Joshua's Journeys #32 March Madness

As I have been doing Joshua's Journeys I have been recalling some of the events that happened on those days last year. Of course so much more happened, more appointments, more milestones, more fun and love than I could ever blog about, but that is why I hope to continue Josh's Journeys for years to come. I will never be able to put down in words all the great moments we have experienced with Joshua. I noticed in January I started having a hard time blogging about his bronchoscopy, it was the first time I had taken Josh to Children's and where he would take his last breath on earth. I have been dreading the month of March, knowing the anniversary of his passing is approaching. While I think of and reminisce about Josh more often than you could fathom, I have been very anxious and apprehensive about this month. Like I have mentioned in Josh's Journeys in the past I have talked about things that had happened last year on the same date this year, but as the days get closer to I realize I cannot and do not want to discuss the events of Josh's passing. I know everyone has questions about it. Only Josh, his mommy, and daddy know the horrific events of the night/early morning hour that he passed. Even the doctors found themselves dumbfounded. We have never shared the details of that night with anyone, there are way too many emotions, vivid images, and heartache that may never heal from that night. Over the years I am sure many things will come out from the days leading up to his passing, but we may never be able to share the last intimate moments with Josh. I will say he was surrounded by love, we prayed over him within seconds of his last heart rhythm, and we have learned how to have a relationship with him that grows even though he is not here on earth. We have constant reminders when we look into the eyes of Joey (knowing a part of Joey is in heaven) and Jillian (knowing a part of her was sent from Josh). We love you Joshy and can't wait to be reunited as a family again someday.

Here is a song by Steven Curtis Chapman who unfortunately knows about losing one of his children. He lost his daughter in February and had kept a journal which he later turned into an album. The whole album hits home for me, but this song and "Beauty Will Rise" are the two I love the most and remind me of Joshua the most.

Heaven Is the Face
Heaven is the face of a little girlWith dark brown eyes that disappear when she smiles
Heaven is the place where she calls my name, says "Daddy please come play with me for a while."

God, I know it's all of this and so much more,
but you know that this is what I'm aching for
God you know, I just can't see beyond the door,
So right now,

Heaven is the sound of her breathing deep, lying on my chest falling fast asleep while I sing.
And heaven is the weight of her in my arms, being there to keep her safe from harm while she dreams.

And God I know it's all of this and so much more,
but God you know that this is what I'm longing for
God you know I just can't see beyond the door

But in my mind's eye I can see a place where your glory fills every empty space.
All the cancer's gone, every mouth is fed, and there's no one left in the orphan's bed
Every lonely heart finds their one true love, and there's no more goodbye, and no more not enough
And there's no more enemy, no more

Heaven is a sweet maple syrup kiss, and a thousand other little things I miss with her gone
Heaven is the place where she takes my hand and leads me to You, and we both run into Your arms

Oh, God I know it's so much more than I can dream, it's far beyond anything I can conceive
So God, You know, I'm trusting you, until I see
Heaven in the face of my little girl
Heaven in the face of my little girl

Ben Turned 4!

Our good friend Ben turned 4 on February 15. Sunday was his birthday party and Joey had a blast! The party was at Pump It Up and Joey had a great time climbing, sliding, bouncing, and partying. It took him a bit to warm up to some of the mazes and bouncies, but he had a great time. Joey has been teething and has one molar now and is working on another. He is a little out of order on which teeth should be coming in, so he had a little bit of a hard time trying to get this one to cut through, but he is doing better now. The party definitely helped take his mind off of his teeth and have some fun. He really enjoyed going down the big slide with Daddy, and of course playing with his crush Abbey! Ben's Aunt Teesa (Theresa) made a very impressive Lightning McQueen cake (from the movie Cars). It was great party, thanks for a fun day, and Happy Birthday Ben!

Joshua's Journeys #31- Birthday Party

Last year at this time Josh experienced his first kids' birthday party. Josh and Joey went to Ben's 3rd birthday where there were lots of kids running around and playing. Initially we were apprehensive about bringing Josh since there'd be so many kids and it was still cold and flu season, but we also wanted Josh to experience everything that Joey and any other kid could. Josh had a great day! He didn't have to be suctioned once during the entire party, he was very content watching the bigger kids play, and being held and loved while he took everything in. It was a great day to be out as a family. Thank you Ben for having Josh at your party!

Online Registration Now Open!

The 2nd Annual Joshua Kurby Charge for CHARGE 5K registration is now open online! Please go to www.signmeup.com/68848 (this should work this time!)to register and pass the word along! Once processed at CARA (Chicago Area Runner's Association) there will be a link there as well. If you would like to volunteer please let me know! Again the date is August 14, 2010 8:00am start!

