Monday, December 9, 2013
So I am finally starting to catch up on things. I figured before Christmas and Jillian's birthday I better get back to the blog or I will be in too deep! Grab a hot chocolate, coffee or whatever you'd like, but this will take a while. So without further ado, here is the fall in pictures! September 2013: Medieval Times, Uncle Wally's big birthday, 1st day of school, Jessie Dock Diving, apple picking, Joey's first "marathon" (ran many times over the summer to train to finish the last mile of a 26.2 program), painting our dining room, NICU reunion party. October 2013: Goeberts farm, Joey and Andrew's 1 mile S'mores run, GG Joe's 92 birthday, Sonny Acres, Pumpkin carving with Grandpa, Jill's Halloween parade at school, Halloween. November 2013-Dec. 8: Joey earned a stripe on his karate belt, circus, Joey is now in Alpha 1 hockey, putting up the Christmas tree, Joey's new hat (1 of 2 from Auntie Miya!), Jillian got her ears pierced with her Godmother Auntie Trish, Thanksgiving, Tree lighting with the Soles, library open house where they had lots for the kids to do and I was able to check out one of the books that our great friends donated in memory and honor of Josh! I can't begin to tell how thoughtful, sincere, and how lucky I am to have Miya and Mark as our friends/family.
Saturday, November 2, 2013
I know, long overdue. Yes, things are busy, but really do you know how much had been going on in Josh's life at this time? Baptism, surgeries, learning trach care, figuring out life with twins... these months remind me of so much. Josh and Joey both had a blessing in the NICU and before Josh's first surgery, he was baptized. I am so grateful we did that. I was torn on waiting until he left the hospital even though I knew it wouldn't be at the time of Joey's baptism, or doing it in the NICU. Auntie Trish and Uncle Chris came to the NICU, Auntie Trish was in school at the time but came home for the occasion, and the small and personal baptism with Father Tony was like nothing I have ever or will ever experience again. I can replay some his words verbatim. It was a powerful and perfect ceremony. Joey's baptism anniversary was at the end of October, and Josh's homecoming was this first week of November. After 126 days in the NICU he breathed his first breath of outside air, traveled in a car for the first time, met Java, saw his room, his crib, and slept the night with his family under the same roof. It would only be a couple of weeks before he'd need his shunt revision but these days were a glimpse of what it is supposed to be. Even after his shunt revision, which was an adventure all in itself with Phil out of town for work and the stress of an emergency type surgery where Josh would be in the PICU (big boy status-once you leave the NICU you don't return!) for a little over a week, we weren't sure if we'd be home for Thanksgiving. Josh had just returned home at Thanksgiving time, and this time for a much longer time. It was definitely a season of celebrating family, friends, love, and life. Josh's biggest giggles on Christmas morning still can bring tears to my eyes. So many wonderful memories of what my family was, what I wish it could be now, and the blessing I do have today. So for now, yes a post is long overdue, I will get to it, I am dealing with many emotions and memories but will snap back and share the fun we are having today. Josh is still a daily part of our lives, Joey and Jillian talk about him often and are still learning how wonderful their big brother is.
Thursday, August 15, 2013
It was with great, great surprise that we received this award in the mail the other day. We were not able to make it to the conference...something that weighed heavy on my heart to begin with, but I really wish we were there to accept such a great award! The award was sent with a most kind note from the President of the CHARGE Syndrome Foundation acknowledging our efforts the past 5 years. It is things like this that are so unexpected but make things so much more worthwhile. We are so fortunate to be able to remember Josh while helping those in the CHARGE community. Thank you again to all that volunteer, run, walk, and support us in any way, this success would not be possible without YOU!
