Monday, November 19, 2018

Timmy's Heart updated shirts

Remember these shirts?

Some of my kids have worn their shirts out, others have outgrown them.
So we're updating the shirts and making them available once again!

This time around, all proceeds will benefit the Ronald McDonald House or Rochester, NY - Custom Ink sends the check directly to them!

Click HERE to see the new & updated design!

Two Years

Two years ago. Not by date, but we brought Timmy home the Monday before Thanksgiving. As we look back, not the best day to have come home (with the shortened work week for medical professionals in the pharmacies and medical supply companies), but it was a good day to be home.

We were given an expectation. Months. And we chose to care for our son the best we could and love on him with everything we had. In the last 2 years there were times we thought we didn't have much of anything left to give. There were times our tanks were on empty. But God gave us His grace to make it through. I'm glad we don't know the future ahead of time. If you had told us how much work and adjustment bringing Timmy home would take, it would have been a harder decision. 2 years of 'sleeping' in the living room (There were some nights with better sleep than others). Almost 2 years of blending food, trying new foods, learning things as we went. 2 years of God giving grace to keep us going.

I am glad we don't know the future, because we had 2 years I wouldn't trade for anything. 2 years of seeing Timmy grow and develop (at his own pace). 2 years of seeing Timmy's smile and hearing his happy sounds. 2 years of seeing the joy he brought to everyone in our house, and everyone he came in contact with.

And now, we have a 'new normal' again. 2 years ago, I couldn't cope with the thought of a Thanksgiving meal with even a greatly reduced menu. We were so overwhelmed that even 4 or 5 dishes of food on the table was overwhelming. I think we celebrated with Turkey sandwiches. This year, we have invited family in and are preparing most of the dinner ourselves - and it doesn't feel like a big deal at all. We are looking forward to sitting around our table and enjoying the good gifts God has given - even remembering the gift of Timmy.

2 years ago, we made a request that friends not just stop in to see how Timmy was doing. We were juggling 7 times of giving medications during the day, getting used to his pump and feeding schedule, fielding calls from medical supply companies, doctors, hospitals, nurses and the whole lot. Now, we have been enjoying the times of stacking extra people into the house. The quieter times are nice, too (as quiet as a house where 10 people live gets), but the extra commotion helps too. 

Through it all, we have been blessed to always have much to thank God for - on Thanksgiving and every day. Circumstances haven't changed that, God has been good. We hope whatever season or situations life is throwing at you this year, you can feel the blessings of God and celebrate His goodness.

Make a joyful noise unto the Lord, all ye lands.Serve the Lord with gladness: come before his presence with singing.
Know ye that the Lord he is God:
it is he that hath made us, and not we ourselves;
we are his people, and the sheep of his pasture.
Enter into his gates with thanksgiving, and into his courts with praise:
be thankful unto him, and bless his name.
For the Lord is good; his mercy is everlasting; and his truth endureth to all generations.- Psalm 100

Wednesday, November 14, 2018

When sorrow is your new companion

Over the last week and a half, we have been through a lot. From having a sick boy and not knowing what was wrong, to watching him take his last breath, to having services for him.

In that time, I cannot remember all of the instances of people suggesting grief counseling, or mentioning grief, or asking how we are doing. And we appreciate the concern and care people continue to show. Just today, flowers were delivered to the house from some friends, another friend dropped off some custom jewelry pieces containing an image of Timmy, and a gift basket is to be delivered later today for Timmy's 8 siblings.

It dawned on me rather quickly that the sorrow we felt was not going to be the passing sorrow of missing out on ice cream, or the sorrow over a favorite team losing a big game. But the continued sorrow of not being able to hold my boy, not being able to give him any more of the kisses I used to give him by the dozen, not being able to hear his voice babbling happily next to me or from the next room.

So far, we are doing well at guilt management. We are making plans to do some things we have not been able to do the last couple of years. I know the temptation will be there to feel guilty that we are able to do things now that Timmy is gone, but I also know we willing set aside some things to be able to care for Timmy the best we knew how, and as his care is no longer necessary, we don't want to dishonor him by not carrying on our lives. Timmy's life was a miracle and a blessing and a wonder. He loved life and was never one to hold back.

So what do we do about the sorrow?

Well, it's going to be around for a while, so we ought to learn something about it. Where do I get my answers? Where I've gotten them along the whole journey we've had with Timmy - in the Bible. God's love notes to me. So, I have started by printing off the 108 verses in the Bible with the word 'sorrow' in them. I added the 48 verses with 'mourning' in them, and finished off by printing the 187 verses with the word 'joy' in them. I have my work cut out for me. And plenty to learn along the way.

