Joshua's Journeys #52 Lead Me

We are entering the dreaded "anniversary" last days of Josh's life on earth. I am not good with dates at all, but I can tell you almost every surgery date and hospitalization date of Josh's. I can't stand March, and could care less about my birthday anymore. Its not even the typical "I'm getting another year older" dread, I wish it were that simple. I wish I could say that for my 30th birthday I got a tattoo because I am that crazy of a gal, but instead I got it to remember my first born son who has impacted my life in ways I never thought imaginable. I see St. Patrick's Day things in the store or in magazines and it literally makes my stomach turn. All I know and associate with St. Patrick's day is that is the day we held a funeral for our son. I used to appreciate St. Joseph's day, donning red to show my Italian colors, but now all I can think of is the conversation I had with my grandfather (another Joseph) the day after burying Josh. I remember him explaining to me on the phone in one of the longest phone conversations I ever had with him how he felt in World War II; how certain things will never leave you, that some people will never understand nor care to try to understand, and that I have been changed forever come what may.

I know that I am still learning, still grieving, and still praying. I have two other children on earth that I cherish and love. I don't take one milestone for granted. As much as I dread this "season" I also take comfort in knowing our God is good. My faith and trust in the Lord has grown and I will patiently wait for Him to lead me.

Lead Me by Sanctus Real
I look around and see my wonderful life,
almost perfect from the outside
In picture frames I see my beautiful wife
Always smiling
But on the inside, I can hear her saying...

"Lead me with strong hands
Stand up when I can't
Don't leave me hungry for love
Chasing dreams, but what about us?
Show me your willing to fight
That I'm still the love of our life
I know we call this our home
But I still feel alone."

I see their faces, look in their innocent eyes
They're just children from the outside
I'm working hard, I tell myself they'll be fine
They're independent, but on the inside
I can hear them saying...

"Lead me with strong hands
Stand up when I can't
Don't leave me hungry for love
Chasing dreams, but what about us?
Show me you're willing to fight
That I'm still the love of your life
I know we call this our home
But I still feel alone."

So Father, give me the strength
To be everything I'm called to be
Oh, Father show me the way
To lead them
Won't you lead me?

To lead them, with strong hands
To stand up when they can't
Don't want to leave them hungry for love,
Chasing things that I could give up.
I'll show them I'm willing to fight
And give them the best of my life
So we can call this our home
Lead me, 'cause I can't do this alone
Father, lead me, 'cause I can't do this alone.

Aspen Glow of Elmhurst

Aspen, full name Aspen Glow of Elmhurst, was a part of our family for 15 years. Yesterday she was laid to rest on her bed in the warm, shining sun, surrounded by love. A great family dog and companion, Aspen will be missed dearly. She loved playing frisbee, ringing the doorbell, swimming, chasing balls, getting the daily paper, and so much more. She has been through a lot with our family good and bad. She was there to see Christy and myself get married, greet all of our children, and help us grieve of the passing of Josh. She had many furry friends of her own and has seen many come and go through the years. We got Aspen before I went off to college, once Phil and I got our first townhouse we would watch Aspen while my mom was out of town. She would race up and down the stairs, play hide and go seek in our two bedroom townhouse, and go for walks to get ice cream. She gave the approval of Java and was a fixture in our current house, being known well by our neighbors. She was known at her house for looking out the front window at all passerbys, and greeting us all as we walked in the house. She was blessed at our church along with Java at the pet blessing, and we know she is in a good place, playing fetch with Josh, licking his face, and sharing some popcorn.

Joshua's Journeys #51 The greatest of these is love

It has not been the first time, nor will it be the last, but my hearts skips a beat each time Joey says "Josh is coming soon to play with me," "My brother is coming," "Josh is with Jesus," "When will my brother be here?" and a whole lot more of the like. Josh is a part of our family on a daily basis and is a part of our conversations. Joey many times will bring up Josh on his own and either ask questions or tell us something about his brother. It tugs at my heart strings to hear him talk about him in such a loving, fun, and playful manner, but also breaks my heart to know that it may be a long time before we see Joshua again. How do you tell a 2 1/2 year old what that means? He knows when we go to Assumption that is Josh's resting place and that he is in heaven with Jesus. How do you explain that he is a twin, that the feeling of something missing is the physicality of his brother, you know the one he spent squashed inside my tummy with and the first 8 1/2 months of his life? How do you tell him that we are going to Disney this year not because its Mickey's house, but because the CHARGE Syndrome Conference is there and we are a part of that family. We are entering the calendar time of when last year Joey had some behavioral issues such as crying in the middle of the night, pulling at his ear like Josh used to, crossing his legs in the same manner as Josh, and just acting out of sorts. It is really hard to explain, other than I truly believe that he knows his brother and had bonded with him in the womb and out, and as a twin knows a part of him is missing.

