Ever have the feeling of being completely out of control? No matter how hard you try to control, fix, help, learn; you just NEVER can quite get there? You never master that aspect, and ultimately feel an overwhelming sense of guilt in the end that you do not have enough control to make things easier?
I wish I knew how to fix everything, every emotion, every negative coping skill, every negative thought…I wish I knew how to take all that pain, guilt, and struggle away from my kids (well, from my family). It has to be one of the hardest things to deal with facing T1D (besides the reality that it can take her life and takes a major toll on her poor body). I seriously want to be able to shield them so badly from that reality, and no matter how hard I try it creeps in on us and takes our breath away at random moments.
I hate that. I can honestly say I completely and utterly hate that about T1D. I can see internal struggles going on and off within Kinzie and Jared and I never know exactly how to ‘fix’ it, other than to tell them it is okay, they are safe and can talk to me about anything. I try to always validate their feelings and allow them to know that it is okay, it is normal. Heck, I hate Diabetes some days too!
We have been in a whirlwind on and off for a few months. We have had many blessings, miracles, and triumphs…shadowed by sadness, chaos, and sometimes just nasty downers. Kinzie and Jared have both had their fair share of ‘I hate diabetes and what it does’ days and lately I am a little worried. I do not want them to feel overwhelmed with their emotions and not know how to handle them in a positive way. I don’t want them to rely on negative coping skills or be afraid to talk about how they feel (I have suffered from that mentality for a long, long time, and it just doesn’t make anything better).
So last week we had 2 crashes (one of which was pretty darn emergent and took everyone’s breath away). I can see each of the kids processing it differently and the reality from it hitting them at different times and different ways. I can see it hitting my extended family as well. I want to take that away. I want to carry that burden and think it completely sucks that they all have to have that to process and deal with.
Kinzie has been a bit ‘feisty’ this past week…I was hoping for it to just be BG out of whack, recuperating from a nasty week…etc. But alas, today we got to the root of it.
All in one swift conversation between Kinz and I, a complete and total emotional break down was in full force. She once again hit her limit and her emotions had nowhere to go other than out. My heart sank when through tears she managed to let out the words “I just don’t want diabetes. I don’t always feel safe without you.” (Because, well, I don’t want her to have it either and I don’t get that option. I can’t fix this). My heart broke, I hurt for her…I wanted to make it all better, I wanted to take that burden from her.
<*Insert great Best Friend to the rescue moment here* Kinzie’s BFF and her mom came over to be with her while I had to pick the boys up from school. We are lucky to have wonderful people surround us. Without hesitation they were there!>
All I could muster out was “I don’t want you to have it either, but we cannot change this. I know I am thankful we have diabetes and not an incurable cancer…because with diabetes we can LIVE. We have been given many tools to help us fight this disease and every day there are amazing ideas being inspired and born by many people to help improve treatment of diabetes. Like your dog! We are so excited for your dog and it is another amazing tool that was inspired, another tool we can use.” I then told her that her dad and I were led down certain paths to have the knowledge to keep her healthy; and even when she can’t help herself we will always know how to help her. My poor kid, I don’t like how she has to deal with such ‘grown-up’ emotions and realities.
I guess that is my internal struggle the past week or so…taken aback with our BG crash. It was a reality check in complete full force.
So today our conclusion is: 1. We are thankful for the tools we do have/will have to fight. 2. We are never given more than we can handle. 3. It is okay to be sad, angry and mad. (Bottling it in doesn’t help). 4. Being proactive and advocating makes us feel better; like we might be making a difference for someone else.
Then our plan was born: A family home evening with friends and family; BBQ blowout. Next week Kinzie and I will plan and organize a BBQ to put together and a presentation with information on type 1 diabetes, signs to look for when you are around her. What to do in emergencies and how to deliver glucagon shot (hello expired glucagon and oranges!) Making sure those around us are better prepared and she always feels safe. This will be part of our curriculum next week. Kinzie walked away from my lap with a smile on her face and ideas already forming. It didn’t solve everything, but I am hoping she walked away knowing that I hear her and she sees that putting her energy into something positive can always help her release any negative energy that she doesn’t know what to do with.
I can only pray that I say and do the right things at the right times for my family. I hope I am able to remain vigilant (perhaps more vigilant) and recognize when they are struggling. One day it will all make sense.