Happy 3rd Birthday Jillian!

At 8:24am December 30, 2009 Jillian Grace entered our world. She was our miracle baby, and proves that she has the fight, stubbornness, joy for life, and love that Josh had as well. Jillian truly was brought to us by the grace of God and continues to shine life and love into our hearts. Our little drama mama and dancing queen, Jillian definitely lives in the moment and enjoys it all. Happy 3rd Birthday Jill! A year in pictures...

Merry Christmas

Merry Christmas to you and yours! We hope you had a happy and healthy holiday. We certainly enjoyed ourselves, even if Joey ended up getting croup at 1am Christmas Eve and is still having some rough nights. He was still in the best of spirits considering and both Joey and Jill got more than they could have ever asked for. We started out Christmas Eve day at Joey and Jillian's school for a Children's Service. It is always followed by singing Happy Birthday to Jesus and having cake! What better way to start the Christmas celebrations than to have cake in church! I have one picture on my phone which I of course forgot to transfer, I'll try to get that up here. We host Christmas Eve with Kurby/Klinger family and had a great time! Even though Joey was up a good portion of the night he managed to sleep enough for Santa to make his way in to fill stockings and bring presents! Joey rested when he could, but was running around and doing well all day on Christmas. Jillian also cooperated with an early nap so we could head to Grandma's for Christmas dinner and family fun! Christmas night was rough for Joey, we took him to the doctor and he is resting up and getting better for Jill's birthday party. We are hoping that Jill doesn't get it as well. I guess its that season though! More fun to come this weekend, but we hope you had a wonderful holiday!

Merry Christmas!

Ok, the camera has been cleared. The following posts are the past week, and I will not post til after Christmas with all the joy the holiday is sure to bring! We hope you have a great holiday!

Joey's Holiday Program

Friday was Joey's turn, and it was a different program with different songs and poems. Joey had a big smile on his face and did a great job. He was very excited to bring us our gift of an ornament he made for our tree. Since it was one week since the horrific events in Conneticut, before the program began the pastor says a prayer and speaks a bit about the services for the holidays and about his children when they were our kids' ages. He did this both days, but this being the week after, he also said the name of each victim, followed by a bell being rung, there was a moment of silence and a nice prayer for those that are grieving. He spoke how the bells changed their tune in a moment as the kids outside were ringing their bells to start the program. Whenever Joey has programs like this I can't help but be a bit more emotional or sensitive wishing Josh were alongside him. Joey is such a patient and loving boy that I know if Josh were with us he would be holding his hand, including him, and spreading so much love. So after the bells ringing one tone to another, reflecting on grief of losing little ones so innocent, followed by a bunch of smiling sweet faces the same age as many of the children's lives that were taken, and ringing bells... lets just say it was an emotional moment!

Jill's Holiday Program

Here is Jill's first holiday program at school. She loves being in the spotlight, and had a lot of fun singing her songs and ringing her bells.

Sheldon Christmas 2012

Last weekend we finally got together with our friends that we hadn't seen since Joey's birthday! It was way overdue, and the kids had a blast together while we were able to catch up as well. Joey and Jillian loved their gifts and play with everything! Thank you for hosting us, and for catering to our vegan ways! ;)

Our Gingerbread House

Total Hockey!

Our great neighbor, Mr. Sole aka Mr. Hockey himself was kind enough to set Joey up with his first set of hockey equipment! This is a pretty penny if you couldn't gather from all the equipment you see Joey wearing here, so a huge thank you to Mr. Sole for going with Joey to make sure he was sized correctly, Mrs. Sole for offering some great tips that I will probably ask her about again, and for being patient with our shy guy. He was and still is ecstatic! He puts his equipment on daily and takes his stick around the house...we've limited him to the kitchen and outside of a foam puck going under the stove which was quickly retrieved we've only had one casualty- a candy dish that was on the counter- No High Sticking! Thank you so much!

Lots of updates

So I fell behind in blogging right before Thanksgiving, and with the Christmas around the corner we have been very busy. So here is an update in pictures (or at least some of what I took when I remembered!). Last night was Jill's first dance "Holiday Showcase." She did terrific, she was hilariously adorable. If you are interested in seeing the 1 minute clip of her dance we have it! Bravo, Jillian! A week ago Phil had off of work on a Monday when Nonna and Grandpa are here, so after school Grandpa and Joey went skating. You can tell by the look on Joey's face he loves the ice and Grandpa out there with him was a treat! Last weekend we had Christmas party with friends from high school and their kids. Since we don't see everyone as often as we'd like we spent more time catching up than taking pictures. So here is the before shots... The first Sat. of December we had Breakfast with Santa at Joey and Jill's school. We had our usual routine of hockey then dance, but after eating as fast as they could get away with (meaning not eating much anyways) they ran to Santa to sit and tell them their wishes. Thanksgiving was spent at Nonna and Grandpa's. A yummy meal and lots of family fun, but of course the camera was thrown aside and forgotten again! Just before Thanksgiving Joey went in for his fitting. Joey will be in Uncle Kevin and Auntie Nicole's wedding in February. Joey has the lucky job of walking the little lady Amelia down the aisle. As you can tell he is very excited about this job and adores Amelia. We were very early in putting up our Christmas tree, the weekend before Thanksgiving, but we were very excited and wanted to enjoy it since we usually take it down before Jill's birthday much to some people's dismay! Here are the kids helping with the tree decorating. The following day Andrew and Emma were over so we had all 4 kids help decorate the living tree for Josh. And finally some random November and December shots, mostly of hockey and dance. Ok, I'll try to stay a bit more on top of things, but I'm not sure I can make any promises!

World Prematurity Day

Tomorrow is officially World Prematurity Day, but since today is a week day, Phil and I worked a booth at the hospital and handed out purple ribbons and displayed pictures of our preemies: Josh and Joey. After our clean up we were able to go into the NICU to see the construction that has been going on and say hi to some old friends, which also meant a super big hug from one of my favorite speech therapists! The last pic is of the display, pics of Joey and Josh as babies, and then Joey healthy and happy today. I also decided to put some pics of their first few days and just how tiny they were. I remember hearing that you should put a kleenex box or a 2 liter bottle of pop next to your preemie to give some perspective in pictures as to how tiny a 3 pound baby can be, but I think when you see all of Joey's head in Phil's hand, or Josh's fingers wrapped around one of Phil's, and those tiny little feet you can remember a bit!

