Thursday, December 31, 2009

Joshua's Journeys #27- A Year in Review

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!

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!
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.

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 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)

Thursday, December 17, 2009

Let the Celebrations Begin!

Sorry to be posting so late, last weekend started our holiday celebrations with friends and family. We were not as good as we could've been with taking pictures, we'll have to remember that as the festivities continue on the next week. On Saturday we celebrated Christmas with Uncle Paul, Auntie Katherine, Ben, Abbey, and Juliette. Juliette is already 4 months, I can not believe it! Joey and Abbey played well together. Unfortunately the only pictures I have are of Joey and Abbey playing with his gift- a blender which has become his new favorite toy!

Sunday morning we went to breakfast with Auntie Pam, Auntie Trisha, Auntie Christy, Andrew, and Grandma. Auntie Pam, Auntie Trisha, and Auntie Tiffany (who we missed that day) updated our holiday decorations with Jillian's name. Last year they made the cutest advent calendar of Santa with Joshua and Joseph's names on it, as well as a Santa plate and cup for milk and cookies. They added Jillian's name to complete and they look perfect, thank you! Joey had a fun time playing with Auntie Trish's lotion, pretending to put it on everyone's hands. I think he's seen mommy put on hand sanitizer a little too often. (During his diaper changes he reaches for the sanitizer and rubs his hands together.) That afternoon we went by Nonna and Grandpa's to celebrate Aunt Brooke's graduation from her PhD in psychology. Again we were negligent with the camera, but Joey had a fun time with everyone. Congrats Aunt Brooke.

Tuesday night was the night we headed to the mall to see Santa. Not sure how Joey would do, Andrew braved the bearded man first. He was pretty hesitant and was clinging to his mom pretty well, but at least they got a good picture out of it. Joey on the other hand did not do so well. The video is great, but we only got one picture from the ordeal. Waiting in line Joey was having fun looking at the lights and decorations. He even watched Andrew sit on Santa's lap and didn't seemed phased by it. After Andrew was off, Joey ran up to Santa, bypassed him and went straight to his bag to take a look inside. Mommy picked him up to plop in on Santa's lap, but Joey grabbed on with all his might, hands, feet, head, he was not letting go. He was screaming and crying the whole time. Mommy had to hold him and sit next to Santa. In order to unwind from the traumatic moment, Andrew and Joey played in the play area of the mall for a little while.

Sunday, December 13, 2009

Joshua's Journeys #24- Always missing you...

I know many families and friendships that appear to have been broken up by a child with a disability or death. I say appear because it is very obvious when you are caring for a child with special needs, or grieving the loss of a child who your true friends and family are; those that don't go when the going gets tough, but are there no matter what. Thank you to those that have proven themselves our true friends and family, that support and love us, for we all have special needs. I come across a lot of poems, prose, blogs, letters, etc. on losing a child, special needs children, and so on. Each hit me in different ways, but I felt the need to post these today. In addition, I learned this morning of a 15 month CHARGEr that passed away on December 3, we are praying for the friends and family of this new angel to find some comfort and peace.

Chosen One
If before you were born, I could have gone to Heaven and saw all the beautiful souls, I still would have chosen you...
If God had told me "this soul will one day need extra care", I still would have chosen you...
If He had told me "that one day this soul may make my heart bleed", I still would have chosen you...
If He had told me "this soul would make me question the depth of my faith", I still would have chosen you...
If God had told me "this soul would make tears flow from my eyes that would overflow a river", I still would have chosen you..
If He had told me "our time spent together here on Earth could be short", I still would have chosen you...
If He had told me 'all that you know to be normal would drastically change", I still would have chosen you...
Of course, even though I would have chosen you, I know it was God who chose me for you...
Thank you God for allowing me to be your mommy!

A Letter from Above
Dear Mom and Dad,

I know this is a rough time for you. So I will be as gentle as I can be. First of all, thank you for so many tears, particularly those shared with another that you love. They are a gift to me, a precious tribute to your investment in me. As you do your mourning, do it at your pace only. Don't let anybody suggest that you do your grief work on their timetable. Do whatever it takes to face directly the reality of what has happened, even though you may need to pause frequently and yearn for my return. Do this with courage and my blessings.

