His Love

Easter was different this year...as was Tyler's birthday, Thanksgiving and Christmas. Why are the holidays harder days? Is it because of the tradition of gathering together reminds you even more of the ones that aren't with you? I don't know. My heart was hurting though. I was smiling and talking, but the tears were just beneath the surface. I know I wasn't the only one. We were missing Tyler and Michelle at our dinner table.

These are the faces that have been present since Tyler was born. Well, even before that, I guess. We're a tight knit family, if you haven't noticed. One that actually enjoys being around each other and looks forward to spending time together. We've been through some tough things, but never anything like this.

We've watched this boy since he was a baby...changed his diapers, played matchbox cars with him, took him to his football games, did his homework with him, took him on rounds at that Coney, got him his first job, became his work out partners, threw the football around the yard, bought him his first car, met his first girlfriend, celebrated his graduation last summer, gathered with him during his diagnosis this fall, sat in on  family meetings with doctors...and now, we've all spent as much time as possible at his and Michelle's side in the hospital. Did you know Michelle and Tyler haven't spent a night alone since he has been in the hospital? Here's a glimpse into the schedule:
Sunday= Aunt Patty
Monday & Tuesday = Grandma Didi and Papa Bill
Wednesday = Aunt Cindy
Thursday = Aunt Juanita
Friday = Aunt Cheri
Saturday = Aunt Tammy
Backups = Aunt Jettie and Aunt Karen

That's pretty astounding, right?! We're thankful for supportive spouses and children while we put other members of the family first during these times. There are others that are regular visitors too...people who drive an hour or more to come see Michelle and Tyler...bring a meal or a treat, or, just sit and listen. We're thankful for them too. I would list them, but I'm bound to leave someone off and it's not my intention to hurt anyone's feelings.

So, to get to my point, on Easter, I sat down next to my Aunt Didi (Tyler's Grandma) and she asked how I was and I did the polite thing by saying "okay"...not a lie but not the whole truth because the truth would bring me to tears. Then I said, "and you?". She answered more honestly than me, she said, "I'm not okay. I'm horrible". As tears were streaming down both our faces she said, "I just keep reminding myself that God loves him more than I do! He loves all of us more than we know!" Sorrowful, but profound words.

His love is greater than ours. As much as we have given Tyler and Michelle, it is nothing in comparison to His love for us. That He would sacrifice His only Son to reconcile us to the Father. I hope our love has shown them a glimpse of what His love is for them.

I heard this song this morning and I can't think of any words more appropriate. I dedicate this song to Michelle, but also to the rest of us that are hurting right now - may we listen for Him and know and feel His love, even in this pain. You are not alone, Michelle. We are here, and more importantly, God is here and His love will see us through.

Another sleepless night
She's looking up and crying out
He's just a little child
Can you stop his hurting now

It's so quiet
But she hears in the silence

His arms are holding you
His love will see you through
When you smile and you laugh but you're fakin'
Cause you don't know how you're gonna make it
You feel so much pain
And you can't see your way
You're not alone
You're not alone

She's tryna' plan ahead
Unsure about the time left
Can't let these moments pass
Instead she'll treasure what she has

And when it's quiet
But she hears in the silence

His arms are holding you
His love will see you through
When you smile and you laugh but you're fakin'
Cause you don't know how you're gonna make it
You feel so much pain
And you can't see your way
You're not alone
You're not alone
Alone

His arms are holding you
His love will see you through
When you try not to cry but to take it
All the stress, and the hurt and heartache
You may feel pain
But not as great as His name
You're not alone
No you're not alone

Pneumatosis

That's a fancy word for air in the bowels, and this is Tyler's latest painful medical situation. If they can't "fix" it, it can cause perforation of the bowels (like it did his stomach in October). He is currently on antibiotics and a drain was put in through his nose to relieve the pressure. He also cannot have anything to eat or drink.

He hasn't made any improvements since yesterday. His stomach is in a lot of pain and the soreness is getting worse.

From Isaiah 53:18 “I have seen his ways, but I will heal him;
I will lead him and restore comfort to him and to his mourners,
¹⁹ Creating the praise of the lips.
Peace, peace to him who is far and to him who is near,”
Says the Lord, “and I will heal him.”