I want Jillian to know that she also has another brother, while she may have never met him on earth, they passed each other in heaven. It was within weeks of Joshua's passing that she was conceived. A lot of what we do as a family, who we are as a family, and what we want to achieve as a family is because of their brother Joshua Roy.

We love you Joshua.


1 Corinthians 13:13 And now these three remain: faith, hope, and love. But the greatest of these is love.

Blizzard 2011!

So should we blame Phil for bringing the Russian snow and cold back with him? Thank goodness he got home when he did, or else I would not be a happy camper this week at all! And thank goodness he brought me a Russian hat so I could play in the snow and be super warm! The kids love their nesting dolls he got them. Phil will update you with his Russian trip soon, but we got a little sidetracked with... The Blizzard of 2011!

The lights flickered a bit last night, but we never lost power. The wind was crazy but the kids slept through it well, and we woke up to a winter wonderland! It was comical to see the huge snow drift out our sliding glass door this morning, and wondered how we'd get Java outside. Joey and Jillian couldn't believe their eyes to what they woke up to. And of course our wonderful neighbors helped us shovel out and play with the kids. Jillian didn't last terribly long, and after Joey warmed up to the idea of the sled with Nicholas he was having a blast!

Where's Daddy?

This past week Phil had to go on a business trip to Russia. While he has been gone on business trips this long before, for some reason knowing he is so far away makes it seem like it is even longer. We were only able to talk briefly, sometimes at 3am, so Joey and Jillian had not been able to really talk to Daddy much and the one time we tried to Skype it was a bit disasterous. To top it off, Phil left Sunday evening, with a layover in Germany for 8 hours, thank goodness otherwise he would've been landing in Russia around the time of the deadly bombing on Monday! Thank goodness he flew into Nizhny and was safe. Here is my attempt to track Daddy and explain to them on the globe, computer, and with the toy airplane where Daddy is!

Daddy is now home and loving up Jill while Joey continues to nap (he has not been sleeping a whole lot since Daddy has been gone). Thank you to all of our friends and family that checked up on me and the kids on Monday and throughout the week! I know Phil will post soon more about his journey!

Joshua's Journeys #50 Scribble Monsters

Today we got the opportunity to go and see the Scribble Monsters! When I told Joey what we were doing I told him we were going to see a play. He asked "With other kids?" I told him yes, and that it was called the Scribble Monsters. The whole drive he asked many questions "Are the monsters going to eat me? Will they bite me? Will they scare me? We'll sing? And dance?" Joey has been all about monsters lately...scaring him, Java being a monster, etc. So this was a good way to show him that the word monster is not so scary! In addition, all proceeds were going to the CHARGE Foundation! I had learned of this from the CHARGE Listserv and spoke with Tracy the lady who put this all together. She has a young daughter with CHARGE, a little younger than Joey, and had mentioned that she had seen our blog and knew of me. So we went to the production and as I was strolling the kids into the school the next car was a lady pulling her daughter out and said "Sandy, right?" It was another CHARGE mom! I don't know why I hadn't thought of it before going, but I saw 3 other CHARGE families that I knew, and met Tracy and her family whom I had just "met" online. It is so hard to believe that a syndrome affecting 1 in 10,000 worldwide can bring so many people together. It was a great production and the kids had a lot of fun, and I had a nice time catching up with those I knew and meeting Tracy and her beautiful daughter and family. It builds the excitement even more for our Orlando trip to the CHARGE Conference in July!

Joshua's Journeys #49- Kennedy's Birthday

I just read a very well written account from one of the greatest CHARGE moms I know recalling the birth of her daughter, Kennedy. I'm sure many stories of the births of our CHARGE kids are similar, but she hit the nail on the head for many of those first emotions. Both Josh and Joey were taken away from us at birth. We did hear Joey cry and Dad was able to touch him briefly. All I saw from the table I was strapped down on was Josh surrounded by doctors and nurses and then a quick glance of him as he was whisked quickly away. Lisa says the words "cautiously optimistic" which is where I basically lost it in her post... as early as 19 weeks when I had my cerclage and was put on bed rest I was told those words and hated hearing them, however true they may have been. Anyways, I really wanted to share this beautiful account that Lisa shared on her blog. Yesterday was Kennedy's 13th birthday! She is one of the most amazing, happy, and energetic girls I know (pardon me, young lady!). Thank you again Lisa for sharing your story and allowing me to cry, laugh, and recall the day Josh and Joey were ushered into this world as well. Happy 13th Birthday Kennedy!

I miss you Joshua...

Never stop praying. Be thankful in all circumstances, for this is God's will for you who belong to Christ Jesus. 1 Thessalonians 5:17-18