Today is going to be one of those ‘venting’ posts. Sometimes, no matter how hard you try to be positive and completely okay with the trial you have been given, you have those moments of struggle. Well, for me, that moment is here and full-blown. In these exact moments, even my own knowledge as to why we are given what we are, can’t reason with my emotions; nothing I hear, know or see can make me okay with it. I admit I absolutely dread these moments; and always pray when they come, that they don’t last long…because each time they present themselves I fear that I might not bounce back to my once former strong self.
I am bitter. I am angry. I hate diabetes. YES! I hate Type 1 Diabetes with every fiber of my being…the same diabetes that I also profess to be thankful about in the strangest of ways. That is right, T1D, I hate you and today, probably the past week or possibly even month, I am finding it hard to hold onto that silver lining. I feel like T1D is a thief that robs all the good. I also know it leaves different aspects of good…but it most definitely robs us of our immediate safety net. (This is me trying to reason with myself not to hate it, and to remember the things I am thankful for….it isn’t working today).
The longer we live with this disease the more I am able to witness it robbing my daughter of these small insignificant moments that really add up. For example, dance. Dancing is her life. Dance is her passion, her hobby, her strength, her outlet…and yet Type 1 Diabetes doesn’t care. It interrupts anyway. I can see the physical change wash over her entire body and I know instantly that she is once again victim to its nasty cold grasp. During practice I can see an ashen color wash over her body and see her fight within herself to keep going even when it is physically becoming impossible. Her comprehension fades, her ability to move coordinated disappears, her eyes gloss over and her movements become lethargic and weak, she just looks lost. It is heartbreaking, and in that exact moment I want to rush to her side and fight for her. I see that inner struggle, I see it shutting her down when she is trying her hardest not to let it (even if it is for 15 minutes)…and then I feel enraged. I feel PISSED! I am angry that it has the nerve to make her fight so hard, even during a short 2 minute dance routine. It literally won’t even let her finish that one small routine. No one should have to fight so hard, every day, to do something they completely love…but my daughter does. Many other children do. (so why is it education is lacking as a whole in world when it comes to Type 1 Diabetes?)
I hate that she has to fight and really all anyone can do around her is stand guard…and wait. I can’t necessarily fight it for her. As a mother, when our children are in a fight, we want to jump in and aide them in each battle. But imagine having your hands tied, your voice muffled, and your heart stilled. Imagine feeling paralyzed, not being able to fight, and having to watch that inner struggle daily (several times a day). It is a mother’s worse fear. All you can do is wait. Hope. Pray. And wait. Physically I cannot fight this battle, physically I am powerless. Physically, I cannot touch it. Nothing in this world is worse than watching a battle for life take place and physically you cannot do a single thing. I can check BG, I can give a juice, I can educate, I can administer glucagon shot, we have Elvis to catch everything more quickly and I can make adjustments daily to her regimen…I can even hope that all I do is good enough. I can do multiple tasks, and do them flawlessly…but physically cannot fight this battle for my own child. T1D threatens her life daily…THAT enrages me. It ticks me off, it fills me with hate. And these small insignificant moments, when they come, make me bitter.
Today, I am bitter. Yesterday I was sad; and Sunday I completely hated diabetes. Some days it wipes all of my strength away…it robs me. Sunday was one of those days. I loathed diabetes Sunday, even at church, I hated diabetes. I was cursing diabetes and the entire negative it has brought into my amazingly strong daughter’s life. Nothing I would hear, see, do, or you could say could have changed that. I was full of hate and it was here to stay (for now). I know life really isn’t fair…it isn’t. There is nothing fair about life on days like that. Reason? You couldn’t reason with me to save your life on days like that. I am sorry but don’t even try. I didn’t want to be around T1D, but I wanted to soak in my daughter and have her around always. I didn’t want to go to church or even try to focus with it looming over our heads…but I made us all face the day.
It was complete meltdown city. Kinzie was full of hate and directing it all towards me. She was refusing to get dressed for church, refusing to eat, refusing to listen to her D.A.D., refusing to be nice, just full of hate, too. She was kicking, screaming, crying and completely hating T1D. Blood glucose was sky-high out of this world (for her, 300s are rare and kick her butt) ketones rising refusing to leave. We were all on edge and pretty sure all full of hate. So I did what any mother would do. I stood my ground. I stood strong. I took all the hate she had bottled up and directed towards me and pushed it down, every inch of the hate stinging as it hit my ears, my heart and my soul. But I stood strong, and on the outside looked unmoved by the hate (crumbling on the inside with every sob, scream, cry, word, look, stare…I knew this wasn’t her…I felt hateful too but I can also understand where it was coming from). I continued on. Goal: to attend church; not to let diabetes win while we all sit at home in our loathing filth of hate towards it.