Even while we are yet sinners - Christ brings salvation (healing) through his death and resurrection. We're praying for physical healing for Tyler, but also for comfort and peace for him and his mourners, which is why I love that verse. 

Please join us in praying for healing, comfort and peace...not only for Tyler, but also for his mourners. 

Tyler's Story

As most of you probably found through Facebook, another blogger, Roni, picked up Tyler's story and has written a couple of really nice posts about Tyler. We're blessed that she has chosen to get involved in Tyler's story and has never even met us. She is dedicating the month of April to Flat Tyler as her Light project. If you're logging in from a computer (and not your phone), you'll see a link to her blog on the right. Here is her latest post, a Letter to Michelle.

We're also seeing a huge response from the flat Tyler. I know a lot of you have been following his story and it's a fun way to get involved. I've seen a few of the pictures, so I thought I would include them here...and my kids are having a blast with it too, so I'll include theirs here.

On a road trip for Spring Break - overnight stay in Nashville

Go Wings!

Rooting on his Spartans in Indy last night

A morning ride with his Aunt Patty

Getting buried on the beach in Florida

Playing in the neighborhood with his cousin Alenna

Dying Easter Eggs with Alenna and Blake

Sneaking some popcorn and M&Ms

A message from Michelle

Since this journey started, I can't recall a time when Michelle has specifically asked me to post to the blog. Last night, she asked that I write a few things. First, thank you for all of the support she is receiving - the meals, the visits, the cards, the thoughts and prayers have not gone unnoticed!

She and Tim wanted to say a thank you to Kira and Nicole for coming up with the flat Tyler idea. We're getting a huge response on that and anything that can bring a smile to Tyler and Michelle right now is more than welcomed.

She also asked me to put a thank you to myself for the "awesome blog". I feel silly writing that, but she asked, so I will graciously put it on here and tell her "you're welcome". If I can speak for myself for a moment, I must admit when they asked me to start this thing back in September, I was completely naive to what it would take. I thought I would just be posting some medical updates for the family and friends, and come February, Tyler would be healthy again and life would go on just the same. I obviously took for granted how sick Tyler was and I didn't know I would find this to be such a challenge to share someone's story with my words. I often pray for a long time before posting because I want everything I do to glorify God. He has given me a spiritual gift of mercy (to be able to empathize with others with compassion, words and actions). I often call it a severe mercy because it hurts so bad at times, but I pray this blog glorifies Him and blesses Michelle and Tyler in their suffering. It certainly has taken the supernatural gifting of the Holy Spirit to find words to put on here for you all!

Finally, Michelle asked that I put a message out there for our readers that may have some connection to a surgeon or doctor or hospital. She is still desperately seeking someone else to look at Tyler's case and consider further treatment. If you know of someone, please email me at jetfields@yahoo.com and we can get them all of Tyler's medical records and whatever else they need to look at the case.

Thank you again and God bless!!

Keeping Tyler's Spirits Up

Tyler has had so much love and support from this community of readers and we're so grateful to you all. Recently, one middle school boy asked if he could honor Tyler by shaving his head for him through St. Baldrick's. Due to timing, we weren't able to make the connection happen before the event, but Tyler is now registered as an honoree here: http://www.stbaldricks.org/kids/mypage/5192.

So, if you want to participate in one of their events, and want to choose Tyler as your person to honor, just let me know (email jetfields@yahoo.com) and we can add him to your event easily now.

Also, Tyler was able to have his dog, buggy, come up for her first visit this week. She was really nervous and it seemed she could sense that Tyler was very sick, which made Tyler a little sad. I think with a few more visits, though, they'll both settle in and get cozy with each other again.

Finally, Tyler's aunt Nicole has a new idea to brighten his spirits. She created a flat Tyler that we can all participate in.

Here are the directions: click on the picture below and it should open in a new window. Then print it and cut out the "flat Tyler". Dress him up by adding things like shoes, hats, shirts, pants, swimming trunks, etc. Be creative!

Then, go on an adventure and take a picture of yourself with flat Tyler. Send your picture and story to nkurkierewicz@aol.com by April 30th, and include where you took him and what you were doing. She'll compile all of them and send them to Tyler. Include a note or word of encouragement for him on there when you email it and she'll be sure to pass that along too.

Most importantly....have fun with it! Let's see if we can keep Tyler smiling!!

