I have been feeling a bit down today…kind of defeated and worn down. I know these feelings will always come and go, and just like before, I know they will pass. Sometimes it gets overwhelming thinking about/actually fighting every single day, in every single situation for my daughters’ safety, health and rights. Sometimes I just wish for one second that people would be able to get the bigger picture and that at minimum I would have to just do a run-down of Kinzie’s care.
Contrary to what people may think, I actually do like it when I can count on certain people to watch over Kinzie. I am with her 24/7; this disease is relentless and never rests…so when I do get someone to watch over her and care for her as I do, even if it is for a few minutes, I get a few minutes to refuel. I don’t protect her like I do because I want to be around her every single minute of every single day. I protect her like I do because I have been entrusted by God with this sweet, amazing, delicate spirit and I will do everything in my power to be successful at managing this disease and preventing as much damage as possible to her young tender body.
I don’t think that people who haven’t had a child with a chronic illness really get the entire picture all the time and sometimes I wish there were a way to just show them a glimpse of our reality, our routine, our fight, our job. I have said from the beginning that you truly will not understand it unless you live it…and that was so true, even for me. I didn’t get it until she was dealt this hand. Eye opening for sure, it has changed my view on parenting a child with a chronic illness…shoot just living with a chronic illness.
I love the support, faith, kind words, actions, encouragement we always receive…it rejuvenates me beyond words. Sometimes, where I get stuck is the constant recommendations from people, who mean well, but have never walked down a path like this. As much as I would like to say it helps hearing the words offered at times like this, I must admit it is the opposite. Telling me to just be faithful, rely on my faith, and let it be and all will be well…well, in all sincerity, that isn’t helpful. Yes, I remain as full as faith as possible, but it takes a lot of work doing so and sometimes I am not capable in the moment to push past things any further…again, unless you lived it, I am sure this is hard to imagine.
I would love to send my daughter out the door without much worry other than choosing good friends, making good decisions; but my worries extend beyond that due to the territory of Type 1 Diabetes. My fears far extend beyond choices…in fact; it extends into the world where we had no choice in joining.
I would love to be able to not check her blood glucose levels several times a day and just solely rely on my faith that all is well in her numbers…but that can’t be the case. It is work to keep her in her range and I cannot only rely on faith to do so. I would love not to have to worry about her labs and organ functions and be faithful that I will never have to give her a kidney or she will never suffer heart problems, neurological problems or vision problems. But that cannot be the case…along with great faith, much education, hard work and dedication; we work daily to keep her tip top. I would love more than anything to rest at night, sleeping through the night and go on faith that Kinzie will still is alive in the morning. She has hypoglycemia unawareness, and unfortunately we check all day and all night to keep her safe. I am faithful that I can continue to be prompted at moments, that my education and self studies continue to pay off…but my faith alone is not enough.
Yes, my faith means the world to me. It is a lot of work to be faithful…but by telling someone in my position to just be faithful and it will work out doesn’t make our load we carry any lighter…we live off of faith, we survive because of faith, we are able to continue on because of faith. We go on, every day, as optimistic as possible, because we have faith that the next day will be better.
We educate, fight, adapt, change, and push forward as parents to children with Type 1 Diabetes. We are faithful that our hard work will pay off and so we remain diligent in all that we do.
Please don’t tell me that Kinzie has to take charge at some point. We all know that…and unless you were here from beginning to end witnessing her struggles, trials and triumphs do not for one second assume she doesn’t do this. She has taken charge of much of her care…because we encourage her to do so and ensure she has a safe environment that welcomes and rewards such bravery. Most children her age don’t have half the responsibility she does; and yet, she continues every day taking control, learning new things, talking about how she feels and interpreting her numbers. This is amazing on every level possible and we couldn’t ask for her to do much more or face anything so graciously as she has this. It doesn’t happen overnight and the fact that she is doing her set changes, operates her pump flawlessly when it comes to correcting, making changes, temporary basal usage, own blood glucose checks and interprets the numbers accordingly, carb counting and dosage and so much more. Give an adult all she does and you will see that what she does on her own is completely amazing. It will always be my job to ensure the environment she is in allows her to continue to thrive in her own care; and hopefully as an adult she will witness this fight and continue to do so herself. The power of environment is quite amazing.
What I am suggesting is to listen to those around you. If you are not able to relate, don’t assume. If you cannot fathom the thought, don’t try. I don’t need someone to carry my load, I don’t need sympathy. What I need is sincerity, understanding and when you cannot put yourself in our shoes, perhaps just a little credit.
Caring for a T1D child, when you are doing everything in your power to keep them safe and healthy, takes its toll but has its rewards in the oddest of ways. It is such a very complex disease that even I do not know half of the information out there…and I do know a lot.
The frustrations that sometimes plague me remind me that everyone is human…and when I wish that people in general would just be able to understand, they would probably have to walk in our shoes…and I do not wish that on anyone. I know I need a lot more patience…and work on that tirelessly; but sometimes I hate the thought of ‘hoping’ that Kinzie will be alright, when it takes just so much more than that in every facet of life. It doesn’t take a session to understand how to care for her or a quick run-down. It takes dedication, vigilance, understanding, knowledge, hard work, persistence, faith and so much more.
Some days, like today, I am so much more tired of the fight. It seems as soon as I am worn down I am then reminded that tomorrow will be better and just like the seasons are sure to change, so is my determination. I know that I have to continue in this fight and even when it seems like a down-hill slide, it is always a gradual up hill progression.
For the love of a daughter, a mother’s fight is never over, no matter what it is we face. This fight is so worth every ounce of energy required.