Circus Circus

Children of all ages, that means us, come see the greatest show on earth! Saturday we splurged and went to Ringling Bros. Circus! It was awesome! It was almost 3 hours long, the average child's age was probably under 5, and it was really amazing. The kids took in all that they could, and we spent all that we could! I just have to tell anyone who may go to the circus that the $33 tickets are worth it (we don't go to the movies much at all--maybe once or twice a year, so I thought that was my year's worth of movies) but a box of popcorn...$15! The programs, light spinners, don't even ask, it was a good two bill day, but totally worth it! The theme for the circus was Dragons! The performers came from all over to show us the strength, courage, wisdom, and heart of the dragon in them, and asked if we have the spirit of the dragon in us...Joey and Jill definitely do! They loved it! Jill's favorite was the dragon that we saw at the very end blowing smoke and all. Joey says his favorite was seeing the "king of the jungle lion, and tigers" but he was also in awe of the ninjas jumping through fire and knives, and the motorcycles spinning in the cage. The tightrope, trapeze artists, acrobats, really all of it was quite amazing.

Halloween 2012!

To start off the Halloween festivities we went to Joey's school for a parade and party! Joey elected to be Superman for school since he could not wear a mask or have any handheld props. So it was Superman for school followed by a change after lunch into Captain America! We went to the library with Nonna for another parade, this time both could participate together, and we can never go to the library for just a program! Both Joey and Jillian love the library, checking out books, playing on the computer, doing some puzzles, and playing with the stuff they have all around. Thanks Nonna for letting them show you what they love to do there! After spending naptime at the library instead of in bed, we came home and got ready for Andrew, Emma, Auntie, Uncle Chris, and Grandma to show up so we could go trick or treating!

Jill's Halloween Parade!

Jill was able to participate in her first school Halloween parade! Grandma, Nonna, and Grandpa all came to see Jill parade around the sanctuary, sing a song (although she pretty much stared at the crowd), decorated a treat bag, and made out like a bandit with all the treats Grandma helped put in her bag! Nonna and Grandpa gave Jill a "best costume" award and a fun Halloween barrette to wear. Jill definitely had a lot of fun with her grandparents there, thank you for coming even though it is a short program! And I know she is gonna love the attention on Grandparents Day at school next month! Stay tuned...Joey is up tomorrow for his school parade, and of course Happy Halloween!

Fall Fun!

I am falling a little behind in updating only because so many fun things happen from this time of year til the end of the year! A week and a half ago on Friday we went to Sonny Acres to get our pumpkins! Always a fun night, and luckily it wasn't too terribly cold, and it had just rained so we pretty much had the whole place to ourselves. We went just after dinner, and just before we left to come back home the high school crowd seemed to be heading out for the night. The kids had a blast picking out there pumpkins and having the run of the place. Andrew, Emma, Uncle Chris, and Grandma braved the Haunted Hayride while the rest of us checked out the goats! It was a little late to carve the pumpkins when we got home, but we had a lot of fun playing out there. Saturday morning after hockey and dance Joey couldn't wait to carve his pumpkin. Daddy helped Joey while I helped Jill, and then once the seeds were out the kids pretty much got bored so they went to play while Mommy and Daddy got to work. This was my first pumpkin carved like this...I am usually a triangle eyes, nose, and whatever happens for a mouth kinda carver so when Jill asked for Snow White and Daddy told me I was doing it I was a bit worried. Daddy did great on Ironman, and said in front of Joey that Snow White looked like she had a mustache! It was the princess upper lip, not a mustache but Joey totally believed him and tells most people that Mommy made a silly pumpkin of Snow White with a mustache! That Sunday we also went to Goebert's Farm with Nonna and Grandpa! Grandpa made his yummy blueberry pancakes to give us some energy before heading out to feed all the animals! The kids loved riding the horses, the camels, and feeding every animal they encountered! Jill was even fascinated with the mechanical dinosaur that ate a pumpkin and then thought it was hilarious that it had quite the belch afterwards! We had some tasty snacks and looked around the store before heading back home. It was quite the fall weekend! This past weekend (like I said I am over a week behind) we didn't do as much outside since it was much cooler. We're glad we were able to get out and have our fun when we did!

Today while Jill was in school Joey and I had some projects to do. Joey told me last night he wanted to make a windmill and a scarecrow just like George (Curious George). So that was just what we did. First we made the pinwheel/windmill and then we made the scarecrow using our Mickey pumpkin head. Making sure it was not all work, Joey took full advantage of a few good sprints and jumps into the pile of leaves!

Moving on up...

Joey passed his first hockey class and was moved up to the next level! He was super excited! Jill continues to love dance class and is willing to put her hair up, loves getting her dance gear on, and with the cooler weather we pulled out the leg warmers Auntie Miya made Jill when she was a baby. Back then the leg warmers barely fit over her chunky legs, now they are perfect for dance class!

Science Experiements

Last week in a weak moment at Walgreens I got Jill her first makeup kit. She had the option of Barbie, Tinkerbell or Princesses and I thought she'd pick one of the latter two, but she chose the Barbie kit. It had nail polish (which I was trying already to get her to like the .99 one over the $4.99 one that was the same exact color, but when she saw the whole kit for nearly same price as the good nail polish I figured why not? Well, because she loves putting makeup on everyone else and Joey was more than happy to be her victim! Last Friday we also had a science experiment when Daddy went to the store to buy dry ice. So here are all the fun things they did experimenting with the clouds in our kitchen!

Congrats Auntie Trish and Uncle Alex, and a pretty flower girl named Jill!