Valentine's Day and Swimming

For Valentine's Day we dressed Jillian up in her tutu that a few of my fitness class participants got for her as part of my shower gift. It was hard not to look at Jillian and laugh or smile.


Last weekend Joey tried out his water legs and went in the pool with Daddy for his first Parent-Tot Swim Lessons. Joey enjoyed the water and splashing around with Daddy.


Here is Josh last Valentine's Day with his bib and paci. The next day he rested up, but still wouldn't let go of his Valentine balloon while he slept. On the 18th of February he was admitted to CDH because of a possible shunt infection. This led to the transfer to Children's and his very long stay there. More to come on that, but I wanted to keep things uplifting for now. He is such a cutie!

Out of Town Visitors

This past Saturday we were lucky to have Uncle Chris and Aunt Brooke come in from MI/MO to meet Jillian and see Joey. After lunch with Uncle Chris and Aunt Brooke we had a visit from Uncle Mark, Aunt Miya, and Nathan. Nathan sure is getting big, and looks so cute. Joey can't wait to be running around and causing trouble with him. It was also fun to see how in a few months a baby really grows...Jillian is 6 weeks today, and Nathan is 4 1/2 months.

In the evening we had Nonna, Grandpa, Auntie Steph, and Uncle Don over for dinner so they could also visit with Uncle Chris and Aunt Brooke. It was a lot of fun having everyone together. Sunday morning we met Uncle Chris and Aunt Brooke for breakfast before they had to head out of town. Jillian enjoyed her time being held, fed, and loved by Uncle Chris and Aunt Brooke. Thanks for the Valentine's gifts, great company, and a fun weekend!


And here are just some other random pics... (note Phil and Joey watching the Puppy Bowl instead of the Super Bowl!)

Joshua's Journeys #30 -Easter Seals

Mid January Josh and I had our first visit to Easter Seals, a great organization that helps special needs children. They have an audiology department that I had heard good things about. It was between Easter Seals in Villa Park, or going to a Westchester campus of Children's. Easter Seals was much closer, and the people there were very friendly. When Josh was in the NICU Phil and I had gone to a parent's night out where we were able to meet other parents, parent liaisons from Easter Seals, and enjoy a night of wine tasting (it was at a Wine Bar--too bad I still wasn't sipping any wine at the time, but Phil sure enjoyed it!). We met Sharon, one of the liaisons that I had been in contact with over the phone for a few other things, and our personalities clicked immediately. It was so nice to hear that we weren't the only ones doing and thinking some of the things we were. At any rate, she had become an instrumental support person and great person to network with.

Sharon met Josh and I practically at the door our first day at Easter Seals. We went to the audiology department for a few more hearing tests and to discuss hearing aids. Joshua absolutely hated the extra hearing tests and had a major wardrobe malfunction (the only time in public which really is surprising considering). The audiologist sat down with me and we worked on how we could keep hearing aids on Josh's ears. The structure of his ears were so floppy, and one ear was already curled in, however that ear ended up being the one to hold the hearing aid on the easiest. As a quick sidenote here, many people noticed Josh's ears first as being different. I LOVED Josh's ears. If I could've known that I wouldn't physically have him here today I would've gotten earmolds made, like some do handprints of thier kids because I loved them so much. The floppy ears were so adorable, and the one, (yes Crystal you noticed in the picture correctly) was shaped like a heart. With the hearing aids in it was hard to tell it was heart shaped because the aid pushed it up a little which is why that side fit so much better. But I would always kiss and tickle his ears, maybe they didn't look like everyone else's ears, but I loved his ears so much. I think CHARGE ears are the cutest, although I know if we had a longer journey with Josh and made it to trying the cochlear implants there would be a time when we'd have to do some reconstructive surgery on his ear because of its floppiness.

Karen, the audiologist helped me facilitate the delivery of the hearing aids so I could get them as soon as possible since she knew that getting a jump start on the aids was a big deal to me (although I was told it would still take 4-6 weeks, she got them to me in only 3). I was told at Children's that we had to go through the steps of hearing aids to prove that they wouldn't work for Josh before we could start down the cochlear implant path, which everyone knew Josh would need considering his profound hearing loss. Not that I wanted more surgeries for Josh, but I wanted the implants as soon as possible so we could work on speech or any hearing as soon as possible too. We were back at Easter Seals in February when the aids came in, but it was a great first experience with lots of helpful and resourceful people. Sharon, and the audiologist came to Josh's funeral mass and I later spoke with Sharon when I was delivering some donations to Easter Seals. She mentioned that she and Karen sat in the church holding each other's hands and holding back tears unsuccessfully. Josh melted so many hearts with his smiles and actions. We were so glad to have crossed paths with Sharon and others at Easter Seals. Last year our family walked their "Run for the Kids 5K" and we plan to again this year.