So far, I have learned quite a bit about sorrow. The first reference to sorrow is when God confronted Adam and Eve in the garden after they sinned and ate from the tree God told them they could not eat from. God told Eve she would have sorrow in childbirth, and Adam that he would eat of the fruit of the ground in sorrow. God took two of the biggest gifts that he had given man, and mixed in sorrow with them. To be honest, I have always seen this as a form of punishment, but not any more. Let me tell you why.

The last reference to sorrow in the Bible is in Revelation 21:4. 

"And God shall wipe away all tears from their eyes; and there shall be no more death, neither sorrow, nor crying, neither shall there be any more pain: for the former things are passed away."

The removal of sorrow comes as sin and death are done away with forever - 'for the former things are passed away.' In other words, God has given man sorrow since the fall of man, until the ultimate redemption of man and all of creation.

Then, I kept looking at references to sorrow. In the Psalms, sorrow drove David to seek the Lord. In Exodus, the sorrow of God's people was motivation for God to act on their behalf. In Leviticus and Deuteronomy, it was part of the correction God would bring to his people to bring them back to him. In I Samuel, it was what caused Hannah to cry out to God. And then the references to 'godly sorrow,' and I thought of a few verses from the Proverbs:

"Two things have I required of thee; deny me them not before I die: Remove far from me vanity and lies: give me neither poverty nor riches; feed me with food convenient for me: Lest I be full, and deny thee, and say, Who is the Lord? or lest I be poor, and steal, and take the name of my God in vain." 
- Proverbs 30:7-9
Don't give me too much that I forget God. With all the good gifts God has given, it would be easy to forget him. If we satisfy ourselves with everything else, in fact, there is little room for God. Illustrated very well in the culture we live in. (Not pointing fingers here, I am a part of the culture, and fall prey to it as well) But sorrow. Sorrow is there to remind us that we need God. In that respect, sorrow is a gift. 

I mentioned that I used to see sorrow as a punishment from God for disobedience. That is no longer the case. Without sorrow, we would all forget God. Sure, it doesn't sound like that hurts us too much, until we realize that this physical life is temporary, but God made man to be eternal. This life is just the first short act of a much longer production. And the first short act is the only time we have when we can choose to follow God. Without sorrow, none of us would chose God. And all of us would throw away the joys of a much longer, fuller, rewarding life than we can ever achieve in this life. Sorrow is a gift. You see, I don't need God as a crutch to get through the difficult days we are going through. I need God because I am an eternal being created to be in fellowship with God. Sorrow, in all of its forms, reminds us of that need. 

There are lots of things in life we don't enjoy, but go through for the good that they bring: exercise, discipline, immunizations, medical procedures, sometimes even things like work. In one respect, I certainly don't enjoy sorrow, but I can consider it a blessing for what it does in me. I don't enjoy sorrow, but I also take comfort in knowing that sorrow means I cared for the life God entrusted to our care for that time.

I don't know what sorrows you face each day, nor would I expect you to jump up and down with joy to greet the sorrow, but I hope you can appreciate the gift of sorrow in your life as we are learning to do in ours.

Saturday, November 10, 2018

A good day of remembrance

Pictures are from yesterday, but they are of things present both days.

It was a good funeral. Comedian Tim Hawkins jokes about putting the 'fun' in 'funeral.' I'm not sure about fun, but today was an enjoyable day. 

I got to share my heart as far as what I have learned about God's love through the loss of my son. The short version is that I learned just a little more of how great a love God has for me. He went through the loss of his Son, voluntarily, to demonstrate His love for me. I needed that, and His love drove him to make that sacrifice for me.

I got to worship with friends and family as we sung together "Higher Ground," "Saved, Saved!," and "I'll Fly Away." I got to sing a duet with my son, who was also playing the guitar as we sung "To God be the Glory," with everyone joining us on the last chorus. We continued our worship as my brother shared his heart about Timmy's verse - Psalm 9:1: "I will praise thee, O Lord, with my whole heart; I will show forth thy marvelous works." He then shared my heart, taken from this blog, of several of the marvelous things God had done in Timmy's life.

I got to say good bye to my son. My last kiss on his forehead felt completely wrong, but yesterday and today was the longest I have gone being near him without giving him a kiss. Knowing that his life has preached more truth than I have in my years as a pastor, I tucked my preaching Bible under his arm before setting the lid back on his casket.

I got to enjoy sweet fellowship with family at a luncheon provided by the church Jen and I went to and served at when we were first married. They served us well and we enjoyed our time with family immensely.

