Overwhelmed parent of T1D son age 6


(Melissa) #1

I dont have it, but I would gladly take it from my 6yr old son if i could. Diagnosed feb 2017. Less overwhelmed, but just frustrated and want a break. Diabetes consumes every part of my life and I’m not the one with the disease. I’m feeling selfish lately. Our 6yr old is our youngest and when he started kindergarten this school year i was going to have more “me” time. My husband and i were going to have more date nights and even short vacations away together. None of that has happened. Don’t feel comfortable leaving him overnight anywhere without one of us with him. There are few people we can leave him with for date night. I just wish it was a switch I could turn off so I can do the things I have looked forward doing but now can’t or won’t.


(b) #2

i have a 6 year old daughter w type 1 and I feel your pain. I would talk to your sons nurse at school and see if they can recommend a babysitter- sometimes theirs an aide or even the nurse looking for extra work during the summer months… Also check into diabetes camps for your son- we are putting our daughter in one this year and hopefully will be a great way to network.
my daughter was diagnosed when she was 3 so i an gettjng a bit more comfotable now with leaving her with others… it will get better!! hang in there… ur son needs u to be strong and be there for him even if it means counting carbs when ur half asleep… u can do it!!


(Lisa) #3

My son was 8 when diagnosed and he is my youngest so I know exactly how you feel! I felt so guilty thinking of how much I was missing when he had this horrible disease that turned his world upside down. My husband and I started out slow, going out to dinner nearby for a short period of time while my parents watched him (AFTER I had fed him and had him all settled!!) But now, I am able to do more as my son learns how to care for himself. My son is now 13. He is not perfect, but he does know what to do when high or low and he can keep track of what he eats so that it isn’t all on me. I would highly recommend camp. He goes to camp every year and it is a great blessing.
I hope you can find some sitters and get a much needed break.

Lisa


(Jennifer) #4

I am so glad to be a part of this group. I find comfort in you guys sharing your story. My son is newly diagnosed march 2018. He fell into a deep sickness and went into a coma state, I brought him in and ended up in children’s hospital for 2 weeks. He was in the ICU for a few days. He is to be 2yrs old June 1st! I live in minnesota, I’m looking to find ppl who share my situation. It is hard everyday, but we know we need to do it for them.


(Kristina) #5

Camp was a HUGE learning experience for us (Dx’d at age 10 and went to camp 6 months later). She came home teaching US about summer/pool safety! Our first mom-free playdates (and sleepovers) were with a friend whose mom was a nurse. Now at age 13 she’s good to take week-long trips without me. Keep fostering independence in your little guy. You guys can do this!


(Jennifer) #6

I agree! He tries to check himself sometimes, and now Whenever I walk into the room with his poker, he gives me his finger. Ha! Camp sounds like a great thing to be involved in. Thanks for the reply.


(Bonnie) #7

To all of you T1D mamas, I feel your pain. My son was dxd at age 5, and now he is 21. Time, in the thick of it, moves SOOOO slowly, but, looking back, I can’t believe how fast it went. My encouragement to all of you is this - to breathe deeply and be assured that you are doing an awesome job! No one asks to join this club, called T1D, but I can promise you there is great support here, and you are among friends. You have permission to feel everything you feel - all the anger, the sorrow, the disappointment, the broken dreams, the fear - all of it. But know that there is hope. As your child grows, he will do more for himself, but it will take awhile. So be good to yourself. If you’ve had a rough night, try to cut something out the next day or treat yourself in some way - this is hard, important work you are doing! Don’t ever forget that! A special blessing that has come to our family as a result of the “always together” aspect of living with T1D in the mix, is that we are all really close and all really enjoy just hanging out together; I guess we got quite practiced at it over the years! When your child is so young, there is just so much burden on YOU as the caregiver; it’s just the way it is. It will get better over time. I encourage you to get connected with your local JDRF chapter to meet others going through what you’re going through. You might even meet a teenager with type 1 who will babysit for you!


(Melissa) #8

This made me cry just knowing there are others out there feeling how I do. You described it perfectly. You’ve given me hope to keep fighting and taking on the burden because I just have to, but I will try and find small things to help me not let T1D consume me. Thank you!


(Megan) #9

Hi. My son was diagnosed at the age of 4 and is 9 currently. It is completely overwhelming and heart wrenching. I promise you it gets easier, though I know it doesn’t feel that way. I still vividly remember breaking down in line at Walgreens. I used our local JDRF for babysitters as well as the school after school program babysitters-I’d trained them myself after all. I’m fortunate to live in a University town and was able to advertise for babysitting with nursing majors. The absolute most freeing opportunity came when my son got a CGM (Dexcom Share) that I could follow when away from him. That gave me permission to leave him with others and even have sleep overs away from home! Do you happen to have a mentor through JDRF? Thinking of you.