Super exciting weekend! Jillian was a flower girl in her Godmother and Aunt's wedding. Auntie Trisha and Uncle Alex had a most beautiful wedding and Jillian was more than ecstatic to be a part of it. We did the teaser pics of her trying on her dress at the wedding shop, but it really couldn't compare to how pretty Jill looked and pictures can't capture how awestruck she was to be a part of something so big and be a princess! For starters the rehearsal was Friday night and Jill learned her part in using the basket of leaves to walk down the aisle with her cousin Andrew. The two were a cute couple and both personality plus. Jill received a basket full of goodies from Auntie Trish and Uncle Alex, which was filled to the brim, some of the bigger highlights were stick-on earrings, a very cute frame about her being a flower girl that is already on her vanity table in her room, books, and a string of pearls! Auntie Trish, Auntie Pam, and Auntie Tiff as well as the rest of the bridesmaids were so wonderful at including Jillian on every step of the wedding day. She went with them to get her hair done (which she had a few moments from being burned by the curling iron but recovered well) and was ecstatic to have her nails professionally done! She loved watching the other ladies get ready too. She had her fair share of snacks, ask any of the girls, but she didn't have a real lunch or nap and did awesome the whole day. After getting her dress and pearls on she was ready for action. Auntie Trish made a most beautiful bride and all of her bridesmaids were sure to take good care of her. We headed to the 19 Century Club for the wedding... then across the street for some pictures... and back to the 19C Club for a fun reception... The kids loved dancing, were dancing during cocktail hour, and Jillian was whisked up in the dancing with many friends, bridesmaids, and even the bride and groom took her for a few spins on the floor. Jill has her mom's blood running through her; while Joey fell asleep in Daddy's arms, Jill and I were still on the dance floor. Jill has decided she loves Kiddie Cocktails and given the chance would have closed the place down with the rest of the wedding party. Joey was quite out though so we got Jill to leave the dance floor only to have her first tearful moment of the night when we were saying goodbye to Grandma and she kept asking me for another Kiddie Cocktail, wanting to go back up and keep dancing! Once we hit the car and put pj's on, she was out within 3 blocks. As I mentioned earlier, Auntie Trish is Jillian's Godmother, but she is also Joshua's Godmother too. Never forgotten and I am always taken off guard, Trish walked down the aisle with the rosary that was made for her from the flower from Josh's casket. And if that wasn't enough to make me cry finding out, seeing the rosary, and then watching the beautiful bride walk down the aisle knowing she had that, the song that they exited to from the ceremony as husband and wife was Viva La Vida by Coldplay (done by the quartet), but that song has been a "Josh" song between Phil and I since we first heard it shortly after he passed. So once again, tears down my cheeks and knowing he is letting the sun shine down along with his sweet smile. Alex and Trish looked so happy and so in love. They had a great first dance--so fitting for them, and such a wonderful day. I do have a lot more pictures Auntie Trish, a few keepers from the park for sure, but didn't post here. ;) Congrats to the happy couple!

NICU reunion party 2012

Each year, usually in October, we are invited to the NICU reunion party. It is the best celebration of life you can think about; seeing so many kids that spent days, weeks (Joey), and for some (like Josh)months in the NICU now they are getting bigger, thriving, and showing how capable a preemie is of overcoming any obstacle. We were able to catch up with our favorite NICU nurses which we just recently saw some at the CHARGE run, and some that we hadn't seen since last year. There as usual was great kid food, lots of crafts, bubbles, games, haunted house jumpies, and the band! Even though it was earlier this year the kids were still allowed to dress up so here is also a preview of their Halloween costumes. We stopped by Assumption to thank Josh as well as Joey for allowing us to be invited and included on such a great day.

Clearing the Camera...

We have a very busy and exciting weekend coming up as Auntie Trish and Uncle Alex tie the knot and Jillian gets to be princess for a day as flower girl. She is very excited and I am sure I will have plenty of pics of that, but for now here are some of what Phil says are the same pics. Yes, the Arboretum! I love it, and at this time of year breathtaking with the leaves changing. Luckily I have my nature boy Joey who seems to love going there as much as I do, so we went last week but only were able to go for a very short time because we had to pick Jill up from school. This past Tuesday Jillian stayed for the enrichment program because she absolutely loves her teachers, socializing, and being at school! So Joey and I were able to spend a few hours and a nice lunch on a nice fall day at the Arboretum. October had hit so the scarecrows were out lining the lake which we walked first, caught some grasshoppers, played in the Children's Garden, and had our lunch al fresco before getting Jill at 1.

3 years FAC

The other day I walked into our Family Advisory Council meeting and noticed a cake. Thought, hmmmm someone's birthday? In fact it has been 3 years since Phil and I, and a few other parents have been a part of the FAC at our hospital. We were picked to be on this council to help the hospital staff see what it is like to have a child going through so much, to be able to advocate for those parents, children, siblings and voice the compassion that needs to be in a hospital. We have seen so many changes, have voiced opinions and shared ideas on many projects including the construction of the pediatric ER and peds units, materials that are important for admission, discharge, and the many procedures that our kids have gone through, and of course my personal baby was bringing Open Heart Magic to the hospital. Driving over, I had thought what can I bring to the FAC anymore? Joey is 4, Josh has been with the Lord for 3 years, I feel like it is all slipping away. We take summers off of these meetings and maybe that was why I felt like I was so out of touch with things. In our meeting there was a discussion about pain managements and it is amazing how a topic can just be stated and memories flood back like it was yesterday, things you thought you had forgotten, not the memory as a whole but the nitty gritty details, oh how those are engrained in my head and heart forever. It is like a word association game: you say apple, I say banana. You say pain management I say call IV Therapy immediately. You say suction: I say don't go past 5. All it takes is one word and you are back in time, holding Josh (man was he fiesty, he didn't get his nickname of "manimal" for nothing!), watching his "popeye face", holding a pacifier in his mouth as he sucked feverishly, watching his tongue move side to side in his mouth as his eyes go side to side in wonder of when it will be done, the initially scariness of not breathing, the need to be suctioned, the kicking of feet ("straight kickin' boo" was another term of endearment), putting so many bean bags of pressure on him that he couldn't move. Oh I could really go on and on, you say pain management and I am there with Joshua reliving it all. And that is why these meetings are so important. We have lived through it all good, bad, indifferent, it has been hospital life, home life, and all that can be in between. We are still advocating for Josh, for any other child that might have a stay long term or short, heck it doesn't have to be a kid with a chronic illness or syndrome it could be any kid going to the ER that has the flu or broke an arm. It my chance to make the stay shorter, the anxiety lessened, and the hospital not so scary. As I told the FAC as the bottom line of pain management. All I wanted to do was be mom, to be the one to comfort to be at the head of his bed, to show that I wasn't scared so that he wouldn't be, and to know that my opinions were taken into his plan of care because I am his mom. Thank you Josh for allowing me to always be your mom.

