I had made notes late last week that I wanted to write on divine design and timing…but life had another plan. We have had a rough week so far, but before I even get there I want to start off first by sharing some excellent news. I want to try to recognize the good with the bad. We have surpassed our halfway mark in the entire cost of our D.A.D! Which is completely amazing considering we have only been fund-raising since about the 23rd (ish) of February (one full month is all)! So my family is totally blown away, in complete amazement. It is just crazy to think of all the people backing up 100% every single day. Thank you to all of you who rally around us! We are blessed, even when life is rotten, we cannot deny it.
So now on with the bad (or, depressing) news. I normally do not like really thinking about moments like this, because they do stink and we do not like them…but then at times they also make me more appreciative (they make me seek the good in it all). We have been battling such nasty numbers out of the blue for no reason other than puberty and the fact that diabetes just sucks at times.
Saturday night, (hoping it was just a fluke) we were up late into the night just to bring down Kinzie’s blood glucose and then when we went to bed, we were up on and off to check and correct to avoid a large buildup of ketones. So Sunday morning comes and we are unlucky enough, despite our efforts, to ward off ketones. Still manageable, but they were there. I didn’t want to stay home from church as I missed the Sunday before due to Kinzie having a slight tummy bug. So to make sure she was safe, okay, in range, etc. she joined me in all of our classes. The poor thing just kept falling asleep on and off throughout all of our lessons. It breaks my heart; this is probably how she is at school and I just don’t see it at times. Got home, and it was still nasty, so we dose, push fluids, set change, extra injection via syringe…the whole kit and caboodle hoping it was just a blood clot not allowing insulin to be absorbed.
Sunday night it went completely out of control…skyrocketing well after dinner, we would correct to no avail. Set change, extra doses via syringe, new vial of insulin hoping insulin potency had just declined…to no avail. Add another frustrating late night with little sleep. I changed basal rates, I:C ratios, ISF, etc. helped a bit, but not enough change. Ketones present. Monday, same song and dance…sleepless night, high BG, more corrections, insulin, set changes, etc.
Tuesday by around 4 p.m. we had been successful of flushing out ketones! Yay! We were able to get Kinzie out of the house a bit and spend some much needed time with her grandma, shopping for awesome fabric for Mima to make her an insulin pump pack. And then BAM! We were hit it crazy high out of the blue for not reason or rhyme. So again we followed suit and treated as trained and followed intuition. Adjusting many settings again. Add another crap-tastic night and crazy blood glucose to the roster and one very tired, overwhelmed girl. Breaks my heart and wears me down. Pancreas failure!
So today we have faced the same beast. We have adjusted, changed sets, changed settings, extra insulin, etc. I wrote to our endocrinologist nurse, pretty much already knowing the answer…hormones) pleading that I am an idiot missing something and doing something wrong. No, I was reassured we are doing everything spot on. So I jump her basal all up dramatically, change ISF dramatically (more than ever before) to get ahead of the highs which is sure to be followed by lows which will require more fine tuning to find her niche for the moment. So now we wait…wait for it to help…wait for it to fall…wait for it to rise…wait.
Today, during our site change, Kinzie just had a complete melt down. She didn’t want to change sites again, didn’t want another injection and didn’t want to even download her pump info to search the trends. She was defeated. She curled into a ball and just crawled onto my lap, bawling; trying to hold it back but unable to keep anything in any longer. My daughter was just devastated, overwhelmed, tired, sad, mad…which is a point we visit on and off. It is part of this disease and a part I absolutely dread. So I did what any mother would. I held her tight, making sure she knew it was a safe place to fall apart and cried silently with her…tears would not stop. It is such a struggle of mine to watch and not fix. I will never understand how to fully do that; and that is okay because one day we will know why.
After she cried, she just looked at me and told me she didn’t want to go to school, she didn’t know what was wrong, she hated diabetes, she is tired, she is mad, she is overwhelmed and just sick of the constant. Which, my response is that is completely fine, you can be all of those things, and it is okay. Every human on the planet experiences that to some degree. On the inside I was just in turmoil…what can I do to fix this, how can I rescue her, and what can I offer to take her burden?
So we are in limbo on what to do…encouraging her to really think it through before she for sure makes the decision to stay home the remaining of the year (which, to be honest, I am completely open to. Whatever she wants, whatever she needs.) We then talked about things we are thankful for. Like being able to walk, talk, laugh, the family and friends in our life, the fact that medical advances happen every day, our medical team, our diabetic alert dog we are in the process of getting…we went on and on. We came to a conclusion it is okay to be sad, angry, mad, tired, overwhelmed but made the agreement that she needs to respect her body even in those moments and treat its needs entirely as her body needs that respect and deserves it. Any time in the past when she needs a ‘diabetes’ break she simply turns it over to me and I do all carb counts, injections, changes, BG checks, dosing and she just kicks back and doesn’t think about any of it…and it helps.
I know we have visited this place before, so I know we can work her out of it. I have hope that it will work and can work. So husband was able to come home from work early (which he had no clue as to what was even happening at the moment…and he was very much needed at home.) It was an instant relief when he surprised us and walked through the front door. So today, we rallied around Kinzie. Today we lifted her and shared her burdens. Today, we gave more to her and let her feel complete support. Today, we focused on the fact that it is okay to have a complete ‘diabetes sucks and I didn’t sign up for this’ type day. Sometimes we just need that outlet.
So we gathered up the kids and started heading out of the house, getting her out and just refocusing. To our surprise her best friend was in the driveway. She came over after school with a rose in a vase and a card just because she felt Kinzie needed it. Kinzie just broke down and cried again. What a blessing her best friend has been, and how in tune is she? On a very very very rough day, her friend stepped up and lifted Kinzie selflessly. She has such a great capacity for compassion and love, she is a very sensitive girl and we are one lucky family to have her in our life. We love her and view her as a part of us. So we took her best friend with us and we headed out the door. We stopped at the dollar store for the girls to just get a few little toys and word searches. We ate dinner the earlest we have ever ate, hoping that we can get her to bed at a decent hour. It felt good.
She was in the back of the car laughing, talking and working through (once again) her grief. It was just what she needed. Her amazingly compassionate and very loving best friend rescued her today. I think we can learn a lot from children in their capacities for compassion, forgiveness, love and acceptance.
So here we are, 6:00 p.m. and all is well in our home. We didn’t have our evening rush because we were able to start that routine earlier. We didn’t have that immediate rush of addressing any issues of the day because they were addressed earlier. It was much needed. It was much appreciated. It was much inspired. It gets so challenging in the mornings and evenings as there are 10 needs and goals to be met and no time to do so accurately. Today, it was relaxing.
Even in our bigger storms, we will receive respite care and nurturing. Even when we are to our limits we receive all through the divine promptings promoted through others. Even when we feel cursed, there are a thousand other reasons to feel blessed and thankful. Today, I am very thankful for compassion and love. I am thankful for time and timing. Today we were able to avoid our evening chaos routine and lift Kinzie when she needed us the most. Today…we beat diabetes again. Today we won. Today, even though I would have loved to categorize it as awful, it ended as beautifully inspiring.