This is the holiday letter that I sent to CHARGE families in our Christmas card exchange. I thought it summed up Joshua's year in a positive way. Joshua is doing so much from above that we cannot see, but know that his hand is in a lot of the joy we have, here is just a small example.
Season's Greetings!
2009 was a very bittersweet year for our family. Last Christmas we were overjoyed having Joshua (CHaRGE) and Joey home with us. Joshua smiled and laughed his biggest Christmas morning giving us the best gift of all.
January we took Josh and Joey's 6 month pictures, and celebrated with a half cake! Josh had a bronchoscopy to see if we could start weaning him from his trach. No luck at this point, but we were optimistic.
In February Josh received his hearing aids, which made him look so studious. Unfortunately Josh also had some sort of infection where he was admitted to the hospital. He was here for a fairly long stay, and in the beginning part of March we moved into the Ronald McDonald House to be closer to Josh at the hospital. Josh was discharged, but readmitted just a few days later. On March 14, Joshua earned his angel wings and went to heaven at just 8 1/2 months. We have been so blessed to have him in our lives and have learned more than we ever could have imagined about life, love, and this wonderful CHARGE family.
In April, we decided to continue Josh's memory and share his stories on our blog through "Joshua's Journeys." We recall memories, procedures, and many pictures of his life here on earth. Our neighbors got together and had a tree planted in the park behind our house for Joshua and a placard with his name. It didn't take Joshua long to whisper into God's ear...we found out early this month that we were going to be expecting another baby!
July was the celebration of his and his twin brother Joey's first birthday. We were delighted to have another CHARGE family help us celebrate (thanks Crystal and Eva!) and remember the life of Josh. Later in the month we attended our first CHARGE conference, an experience we will never, ever forget. It was so comforting and heartwarming to meet so many CHARGE families and hear their wonderful stories, and see how far they've come. We left the conference feeling like we had not lost Josh, but gained a whole new community of friends.
August 1 was our Inaugural Joshua Kurby Charge for CHARGE 5K, a 5K run/walk that we started in memory of Joshua, to raise funds for the CHARGE Syndrome Foundation, and to raise awareness in our community about CHARGE. The race was quite a success and we are excited to see the turnout this year!
In September Josh was remembered at Crystal's Bowling for CHARGErs fundraiser. She put together a beautiful picture montage to remember Joshua as well as another CHARGE chile that had passed, and to honor her beautiful daughter Eva. It was a fun day of bowling, raffles, food and drinks, and spending time with other CHARGE families. Another great event!
October we went back to CDH for their annual NICU party. Joey decorated a pumpkin for Josh, and we visited with many of the families that we met during Josh's 126 day NICU stay. We caught up with some of his therapists, nurses, and doctors, while still having time to eat, dance, and play in the bubbles!
Now we are anticipating the holiday magic, reliving many moments with Joshua, and awaiting the arrival of his little sister, Jillian Grace, due in December. We hope you have a blessed, healthy, and happy holiday season. We thank you for all that you share with us. Merry Christmas, and Happy New Year!
The Kurby Family:
Phil, Sandy, Joshua (8 1/2 month CHaRGE angel), Joey (17 month surviving twin), and expecting Jillian Grace--now here!
Thursday, December 31, 2009
Wednesday, December 30, 2009
Jillian Grace
Just a quick post to let you know that Jillian Grace Kurby was born this morning at 8:24 a.m., weighing 7 pounds, 10 ounces, and length of 19.5 inches. She came out crying, and is doing very well, along with the rest of the family. We will be updating more later on!