I guess the big wonder people have expressed to us is whether these events will turn us bitter toward God or deepen our faith. Several have commented, but it is not something that worries me. How I respond to life is a concern I always have, but not a worry. As my brother shared today from this blog, we made our determination how we would respond a long time ago. An image a friend shared with me today is the image of a sailing vessel. You can observe two ships, using the same wind to go in different directions. A poem by Ella Wheeler Wilcox explains it:

But to every mind there openeth,
A way, and way, and away,
A high soul climbs the highway,
And the low soul gropes the low,
And in between on the misty flats,
The rest drift to and fro.

But to every man there openeth, 
A high way and a low,
And every mind decideth,
The way his soul shall go.

One ship sails East,
And another West,
By the self-same winds that blow,
'Tis the set of the sails
And not the gales,
That tells the way we go.

Like the winds of the sea
Are the waves of time,
As we journey along through life,
'Tis the set of the soul,
That determines the goal,
And not the calm or the strife. 

The winds will blow in life. I hope the winds blowing in our life never blow in your life, but I can assure you that winds will blow in your life. Which way will the winds blow you? Is it really a mystery we can't know ahead of time? The answer is that we can predict where the winds will take us. The direction of the wind, the strength of the wind, and the suddenness of the wind have no bearing on our bearing. The only thing that makes a difference is how we set our sail.

So, I don't worry about it. But I conscientiously set my sail. And I invest in people and hang out with people who have set their sail in a similar way. I know that there are many in my life that are standing on the shore, holding ropes, to maintain the position of my sails. So what will happen when the next wind hits me? The wind will take me where I have pointed myself by the set of my sails. 

If you feel like life has you along for the ride, as if you are not in control of where you are headed, as if you don't know where you are heading - stop drifting around, and grab a hold of your sail.

Where will the wind take you?

Better check your sails.

Friday, November 9, 2018

Oh, I Have Been Blessed!

I am totally not ready for today, nor am I ready to put off today to another day. 
Such is our state for now.
Looking forward to seeing many friends and family, but visiting hours today and the funeral tomorrow seems to make things more final.

Still, I can't help but think how blessed we are. 
And this song has been on repeat in my mind:

"I Have Been Blessed"

"When He walks among us, all that He does, 
All of His mercy and all of His love. 
If the pen of a writer could write every day 
even this world could never contain 
just how I've been blessed 
The warmth in the winter, the flowers in spring, 
the laughter of summer, and the changing of leaves. 
Food on my table, a good place to sleep, 
clothes on my back and shoes on my feet. 
Oh, I have been blessed. 

I have been blessed, God's so good to me, 

precious are His thoughts of you and me. 
No way I could count them there's not enough time, 
so I'll just thank Him for being so kind. 
God has been good, so good. I have been blessed."

These pictures remind me of so many blessings, too.

Thursday, November 8, 2018

What Happened?

Picture of Jen in bed with Timmy about an hour before he passed.

Part of me wants to wait to share anything more, but the other part of me wants to write before I start forgetting. So, what happened?

Timmy had a cough and cold like symptoms a couple of weeks ago. Nothing major, we got him checked and his lings were clear. He recovered, but last week started having more congestion again so we took him in to be seen. The diagnosis was that his lungs were not clear and it was either due to his heart failure (which was Timmy's constant state) worsening or pneumonia. That was last Thursday. He improved on Friday, but on Saturday Jen noticed his eyes were puffier than usual. Sunday morning, his feet were swollen. Swelling in the face and extremities are signs of heart failure. The symptoms that we treated with the medications Timmy was on (diuretics, for example). We called his cardiologist Sunday morning prepared to take off for Rochester. 

His cardiologist, knowing that our desire was caring for him at home, made suggestions as far as increasing a medication and seeing if that helped. We breathed a sigh of relief and figured things would improve based on the recommendation making a lot of sense. They did not. We called again and he suggested that we could see him in the morning, or go to Rochester then or in the morning. We decided to finish of Sunday's responsibilities, but make a "go or no-go" decision at 7:00 after the evening service at church. No improvement was made, so we called the cardiologist again and he told us he would call ahead to Strong's to have them waiting for us. We left shortly after 8.

We arrived around 11 to the ER at Strong's and they began their evaluation and started drawing blood and taking x-rays and asking all the questions to find out what Timmy, who left 2 years ago, was doing. By 4 am we were brought up to the Pediatric Cardiac Care Center - Timmy's home for 2 months a couple of years ago (almost, the PCCC moved to a new location in the hospital, but it still felt like home). We also met with the cardiologist that admitted Timmy 2 years ago in the process. Arriving at the PCCC, we were greeted by Erin, one of Timmy's nurses from his first stay. It really felt like home very quickly.