13th Marathon!

Yes, it was my unlucky 13th marathon this year. Given the fact that I felt it was an unlucky number I still finished with a fair time, not my best (3rd best time), but not my worst either. With the hot summer it was hard training, but the support from my personal curb crew pushes me to the finish every time, thank you Mom, Phil, Christy, Mom, Dad, Joey, Jillian, Andrew, and Emma for chasing around St. Charles to Aurora and back to watch me run, it really means the world to me even if its for a quick wave or hi-five! Not sure why these pics spread out into 3 batches, but here they are, the kids seem to enjoy the mayhem of the marathon, and Joey was my perfect coach handing off some chapstick when I needed it most!

Apple Picking

It is that time of year again! I love fall: sweatshirts, apple picking, beautiful leaves, and lots of outdoor fun. We did our apple picking a little early this year because the summer that we had left for a shortage of apples at most farms. Luckily, where we usually go they still allowed picking, but limited it to the quarter pec per person. The kids still had a blast and we picked lots of delicious Jonathon apples off the trees, and they had a bin of Golden Delicious. We also picnicked outside and were treated to Grandma's apple pie a day later! Yum, yum!

Hockey, Dance, and S'mores!

A few more pics of Joey loving hockey, Jillian the dancing queen, and a fire and s'mores with Grandma!

Back to school

Sunday we finished off our fun filled summer by going to the Brookfield Zoo. The kids were super excited to go and we had a few passes from someone that I teach so we took advantage of the free day. We packed up and headed out to be one of the first to enter the zoo, saw quite a bit in a few hours, had lunch in front of the giraffes, and shortly after there was a downpour but luckily we were right by a covered area. The storm passed quickly and we were able to make our way to the dolphin show before heading home for naps. On our way out of the zoo we ran into one of Jillian's new teachers! (more about that after the zoo pics) Monday was a day of rest and relaxation before the start to a busy school year. Jillian was up first on Tuesday. She was very excited to go to school and be with her new teachers. She met them the week before with Daddy, and it is nice that we know one of her teachers from the CDH Parent Advisory Council. One of her daughters who is actually in Joey's class was also in the NICU for a period of time, and we have seen Beth, aka Mrs. W, every other month for the past few years. With 2 new teachers to their school, and both in the same classroom which is Jill's it is nice to know that we know Mrs. W outside of school as well and know that Jill is in good hands. Jill loves Mrs. W and was so excited to put on her back pack and head out to school. She remembered the routine from last year quite well: hanging up her back pack, going potty, washing hands, and the look on her face with Mrs. W pretty much says it all; I know she'll be fine and have no problems at all. Another big girl thing that I forgot to mention earlier in August was that Jillian was upgraded to her big girl bed! She is no longer in a toddler bed, but a full size bed, princess sheets and all! We were initially worried she might fall out since her room doesn't allow for the bed to be against a wall to keep her from rolling out at least the one way, but she has proven big girl status once again and has been in her big girl bed for 3 weeks already! Today was Joey's turn. Joey has always be my more apprehensive one, to put it lightly. But he was also excited for school this morning. It was a rainy morning so he donned his froggy raincoat and boots and brought his back pack along. He found his name on his cubby without problem, and washed his hands and waited for the doors to open. He saw his friend Ryan who he played t-ball with over the summer and they both exchanged smiles and hellos. I started to get nervous as I saw his teacher open the door, she said hello to Joey and he turned around and ran right to her. He picked out his name tag and his teacher helped him pin it on, as she was doing so another parent stepped in front of me and I was worried Joey was going to get upset. He never looked back, never said goodbye, just walked right into class! I was so proud of him after the leg hugging and tears from last year which seemed to last longer than they should have, and I thought for sure with Jillian being Tuesday/Thursday and him being Monday/Wednesday/Friday he would want to be with us. I was so pleasantly surprised and almost worried as to why he did so well, but I guess the fact is he is growing up! I didn't even have a chance to take more pictures because he was moving so fast to get into class! Jillian is going to be able to go to work with me Wednesdays and Fridays while Joey is in school. She goes to the Kids Club while I teach a class, so today was her first time heading in there on her own. She was very shy to my friends at the desk and asked me not to leave in the daycare. She didn't cry but was a bit cautious. I helped her find some ponies to play with and then headed out. When I returned she was still playing in the same spot and Sara had mentioned she didn't get up to play with the other kids but also was fine with them coming to play by her. So I think Friday she will open up a bit more to them and that new experience. She did say she loved mommy's work and wanted to go back on Friday, luckily she is pretty adaptable and I wanted to train and teach so that I could be there to drop off and pick my kids up from school and have one along if I need to like I am doing this year. I am sure she will settle into that part of the routine and we will still have a good hour and a half once I'm done with work to play before getting Joey.

Nic helps Joey skate!

