Good afternoon, I am a newbie to this so please ear with me. My 3 year old was diagnosed with Type 1 on Thursday. This has been very overwhelming. I have been reading some of my wife’s counseling books and they say that chats and journals have a therapeutic effect when dealing with life altering events so here it goes.
I can handle a lot. Pain, Emotions, Deployments. There is something different about seeing your child screaming on a hospital bed because she needs to get shots and doesn’t understand why because she feels fine. She says she will stop coughing if I just take her out of there (she had a little cold as well). Then we get told those life changing words “You’re daughter likely has Type 1 diabetes.” I lost it, hard, the kind of emotion you only show God in a prayer closet by yourself in the middle of the woods. The only thing I could think was how can I solve this? I’m an Engineer. I solve problems. Show me the problem. Then it hit me. I cant solve this. I cant take it away from her. I have never been more helpless in my life. Pure, True, Utter, Helplessness. Every time I prick her finger a piece of my soul detaches.
Every ay things take on a new meaning. I cant leave her at her preschool, with our favorite babysitter, take her to her favorite Chinese buffet. My daughter, my world, has been forever changed. I’m thankful that the staff at CHKD showed us how to take care of her, but right now we are surviving by a fingernail. Shots, corrections, carb counting, arguments about whether that was a full 1/3 of a cup.
All perfectly normal emotions that will take some time to sort through and overcome but be assured that diabetes will become more routine and all of the calculations will become second nature pretty soon.
Often diabetes can be a guessing game so don’t be surprised when x+y doesn’t = z but something that may help the argument of how much is a third of a cup is a scale so you are getting the same amount time after time. Btw, carb counting is also sometimes a guessing game as well so don’t stress about it too much.
My suggestion. Do not overthink it. Do not look at the larger picture. Focus on the here and now.
You mentioned going to CHKD. That sounds like you started off with a great start. IMHO Children’s Hospitals are the best places for care and education. It may be some time before you realize what a good decision you made to take your child there.
Your initial education is a big deal. That will get you started. When you read the foums here, there will be a ton of advanced information. You don’t have to start off with all that and I would suggest that you do not. Start basic. Learn how it all works. Slowly add more techniques.
BTW - Chinese buffet are not out of the picture. With both T1 and Celiac, we still will do an occasional Chinese buffet and have surprisingly good results. But save that for later. No rush.
You’ve brought me back to over a decade ago when my son was three, in the hospital, we were told he had type 1 diabetes and everything was turned upside down.
Caleb is soon to be 16 and much has happened since that January day at Yale.
I’m a problem solver as well. It took me much longer to realize I couldn’t solve for this. I thought I could collect all the data and apply formulas and spreadsheets and come up with the proper steps to make everything better. I eventually realized diabetes care is more an art than a science and the definition of success differs greatly than what it is in other areas of life.
I’m tempted to tell you all the things people told me that I found very unhelpful - things will get better, life will return to normal, she can go to the chinese buffet and do all the things you are used to. All this is true, but it’s also true that it will be different, will take some work and it won’t be as carefree as it once was. You will develop new routines and there will now be choices to make that you didn’t have to consider before.
Although it was very hard for me to imagine, I found it comforting when people told me about children who had grown up and endeavored to do things that at Caleb’s diagnosis seemed impossible to me. One person sticks out - a young woman who went abroad to Germany for a semester when she was in high school. Bringing Caleb to 3 year old preschool for a few hours took planning and education and a fortitude I didn’t know I had. Sending him to Europe for months without me seemed impossible. To know that it was possible, even if I couldn’t imagine it, helped me a great deal.
I wish I knew the exact right thing to say to make this better for you. I don’t think that exists. I love what others have said above and I’m so glad you’ve reached out. Please continue to share and ask questions. This is a process. We are here to help you though it.
Thanks for the input. My favorite thing is when ya’ll call carb counting it a SWAG. The counting just becomes so important when she only eats like 20 - 30 carbs and the lowest we can dose her right now is a half a unit. Just that little bit drops her pretty fast. I think were starting to get the hang of it. Her numbers were great all day today. Now if I can only keep her from dropping low at night. We’ve had to wake her at midnight or 3am every night since she came home from the hospital to give her juice. We’ve been working with her doctor every day to try and figure out a combo of Lantus and bedtime snacks. Hopefully tonight will be the night.
Thanks for the input. I cannot agree more about CHKD. They have been the only thing consistent about this process. During our initial education the doctor kept interrupting himself to answer his beeper and call patients back. Some people might be offended by this but I was extremely impressed. What if I were the person on the other end of the phone? I would want him to call back immediately. These guys are rock stars.
Funny story, my wife is in Grad School to get her counseling degree and become an LMFT ( I will never win another argument for the rest of my life). While she was spending the night in the hospital and getting caught up on school the nurse came in at 3am and caught her working. The next day the doctor ordered her to email her professors and CC him to let them know what was going on and that she might need a few extensions. Some might say intrusive, but I say its someone who understands that if she burns out then we can’t take care of our child.
I cannot tell you how much your words mean. Literally one of the first questions I had for the doctor is how does he determine the statistical norms of her Glucose Levels? I think I even mentioned control charts and +/- 1 standard deviation. He literally told me no, it’s by feel and experience.
It is so helpful to know that this is gonna suck but it can be done. I know that sounds weird. I’m like you, please don’t try to make me see the light. Show me the tunnel and tell me how to get out. We solve problems that often haven’t occurred yet. We have vision and creativity. We plan, we don’t easily react. That’s what makes this tough.
We went through chapters, each with it’s own challenges and the first chapter certainly has some big ones. Some chapters are measured in years, some smaller, some longer. I’m happy to say that Caleb has been to Europe twice on his own and did wonderfully. With every stage of his natural development came a step forward in his diabetes care autonomy. I have two other children, and their growth happened, but was not monitored and measured as Caleb’s was. Diabetes forced me to pay much closer attention. Step by step Caleb has become an independent young man. Your daughter will do the same. She will amaze you. For now, take one day at a time, and keep copious notes. lol I wouldn’t suggest that for everyone, but for some reason I think it will help you. I’ve held on to all the notebooks from Caleb’s early days (weeks, months, years).
So truly sorry for how difficult these early days are for your family. Knowledge will be the key to confidence - you can DO this! Keep reading! The JuiceBox Podcast might be something you’d enjoy.
Finding a local T1 parents group on Facebook was an absolute lifesaver when our son was diagnosed. (We are in the Dallas/Ft. Worth area, and Type One Family Network on Facebook has been AMAZING.) If you can find such a group in your area, it would help navigate things like schools, doctors, restaurants, camps, meet-ups, etc… Peace to you all… and DEXCOM asap! xo
I, too, remember the fear, the shock, the anguish, the resolve to solve, the frustration that “this was our new normal.” For me, I found solace with knowledge of T1D, involvement with the T1D community (through JDRF), and listening to others like those on this site. Remember that despite all best efforts, this disease is tricky. Don’t miss the forest for the trees. You will have both good days and rough patches. Just do your best.
The fact that you have found this community so soon after diagnosis tells me you are off to a great start! Hang in there, ask a lot of questions, and give a lot of hugs. Great things are on the horizon.