Monday, August 5, 2013
Joey started karate at the end of June and loves it! After seeing the transformation of our bathroom, the kids had been planning for a while to redo their bathroom with a blue sky, rainbow, and clouds. That later led them to ask for a city with houses, buildings, cars, trucks, planes, trees. We have it all. Sorry I haven't taken the after shot! It is all done and looks great, but here are the workers starting their paint job. One of the really hot days in July we went to the DuPage Children's Museum with Auntie, Andrew, Emma, and Grandma. Joey and Jill (and Java too!)had a fun time pretending to camp out in our family room... Jill had a Storybook Ballet dance workshop where she enjoyed dancing with the bigger girls. Lucky for her she advanced into the next class for 5-7 year olds! She'll have to step it up this fall, but she does love dance. Towards the end of July my great friend Ellen from Australia came to the States and we met at Navy Pier. She went on to Arizona for the CHARGE Conference which we were not able to attend this year, but are very excited that in 2015 it will be in the Chicagoland area! Ellen emailed me from the conference when she found out and I was so excited to hear it would be so close! We had a great time at Navy Pier with Ellen and her cousin, such lovely people. We went on the Ferris Wheel, watched the kids go on a few other rides, and then after parting ways we went on the SeaDog for a somewhat unexpectedly wet, but fun ride on the lake! The last weekend of July we went with Nonna and Grandpa to Arlington Race Track for family days, there were pony rides, a petting zoo, the regular races, and so much more. We had a nice picnic and a great day. What started off seeming cool and possibly rainy, ended up great! The kids loved cheering on the horses and of course Nonna and Grandpa there made it all the more fun! Finally taking us to this morning, Joey and Jillian started their last 3 day camp of the summer: Dinosaur Dig! Here they are before dropping them off, Joey is very into dinosaurs so he was very excited for this camp to start! They both love the camps at the nature center. Joey still has hockey and karate, and Jill is continuing with dance, but this is the last camp of the summer which means things are winding down a bit!
Monday, July 15, 2013
The week before Joey and Josh's birthday was the 5th Annual Charge for CHARGE 5K! We had a great event this year, our volunteers are awesome! We had 108 finishers and many generous donations and I am confident we will hit our goal of $5,000 before the year end! Thank you to everyone who volunteered, participated, spectated, and were a part of this event in big and small ways, every bit is appreciated. I brought the camera, but there was no time to think to pick it up. Here is a link to some pics that were taken by Grandma-thanks! And some others from our neighbor whose son placed 2nd! Great job Joe!
Sunday, July 7, 2013
Hard to believe but our little man turned 5 on July 3! We celebrated in the morning, I brought home some donuts in the morning per request of the birthday boy and we gave him his gift. In the evening we went to Pilot Pete's aka the airplane restaurant with Grandma, Auntie, Uncle Chris, Andrew, and Emma. Joey got some gifts from everyone as well as a birthday song and cake that most everyone but him ate! The next day was the Fourth of July! We went to the parade to watch Gigi doing her gymnastics down the street and Andrew doing some karate moves. I have pics on my phone, and will have to load those up later, but everyone did great--even Auntie and Mrs. Sole who were marching with their stars. Mr. Sole was so kind as to haul the kids in that wagon up the hill to and from the parade. Thank you! The day was warming up quite a bit, just in time for the kids to play in the little pool at Joey's party! Joey had a great birthday, lots of smiles and laughs. Thank you everyone for helping him celebrate!
Here we go again, I'm over a month behind on blogging, so the month in review and in pictures. Summer has been very fun, but very busy. Jill at dance: Joey at Hockey: A combo of hockey and dance, Joey continues to improve his skills and keeps moving up levels! My Grandma and Grandpa's 70th Wedding Anniversary! A visit to St. James Farm with Auntie Miya, Uncle Mark, Nathan, and Jake: Camps started: Joey and Jill loved Nature Camp and can't wait to go back in August, as well as Vacation Bible School! Jill playing soccer! Father's Day: Jillian had her dance recital, this time she did tap! Joey and Jill and swim lessons: We had the 5th Annual Charge for CHARGE 5K last Saturday. I have been getting some pictures from people and will have a separate post about the event soon! But it was a great success and we raised a good amount of money. Thank you everyone! After the race we went to Northlake Days by Auntie Steph and Uncle Don's house. These pictures don't do justice--Joey was on a crazy fast and high swing that even Daddy was scared to be on, and Jillian and Joey both loved the kiddie roller coaster! The day after the race we had a wedding to attend at Wilder Mansion, aka the old Elmhurst Library. It was strange to be in the building that was once our library as kids, looked totally different, but it was a very nice wedding.