Be with people who accept you as you are. Mention my name out loud, and if they don't make a hasty retreat, they're probably excellent candidates for friendship. If, by a remote possibility, you think that there is anything that you could have done for me and didn't, I forgive you, as my Lord does. Resentment does not abide here, only love. You know how people sometimes ask you how many children you have? Well, I'm still yours and you are still my parents. Always acknowledge that with tenderness, unless to do so would fall on insensitive ears or would be painful to you. I know how you feel inside. To be included as your child honors me. Read, even though your tears anoint the page. There is an immense library here and I have a card. In Henri Nowens' "Out of Solitude", he writes, "The friend who can be silent with us in a moment of despair and confusion, who can stay with us in an hour of grief and bereavement, who can tolerate not healing, and face with us the reality of our powerlessness, that is a friend who cares." Mom and Dad, I don't know where you are spiritually now, but rest assured that our God is not gone. The still small voice you hear in your heart is His voice. The warmth that sometimes enfolds you is Him. The tears that tremble just beneath your heartbeat is Him. He is in you, as I am. I want you to know that I am O.K. I have sent you messages to ease your pain, they come in the form of flowers that bloom out of season, birds singing, voices and visions and sometimes through your friends and even strangers who volunteer as angels. Stay open but don't expect the overly dramatic. You will get what you need and it may be simply an internal peace. You are not crazy, you have been comforted. Please seek out people bereaved longer than you. They are tellers of truth, and if they have done their work, are an inspiration and a beacon of hope whose pain lessened dramatically. And one more wisdom before I close. There are still funny happenings in our world. It delights me to no end when I hear your spontaneous, uncontrolled laughter. That, too, will come in due time. Today, I light a candle for you. Joined with your candle, let their light shine above the darkness.
Your Angel Child

Tuesday, December 8, 2009

Let It Snow, Let It Snow, Let It Snow!

We've had some snowflakes here and there, but today there was a good amount of snow on the ground so Joey bundled up, grabbed his new shovel (it was going to be a Christmas gift, but for the sake of chores we gave it to him early!), and headed out the door to help shovel! Last year Joey was not very interested in the snow at all, he just sat with Josh in his snowsuit and starred, then cried. This year was much different. First off, Joey loves his boots (thanks Andrew!) so a chance to wear them is always welcome. He was really interested in the shovel and helping do what Mommy was doing so he only complained when he dropped the shovel and couldn't quite pick it up with his mittens on. After a while he decided playing with his basketball was a bit more fun. After a mitten change and playing for a while in the snow, Joey took a little spill in the snow, lost his glove, and got a little wet so he was done for the day. We came in, changed into warm, dry clothes, had some milk, and it was naptime!

Joey's First Haircut

Joey finally got his first haircut yesterday (12/7/09)! Unlike Josh, Joey has always had pretty short, fine hair. Some pictures he even looked bald for a while. His brown hair from his baby days changed into more of a blonde color for now, and they were hanging over his ears, and he was getting some curls in the back that were getting longer and longer. So it was time for his first cut!

We were so lucky to have Linda cut Joey's hair. A friendly, more familiar face is always a good thing for a baby getting their haircut, and boy did she give him the royal treatment! She had so many new and exciting toys for Joey to play with, and even let him play while she cut his hair. He did really well because of her magic touch. Joey didn't even flinch when the razor came out. After the cut Linda took him to the mirror to check out the new 'do, and play with some of the other pampering and primping tools. Then it was back to being a boy...he headed upstairs for a cracker and to see Dakota (their German Shepherd that Joey still wanted to call Java). Joey looks like such a little boy now, without the baby curls. Thanks Linda for a great cut, and a fun time!

Joshua's Journeys #23 Snow Day

Last year, December 6 we had our first big snow. I made it a point to have Josh do everything other kids would be doing. Josh definitely had his share of being out in the elements since by this time we were out to at least 2 appointments most days, but it was snowing out for the first time since Josh and Joey were born so what else was there to do but to bundle them up and toss them in the snow for a little while! So that was exactly what we did! It was very short lived, Joey was crying more than Josh, but I think the brightness of the snow was more bothersome to them than the cold or wetness of the snow. They enjoyed watching Java play, but pretty much just sat there and watched.

Tuesday, December 1, 2009

Deck the Halls

We have been slowly putting up Christmas decorations, before Thanksgiving most decorations were up, but Sunday we finished putting up our Christmas tree. Joey was napping for the beginning part, but did help put the lights, garland, ornaments, and of course the star on the top of the tree. When he first woke up and saw the tree he kept pointing at it saying "Whoa!" He has been very gentle with the ornaments and lights so far. He has only grabbed one off that of course looked like a ball and threw it, but luckily it was an unbreakable ornament! He loves looking at the ornaments that are down at his level and every morning when he first walks in the room he still says "Whoa!" I think he likes it! Every night before he goes to bed he does the same thing I used to do when I was younger (ok, and still do every year) which is lay under the tree and stare at all of the lights. It is so fun to see the wonder in his eyes.

Joshua's Journeys #22- Rockin' Around the Christmas Tree

As we have been putting up Christmas decorations and listening to Christmas music I stop and smile each time I hear the song "Rockin' Around the Christmas Tree" the oldies version. Last year when we had both boys home we would often have dance parties in our kitchen. Daddy and I would take our turns with each of the boys dancing around, singing, and being goofs. We weren't sure initially of Josh's hearing, so it became important for me to play music and dance so he could feel the rhythm and the beat of the music. Once we found out he had profound hearing loss in both ears I was glad that we had already taken steps to allow him to feel vibrations, understand balance (or lack there of) with movement, and just enjoy family time. Some of our best memories are the five of us (Java was always there jumping around too) dancing in the kitchen together.