Saturday morning Joey had quite the surprise, Grandma came by to come and watch him play hockey, and just before he got out on the ice Nic (his role model!) and Mr. Sole (aka Mr. Hockey himself!) came to see Joey on the ice! They brought him a Wolves Hockey bag that he loves carrying around like a big guy, thank you so much! Joey was loving it all, and gave plenty of smiles and thumbs ups to us. Mr. Sole of course was King of the arena, back at one of his old stomping grounds knowing everyone there. Grandma got to see Joey in action, and Jill was happy to hang with Grandma and watch. After his practice, Nic put on his skates and Joey was in heaven playing tag and learning some moves from Nicolas. Joey has a picture of him and Nic on the ice holding hands hanging in his room. Thank you so much for getting up and out the door early to make Joey's day! After hockey we were off for some Jill time. Jill's dress for Auntie Trish's wedding came in, so we went to go pick it up and her try it on. Of course Jill thought she was a princess and did not want to get out of it, or give up the basket once Grandma told her she'd be holding a basket as she walked down the aisle. We got home and matched up the shoes we had gotten, and got the stamp of approval later in the day from Auntie Trish when we went for Andrew's birthday party (yes, another one, but his Grammy and Papa are in, so he got another party). Sorry no pics from the party this time, but the kids had a ton of fun! Anyways, Jill has a picture of her in her dress and loves showing it off, can't wait til she is all dolled up with her hair done, tights on, and running around at Auntie Trisha's wedding! Here is a preview of her in her dress, and a few pictures from the shower with Auntie Trisha and Auntie Pam.

Here Comes the Bride...

Jenn, my cousin, got married yesterday! I couldn't have been happier for her, she looked so beautiful, so happy, and there was so much love surrounding her. She made a gorgeous bride, and of course her groom looked quite dapper too! They are expecting in November so they have a busy year still ahead, but we were so happy to have been able to be a part of their special day. The wedding took place at St. James Farm, one of the most beautiful places in the area! It was quite warm, but I don't think anyone really seemed to mind because the smiles from the bride and groom made the heat not seem so bad at all. The kids loved playing around with their new friend Scooter, and then we all enjoyed and indulged at Wildfire afterwards. Thank you so much for including us on this very special day! Congrats Jenn and Chuck!

Happy Birthday Andrew!

Last Saturday Andrew turned 5! We couldn't wait to celebrate at his superhero party! We were told to dress as our favorite super heroes, so our family turned into the Super Kurbys! It was a hot day, but the kids weren't deterred from the bouncy, and had a blast jumping as superheroes, eating pizza, drinking juice, having cake (of course slim Joey stuck to watermelon!), and helping Andrew celebrate his 5th birthday in style! Happy Birthday Andrew! Today (9/1 already!) is his other birthday party, where his grandparents from NY will be in, and another superhero theme, I'm sure the Kurbys will strike back this afternoon! But Andrew played a pretty convincing Spiderman and Batman! Auntie made some adorable capes for all the kids to be superheroes themselves. Emma didn't quite get into it until the end, so Jill and her hammed it up for the camera. All our kiddos are superheroes!

Hockey!

Last weekend was Joey's first time on the ice. Joey was so excited to play hockey, more than any other sport we've asked him about. When we got the park district brochure I asked him if there was anything he wanted to do this fall. Without even opening it up he said hockey. I thought, he must be confused, so asked again. Hockey. He said he really, really wanted to play hockey. He had done an All Sorts of Sports class before and when they did floor hockey that was one that he really enjoyed, so we thought sure, why not. Now, if you remember his t-ball attempts, the last was successful because it was outside, but he was quite hesitant. He did have fun with t-ball, but with hockey we weren't sure about the whole ice part. So we told Joey he should talk to Mr. Sole aka Mr. Hockey. Joey spent the next 2 days stalking his car to see if he was home and then finally he was able to bring him the guide to tell him he wants to play and get his expert opinion. We ended up signing him up, and I wasn't sure what to expect. The night before he said he probably needed to wait until he was 6 or a little older, and I kept telling him that Mr. Sole said he was the perfect size. In the morning Joey was very excited to go, and once we got to the rink was stoked to get his skates on and watch the others. He loved hanging out in the locker room waiting for his coach, and then his first step on the ice...he was off. Not one look back at us, only smiles, of course he fell, but got up so fast, and loves it! We couldn't be happier with his love for hockey!

4th Annual Joshua Kurby Charge for CHARGE 5K

Thank you for all of your support for our 4th Annual Charge for CHARGE 5K run and walk. We were able to raise over $3,300 in memory of Joshua and in support of the CHARGE Syndrome Foundation. Our top male runner was David Hensley with a time of 21:06 and our top female runner Allison McGrath with a time of 23:01. Runner’s times are able to be viewed at mychicagoathlete.com under race results. We had runners and walkers from Illinois, Indiana, Michigan, Ohio! We hope that everyone who traveled near and far had a great day and made it back home safely. This year we had a new venue but proved to be the most successful race to date! We had perfect weather and great people to share this day! All money that was raised was directly donated to the CHARGE Syndrome Foundation in memory of Josh and can be viewed on our personal fundraising page here. We are already planning our 5th Annual Charge for CHARGE 5K and hope that we will see you all next year! Again thank you for making this a great day!

So a quick update on happenings here. After Joey's birthday and party we headed up to MI for an overnight to celebrate Scarlett's first birthday. They had a lot of fun at the party, swimming in the hotel pool, and catching up at dinner. We have had our share of summer water fun with the 100 degree days we've been having. We've had our pool up, Joey got a fun sprinkler wiggly thing, and we also have taken time to do our library and park district activities, as well as Arboretum fun. There was a Pirates and Princesses event that we all went to and the kids had fun dressing up, gave me a thought for Jill's birthday! We also made it out to a Boomers game (no longer the Flyers). It was Coops's birthday that night, the new mascot of the new team, so the kids got bobbleheads, and when they sang happy birthday to him I told Joey it was for him. Joey was super excited, and right after all the mascots were out there singing they announced that it was also Joey's birthday (ok, so it was an 8 year old Joey with another last name, but I started cheering loudly when they said Joey so that he wouldn't know it was a different Joey. He bought it, so don't tell!) Hope you are enjoying whats left of summer!

Happy 4th Birthday Joey!

As most know, we had a crazy storm come through on Sunday, July 1, and Josh and Joey's birthday was 100 plus degrees as well as the 4th of July, the day we celebrated their birthday. So the outside fun was great for the kids, and some who just got power back, or were still waiting for it to come back on were inside, in the basement, or out for ice cream and cake only! We were happy to have all that could make it come and help us celebrate. Joey had a blast!