They worked to get Timmy's vitals and start figuring what to start with. IV fluids were started, more tests run, and monitors were hooked up. Also, by this time, they had Timmy on 6 liters of oxygen flow (at home we had him on 2-2.5 liters) and his oxygen sats were staying on the low side. 

By morning, Timmy was resting a little, and we waited for rounds. at this point, Jen hadn't slept since a small nap Sunday afternoon, and I had gotten a few short naps in through the night. At rounds, they gave a run down of Timmy's condition and what they expected. They were going to give Timmy some valium to help him rest and not be agitated, and it worked well without knocking him out. It looked like things were settling in as they did last time, so I started to work on getting Jen settled by finding out about the Ronald McDonald House and all. We got her moved in in the afternoon, and picked up some food for her while Timmy rested and went back to the hospital. Jen knew the routine, so I headed for home around 5:00 with the promise of a good night's sleep. 

I got home and started getting ready for bed, but got a message from the hospital. I called them to find out Timmy wouldn't settle, even with another dose of valium. So I called Jen and let her know. She had just gotten back to the RMH and showered, ready for bed. She went back to the hospital, and I went to bed, knowing she might be in for a long night, and the best thing I could do was get my rest.

When I woke up and showered Tuesday morning, I checked for messages from Jen. There were 3 messages from overnight. Just updates while things were fresh. They kept turning up Timmy's oxygen, but his sats kept falling. He wasn't sleeping well. Jen wasn't sleeping either. I called, and Jen put on Dr. Powers, who was in the room, to give me an update. So it was time to go back to Rochester. I arrived by 11 Tuesday morning and updates and decisions were made very quickly. Because there was nothing they could do to keep his oxygen sats up, it was clear that we needed to transition to comfort care. By 4:00 pm, Timmy had taken his last breath. Jen and I were beside him in his bed, singing some of his favorite songs and holding his hands. 

His heart just went down hill very quickly. 

Some of the blessings along the way:

If we had waited until Monday morning, we would not have been able to handle transporting Timmy to Rochester, and he would not have had the same comfort and care since the VNA and palliative care were not in the picture anymore.

We prayed for wisdom and God made the decisions very clear. No second guessing, no doubting the choices we had to make.

The arrangements with the Ronald McDonald house were made quickly and easily. (at least from our perspective - Liz at the hospital may have a different story)

Jen was provided a meal tray in the hospital so she didn't have to leave Timmy Tuesday morning.

So many friends from our last stay were there to encourage us and be a blessing.

The new nurses on Timmy's floor were excellent and gave him great care and were super helpful to us as well.

Great care and doctors willing to go the extra mile with Timmy at our local practice, in Buffalo, and in Rochester.

A fresh baked chocolate chip cookie Tuesday at the Ronald McDonald family room on a day when it was really nice to have.

Safety in making two round trips to Rochester in under 3 days. Even when several accidents were seen.

Family & friends from all over that kept letting us know they were praying for us through those 2 days of uncertainty.

Yes, we have been blessed.

Wednesday, November 7, 2018


Timothy Devlyn Hadley, 2, lost his life-long battle with congenital heart disease on Tuesday November 6, 2018 in Golisano Children's Hospital, Rochester.
Timmy is survived by his parents Kevin and Jennifer Allen Hadley of Niobe, NY; siblings Austin, Larissa, Robert, Jeremiah, Benjamin, Abigail, Jonathan and Joseph Hadley; grandparents Michael and Pamela Allen of LaGrange, IN and Lyndon and Lynda Hadley of Cherry Creek, NY; great grandparents Robert and Carolyn Brown of Rushville, IN and MaryEllen Emmott of Gerry, NY.
He was preceded in death by two infant siblings through miscarriage.
Timmy brought joy to all who knew him. Loved by people around the world who followed his story, but especially those who made a difference in his story. Besides his family and friends, Timmy was loved on by his nurses, doctors and support personnel at Golisano Children's Hospital and his local medical personnel, as well. He will be missed by his three great therapists that pushed him to work at his best in his physical development. His church family at the Niobe Baptist Church will feel his loss as well.
Timmy's life and death were a testament to God's love and power. At six months old, he was not supposed to survive more than a few months. The last 2 years have been an unexpected blessing for us all to enjoy.
The funeral will be held at 11 am Saturday in Bethel Baptist Church. Pastor Donald Hadley will officiate.
Burial will be in Grant Cemetery, Niobe.
Friends will be received from 2-4 and 7-9 p.m. Friday in the Lind Funeral Home.
You may leave words of condolence at