Saturday, May 25, 2013
Here is the quick rundown of what we've been up to the last month! I am going to go from most current and work my way back because of most exciting news Joey had his Preschool Graduation this past Wednesday! I can't believe it! As usual there were teary eyes in saying goodbye and moving on. The classes did a great program of songs and poems. Joey wasn't feeling great that day but he managed to make it through the program with a smile! He will be moving to Evergreen next year, but Jillian will still be at this wonderful preschool! The week before graduation we took an early summer vacation! We went down to Nonna and Grandpa's condo for a fun week. First was the plane ride: The next morning after waking up and looking at the birds and fish we headed out to Sarasota Jungle Gardens for a fun day with Florida's finest. After cooling off in the pool in the evening it was off to Daddy's favorite restaurant- Phillipe Creek: The next day was a beach day! We needed this so that we could be ready for our surprise day. We kept telling the kids that we were going to have a big surprise for them on Wednesday. They were good and went to bed when we told them too and woke up without a problem (Jill had a case of croup so this was a big accomplishment!) and were awake and patiently waiting to find out their surprise. The surprise was not Rainforest Cafe as Joey initially thought. We had them look out the front windows and they saw the sign with Mickey and Minnie on it which meant one thing...Disney World! We got there very early- 3 row 4th parking spot, thank you! We took the ferry over and saw the opening of the park and stayed all the way until the very end. No naps, no complaints (again even though Jill was just getting over a bout of croup), they were awesome and lasted the entire day until the ferry ride back for Joey and the last few fireworks for Jill when they hit the wall and were out til the next morning. It was truly a fun and magical day, seeing princesses, riding lots of rides, shopping, and enjoying all the wonder the Magic Kingdom has to offer! The next day was a bit more relaxing again. We went to the Sarasota Car Museum where we saw some very impressive cars including John Lennon's and Katharine Hepburn's cars. We finished the night at Sharky's on the Pier for dinner and walking by the beach. (I was proud of Jill when she showed me her princesses were doing planks and then got down and did one herself!) Our last full day was spent relaxing, going back to the pool that the kids loved, walking around Venice, Siesta Key (which we also did back on Tuesday as well), and then stopping at Historic Spanish Point for a historic hike and then some ice cream! The next day it was flying back home again... In other news on the homefront: We have been redoing our bathroom, and while we don't have a finished product to show yet, here is a glimpse of how it is all going... Some random things we've been doing the past month: riding bikes, visiting the Arboretum while Jill was at Enrichment and going on a tram tour, reading some cool books that had some neat activities to do, lots of misc. things! Wow! That was a lot, I know I need to get better at keeping up with this. It was a busy month for sure and I don't think we are going to slow down anytime soon. I just finished signing the kids up for summer activities! Joey will continue hockey, Jill will continue dance, and they are both doing swim lessons, nature camp, vacation bible school, Joey is going to try karate, and Jill is going to try soccer. Phew--its going to be a full summer, but I feel like now is the time to figure out what they really like to do and then skim back later when we know where their interests are. I know some of you are saying it will never scale back, but its wishful thinking!
Saturday, April 20, 2013
Saturday, April 13, 2013
Yes, once again a lot to update. I left off on March 14, the date Joshua met the Lord. This year, as we have in the past and plan to do in the future, pulled the kids out of school and had a family day. Each year there are more and more questions from not only Joey, but Jill as well. We told them that it was because of Josh that we were able to have the family day going to Rainforest Cafe and Legoland! We first went to Assumption where Joey insisted on bringing a few things for Josh, and Jill followed with a toy of her own. Jill also picked up her "Josh puppy" a puppy that was at his site, but she felt Josh had left for her. Since Joey and Josh usually share cars it was only fair to let Jill share the puppy. So it got a good cleaning, and Jill is taking great care of it. We went from Assumption to Rainforest Cafe one of the kids' favorite restaurants! After our early lunch we headed right over to Legoland! It