Happy Birthday Joshua and Joey

Joshua was born first, into our world and into heaven. He is never forgotten and always a part of our family and daily conversations. We love you and miss you. Happy birthday to the one that made me mommy first! (Joey would be mad that I said that, since he loves being first and gets upset anytime he isn't, but fact of the matter is I was his mommy 1 minute before Joey!) Sometimes its hard to believe that Joey was a few ounces smaller than Josh and an inch shorter as well. But both started out in the NICU. Joey was there for a 16 days stay, whereas Josh beat him with 126 days, but here is Joey shortly after he was born (except for the first and 2 others close to the end, see if you can figure it out)... And some of the two of them together...brothers forever.

Sorely behind on updating so here is June and July in pictures...

Last Friday was another hot, hot day so we went to the DuPage Children's Museum to keep cool! Auntie caravaned us over there with Andrew and Emma, and it was a fun morning of playing and running around inside! The week before Joey's birthday we were able to get together with Uncle Mark, Auntie Miya, Nathan, and Jacob for breakfast and to play. Joey loved getting his first birthday gifts a little early--thank you it made his day for sure! And they both loved playing with Nathan (or as Jill was saying after he left "Nafe"), and both were interested in holding and hugging Jacob too. It was great getting together before the crazy party! Here is a sneak peak of the 4th Annual Joshua Kurby Charge for CHARGE 5K route for this year. We are at St. James Farm and Phil and I went for a preview of the course, it will be cross country for sure, but beautiful. We hope for good weather and a good turnout! The last weekend of June was Northlake Days! We got to go to Uncle Don and Auntie Steph's house to have dinner and hang out for a bit before heading over to the carnival! The kids as expected loved every minute of it, and Auntie Steph gave us all, but mostly herself a good laugh by going on the bumper cars to crash Joey! It was so much fun, and always goes too fast! Joey participated in the Mini Indy again this year, a bike race and expo. Jillian was there to help, although she was too young to join in officially. Joey and Jillian washed Joey's bike, made license plates, decorated the bike with streamers and bells, did the obstacle course, a couple of races, and even one where Joey practiced being a paper boy like our neighbor Nicolas! Joey made every basket he had to throw a newspaper in! They were most excited about the popcorn and snacks, and Joey was thrilled to get another trophy and certificate! Father's Day we went out to Rainforest Cafe one of Joey and Jill's favorite restaurants!

Miss You Crys

I promised Ellen a blog posting about Crystal's service last night. It was a most beautiful service with lots of pictures on display and a video playing...every single picture had Crystal smiling, she was always smiling. Dan was very strong for his family and did a remarkable job socializing and remembering those that came in, Crystal had quite the social circle so it was not an easy task. Nicole and Crystal's mom held strong as well. Alex, Bailey, and Eva all dealt with things in their own ways, and I think everyone was starving for a hug from Eva, which like Dan mentioned it just makes you feel better to give her a squeeze. From our dealings with death, the first thought I had was how horrible that everyone is going to work today and getting on with their lives and there is this young family who wants the world to just stop, they want to let everyone know they are still grieving, they don't want anyone to move on, right now life sucks for them. I remember the day after Josh's funeral thinking how everyone was back to life as they knew it but our life was completely different, thinking how Dan is sleeping in a bed alone, even though he was before there was that hope that she'd be back. Just devastating. And my personal grief was that Crystal was the one that showed up to Josh's wake with Eva and I had no clue who they were... drove from Round Lake Beach to be there which any car ride more than a few minutes can be aggravating but to go to see someone you don't know, she was and is an angel. It just made things feel full circle last night, like I lost another part of what Josh had given me when he left our world. Phil explained to Alex how much that meant to him that Alex's mom was so selfless as to come and see us in our darkest time when she had never met us before. I wrote this, and hadn't posted it, thinking I would be adding on, I'm sorry for the delay Ellen, so much to process, and such a wonderful person that I am still trying to believe this all has happened. Not a day goes by I haven't thought about Crystal, Dan, and their kids. I pray for strength and comfort for them, and the ever presence of butterfly kisses.

Rest In Peace Crystal

I found out earlier this morning that Crystal has passed on and is now in a better place. She left our world around 1:30 this morning. I am beside myself, even though it seemed inevitable with the quick turn of events, she was surrounded by family the past few weeks waking for kisses and smiles. I know she is in a much, much better place but can't help but shake my head at the amazing woman, mom, and friend this world has lost. I know we've spoken so many times about how she wishes she had met Josh and how great the reunion will be when I get to hold him again, I am comforted to know that she has probably already grabbed him and spun him around upside down style like many CHARGE kiddos, and one of Eva's favorite pastimes. To say Crystal is an amazing person only touches the surface, she has given nothing shy of everything for her family and friends. Thank you for sharing so much love and life with us. Please keep the Masionis family in your prayers and give them comfort and support, I am constantly in awe of how much the human heart can handle, and this family has endured so much. Crystal and Eva this past Mother's Day

Dock Diving Dog Jessie!

This past weekend Jessie, Grandma's dog, yes the one that just turned 1 in April had her first Dock Diving competition at Riverfest in St. Charles on Saturday and Sunday. On Saturday Jessie took 5th and 9th place with jumps over 16 feet. On Sunday she got 3rd place with a 17 feet, 8 inch jump. She also was kicked out of Amateur status which meant she was not in the finals--had she known she'd have saved that jump for the finals, but she jumped so far in her last jump before the finals that she went from Amateur to SemiPro with a jump of 19 feet, 11 inches! Jessie made her way out of Grandma's hands a couple times and headed straight for the dock, she loves the water and is totally in a zone up there. Grandma and Jessie did a great job, even with the heat! You can go to You Tube and search Jessie Dock Diving for 2 short videos from Saturday! Since Jessie jumped out of the finals by jumping into the next level of competition we were on our way out to see her, but she was not in the finals. So we were more than halfway there and decided to stay out at RiverFest and have some dinner and walk around. Of course that meant the kids first hand at some fun rides!