Love,
The Kurby Family
Tuesday, December 29, 2009
Joshua's Journeys #26- The Christmas Gift
I received the absolute best, not to ever be topped Christmas gift from Phil and Joshua. Christmas morning I opened up a gift from Josh that means more to me than any tangible thing. Phil had taken 2 of Joshua's sweaters and had them made into a hat for me. This was no easy task for Phil, since I have Josh's things very organized and look at them often. He was wise not to take certain clothes, but chose just the right ones. He looked up many seamstresses in the area, out of area, and consulted an expert on the internet as well who was the one to help him with patterns and suggestions as to how to go about things. Phil had to find out where Josh's clothes were being kept and then get them in some order so I wouldn't know anything was missing. He had mentioned to me that he had a really great gift for me this year, and I couldn't even begin to imagine how true that was. From the day he received the hat he was trying so hard to wait for Christmas to give it to me. His efforts to get this hat made for me were above and beyond anything I could've imagined. He mentioned he was worried that I would be mad for ripping up some of Josh's clothes, but he wanted to make something useful and something that would keep me warm. He succeeded beyond words. The hat is the most perfect gift: it reminds me of Joshua all snuggled up with me, as I wear it out I am reminded of all the trips him and I did together bonding in many of waiting rooms, it keeps me warm thinking of his smile, his eyes, all the great memories with Joshua, and the love of a wonderful husband that makes all my dreams come true.
Monday, December 28, 2009
Sledding Birthday Party
January 4th is Auntie Christy's birthday, but we celebrated yesterday since baby Jillian arriving Wednesday and might be home for her first day or two on the 4th. Sorry Auntie, that we had to celebrate so early, but we were also celebrating the fact that you, Uncle Chris, Andrew, and Baby G made it back home safely from New York on Saturday after a long wait at the airport. While they were away we had quite the snow storm, so Joey put on his new snow suit from Nonna and Grandpa and we went by Auntie Christy's for a little "sledding" in the driveway. We headed back inside to warm up with some hot chocolate and celebrate Auntie Christy's birthday!
Merry Christmas!
Joey had a great Christmas. Christmas Eve was spent at Nonna and Grandpa's house along with Auntie Steph, Uncle Don, Uncle Kevin, Uncle Mikey, and Auntie Marie. After dinner and presents Joey put on his poker face and was up late having fun with everyone! You wouldn't have known that it was past his bed time, he was having so much fun playing cards and having a great time.
Christmas Day was celebrated waking up to see that Santa had eaten the cookies, and drank some milk that was left out for him. Joey actually took the leftover cookie and ate it as he walked around the family room looking at the gifts that Santa left. Grandma was over just before Joey woke up, so she was able to see his reaction too. After breakfast and playing with new toys we got dressed and headed to church, Assumption (the cemetery), and then back home for a nice dinner. It was another long day for Joey, but he did really well.
Christmas Day was celebrated waking up to see that Santa had eaten the cookies, and drank some milk that was left out for him. Joey actually took the leftover cookie and ate it as he walked around the family room looking at the gifts that Santa left. Grandma was over just before Joey woke up, so she was able to see his reaction too. After breakfast and playing with new toys we got dressed and headed to church, Assumption (the cemetery), and then back home for a nice dinner. It was another long day for Joey, but he did really well.
Tuesday, December 22, 2009
Continuing the Holiday Festiviites...
Again, here are a few different days of activities...
Sunday we were at a holiday gathering at our neighbors (see the Joshua's Journey in the previous post) where we had a surprise baby shower for Jillian, and were able to celebrate the season with great friends. Joey enjoyed playing with Nicole, and after really warming up to her did not want to leave her side. He kept grabbing her hand and walking her to see Dakota (their German Shepherd) and playing catch with her ball.
Saturday we had Christmas at Grandma's house since this year Auntie Christy, Uncle Chris, and Andrew are heading up to New York to see Uncle Chris' family. It was very fun night filled with an excellent dinner, great company, and holiday atmosphere. Joey and Andrew were excited about opening their first gifts, but then would rather play than open other gifts.
The highlights for Joey were getting a kitchen from Auntie Christy, Uncle Chris, and Andrew. He loves eating the plastic food, and pretending to prepare meals. He even tries to warm his sippy cup in the microwave! Grandma got Joey a fun play set that has 2 tunnels, a clubhouse, and a tent. We set it up for Joey and he loved it! He went right into the tunnel, and has been having a blast in the tent. Java has even taken an interest in the tent, but hasn't made it through the tunnel yet. Thanks for a memorable evening and of course way too many gifts!