Waiting for another miracle

Sorry for the lack of updates. It's hard to update when we're just waiting. Waiting for a miracle. Waiting for another 2nd opinion to come through. Just waiting.

These words below may sound familiar because I'm going to use the same post I put on here back on Oct 7th. Tyler had just come out of surgery and we were told that he was septic and it would be a miracle if he pulled out of it. A miracle! That's what we got!! Tyler pulled out of that dire situation he was in and we praise God for it.

Now we get to enjoy Tyler, even though he's in the hospital. I watched some NCAA basketball with him yesterday. We chatted about the tournament and the teams. He joked with my kids that they couldn't eat any of his cupcakes that were sitting there looking all delicious. When I told him his toenails were getting long and I wanted to cut them, he said, "don't worry about it...why kick when you can scratch?". His little sarcastic sense of humor shining through. He yelled at his mom about something and she told him she could still ground him. He replied, "what? to this bed?" Then she threatened to turn the tv off and he just rolled his eyes. His papa came in and tried to force him to eat, which just annoys Tyler to no end and so the typical bantering back and forth, between them, followed. These things aren't significant, but they are moments that we wouldn't have had with him if we hadn't received that miracle in October. Praise Jesus!

So, now I continue to struggle between keeping it positive and giving you the facts. As many of you know, UofM has told us that they "cannot cure his cancer". They keep telling us this. They keep trying to make that news sink in. But you know, it takes the heart a lot longer to get something that your head already knows. So, we wait. We wait for another hospital to look at his case. We wait on God for an answer and we plead with Him to give us another miracle for Tyler.

I don't want to put this miracle request lightly. I know people throw that around all the time. I'm not talking about some "god" or some harmony with the universe or some good karma kind of "god". I'm talking about the kind of miracle that can come from the one true God. The one that created us and knew us from the time we were in our mother's womb. The one who sent his only son, Jesus Christ, to die for our sins. The one that we can have eternal life through if we confess our sins and believe in Him. You broke God's law, you sinned, but Jesus paid the fine for us. And He was broken and killed for us and the miracle is that He was RAISED FROM THE DEAD by the power of the Holy Spirit! That's the power I'm trusting and asking you to trust in right now.

So please, if you are a believer in the one true God, by the grace of Jesus Christ, enter into His throne room and pray for mercy and grace and healing and peace over Tyler Joseph right now. We love this boy and we are believing in the power of Jesus that will bring glory to His name through this, whatever His answer for Tyler might be.

Happy Easter week, everyone! Join me this week in celebrating the death and resurrection of Christ while we lift Tyler up in prayer!! Thank you!

A smile

Sometimes it's hard to remember the last time I've seen Tyler smile. He's in so much pain and suffering right now, that the thought of it brings me to tears. Yesterday, though, Tyler got a visit from someone very special that brought a huge smile to his face. Everyone was so excited to see Tyler smiling that they were calling others in to see Tyler. And Tyler even let my mom take a picture of him with his visitor. He rarely let us take pictures of him when he was healthy and he absolutely refuses to let us take pictures of him now. But, this special visit made him so happy he said "I'm in heaven right now!"

That visitor...a dog! That's right...one of the staff at UofM heard how much Tyler likes dogs, so she got permission to bring hers in so that he could see the dog. Tyler woke up and sat up and pet the dog and smiled so much. I'm sure he misses his dog a ton. So now the staff has said that they are going to try and get permission to let his dog come in for some visits. They've been trying so hard to find something to make Tyler smile and after more than 5 months, we figured it out yesterday. Just hearing of his joy made me cry.

Please continue to pray for Tyler. He's in a lot of pain and having nausea again.

"Then they cried to the LORD in their trouble, and he saved them from their distress. He sent out his word and healed them; he rescued them from the grave." Psalm 107:19-20 

Pray for Michelle too, no mama should have to watch her baby go through this kind of pain. She needs strength and peace in this suffering.

^"Praise be to the God and Father of our Lord Jesus Christ, the Father of compassion and the God of all comfort, who comforts us in all our troubles, so that we can comfort those in any trouble with the comfort we ourselves receive from God. For just as we share abundantly in the sufferings of Christ, so also our comfort abounds through Christ." 2 Corinthians 1:3-5.