. I'm better one on one. I tired really hard to break out, and did much better, but too late in the weekend. Which brings me to my next emotion.

SELF LOATHING, and SPOUSE LOATHING. I am SO mad at my self, for letting my insecurities get to me. And I am SO mad at Steve for hurting his back. Both of which are self destructive, but I'm working on it! Steve didn't do it on purpose! Sitting there, by myself, was maddening. But I couldn't do it got off my butt and meet people! I finally had to tell myself to do it or I'd regret it. I did it, but too late. So I'm still mad at myself, but not as much as I would have been. I'm also mad that I forgot my camera Sat. We got some cute ones at Lagoon, but it was just us. I didn't get any pictures of our new friends. Someone is going to post everyone's pictures to snap fish or something. As soon as I get some, I'll post them.

SCARED. We lost Parker at Lagoon, for about 45 minutes. At first I was mad. Then as time wore on, I got scared. We took a bus from the hotel. The bus was leaving Lagoon promptly at 4:00. He went missing around 2:00. I started to think how scared Parker must have been, knowing all of those facts too. We finally ran into him, and he was...scared, and relieved to have found us.

I also went on the Tidal Wave with Emma. Oh my...I was afraid for me, and had a death grip on Emma. SHE loved it! *rolling eyes* Also, at one point, Emma and I were in line for a ride, and Parker had Jack. He took him to fill up the water bottle, and they went out of my sight range. It was only about 3 minutes, but I had just found Parker, and all those emotions came back, and now Jack was missing too. K, they weren't actually missing, but I was scared they would be.

Parker "hooked up". He is such a Casanova! He had won some glass marbles, and glass flowers in a Chinese auction. He wanted to call Nick, and have him bring one of the flowers "in case" he met someone, so he could give it to her! I told him Anyway, during the dance, I looked over, and Parker is dancing with a cute little girl. He came over to introduce her to us. They were so cute, and hung out all night. Steve took this picture with his phone, but it is better than nothing!

I asked Parker last night if she had a sibling who was there, he said, "Nope, they were there for her!" He didn't even know what was "wrong" with her, nor did he care. I'm so proud of him. They gave everyone a directory, with contact info, diagnosis, and Dr. I looked her up when we got home. She has craniosynostosis. They exchanged cell phone numbers, and emails. She lives in Florida. Kind of near Steve's mom. He was so cute. Although... I am dreading what the future will be like with this kid!

COVETING. As dumb as it sounds. I was actually jealous of all the kids with a syndrome. Here is a list of syndromes that CCA considers craniofacial disorders. Sure Jack has a cleft lip and palate. But he also has hydrocephalus, and a brain malformation, and Poland syndrome. He doesn't have anything that encompasses them all. And I get tired of having to list everything. When you have Apert syndrome, you can find doctors who specialize in it. When you go to the ER, you just tell them he has Pfeiffer syndrome. I know...the grass is always greener.

Also, we were VERY covetous of the people who got to stay in the hotel!!

ASPIRATION. There were so many people I want to grow up to be like. So many families, handling things so much better than me. At least on the surface. I want to be able to pull off an event like that. I want to be a volunteer for an event like that. I want to hold fund raisers, like the other families do. Someday....I hope!

TRUE JOY. I wish I had video of the entire event. I wish I could show you the true joy on the faces of all the kids, as they saw others like them. As they saw friends from last year. As they realized it was ALL YOU CAN EAT ice cream the first night. My kids alone...had at least 4 trips to the ice cream buffet.

Then it happened. They had a Chinese auction, where people donated gift baskets, for those who wanted them, to bid on. Well, each one has a state theme. Since Steve or Nick couldn't come to some of the events, my mom took their place. Well, someone brought a Boston basket.

OH MY...

She wanted that basket so bad, I thought she might die if she didn't get it. The raffle tickets were like 20 for $5. My mom got $20 worth. We spent most of the first night, filling them out. She was absolutely desperate to win that basket. She came back on Friday for dinner, since Nick was at scout camp, and bought even more.

Well...she WON!!! The look on her face, was true joy! Parker also won the Marbles he was dying to have, so true joy rang out at our table!

I had so much fun, watching MY kids have fun. It was the look on their face when I said, SURE!, to, "Can I have more ice cream?" Or the look Parker has running off a cool ride at Lagoon. Or the look on Jack's face, when he finds a friend. Or even hearing all about scout camp from Nick. Or watching Emma on the dance floor. It's been such a hard year and a half. It's about time we had some true joy!