Venus Transit

Per transitofvenus.org What is a transit of Venus? When Venus passes directly between earth and the sun, we see the distant planet as a small dot gliding slowly across the face of the sun. Historically, this rare alignment is how we measured the size of our solar system. The view is like a front row seat to the transit method, by which we now find planets around distant stars. When is it? Observers in North America see Venus on June 5 around 6:04 p.m. EDT until sunset. The entire transit lasts over six hours. This will be the last transit of Venus to occur in your lifetime. Next chance: December 2117. So, if you know Phil you know he knew all about this well before hand and had purchased some viewing glasses where it gives you the reverse image. The glasses kinda looked like 3D glasses but allowed us to look at the sun. We took a picture through the glasses, so here is our view of the Venus transit:

Crystal Masionis Cancer Foundation

For more info, to donate, and/or to see a beautiful picture of Crystal, Dan, and Eva go here. You can see Crystal has made quite an impact on a quite a population. Praying for you, Crystal.

Praying for Crystal

Why? Seriously, why? That is all I am asking this morning as I shake my head. You have most likely heard me speak of Crystal in the past. She was one of 4 people that came to Joshua's wake that were complete strangers. There was a mom that had a child with CHARGE syndrome that had passed away as well and came to comfort and I would later meet up with again at the CHARGE conference and learn her full story and how she deals with grief, another father in the area that has a son with CHARGE that was trying so hard to hold himself together until I went to hug him and he started to cry saying "It could be any of our kids right there." And then there was Crystal. Crystal drove from Round Lake Beach with her daughter, Eva a CHARGEr, and was there to let me hug her daughter, see what Josh would be like in a few years, and to be of great support. Our friendship only grew from there as we met up again at the CHARGE conference in Bloomingdale, had a mom's night out dinner with a few other CHARGE moms, one being the other mom that had a child that passed as well as a few others that I still keep in good contact with. Crystal and I have e-mailed, talked, met up, gone out, and have been to each others kid's parties, etc. She has made so many wonderful photo montages of Josh, always set to perfectly picked out music, remembered him at her Bowling Fundraiser, and has come to every CHARGE run we've had. We met up in Orlando at the conference last year as well and her son Alex (who shares the same birthday as Jill) loved playing with Joey and Jillian, as did Bailey his brother, and of course Eva too. Dan works very hard for his family and still has been Crystal's glue through thick and thin. I spoke with him this morning and the numbing sound in his voice brought tears to my eyes. How can so much tragedy strike one family? Why do bad things happen to good people? All I can do is pray, there are no words, and that is something I know Dan knows too well, he is there for his wife, for his family, and waiting for what may come next. 2 years back, Crystal found out she had melanoma cancer in her leg. Undergoing surgeries and treatments. We had a celebration downtown with just the girls (my first time stepping into an American Girl store, as well as having a drink at the Hancock Observatory!) to celebrate the end of her treatments--June 12, 2011. (The bracelets shown in the one picture was from Crystal to all of us, as she made bracelets in memory and in honor of different CHARGErs and would sell them to raise money for the Foundation.) Shortly thereafter, cancer was back and she was starting treatments again. She had a few scares where she thought it was moving to her lungs, was back on treatments, and as recent as May 13 posted on her blog: This past week has been a pretty good week, for about 3 weeks after my last treatment I have had to have blood and platelets every week. BUT NOT THIS WEEK!!! This week I got news after my blood work and CT scan, my blood work was finally back to normal and the cancer is gone from my lungs and almost all gone from my leg and its still breaking down I am almost in complete remission. I got 4 weeks off of treatments, doctors, scans, blood work.....I am so excited and finally getting some energy back. I don't know every single detail so the specifics here are not exact, but from what I understand 2 weeks ago Crystal had a seizure. All seemed to be ok afterwards, and she was home. She was a bit forgetful during the week and according to Dan just seeming completely run down. After forgetting her words a bit more during the week Dan's mom asked her if she wanted to go to the doctor, and Crystal said no she wanted an ambulance. Apparently the cancer had moved to her brain and they have tried radiation but to no avail. Dan and Alex are at her side each day, and Dan said he is hoping to come home today with her and place her under hospice care where they will come in and care for her needs but so that she can be comfortable at home. I found some information out from Ellen, thank you!, and spoke with Dan this morning who said he would keep in touch as well as I will be sending meals, and may be heading out there to help with the kids or whatever is needed. All that we can do is keep Crystal and their entire family in our prayers. Please do so, and don't take a single person in your life for granted. Life is a gift, we never know how long we have or if we will see someone tomorrow, don't be afraid to say I love you, to give a hug, and to pray.

Yogi Bear Camping Trip!

Our friend was so nice to allow us to use her camper for a weekend. It worked out well since they were camping the weekend of Memorial Day and then could store their camper and allow us to use it the following week. Friday before leaving I searched and put on some Yogi Bear Cartoons, and Joey and Jillian loved it and now request it regularly! They loved the camper, when I asked Joey at one point what his favorite part about camping was he said napping! He thought it was awesome to sleep in the camper in his sleeping bag, next to Jill, and with his lantern! We had lots of campfires, yummy campfire food, tie dyed some t-shirts, played at the big park they had, went mining for some cool rocks, walked around a lot, went on heyrides where they sang some good old camp favorites, had cartoons in the morning at the activity center, Jill and I did morning exercises with Yogi, other crafts during the day, an outdoor movie, a hilarious show where the workers danced and we saw lots and lots of Yogi, Boo Boo, and Cindy Bear! We even tried out a pedal cart which was quite a workout, Joey loved playing ladderball at the campsite, both kids loved the fish on the wall in the camper that would sing a very catchy song, and everyone seemed to enjoy the fun of camping for the first time. Although as Daddy said to Mr. Engler it was far from roughing it with all the amenities they had with the camper! We have tons more pictures, but here are a few of our festivities:

The kids are now starting their second week of summer vacation! The last week on Thursday was an all school picnic, and while I was chasing after both kids playing with their classmates, visiting with their friends' moms, and teachers I got one pic of Jill with her Johnny. Johnny's mom was taking a picture of them when I was wondering where she ran off to. I had taking Joey potty and found the two posing for a picture together with arms around each other. Of course when I went to go snap my picture they stopped, but Mrs. Kurtz one of their teachers was passing by and commented how that picture will be worth a lot in 20-sum years when they are getting married. The two are inseparable and when I ask what she did at school she'll tell me she "played with my Johnny." Mrs. Kurtz will testify that the two play very well together and are the biggest goofs! Memorial Day was the midpoint between Uncle Chris' 40th birthday and Daddy's birthday. Our patio was done so we hosted the birthday gathering...of course our patio furniture was not going to be delivered until Tuesday though! But we made due and the kids had a blast in the blow up pool, Uncle Chris had Christy pulling him with a string on the hammock to rock him, and the weather was great! Happy Birthday boys!

