Joshua's Journeys #44 -- From Daddy

When I put together the "Josh & Jill" video over the weekend, I relived the entirety of Josh's short & powerful life. I (and I imagine this may be common among bereaved parents in general) have this dichotomy inside me: I have a powerful need to do whatever I can to remember Josh and his life; at the same time I do what I can to preserve my (relative) sanity by avoiding reliving things like the night he died over and over again.

Do you know how certain memories are filled with a type of un-categorizable emotion? Like a song in the background, but felt rather than heard? Something that marks that memory in such a way that it provides a special & unique marker? Almost like you could identify the memory just by the feeling it provides.

I used to have that only for memories of my youth; getting ready for one of my parents parties and listening to the talking heads, or playing with my transformers, or countless other childhood memories.

It's a special gift that I now have for most, if not all, of Josh's life. I watch the slideshow and relive Josh's first days. My utter fear both for him and of him. My fear that both of these children living in the NICU at a bajillion dollars a day was going to bankrupt us.

It takes me longer than Sandy to really bond with my children. I loved them all from the start, but there's the love of one's new baby (or babies) and then there's the love of a parent for their child. Sandy seems to make this transition immediately, which terrified me because God, am I such a terrible person? Josh needed more from his parents than any other child I've known, and he's my child. How is it that Sandy seems to be so in love with this child from the start, and what I'm mainly feeling is trepidation?

But here's the secret: A child with special needs is an amazing gift. Every tiny, insignificant accomplishment of theirs makes you squeal with joy. I can't begin to explain the joy I felt at his first real big smile. I thank God that is on video, and I can watch it whenever I want.

Josh Smiling on Chrismas from Phillip Kurby on Vimeo.

I want to share a couple of my memories of Josh with you all -- maybe we can relive some of his life together.

When Christy, Sandy's sister, first saw Josh laying there in his little bed (was it the incubator or the warmer bed? I don't know anymore) her eyes welled up with tears and she brought her hand to her mouth as she said "He's precious". I love her for that. It makes me cry just thinking of it, and I will always hold this memory close to my heart.

Josh in the NICU from Phillip Kurby on Vimeo.

That's the thing: If I had only known how beautiful he was at that moment, much of Josh's earlier days would have been so much easier for me. Sandy always talks about how cute his ears were. How she loved that one was decidedly heart shaped. I couldn't see that beauty when he was born, although I saw it later and ache for it now. If I ever get a chance to speak with a family who've just had a CHARGE baby (or anything else), I will do my absolute best to show them just how beautiful that child is.

When we starting talking about the possiblity of Josh's homecoming, I had the idea to make Eddie Money's "Take Me Home Tonight" the soundtrack of his trip home. I can't hear that song without thinking of the drive home with Josh & Sandy in the back seat with the stereo blasting. Josh was finally coming home to sleep in his room and meet Java. It's kinda funny now to think of it, but Java really didn't seem to care too much for yet another baby living with us. I love Java, but man she is dumb sometimes.

Josh Coming Home from Phillip Kurby on Vimeo.

One of my main motivations for writing this entry is to help me remember Josh. I remember the day after Josh died, Sandy and I were sitting on the floor in our kitchen crying and talking about him. I told her I was afraid of forgetting him -- his smell, his mannerisms, his face. I've already forgotten his smell, and it's like an aftershock of his death. For a long time I would hunt around the house smelling stuff just to try to find him again, but its gone.

Again, our diligence in documenting his life with video & pictures is a blessing. I never have to forget his face or the way he moved. I never have to forget his cough (oddly important to me), and I never have to forget how I used to gently stroke his head.

I hope above all that I always remember the things Josh taught me. Of utmost importance is this: Love really does overcome all. I still feel Josh's love in my life; I only hope I'm able to direct mine with enough focus to reach back to him.



I'll do another one of these in the future. There's so much more to Josh's story.

Joshua's Journeys #43 255 Days

255 Days of Baby Blue Eyes
255 Days of Laughter and Tears
255 Days of Hopes and Dreams
255 Days of Family and Friends
255 Days of Life and Love
255 Days of Beginnings, Ends, and New Beginnings
255 Days... that Jillian has now been with us, and the number of days Joshua spent with us.

Alike in so many ways, and different in just as many. We remember birth dates, death dates, and this one time when Jillian (our youngest child) has been with us the same number of days Joshua (our oldest child) has been with us.

Josh and Jill Grow Together from Phillip Kurby on Vimeo.

Beauty Will Rise by Steven Curtis Chapman:
It was the day the world went wrong
I screamed til my voice was gone
And watched through the tears as everything came crashing down
Slowly panic turns to pain
As we awake to what remains
and sift through the ashes that are left behind
But buried deep beneath All our broken dreams we have this hope:

Out of these ashes, beauty will rise
and we will dance among the ruins
we will see Him with our own eyes
Out of these ashes, beauty will rise
For we know, joy is coming in the morning...in the morning, beauty will rise.

