Friday, April 26, 2019

Happy Birthday, Timmy!

Today is Timmy's birthday. 

He would have been 3 years old today. 

As we had begun working on introducing tastes and textures to Timmy, this birthday may 
have even included him being able to enjoy a taste of his birthday cake. 

But even as tasty of treats as we make and enjoy in this house, the things we could offer him pale in comparison to what he now enjoys - the freedom from feeding tube, oxygen tubes, and medications. 

So, how are we doing? We are still blessed. 

While life has settled in to the new normal, there is still a hole where Timmy was. As he occupied such a large place in the house, the calendar and our schedules, it is a large hole, but one that we are learning to deal with.

Our church gave us a card and love gift leading up to Timmy's birthday to encourage us to do something together as a family to remember Timmy. This brought me back to the blog and gave me 'permission' to read through the events of Timmy's life and enjoy the pictures again. I didn't have the time to do it, but the thought gave me permission to do something I needed to do, that I didn't have time for. (Amazing how you can make time if you need to)

Today Jen and I will head to Rochester again, just the two of us, to make dinner for the families at the Ronald McDonald House. We don't get many date nights, and as much as the kids need to be a part of the grieving / celebrating Timmy process, we need the time for ourselves as well. Grandma and grandpa will get to spend some extra time with all of Timmy's siblings in our absence. I'm sure the company will be appreciated from both sides.

So, we are remembering Timmy's birthday. In part, a sad day that reminds us of our loss, but more than that, an opportunity to remember the gift that God gave us, and allowed us to care for during his life here. He was a blessing to us in his life, a blessing we continue to remember and celebrate today.

The Life of Timmy (Abridged)






































Wednesday, February 6, 2019

3 Months

Today marks 3 months since we lost Timmy. Not lost forever, but lost in this life. Hebrew King David said of his lost son: 

“But now he is dead, wherefore should I fast? can I bring him back again? I shall go to him, but he shall not return to me.” - 2 Samuel 12:23

We continue to process, we continue to move on. Different things are triggers that bring a lump to our throats, or a tear to our eyes. 

For me (Kevin), my first tax client of the season walking in and asking "How are all your kids doing?" as we walked over to my desk was a question I wasn't prepared for.

Watching the movie "Wonder," a movie about a child that had many medical needs and whose life required the family to adjust in many different ways, we were struck by what different emotions the movie stirred up since Timmy had passed away. 

We all still struggle with the questions like "How many kids do you have?" or "How many brothers and sisters do you have?"

But most of all, we still find ourselves enjoying talking about Timmy, and remembering Timmy. Through pictures, through stories, through memories that we made together. And we are still trying to find ways to honor Timmy as a family.

We have cooked dinner for the families staying at the Ronald McDonald House in Rochester. We are scheduled to do it again on Timmy's birthday this year. We are going to a family camp this year as a family. And we wear our Timmy shirts with great joy individually and as a family.

On this month-aversary, I just wanted to share that we are still processing and doing OK. And I wanted to share some pictures of the last 6 months of Timmy's life, sharing some pictures that may not have made the blog before. The last picture is not how we remember him, but is a reminder of that special day that we celebrated the love so many had for him.









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!


https://www.customink.com/fundraising/timmy-ronald-mcdonald-house?side=front&type=1&zoom=false

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