We are 18 months in and I am exhausted!!! I have lost 2 jobs since her onset because of having to miss and leave work I’m angry. Bitter. I consulted Dr SEBI daughter in NY recently she has the medical file and blood work going over it I want our life back to normal!!!
Your frustrations are clear, and your wishes a shared by many. Losing one job is hard, the fact that you lost a second must have felt devastating. I’m sorry you’re having to go through this, especially with bosses who don’t have any willingness to work with you when it comes to taking care of your daughter.
Unfortunately, it’s not going to be like before, which I’m sure you realize. Maybe in another decade they’ll have a functioning implant for insulin available for kids. Still a long way off.
When my son was diagnosed, he was already “attending” an online school, which made things much more flexible for us. If that’s something that might work for you, you can look into it. And you can always off-load here when you need to.
Can the school offer help? I know people who work in schools and they speak of how they are proactive in helping manage BG in students. I hope you can get some answers and some relief. I know it must be so very challenging.
I’m sorry you are feeling these feelings, but you are not alone. I have spent many, MANY hours crying - sad tears, angry tears, depressed tears, lonely tears…I had 4 kids in 6 years, which in and of itself was not easy (or I thought at the time). Then my 3rd child was diagnosed with T1D just after her 4th birthday. I had to send her to 4K just 2 months after diagnosis and I almost didn’t. After 3 years, I was STILL feeling raw about her T1D. Yes, I knew all the things, but I still had all of those feelings most days. Then, my 11 year old was diagnosed. And all of those feelings came back times 2. And his school doesn’t even have a nurse. It’s been a journey filled with depression, anger, sadness, self loathing…BUT…I’m still alive, I’m still pushing through, and so are my kiddos. Some days are way harder than others. I don’t sleep much. But what’s the alternative, right?! We have got to be strong for our kids. We want them to know that they can do anything, despite T1D. While it feels like Diabetes is my life (cuz hello, it IS!), I want my kids to know that it doesn’t define them. You can do this! We all can. One day at a time.
How are you and your daughter ?
I have been where you are. My daughter was diagnosed at age 7. I will say the advancements they have now are amazing. I highly suggest you move your daughter to a CGM that pairs with caregiver smart devices like you at home/work and the school nurse. About the CGM, when my daughter was young she was very afraid of needles and inserting devices like a CGM. Ask your doctor for lidocaine. There is no reason she has to experience any pain while adjusting to this while so young. Also request an anti nausea medication for sick days. You will need to monitor on sick days because the medication makes them sleepy but managing a diabetic that can’t keep food down is no fun. Lastly, if you are apprehensive about giving shots or she is scared receiving them look at the “Injectease” for sale on Amazon. It was a big help for my daughter when she was younger. It basically takes the fear out of putting the needle in the skin. Hope this helps. My daughter is 26 now. Graduated from her University with an MBA and as an All American student athlete. It will get better and she will have a bright future ahead of her!
No Livonia Public Schools is not helping worth a damn! She missed the first 2 days of school because of them NOT wanting to have the 504 plan meeting
As ok as it can get … we are having so many issues with school and Dexcom… I feel like jumping off the ambassador bridge every other day…
I totally understand I get the same way. It’s been 4 years since my now 7 year old was diagnosed and I still have very rough days with her. We are blessed with her going to a great school now but her old school was an issue. I hope it gets better for all of you all. Try to take a breather for yourself sometimes even if for an hour because I’m realizing diabetes and blood sugars etc will always be on our minds as parents so it’s good to just take a breather sometimes by yourself even if diabetes is still on your mind. I dont do it all the time but I’m getting better and I suggest it for you as well because this disease will always be top issue in all of our lives.