GRATITUDE. On the way to the hotel, Parker said, "I'm so glad Jack was born! We'd never get to do cool stuff like this if it wasn't for him!" As exhausting as Jack has been, well not him per se, but the things he comes with, he has opened so many doors for us. He has opened our hearts to kids like, or worse then him.

I'm grateful for Cher, and all the people who worked so hard to put together such a fun event. Everybody got a cool welcome basket. It had a cute black CCA t shirts for everyone in the family, white EVENT shirts(Parker is wearing it in the picture) ,a cute stuffed cat, that I still don't know the significance of. But the big surprise...Cher gave ALL the families a $50 Gift Certificate to use in the Hotel. We got to have dinner in the coffee shop. It was a very fancy resteraunt, and the kids were hilarious! Emma had ordered a grilled cheese. The waitress brought out a roll for everyone, with a pat of butter, and jelly. They were SO excited! Emma dug right in, and after a minute looked at me and said, "Is the my grilled cheese?" They don't get out much!! ;) But I digress...

I am grateful, the Jack only has a cleft lip and palate, hydrocephalus, a brain malformation, and Poland syndrome. Being around all the different syndromes, I am humbled by what Jack has.

I am grateful that the Lord sent him to us, and that he found other families to send special kids to, and that these families accepted the challenge. We are ALL better people because of Him.

I am grateful to have had divine intervention. I could have NEVER made it through the weekend, without a LOT of help from the man upstairs.

Lastly, I'm grateful that YOU read my whole story!! :)

Check back, because I'll have pictures soon. The gallery is giving me problems, and again, I didn't have my camera, so I'm counting on others!!!


Lisa M. said...

This made me cry-

I am so glad you experienced all of those things, because really- in the grand scheme...

that is what life is all about-

disillusioned said...

So awesome!!! I get to attend and be a volunteer at the National Down Syndrome Congress Conference in Kansas City the first weekend in August, and your entry has made me SOOOO excited to go :)

Mel said...

We were at Lagoon that day too! I was touched by the joy the kids from Craniofacial Association experienced as I observed them going from ride to ride. It was so hot! I think I got heatstroke and I felt bad for everyone in their black shirts. I came home and googled Craniofacial Association and read up on it. How neat that they had the retreat so close to home! So sorry that you lost Parker but glad he was okay and everything.

Fowler family said...

jenny , i loved reading this. so glad you guys had a fun, memorable time. sorry about your hubby's back- that's no fun. i loved parker's comment at the end. can't wait for pictures! -anna

Jennifer said...

You are amazing. Congrats on doing it yourself and living through it. I sadly fear going out all by myself with only 2 kids you did it with 3. Awesome.. Yes you are!

Nancy Brown said...

Ty has craniosynostosis and we do stuff with the Jorgeposada foundation here. I wanted to go to the CHer one in SLC. To bad we moved... Love the comments from the kids. It reminds me of that story from mel ( don't remember what it is called but lisa linked it!) You are doing awesome and you look great!!

pam said...

Wow! I'm sure I'm not the only one who felt each of those emotions as I read your blog. I'm a little teary-eyed right now and I really need to pull it together. I loved reading your blog! And I'm SO glad you found mine from Bishop Lillywhite's. I'm excited to read more of your blog and catch up with the Simmons family. I loved getting to know you in the Hillcrest ward and I thought you were truly amazing! I still do!! I'm glad I can read your blog so that we can keep in touch.

nickparkemjamom said...

Lisa, It IS what life is all about!!

Mary, I'm jealous about your conference. You WILL return and report!

Mel, That is SO COOL! I'm going to pass that on, that you went home and looked it up when you got home. Weren't they all beautiful!!!??

Anna, Parker is so insightful, he cracks me up.

Jen, It really helps when Parker can fend for himself...mostly!!!

Nancy, The Jorgeposada foundation was one of the sponsors for the retreat. And thanks...but I look like crap! ;)

Pam, You are so sweet! I put on a good front for people, glad it's working! ;)

Diana said...

I personally believe life is all about connecting. What an incredible event for you and your family to get to connect with so many different kinds of people! :) Your kids are amazing. Truly. I mean, it's one thing to have always grown up with someone, but for them to be a little older when Jack came and they are still so compassionate and accepting is a big deal. I'm sure they have their moments- we all do- but I am always impressed with the stories and comments you have made about how positive they are about Jack. And why not? That kid is the cutest kid on the planet! :) I hope my kids grow up to be like yours. ;)