She refused to get ready, so I made her. I made her leave the house hair undone, dress was a mess, face stained with tears…we left. When moments hit her like this, you cannot reason with her either…I blame that on my gene pool. She was devastated. I was sad, and my husband angry. As we drove to the church her cries became louder, her screaming, huffing, hateful words continued to flow. I didn’t like it, I didn’t want to hear it, but I had to. Once there, the family went inside while I remained outside to throw her hair up in a pony tail (yes, I was nice enough to tuck the mess it was, up away). As I was doing her hair she continued to cry… ”can’t I just go to your classes today? I don’t want to leave you! I don’t feel good! I don’t want to be here!!!!!” Calmly I listened. Calmly I replied “Since you started going to class by yourself, I don’t go to my classes. If I do, I leave often to walk by your class and check. I do it so I will be available if you need me. I miss my class so you will be safe. I walk the halls, so if you need me, I will be there. I sit by the hall, so I can keep watch.I always keep watch. I do it because I love you.” And silently tears streamed down my face, it hurt so much…I do it all because I love her dearly…but all the love in the world can never take this from her and give it to myself. Oh how I wish I could let my body be tormented by this disease so she could have that freedom back. And then it came…the moment I didn’t expect. She was still facing away from me as I was finishing her hair. “Whaaa? You do mom? Oh mom! I didn’t know you did that! I love you! I don’t ever want you to think I hate you, I don’t hate you!” That ended her crisis. She was back. My daughter was back.
“Mom, can we wait a minute out here so I can gather myself?” she asked. I replied with a “Let’s walk into the building and we will go straight to the bathroom and wipe your face and sit in the mother’s room for a bit and just breathe” (simply because I wanted to at least walk inside that building on time…goal accomplished, we were drained, but it didn’t keep us down). And we did just that. We survived 3 hours at church, feeling rather run-down by the events that just took place. She physically not feeling well the entire time, staying sky-high, with corrections only to hit a 60 the last 5 minutes we were there…and again…I felt the hate creeping back inside. So not fair, I hate having to watch T1D in action, but thankful I can watch it, because it means my daughter is still here with me.
Guess what? We won…we went to church, we went feeling completely and utterly defeated, but we were there. Kinzie bounced back and had a wonderful attitude and faced the rest of the day, feeling completely yucky, like a champ. For us, during these times, this is a huge thing…because we can easily stay home and say ‘it was just a rough day. Next time we will go’. But those words never left my mouth. Determined to go, I pushed past the hate in all directions, ketones and BGs (even though on the inside I was sobbing she was feeling so terrible)…I stood strong. I know how I handle nasty days is what she will learn, how I handle scares, she will learn. I don’t want her full of fear or ever use T1D as an excise not to do something…she can do anything, even on rough days. Even things we don’t really feel up to in the moment…I have to set that tone. She wasn’t going to witness me giving into T1D because it decided to give us a nasty bout. Nope. Life happens, even when numbers get ugly, hatred rises to the core, ketones refuse to flush out, and her body taking a toll…life happens. And we will live life, every moment and not succumb to this nasty creature we have come to know too well. We faced church, extra checks, me by her side and Elvis on the other side. We faced it, all together as a family. Jared naturally helping out with the younger kids, as he knew mom was focusing on getting BGs down and ketones flushed. He flawlessly takes control where he knows I slack. I adore him. I am thankful for him…I admire him so very much.
I have to admit I know these moments will always come and go. I have also accepted that what we (or Kinzie) face will always be here…no amount of praying will ever make it go away. The good comes with the bad, and in moments like this the bad just covers up the good only to try to swallow us whole. Don’t let it. Kinzie is a fighter, she has always been a fighter, and she is far stronger than any single person I will ever meet…as are her siblings; they are all amazingly strong warriors. I also know that bitterness only dwells momentarily, and that when we bounce back, we will bounce back stronger. I also have come to realize that it is okay to have days like this, it is normal…and it is part of the packaged deal. Tomorrow is always a new day, tomorrow will always bring new perspective. My perspective today is “at least” I am thankful I get to witness the bad too, because I appreciate the good so much more, it truly is sweeter. “At least” I have my little family, and I get to hold all 4 of my children. “At least”….when the silver lining is faded…there is always “at least” until you can pull through those moments to land on the brighter side.