The diabetes community is devastated lately with those who entered DKA and lost their lives recently; even before given the opportunity/chance to live with T1 Diabetes. Much has been both written and said.
Kycie’s Family, The Terry Family, chose to live their life ‘out there’ for everyone to see. They allowed us to see the pictures of their life before they were devastated by what has happened. They showed us pictures during Kycie’s tremendous fight. They shared their feelings. They wanted the world to see that something needs to be done. And, although in the early stages since that battle was lost, many are beginning to respond.
What I want to do today is thank the Terry Family. The anguish, I cannot imagine. The respect is beyond comprehension. Who lives their lives in such a way for us to see, and more importantly, for us to learn? I was not the least bit surprised to see that they even shared photos from Kycie’s Funeral.
The photos from the funeral, were/are tough……..but they gave us a chance to say goodbye as well, in our way, from where we live. That could not have been an easy decision and you can go and see on their Kisses for Kycie FB Page. In addition to the stark pictures of reality are the pictures of two of the boys smiling. I liked that. I liked that amidst this horrendous grief, a smile could be seen. From what I have learned of Kycie, she would like that too. Again, the Terry Family seems to understand how engaged so many have become. They have, once again, opened their lives so this time we may be able to grieve too. That takes an amount of courage, a large amount of courage. We thank them.
As I stated, I will be writing next week regarding some ideas people may engage themselves to get involved. Just ideas and many have started already. I have two points today. To our community, I share that this is not a new occurrence. This has happened before, and it surely (and sadly) will happen again. I’m not just saying that, I need that lesson to really resonate with all of us. The internet has allowed us to connect with Kycie and her family in Utah, Reegan’s family in North Carolina, and David in the UK. As we all move forward, I implore you NOT TO LET the feelings we all are feeling just fade away.
In speaking with Reegan’s mom this week, I mentioned that this unfortunate occurrence has happened before and that it is my hope that the feeling within our community does not just fade but, rather, that true actions come out of the emotions swirling around. Strong, tangible actions. Without even thinking she immediately responded with something that stopped me in my tracks; “It will never fade away for me.”
The last thing I want to say is thank you. To these families who are sharing their stories from a heartfelt grief of which I have never known; I say thank you. I pledged my willingness to fight for this to Kycie’s father the day I learned of her death. I pledged it over 18 months ago when I started “a Child’s Cry for Change” and will continue that pledge with, what I hope, will now be an army who also want to see real change.
As Kycie’s mom stated, “Love you mostest infinity”…..let’s prove it by changing the world as needed. As they would want. I think, think; we owe that to them, to their families.
I wrote the following to Kycie’s Family—–it seems the correct way to end today’s article:
You asked for Kisses for Kycie, but in fact; it was Kycie that Kissed this world—so gently, so kindly, so lively. I, no one, can take away one iota of pain. My continued prayers will be for some sort of peace to come into your pained lives. How do we thank you for allowing those gentle kisses to change the world…….those sweet gentle kisses will create a power of change unlike this world has ever seen before. God Bless all of you…….Much, much love.
—Tom ‘DiabetesDad’ Karlya
10 replies on “Kycie is Laid to Rest………The Hardest ‘Thank You’ I Have Ever Stated……SIGH.”
Such a heartfelt and powerful article Tom. I pray we don’t lose sight of what must happen…CHANGE at so many levels. We are all fighting this battle and I know for me, I won’t let this feeling of anguish and despair fade. We must continue on in our efforts as a community who people will dare to reckon with!! Thank you for all you do in our T1D community.
Tom,
I love what you wrote. It was true and said with heartfelt compassion. I know that change is possible! This change will, however, take time and effort. When addressing the issues related to undiagnosed Type 1 Diabetes (that results in diabetic ketoacidosis), we have to consider many and varying ideas. This is not going to be an easy or quick fix. Let’s look at ALL the reasons that it is difficult to quickly and accurately diagnose Type 1 Diabetes in both children and adults. We are not here to vilify parents and/or doctors for their failure to recognize the symptoms of Type 1 Diabetes. We know that this disease mimics other illnesses. This is not always an easy disease to diagnose. So both education and medical diagnostic tools are going to be critical in helping children quickly receive treatment when ill due to the onset of Type 1 Diabetes.
Debbie
AMEN….you said it all.