was the perfect family activity for us that day; some therapeutic building, a couple of rides, and then a 3d movie that maybe pushed it a little too far for Jill. We ended up coming home with a good starter set of Duplo legos and a couple of kits for Joey and Daddy. We spent the rest of the day at our dining room table playing with legos and talking. A couple weeks later it was Easter! We celebrated the day before Easter going to the park district for the Bunny Bash along with Auntie, Grandma, Andrew, Emma, and their Grammy and Papa from NY. They were in for Easter weekend and to celebrate Emma's 3rd birthday! After a bunch of crafts, games, and egg hunt at the park district it was home for naps and then Emma's birthday party. The next morning the Easter bunny came and then it was off to church by Grandma's. After church we headed to Grandma's house to start our ravioli making tradition, color eggs, and stop off to Assumption and then time for the rest of the Easter festivities to begin: dinner, egg hunt, and a visit from the Easter bunny! This past month is always filled with mixed emotions, but we have been doing well and keeping busy. Here are some of the other highlights of the past month: Joey loved playing with energetic Jessie in the snow, Joey also had a blast helping me make some vegan pasta and vegan ravioli. Jill enjoyed it but got bored quickly, Joey recently told me that he wants to be a chef! We planted a root view garden of carrots, radishes, and onions, Jill planted some "I love you" beans that are supposed to say I love you on their first bloom. We went with Andrew and Grandma to dinner at Domo 77 where the boys enjoyed watching the food chopped up and fires going right in front of them! We celebrated Nonna's birthday and then 12 days later mine. Java and Jessie posing for pictures at the end of the night. I did a freezing cold race on my birthday, where we were somewhat misdirected so a refund of our entrance fee and $10 off next race but took some pictures of the frigid day. Just 4 days later we had nice warm weather and were on spring break so we went to Cosley Zoo with Bethany and Lilly. They were so nice to get Joey and Jill hats from their Disney trip, which they both love and wear all the time, and both Joey and Jillian had a blast with Lilly at the zoo and back at home. And then finally last weekend we had Andrew and Emma over for a few hours to play outside, have dinner, and the boys played video games for a little bit while the girls got their nails done and then played their princess matching game. We had Emma and Andrew over for a while so that Auntie and Uncle could have some time to do some last minute packing. Which takes us to today...the movers are at their house and packing up! Moving weekend is here for them!
Thursday, March 14, 2013
Monday, February 18, 2013
Yesterday Uncle Kevin and Auntie Nicole got married! Joey was honored to be a ring bearer and took his job seriously for the ceremony and then let loose on the dance floor at the reception! The day started getting to the hotel at 12:30 where the guys got ready, ate a bit, and took pictures as did the bride and her bridesmaids. The rest of us were hanging out in the lobby taking pictures and getting ready for the big day. Then it was time for the wedding! Post wedding pictures and getting ready for the reception. And the fun reception where Uncle Mikey gave a great speech, as well as others, a fun picture slide show (Thanks for including a picture of Josh, that meant so much!), great food, photo booth fun, dancing, and so much more! Congratulations Uncle Kevin and Auntie Nicole (and Amelia too!), we are so happy for you guys!
Sunday, February 17, 2013
Some exciting news is that Joey is going to be in Uncle Kevin and Auntie Nicole's wedding today! So before we get snap happy with pictures tonight I thought I should put some of the pictures from the last month or so of things we have been doing. Many post Christmas exchanges and gatherings. Here are some with the Miklautsch family and the Wayman family. A while back I started a fancy dinner night for our family: candles lit and china dishes out. This particular night we even added sparkling grape juice for the kids, but neither of them liked it. Oh well, it was leftover from the holidays but I guess that's why we still had it-no one else wanted to drink it either! Joey and Jillian both earned their allowance and decided they wanted to use their money to buy some crafts so a week or so back we had a craft day. And here are some pictures of Joey and the rest of the wedding party at the rehearsal. Joey got his own 99 Riches hat and shirt with is name on it (Uncle Kevin's side job clothing line for "No Wasted Talent"). Joey is quite excited for today! Can't wait for the wedding!
