I just wanted to sincerely thank every one of you for your replies, suggestions, concern, and support!!! I want you to know that although I can’t reply to each post, I have read and re-read them all multiple times, and I can’t tell you how much comfort and “calmness” they’ve brought me in this storm!
As a father, I think you always have a sort of image in your mind of how you’d like to see your child’s life turn out, and momentarily, this diagnosis shattered all of those images. I’ve always typically been calm, cool, and collected, and it’s served me well in a lot of areas. When this all happened, it was something I couldn’t reason or “manage” my way out of, and I felt completely vulnerable. It was life smacking me square in the face, and I had no answers. When I made my original post, I was in a very low place emotionally. And while I still (and will probably continue to have) moments of fear, anger, sadness, etc. reading all of your replies gave a much needed sense of optimism. From young adults and teens, who have to deal with the pressures of school and social status while managing diabetes, to those who’ve thrived in life while fighting this disease for decades, to parents who’ve shared the same fears as me, you’ve all offered me a sense of hope that my children’s life doesn’t end with this diagnosis, it’s more of a slight detour.
While my family continues to adjust to our new “normal”, I have taken steps that have helped me feel more active in this fight-many thanks to your suggestions and advice. I’ve reached out to our local JDRF chapter and plan on being very active in that area. I would love to find families with children around the same age as mine to connect with and build long-lasting friendships. I’ve spoke numerous times to our medical care team about options that are available (pumps, CGM’s, etc), and they are very much on the same page as us. Our next steps will be dealing with our insurance company, to make sure they’re holding up their end of the deal. I know it can be a fight at times dealing with insurance, but it’s a fight I’m more than willing to undertake on my kids behalf.
As for my kids themselves, they’re adjusting to this life change as best they can. There are still tears at times (mine and theirs), and the questioning of why do I need to get a shot if I don’t feel sick? We’ve tried to be very open with both of them, and explain as simply as we can what is happening in their bodies, and why they need the medicine; not because you are sick, but to keep you strong so you don’t get sick. Coming home from the hospital, I think my natural thought after seeing them with tubes and iv’s etc, was to see them as sick. But in reality, they’re the same, bouncing off the walls, getting into everything, kids they were before. Probably even more so now that they are feeling better. I’ve had to tell myself a few times that they are not “sick”, and they can still do everything they did before they were diagnosed. We just have to be more aware, as parents, and make sure we are keeping their glucose levels on point. As mentioned in a reply above, kids are resilient. I admire how they tend to live in the moment. They can be crying and scared when they get their shots, but 5 minutes later they’re laughing and asking if they can go ride their bikes, or go to the park across the street, after they finish lunch. The shot seems to be the furthest thing from their minds, and they aren’t dwelling on when their next one’s going to be; like I can tend to do. My daughter amazes me almost daily with her progress. She is now doing her own “finger pokes”, with her parents supervision, and getting a little braver/tougher with each injection. Her little brother seems to be picking up on that, and is making little strides of his own. He isn’t on board with the shots yet, but he now will pick which finger we poke. Before he would curl his hands into little fists to try to keep us from getting to his fingers. Small victories, but these are what keep me going.
I still have times of sadness and fear, when I think that we’re just beginning this journey. I fear for what the future might hold for them. Are they going to use this as a means of control as they get older, and not take their insulin as a defiant teenager? Are they going to be teased and made to feel different when they get further in to school? But for now, I’m just trying to focus on the here and now, and do my best to make them comfortable with who they are and what they need to do.
I apologize again for the long rambling reply, but so many of you took time to help a complete stranger, I wanted to make sure I thanked all of you, and let you know where things were at. I fully plan on staying active on these forums, as it has been a godsend for me and my family just feeling like we’re not alone in this. I may not be posting a lot, since right now I probably don’t have much to offer in terms of advice, but I will most definitely be browsing through the forums and cherry picking tips and suggestions I come across.
Thank you all again!