Beautifully written and much love to the Terry Family, whom our hometowns of Utah know well and we wouldn’t expect much different from such wonderful families. May they have peace and comfort and Kycie’s fight for all those still struggling or will struggle with this type of Diabetes be remembered and continued by others to spread more awareness! Much love……
Thank you Tom for writing this post. This is the part where you say ” I cannot imagine what they are going through” but the sad part is unfortunately in our community, we have imagined it over and over again. My heart breaks for them. Diabetes took my father when I was a young boy. The rumor had always been that it skips a generation in our family, not sure where it started but it unfortunately turned out to be true. When my wife and I started having kids we watched them closely for signs of Type 1. When my 2nd oldest started showing signs we called the doctor. We were told it was flu season and they couldn’t get him in to check for a couple weeks. The very next day his kindergarten teacher told us that he was drinking a lot and went to the bathroom in excess of 10 times that day. We called the Dr. back and they sent us to urgent care and after a simple test straight to the children’s hospital. If diabetes hadn’t run in my family, if we had waited on the Dr.’s appointment,…..a thousand “if’s” run through my mind but the simple fact is…..a simple test was all it took yet they tried to talk us out of coming in for a long time because it was flu season and they were busy. I often think of what could have happened and then a horrible story comes along to let me know. You can check you blood pressure for free at most drug stores. We need a machine like that for diabetes screenings. Something to take away the excuse of we are busy. make it easy to pre-diagnose so that you could take that info straight to the doctor.
Yours are great thoughts. The blood test, if ordered, is covered. Insurance, Medicaid, by all. Of course the two key words is, ‘if ordered’. I am absolutely convinced that the only reason it is not done, is because it is not thought of. As I have stated before, this has happened so many times before; and it will happen again. A mandatory blood test…..is just not going to fly in any legislative branch……we learned that in North Carolina. And I could be wrong and will continue to try no navigate those waters. But much can be done in the mean time which I will discuss next week.
Thanks for writing.
I use the blood test…finger prick test…on my two youngest children…at home…when they are showing any of the onset symptoms. I was told…by our pediatricians nurse…that doing the test once a year may not catch it on time. Type1 can pop up out of nowhere. After losing our twelve yr old daughter…seven yrs ago…I’m a nervous wreck! I always have the test on hand…and watch my other children like a hawk. Another thing parents need to know…You need to have a plan. Not just for Type1 Diabetes…for anything that has to do with your “child”. Be sure to bring them to a hospital that is set up for children. One that has a Pediatric Specialist on staff…at that location. A hospital with a PICU is ideal. A child coming in the ER with DKA should never be given a Bolus of Insulin. They need it in a three hour drip. The amount would depend on their age, weight, and few other factors. Our daughter’s should have been 1.5 units…in the three hour drip. They also need to watch how much fluid is given. If this isn’t done properly…the acids rush up from the stomach…to the brain…and causes edema. This is the brain swelling…(this is typically when they go into a diabetic coma) and the brain can wrap itself around the spinal cord and suffocate itself…die. Why our hospital didn’t have this information is mind blowing!!
Important information…….thanks for sharing.
We lost our twelve year old little girl…she had Type1. We didn’t know…until the day we had her sent to the ER…wrong ER! Even though it was hospital errors…I still wanted to get involved with helping the community to recognize the symptoms for this disease. Some friends and I had bookmarks and fliers made up…with the onset symptoms of Type1. I still have quite a few left. I would like to send some to this family…when they are ready. I’ll be praying for them…I know their pain.
The morning after we had to make the choice of letting them turn off the machines…and let her go…I prayed to God…to take me too. That’s how much pain we have. I don’t know why…but…I was given a vision of her. She was so beautiful! She was wearing a white gown, bare footed, eyes closed, arms straight down, hands open and a little back, chest upward, AND…there was the most beautiful radiant white light…(something I can’t put into words…never seen anything like it before)…that filled every spec of her. If they want to chat…please…have them contact me. Thank you for having this post…here on Facebook (((hug))) Sandie
Thank you for sharing such a heart-breaking story…..there is a wonderful page on FB for those who lost people to T1……send me an email at tkarlya@drif.org and I will introduce you to the mom who created this hugely powerful resource for those who may have gone through what you have gone through….God Bless all of you and thank you again for sharing such a stark reality.