I need a moment to vent. I am not in a good place today. I feel like I am failing my son and family as a mother and as a caregiver. I wanted to believe that after a year and a half we would have a better handle on Rory’s diabetes and he would be in better control, but each day continues to be a struggle and we seem to have no consistent sense of control. I know this disease can be so unpredictable and make no sense so much of the time, and for him as a growing toddler, his blood sugars will fluctuate so much anyway, but I desparately want to feel like we have a handle on how to treat him appropriately. I get so discouraged most days and everything just consumes me. Everything about this disease has consumed us for the last year and a half and I feel like I missed out on just enjoying my little boy. And my other kids for that matter. My oldest is almost done with kindergarten and I feel like I haven’t been there much for her to help her with learning to read and write. And then Ava is almost a year old already and I feel like I missed out on just enjoying our last child’s first year and feel terrible for all those times I had to just put her down and listen to her cry while I had to do something with Rory.
I know I am just being selfish, and need to accept this as our life, and his life and just move on, but I am tired. I know others are in a different place and doing well and other are just beginning this life changing event. We are some where in the middle and I want to move on, but I feel like things will never get any better and we are stuck in state of being out of control no matter what we do.
Yes, I stay in contact with the docs and nurses and work with what they instruct us to do, but it seems like we very rarely get the expected outcomes. Nothing makes sense! And it drives me nuts! I am tired. I need a break…I wish Rory could get a break. But I know he doesn’t understand and I wish I could just make it all better and go away…but I can’t. But I know we can’t give up, he is depending on us and I want him to have a healthy hopeful future.
Alright I am done, and I need to stop being so selfish and feeling sorry for myself and this whole situation.
Oh Natalie, my heart goes out to you.
I have had T1 for 35 years and still fall into long stretches of nothng going right. But, it always does eventually get better.
Wishing you better days ahead.
YOU ARE NOT SELFISH!! Don’t ever feel that is the truth. A mother dedicates her life to her children and, although it may not be going smoothly right now, you are and will always be a positive influence on your children’s life. You are not expected to be perfect, so don’t try. You can only do what you are able to do. Just keep learning what you can and take it one day at a time.
You might benefit from a small break from your family. Can you get away for a couple of days? Be lazy, warm in the sun. Read a book … a silly romance. Take a spa day and have them pamper you. Stay at a cabin or motel or fancy hotel … somewhere where you will be the center of attention. I feel that you need a respite from your daily life right now and you have to take care of yourself so you can take care of your family.
I can’t say that I totally understand that you are going through because I am not a mother of a diabetic child. Not even a mother. But your note is screaming for help and I can’t help but kick into the “materal” mode. If you can’t afford to get away for a few days, how about a few hours. Get someone to babysit and go shopping or to a day spa. Bum around with a girlfriend.
I’ll pray that you can find some relief. Whatever you do, give yourself credit for being a great Mom.
Please feel free to chat with me. You can go to my site and leave a message.
Thank you all so much for your kind words. There are times when I feel like I can’t express my feelings because so many people around us don’t really understand the situation. But I do find comfort in this site and connecting with people who do understand, either because of dealing with the disease themselves or for caring for someone with it. We just get so frustrated when it seems like we can’t correct his trends of high numbers. And we can see how it affects him and it breaks my heart, because I know he feels crappy but doesn’t understand and so he acts out. It is hard enough with him being a rowdy toddler boy, I can’t always assume it is just the “terrible 2s”, then again I can’t always blame everything on his blood sugars either. Today was particularly frustrating. After a few highs in a row I decided to change the site (after I had just changed it yesterday) and start fresh with a new bottle of insulin and everything. Ketones were negative, but he just wasn’t getting back to a good range and then I apparently severely misjudged carbs. at dinner (we decided to go out) and he was 579 at bedtime! Ketones were still negative but we covered by syringe according to what the pump would have given. Checked him every hour to make sure he was coming down and 4 hours later he was 228, but he was soaked, diaper, pjs, crib sheets, I had to strip everything down and change everything. Thankfully the poor little guy is so used to our nightly checks and everything that he hardly ever wakes up for it all. I am hoping tomorrow will be a better day. I just feel uncomfortable to leave the house when he is all over the place and that is how I get stuck in this mode of despair and let it just consume my every thought for the day. And I can’t tell you how many time I have felt so guilty for sleeping through my alarm at 3am to check him when he has been either high or low to make sure he is ok. We just don’t like the thought of actually sleeping through the night without checking him.
I think part of the stress is the thought that most of the care is done only by me. My husband works long hours Mon-Fri. and I am mainly a stay-at-home mom, so I am doing most of his checks and meals and all the site changes and handling of the prescriptions and keeping tabs on our supplies and mixing up new bottles of diluted insulin. So when I think of trying to take a break and get away for a little bit, I worry about how all that will be handled. And it seems to never fail, when I do try to do something different for myself, I just recently took a course to become a Certified Breastfeeding Counselor and attend a conference, my parents came to watch the kids and Rory has issues with low BGs not repsonding well. Or I failed to realize that we were running low on some supply and need to make special arrangements to get it and I hear my mom saying “how could she forget to check that” and I get so upset and overwhelmed.
But we do have a wonderful supportive family and my mom has done so much for us, she has learned how to do his checks and give his insulin, before by syringe and now with the pump, for those times when I have to do something for work and be gone during the day. And I know it hasn’t been easy for her, she wants to just come visit and do “normal” grandma stuff.
But I am going to try and think positive and hope for a better day and get him back on track.
Natalie, I can only imagine the stress and strain of dealing with diabetes in a toddler. I have a hard enough time dealing with diabetes in MYSELF. I sometimes feel like no matter what I do, I just can’t get it right. Makes all the work that we do seem meaningless.
But it’s important to keep going and not to give up, but I already see that you have a great attitude. It’s OK to be overwhelmed and it’s really important to vent it. And it is not selfish to want to take care of yourself (and your other kids too). They are many depending on you-- so it’s even more important to make sure that YOU are okay!!
Thank you. I need to try to remember to stay positive in front of the kids, especially Rory. I sometimes show my frustration after checking him and not seeing the number I expected to see and I don’t want him to start feeling like HE is doing something wrong. Although, he is totally oblivious right now to most of it. I hear of other kids around his age becoming more aware of it and that not every little kid is doing what he has to do. Must be a boy thing that he doesn’t seem to notice right now :). But I know he senses my disappointment because usually when we get good numbers we are smiling and giving high fives.
I think a lot of this frustration will be relieved next month when we can get him hooked up with the CGM 3 day trial so we can really see what is going on in between his meals and how his basals/boluses are working for him and then adjust settings as needed.