So take another breath for now, and let the tears come washing down,
and if you can't believe I will believe for you.
Cuz I have seen the signs of spring. Just watch and see:

Out of these ashes, beauty will rise
And we will dance among the ruins
We will see Him with our own eyes
Out of these ashes, beauty will rise
For we know, joy is coming in the morning...
in the morning...

I can hear it in the distance and it's not too far away.
It's the music and the laughter of a wedding and a feast.
I can almost feel the hand of God reaching for my face to wipe the tears away, and say "It's time to make everything new. Make it all new."

This is our hope. This is the promise. This is our hope. This is our promise.
That it would take our breath away to see the beauty that's been made out of the ashes...out of the ashes...
That it would take our breath away to see the beauty that He's made out of the ashes...out of the ashes...

Out of these ashes, beauty will rise
and we will dance among the ruins
We will see Him with our own eyes
Out of this darkness, new life will shine
And we'll know the joy is coming in the morning...
in the morning...beauty will rise!

Oh Beauty will rise
Oh, oh, oh, Beauty will rise

Labor Day Weekend Fun

Friday we headed out to another Schaumburg Flyers game (this time with Nonna and Grandpa) to wrap up their baseball season. The Flyers did not have a good record, but the park and atmosphere are still a lot of fun. It was really cold and windy, but we bundled up since it was Sesame Street night and Jillian and Joey did great! Joey got a ball from one of the players on the other team, and while all the other kids kept theirs Joey threw his back. So another player started playing catch with Joey. Joey was in heaven. He had a huge smile on his face and kept throwing the ball back and forth. He was much more unsure of the Sesame Street characters, but Jillian shook Elmo's hand.


Saturday we were home in the morning while the basement was being worked on. Joey knows our contractor by first name (Mike). Mike made it to buddy status quickly by bringing Joey a doughnut last weekend! Since it was a nice day we left Daddy and Mike to work on some basement details while we went to the 2Toots Train Whistle Grill in Glen Ellyn for lunch! Joey and Andrew loved watching their lunch delivered to the table by the train. Joey doesn't know Thomas the Train, but loves trains in general, and was happy to see Thomas on one of the tv's by our table too. The diner was decorated like a 50's diner, and the atmosphere was perfect for the boys. Emma loved looking at the lights and decor, and Jillian loved the cupcake that Joey got. It came with a train whistle that Joey likes, but Jillian tried getting her hands on the cupcake...go figure!


Sunday we did our annual apple picking. Last year we went fairly early as well, and this year it was opening weekend and a perfect day. The weather was great, the kids were in good moods, and we all had a fun time. Joey liked the tractor, but was a little clingy with the hayride itself. Jillian had a fun time playing in the grass and trying to eat an apple. She wasn't terribly successful. She would get mad if we tried to start an apple for her, but she still has no teeth so she can't quite bite into an uneaten apple on her own. Emma seemed to enjoy and have better success at getting a little taste. Still she had a lot of fun. Joey insisted on carrying his own bag of apples no matter how heavy they got. Joey and Andrew had a great time picking apples and then playing on the tractors!

If at first you don't succeed...

Try again! Joey got some new goldfish. This time we actually spent more than 13 cents, and got the $4.99ers. They have been alive for 2 days and counting! Joey named them Tiny One and Big One (both are similar in size though), and the fish bowl is called Mickey Park. He enjoys feeding and looking at them, but also says that they scare him sometimes...he is a bit of a scaredy cat these days.

Jillian has been doing really well. She is now 8 months, and so incredibly close to crawling. The hard part is she would much rather stand, hold your hands to walk, or hold on to the ottoman or another toy and walk along on her own. She has stood independently for more than 5 seconds, even swinging her arms or holding things, so we'll see if she bypasses the crawling stage altogether. Her first official word was about a week ago--Mama! I'm not just saying it...Phil agreed! She plays with a lot of words now like Mama, Dada, Cat (I think from her play table), Gaga, ba-bye, and ni-ni (which I really think she is trying to say night-night since she says it when she's tired). She doesn't necessarily use all the words appropriately yet, but she is definitely playing with her voice and trying to get some vocabulary. She is very vocal most of the time, and wants so badly to be as mobile as her brother. She is doing well with finger foods eating most everything as long as it is cooked or soft.

I continue to pick up the book CHARGE Syndrome and read a few pages when I can. It is really well written and I think an excellent tool for practitioners and new CHARGE families. Last weekend I did a 16 mile run where I ran to, around, and back from Assumption thinking about Josh and all the footprints he has left.

And on to the month's end in pictures...
Here are a bunch of pictures from the last 2 weeks or so of August. Joey went to the splash park by Grandma's house, then the regular park, Trifesta (the fest at our church), another trip to Cosley Zoo where Jillian was a bit more interested, the kids playing at home, last weekend at the pool, and Nonna and Grandpa's house where they got Joey and Jillian a play table! No pics of the new fish yet, but if they stick around I'm sure you'll see them. Enjoy!