JT’s Story

Site created on November 6, 2022

So how did we get here? That’s the question that re-plays in our heads.

Memorial Day weekend 2022 was the first we noticed something was off. He vomited in the car on the way home from the beach. Then he began vomiting after eating dinner. Before long he was “retching” every morning. With the help of his doctor we began ruling things in or out by trying non-invasive methods for GERD, omit gluten, try Miralax, etc.

Jt has Down syndrome, limited communication and sensory issues that severely limit the types of testing that he can tolerate. Being 20 years old didn’t help either. Specialists couldn’t decide to treat him as a child or adult.

We began taking Jt to the lab at the clinic 3-4 times a week to de-sensitize him. We were super lucky to find two people that worked in the lab that were patient and went at JT’s speed. The first few days looked like Jt walking in and saying “hi”. We got as far as putting the arm band on, finding a vein and touching the needles to his skin. So close.

We knew getting a blood draw from Jt would be tough. We were talking with multiple specialist to figure out the best plan to sedate him and do a bunch of testing at the same time. Unfortunately, the way our health care systems are set up, finding appropriate care for “complex cases”, which we heard over and over, is hard and takes a ridiculous amount of time.

Dave and I knew things were getting worse on Thursday Nov 3. He was showing signs of pain. I only remember Jt crying 3 times his entire life, one of them was last week. The specialists were still talking to each other to figure out the best plan. We took Jt to the ER the evening of Friday Nov 4 to try to push the system and get some relief for Jt.

Even Friday night the ER tried to send us home to wait for the plan to come into place. We weren’t leaving without some answers. The ER team agreed to sedate him and run tests. The team ran a seamless plan and did a lot of testing in about 30 minutes.

No one was prepared for the results. We had been talking about intestinal blocks, thyroid issues, gall bladder issues, and food allergies. The results came back that JT’s kidneys had failed. Numbers the doctor said he’s never seen before.

Terribly difficult discussions were held, many discussions. Sometimes asking the same questions over and over.

Jt was given fluids and blood to see if that would change any numbers. It did not.

Saturday morning we decided what was best for JT’s quality of life was to go home.

At home he has been comfortable, peaceful and surrounded by love beyond imagination.

Newest Update

Journal entry by Dawn Mitchell

So many words, so many thoughts, and none of it seems to be sufficient.

We learned about JT’s kidney failure on Friday 11/4.  Once we had all of our questions answered we busted him out of the hospital and brought him home on 11/5.  He passed away just after midnight on 11/12 - one week.   

One week - that one week - was filled with a lifetime of love.  “Like snow on the beach, weird but f$;@ing beautiful”  Guess I could be a Swifty now, because Taylor Swifts song “snow on the beach” sums up that one week pretty beautifully.  

I thought I understood hospice.  I completed an internship as a hospice social worker, I knew the mechanics.  I wasn’t prepared for the peaceful sacredness of the week.   We have a week of pictures, videos, memories and snuggles that we will forever cherish.  We do not take it for granted what a privilege it was to have that time.   

JT’s celebration of life was the week after he passed, 11/19.  That week was full of preparing to celebrate his life.   So many pictures, and videos and memories.   

Since then we have been aggressively met head on with the reality that JT is gone.  At times, it physically hurts, it is testing our faith, and brings a new perspective to what is important.  However, we aren’t on this journey alone.  The support of family, friends and community are helping us to relearn how to breathe and move forward, one step at a time.  

We will never be the same, we will forever miss Jt.  We are coming to terms that this is what we’ve got to work with and it is quite a lot.  It’s just really different than what we had imagined.  I tell my school kids all the time “it’s okay, it’s different, but it will be okay.”  

So much love to all - xo
Dawn and Dave 

PS - We have had a few people ask about the JT memorial scholarship.  The scholarship fund is a reality, we will be working with the school to figure out the wording.  It’s not too late to make a contribution.  It feels so good to have something to honor him with. Our deepest gratitude to all of you.
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