On Friday we had another good snow, so we all bundled up to head outside and shovel. Joey did help a little bit, but was still more interested in getting his basketball out of the garage to throw around. After working in the front, we went into the backyard for Joey and Java to play together. Joey kept falling, having a hard time being mobile in the snow, but he enjoyed watching Java race around the yard and catch snowballs in her mouth.
Wednesday night will be the last night I teach a fitness class before Jillian is born! Yes, I still have been jumping around teaching classes. After being on bed rest with Josh and Joey for 13 weeks I wanted to keep doing as much as I could, and I never had any restrictions this whole pregnancy...so different from last time! I don't have any pictures, because it was another surprise, but my 5:30am class that I teach (AM Challenge) at the Park District also threw me a shower at 6:15 in the morning! They brought in juice, cookies, and a bunch of adorable outfits and an angel bear for Jillian. It was another big surprise. So thoughtful, and such a fun group of people. I will miss them the next 6 weeks while I am on leave, thank you!
Finally, we had to put in some pictures for Uncle Mikey...the biggest Sox fan we know! Joey is excited to see him on Christmas Eve so he wanted to put on his Sox outfit in anticipation.
Sunday we were at a holiday gathering at our neighbors (see the Joshua's Journey in the previous post) where we had a surprise baby shower for Jillian, and were able to celebrate the season with great friends. Joey enjoyed playing with Nicole, and after really warming up to her did not want to leave her side. He kept grabbing her hand and walking her to see Dakota (their German Shepherd) and playing catch with her ball.
Saturday we had Christmas at Grandma's house since this year Auntie Christy, Uncle Chris, and Andrew are heading up to New York to see Uncle Chris' family. It was very fun night filled with an excellent dinner, great company, and holiday atmosphere. Joey and Andrew were excited about opening their first gifts, but then would rather play than open other gifts.
The highlights for Joey were getting a kitchen from Auntie Christy, Uncle Chris, and Andrew. He loves eating the plastic food, and pretending to prepare meals. He even tries to warm his sippy cup in the microwave! Grandma got Joey a fun play set that has 2 tunnels, a clubhouse, and a tent. We set it up for Joey and he loved it! He went right into the tunnel, and has been having a blast in the tent. Java has even taken an interest in the tent, but hasn't made it through the tunnel yet. Thanks for a memorable evening and of course way too many gifts!
On Friday we had another good snow, so we all bundled up to head outside and shovel. Joey did help a little bit, but was still more interested in getting his basketball out of the garage to throw around. After working in the front, we went into the backyard for Joey and Java to play together. Joey kept falling, having a hard time being mobile in the snow, but he enjoyed watching Java race around the yard and catch snowballs in her mouth.
Wednesday night will be the last night I teach a fitness class before Jillian is born! Yes, I still have been jumping around teaching classes. After being on bed rest with Josh and Joey for 13 weeks I wanted to keep doing as much as I could, and I never had any restrictions this whole pregnancy...so different from last time! I don't have any pictures, because it was another surprise, but my 5:30am class that I teach (AM Challenge) at the Park District also threw me a shower at 6:15 in the morning! They brought in juice, cookies, and a bunch of adorable outfits and an angel bear for Jillian. It was another big surprise. So thoughtful, and such a fun group of people. I will miss them the next 6 weeks while I am on leave, thank you!
Finally, we had to put in some pictures for Uncle Mikey...the biggest Sox fan we know! Joey is excited to see him on Christmas Eve so he wanted to put on his Sox outfit in anticipation.