Friday, February 15, 2013
Yes, it has been a while since I last blogged. I can come up with a million excuses: we have been very busy, enjoying so many gatherings with friends, family, other activities. But really that's not it, it is just hard. It has been hard. Grief ebbs and flows, it is never quite in the background, it is always there, but Christmas time and being with family, watching Joey and Jill's eyes light up in wonder is priceless. Jillian's birthday is a reminder of God's grace, just like her middle name. But once it's all come and gone I can't escape with fun festivities I have to face the fact that it is my winter time. It is not the seasonal affective disorder or winter blahs I'm talking about, but the anxiety of facing another year without Josh, of realizing time is moving on. I don't want time to move on, I want to go back. I want to hold Josh, I want 3 kids in my arms, in my house, as my responsibility. I don't want to be faced with the 4th anniversary--seriously where does the time go--without having Joshua. I know it is not in my control, I know that God is in control, Joshua is in His house and I have to do the best I can with the blessings I have been given. A few weeks back I was asked by my boss to take on an account that would not be permanent but was an account that I was asked to do so the company would have some growth that they felt only I could help them with. It was a huge compliment and on top of that it would be a good chunk of change as well. However it would have changed schedules significantly for 4 months and I was forced to figure out what to do. My boss even offered her sister up to watch our kids, again a huge compliment to know that they felt so strongly about the work I do, but I had to sit down and put pieces back together. I wake up at 4:15 most mornings to go to work and then go back to work in the evenings sometimes until after 9 so that I am able to be with my kids. Before having kids I thought I would never be a "stay at home mom," and even though I work more than 20 hours a week I still categorize myself as such, but I realized I wanted to be there as much as I could until they were in school for a full day. I had to stop, realize what I was trying to do, of course discuss to exhaustion and then revisit a new set up scenario with Phil who was so patient and understanding with it all, but I had to go full circle to realize why I am doing this. I had to think about driving down to the city again, the same route I took to change shifts with Phil as to who was at Josh's bedside. To this day I can't cross the bridge on 290 going into the city without getting a lump in my throat and a drop in my stomach. Whenever I've ran past Children's in the Chicago marathon after I had Jill, and the half marathon 2 years ago I get teared up and choked up to the point where I'm not sure if I can run and breath anymore. Well, like everything else things change. Children's is now gone and the new hospital is now up. I'm still not sure how I feel about that. In the past I have told you that we are on the Family Advisory Council for CDH. They are working on building a Ronald McDonald House across from CDH and our last meeting was providing information, feedback and experiences as NICU and PICU families. We spent many nights at RMHC in the city. Another place that I wanted to go back to and cook meals for the families living there, but physically getting there was an emotional obstacle. Now I will have the opportunity to do more for families in similar situations as us and I am very grateful for that. Again, that meeting brought so many feelings positive and negative back about the last few weeks of Josh's life and how our life as a family was at that time. All to be done over again in a heartbeat I can guarantee speaking for myself, Phil, and Joey. As the new year begins, I have been preparing for the 5th Annual Charge for CHARGE 5k. That's right, 5th, again a milestone, something telling me that time is moving quite quickly. With this "winter" holding heavier in my heart this year I am so grateful that Miya is helping me with so much of the 5k and it means so much to know that she cares and of course I am grateful that her personality matches mine in terms of perfectionism! We already have registration online if you are ready to sign up for the 5k on June 29! A heavy heart also with knowing that we are not going to the CHARGE conference this year. Something we have struggled with, but have decided not to do this year. I feel like it is slipping away from the CHARGE community, although I am so excited that Ellen will head our way from Australia and visit when she is in the US for the conference! Ellen mentioned she would like to go to Assumption and let a balloon with a message go, as well as visit Crystal's resting place. I think this would be so wonderful, so thank you for that Ellen!
Another mystery, and something I am not ready to speak about but want to have here as reference if not only for myself is Simply Thick. I don't mean to leave it at that, but I have to at this point.
I have mentioned in the past as well that I am particularly comforted by the fact that Josh passed during the lenten season. More than Christmas I love the readings and gospels around Easter. It is a huge comfort to me to hear and I feel it is "safe" to shed a tear at church if I need to. It helps me to get through the next month knowing that Joshua is safe in the arms of God and that God's, and lent being a time for self denial, soul searching and spiritual preparation I feel like I can accept and even be grateful for all circumstances.
Thank you for allowing me to get some things off my chest. I felt like I had been neglecting the blog, and even looking back it had turned into just posting pictures. It does not mean that more hasn't been happening, and I really don't want to let the "Joshua's Journeys" posts slip away like I feel a lot of other things are, but the fact of the matter is there is still pain, grief, desire, despair, and disappointment that I work through every day. But I don't want time to slip away and not post memories or thoughts, but there is no control over time and It's Been A While...
Saturday, January 26, 2013
After Christmas and Joey and Jill's share of croup, we were ready to celebrate Jillian's 3rd birthday! We almost had to cancel her party, but since most people were going to be coming no matter what, and she had a good 2 days worth of medicine, her croup was caught early, and she was already feeling better just a bit more tired than usual, we went ahead with her birthday party. The day before her birthday and party Grandma stopped over to bring Jill her present a day early...a bike! The next day was Jill's real birthday! We had her My Little Pony party and outside being a little tired during presents Jill did really well and enjoyed playing with and entertaining her guests. And the next day was New Year's Eve which we celebrated at Pilot Pete's: dinner and a countdown on the hour, which we got to countdown to "midnight" twice! Joey, Jillian, Andrew and Emma had a great time, as did the rest of us. We even got pomegranates as we left, apparently good luck for the new year-who knew? But I have had some great pomegranate smoothies because of it, yum!