Patio

It was time, we had debated summer after summer, and finally bit the bullet. I am so glad we did, and so glad we went with a stamped concrete patio instead of another deck. We are very happy with the design, the seat wall, the firepit (that Phil and I glued and put together after the patio was done, but the workers cut it and numbered it for us). The kids love playing on it and we can't wait until we have our first fire, which will be soon! Of course the kids loved watching the construction take place as well, and even though it seemed to take a while to get started the process did go quickly once they started it.

Remembering Malachi

It is hard to tell someone how it feels to have lost a child. Apart from the emotions you never knew you had, could have, or never even wanted to know about period, there is a lot of emotional and spiritual growth that you inherit. I know I have talked many times before about feeling so lucky that Josh has brought me in touch with so many wonderful people, and I am grateful for all experiences I have been given, and would do everything all over again in a heartbeat. One friend that I have not yet met in person, but has held my hand in so many ways is Marissa. Marissa lost her son Malachi 3 years ago today. I remember so clearly following her blog, fighting with all I could from afar for Malachi and his family. I had recently learned I was pregnant and it was morning time, I was in the kitchen, had just finished reading a post or maybe it was email, I don't remember, but Phil had walked into the room and asked what was wrong. I had shared their journey and showed him pictures, so it was no surprise when I turned falling into his arms saying "Malachi! How can this be! Its not fair!" Of course, tears stream down my face as I write this, but to have a bond with someone that you haven't met before and feel so much pain, love, and desire to be there to comfort was overwhelming. Our relationship only grew from there as we have journeyed through grief together. Marissa is such a graceful person, and her entire family is wonderful. I often feel like she is an old college room mate that moved back home that I just don't get to see that often. She has challenged me spiritually and emotionally and has allowed me to grieve along side someone else, has shared some great books, and has allowed me to know that we are okay and God is in control. I love watching Emma and Jackson (born 11-11-11!) grow. So today, I ask to take time out of your day, pray for those that may need some comfort, and don't be afraid to reach out to someone that may be in need of a hug, a laugh, or a knowing teardrop. I promise you won't regret it. Thinking and praying for your entire family today and always.

For God, who said, 'Let there be light in the darkness,' has made this light shine in our hearts so we could know the glory of God that is seen in the face of Jesus Christ.-2 Corinthians 4:6

As we were remembering Malachi and his family today, we also went for an early morning breakfast picnic at Assumption, okay so it was donuts, not a big old breakfast, but it was also 8am on a beautiful day. I love the picture of the kids laying on the blanket and the rays of light just beaming down over them, you can feel the warmth and presence!

Happy Mother's Day! (belated)

4th Annual Charge for CHARGE 5K

Thank you to Lisa W., we have the registration form on a pdf/link that I am able to post here! New location, but hoping for a great day in memory of Joshua, the first to make me Mommy! Happy Mother's Day! Mommy loves Joshy.

Monkeys, karate, fish, and the zoo!

Going back to Arbor Day, April 27 for those non-Arboretum people, we went to where else but the Arboretum to celebrate! Curious George was there as well so we were able to meet up with Auntie Miya, Nathan, Jake, and Grandma for the morning. Of course before leaving Joey insisted we check to see if the tadpoles were there yet, and they were! He also convinced Grandma, Jill, and I to go play on the ropes and bridges. We did some tree crafts (tree cookies so they were called), planted 2 trees in newspaper vases to take home, and we kept running into George! George picked up Joey and Jill's birds that Grandma got them and listened to them chirp which they both thought was really cool. Joey is very into Curious George and he is going to be the theme to Joey's 4th birthday party this summer. We also were able to see the newly installed memory brick that Auntie Miya and Uncle Mark had placed as a memory of Josh. Joey found it right away, and it is perfectly placed! Thank you Uncle Mark and Auntie Miya it is a perfect way to have him with us at one of our favorite places to visit! The next day we went to Andrew's Karate Graduation. Joey had a sign he held in the audience to cheer for his buddy Andrew as he graduated to an orange belt with white stripe...and it was velcro! Andrew was really excited about that! Congrats karate kid! Daddy decided it was time to invest in a real fish tank with a filter and a bit bigger than the goldfish bowl we had before. So we headed to the store to get all the fixings for a nice home for our zebra fish. Luckily they had a 30 day guarantee being a bit stronger than goldfish, because we are currently on round 3, even after bringing in water samples that say the water is just fine. So we may give it another go this weekend with a new filter and our own test kit. Joey and Jill refuse to name any of the fish we have gotten so the names keep being transfered. We've had two fish at a time so their names have been "Hank" and "Nobody." At least the tank has a blue, white, or blue and white light you can turn on so it makes it fun to look and listen to the bubbles! Joey and Grandma also joined me on a very cold, windy, and busy day for a race in Kenosha, they were super troopers for sure, thanks! This past Sunday we hit the Brookfield Zoo with Uncle Mark, Auntie Miya, Nathan, and Jake. Unfortunately we were rained out a little early in the day but we did get to see the dolphin show and had a fun morning with them as well. The pictures don't quite show it, I think the camera comes out and the smiles go away with these 3, but they did enjoy themselves! We will have to try to head back there again sometime soon!