Sunday, December 20, 2009
Joshua's Journeys #25- Neighbors
When we moved to our house 4 1/2 years ago we didn't move into a neighborhood, we moved into an extended family. Our neighbors are some of the kindest, most caring people we have ever met and we are so blessed to live in such a small radius of these amazing people. The day we moved in we were greeted with banana bread, brownies, lasagna, and champagne from people that lived in the houses directly next to or across from us. We thought it was a nice gesture, but thought it would end up being a relationship we had growing up with our neighbors, just that- neighborly. Our neighbors are much more to us. They truly are an extended family.
We have celebrated Christmases, Easters, birthdays, Mom's night out, summer nights, and more together and they have been there for us through some of our best and worst of times. Tonight we got together for a holiday party, and after a while Linda asked Phil and I to sit on the ottoman and we were pleasantly surprised with a baby shower! It was so sweet and very unexpected. And it the first baby shower of mine that I attended! When I was pregnant with Josh and Joey I was put on bed rest and told by my doctors not to attend my shower because of the fragile state of the pregnancy. So I stayed home and put on a skirt to feel like I was a part of the shower, while Phil had to entertain the ladies on his own. I knew the shower was over when there was a knock on the door followed by my neighbors coming in to cheer me up and make me feel a part of the party. They also put together a magnificent basket of things for me to do, pamper, read, and pass the time with while on bed rest. They have always been there to offer help in any way. When Josh was in the NICU for 126 days, they never tired in asking how he was, offering babysitting for Joey, or just talking. After Joshua came home from the NICU they came over to celebrate his homecoming; holding him, meeting him, and accepting him. When Joshua passed, they rotated making meals for us and made sure we were doing okay. They had the tree planted in the park behind our house with the plaque for Josh so that we can look out our kitchen window and be comforted. They have never been afraid to mention his name. Even the kids paint pictures and talk about Josh which warms our hearts to no end.
Thinking about bringing Josh to his resting place brings back many, many powerful memories. One image that I will never get out of my head is one from the church when we were leaving. After the funeral mass, Phil, Joey and I had settled into the limo and were waiting for the procession to the cemetery to begin. Outside of the church, watching the cars line up were our neighbors standing silently. Seeing them all shoulder to shoulder lined up on the sidewalk portrayed so perfectly the strength, love and support that a family has for one of its members. Thank you for taking us as a part of your family.
(some pictures are of Joey)
We have celebrated Christmases, Easters, birthdays, Mom's night out, summer nights, and more together and they have been there for us through some of our best and worst of times. Tonight we got together for a holiday party, and after a while Linda asked Phil and I to sit on the ottoman and we were pleasantly surprised with a baby shower! It was so sweet and very unexpected. And it the first baby shower of mine that I attended! When I was pregnant with Josh and Joey I was put on bed rest and told by my doctors not to attend my shower because of the fragile state of the pregnancy. So I stayed home and put on a skirt to feel like I was a part of the shower, while Phil had to entertain the ladies on his own. I knew the shower was over when there was a knock on the door followed by my neighbors coming in to cheer me up and make me feel a part of the party. They also put together a magnificent basket of things for me to do, pamper, read, and pass the time with while on bed rest. They have always been there to offer help in any way. When Josh was in the NICU for 126 days, they never tired in asking how he was, offering babysitting for Joey, or just talking. After Joshua came home from the NICU they came over to celebrate his homecoming; holding him, meeting him, and accepting him. When Joshua passed, they rotated making meals for us and made sure we were doing okay. They had the tree planted in the park behind our house with the plaque for Josh so that we can look out our kitchen window and be comforted. They have never been afraid to mention his name. Even the kids paint pictures and talk about Josh which warms our hearts to no end.
Thinking about bringing Josh to his resting place brings back many, many powerful memories. One image that I will never get out of my head is one from the church when we were leaving. After the funeral mass, Phil, Joey and I had settled into the limo and were waiting for the procession to the cemetery to begin. Outside of the church, watching the cars line up were our neighbors standing silently. Seeing them all shoulder to shoulder lined up on the sidewalk portrayed so perfectly the strength, love and support that a family has for one of its members. Thank you for taking us as a part of your family.
(some pictures are of Joey)
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