(Ashly) #10

@Melisswr I’m right there with you! My step daughter was diagnosed last year at 8 and it was so overwhelming. I still find myself getting frustrated and also wishing for a break. When she was taking insulin by injection we never let anyone watch her. But since she has gotten a pump, we have trained a family friend in high school for babysitting and we finally feel comfortable going on date nights. Over the summer she is staying with a friend that is a teacher and familiar with diabetes. We have also trained her grandparents and they are getting ready to take her out of state for 2 weeks. I sincerely hope you are able to find a sitter you trust and I agree with the other responses that a nursing student or teacher is a great idea. Wishing you all the best!


(Jennifer) #11

What you need is to find a Type 1 teen babysitter. That way, you get a break, and both kids get a new Type 1 friend. The teen would be more inclined to stay on top of his/her diabetes in order to set a good example, and your child would likely want to also in order to impress his babysitter. And you would have peace of mind knowing that your babysitter knows how to care for your son.


(Jennifer) #12

By the way, if you’re in the Dallas area, I have a Type 1 babysitter! :wink:


(Jessica) #13

My son was diagnosed this year 3/6/18 he is 13 and also has high functioning Autism… that is a tough pill to swallow since routine is our big thing and Change is difficult… he just got this Free style libre and it’s fallen off and won’t stay on his arm it’s frustrating… not to mention we are freaking out cause 2 weeks ago he started loosing hair… I’m so lost


(Melissa) #14

I can feel your stress through your words on the screen. You have to believe that diabetes will become a routine. It just takes some time. Now, sometimes what you do one day doesn’t always work the next day. For example, your son could eat and do the same things today and his sugars be great and tomorrow he does the same things and his sugars be all over the place. That’s the super frustrating part! You just tell yourself that you did everything right and it’s out of your control (I blamed myself a lot at first though). You can do this! T1D is a community that supports each other.


(Jill) #15

Our daughter was diagnosed T1D February 11th 2018 she was 10 (just turned 11 in May) I have to say reading all these responses made me cry and hopeful at the same time. We are so scared for our daughter and it does consume our lives but I can’t even begin to imagine how our daughter is handling it. I always tell people she is my backbone because she is stronger than me. This is all so new I am hoping that one day it will just become normal.


(Bonnie) #16

Adjusting to life with T1D will definitely become more normal, even if blood sugars don’t cooperate and become “normal”. You will learn to take your queues from your daughter, and she will learn best practices from you. Educate yourself as much as you can, and get the support - online like you’re doing - and through JDRF and other conferences conferences. You will be an expert in your daughter’s care so very quickly. Be good to yourself on the tough days, and know that you’re not alone. Sending you lots of love.


(Bonnie) #17

Hi Jessica,

I’m so sorry about your son’s recent diagnosis. Having two chronic illnesses certainly feels more than any boy should have to shoulder, and more than any one mama can handle. My son had a second disorder for a few years and it was so painful for all of us. I’m glad you’re here on this forum, and I hope you know you’re not alone.

Would he be open to trying the CGM on a different part of the body? (My son will only use his back side for CGM and pump, so I get it if the answer is no!) There are also tapes that can be used overtop and IV prep wipes that you swab on first to make the skin more sticky. The current issue of aSweetLife.org has a cover story called “7 Adhesives to Keep your Diabetes Devices Stuck this Summer.” Hopefully something listed there will help you.

The good news is that routine is super important for someone living with T1D. The more predictable you can make food choices, exercise, sleep, etc, the greater chance at tighter control. I don’t know if your son responds well to rewards, but I certainly gave my son lots of rewards in the early days. I made a treasure box for him, and every time he had a shot, he was allowed to go to the treasure box and pick one thing. It had the silliest little things in there, but it meant the world to him at the time.

I’m not sure if hair loss often happens with a T1D diagnosis; do talk with your endo. You may also ask his/her opinion on alopecia (another auto-immune disease).

I hope you have a local JDRF chapter you can connect with and where you can also meet other moms face to face. It’s so helpful. Thinking of you, and sending you lots of love.


(Bonnie) #18

HI again Jessica. I just noticed a new thread on the forum called “Hair loss at Diagnosis.” Check it out. I think it will be reassuring for you.


(Melissa) #19

Hi Jill,

I think our kids handle it better than we do. I know my 6yr old son does. Sometimes he is the one telling me it’s not that bad and it’s going to be alright.


(Jessica) #20

Doh thank you so much !! Y’all have been so kind i really appreciate all this info