What they should know…Friday.
And of course typing this title already starts the tears.
There are so many things I wish people knew. Starting with myself. If only I could have written my future self a letter about our journey before we got to this place, it would have been so much easier. So here is a letter from this mother’s heart.
You may not know this yet, but the journey you will face may be the hardest journey you could imagine. You will be stretched beyond your limits and drug deep into despair at many moments. But, do not fear, you will never be ALONE. You can do this, one step at a time.
Know that for every second you have to hold your breath, fearing for your daughter’s life…that another second awaits you for cheer and triumph. Know that when you feel completely over-whelmed, there will always be at least 3 people waiting to lift you up and continue on right next to you. Know that no matter what you face, in the end, there is always a reason for it. Do not wait for that reason to show before you begin to live again…you must stay strong, and carry on.
You will be plagued with guilt and grief about things you wish you were better at, things you wish received more focus, and things you would love to change…but know that this is normal. You are human, and that you can do what ever it is you need to do in order to win this battle and your family will be backing you 100%.
Know that you can never say thank you, I love you, or I need you enough. Those words will become a part of your soul.
Know that as you continue down this road, you will need to lead, guide, teach, tackle, side-step, educate many people all around and you need to be brave enough to do so at any given moment.
Even though you never thought the words ‘being a full-time pancreas’ could ever show up on your resume, remember it deserves a highlighted spot in your life resume…it isn’t easy, there isn’t a guide line, and no way to always be right; but it is your job-so do it, and do it to the best of your abilities. Always learn. Always love. Always support. Always give. Always receive.
You will have to ask for help and accept help. Guess what? It will not kill you! It isn’t quite as bad as you once thought it was, although it does come with a big gulp of humanity and humble you quicker than you ever thought humanly imaginable. And that is okay, you need it.
Yourself from the other side of the journey.
Something I want others to know…
We didn’t choose this. There is no CURE, no way to PREVENT, and it takes more lives than cancer and heart disease. Diabetes is a very serious illness. Type 1 diabetes only makes up (roughly) 5% of diagnosed diabetes cases…so of course, a lot of focus is on the larger spectrum, which is understandable, but I do fear that not educating about type 1 can be deadly and creates a huge whole in my heart, making our T1D battle a hard one to face. Without insulin a type 1 diabetic absolutely CANNOT LIVE. Their body is attacking their insulin making cells inside their pancreas, hence them not having insulin. No pill can be taken to replace insulin because the acids in your stomach destroy it before you can use it…it is done only by injection…multiple injections daily. Death can occur prior to diagnosis because it is overlooked…follow your instinct and intuition. Weight loss, irritability, frequent urination, frequent thirst, fruity breath and urine, lethargy, sweating, shakiness…and so much more. Learn these signs, embrace them, and when in doubt test!!! Yes! You too can get a glucometer anywhere on your own and even go to the physician and REQUEST to have testing done.
I wish everyone knew the struggles that can go along with an invisible disease. Aside from seeing Kinzie test her blood glucose and seeing her pump infusion sight, she is happy, bright, playful, loving, smart, funny, silly girl. She LOOKS normal and we often times forget the battle she is fighting literally every second of every single day/night. Diabetes doesn’t rest, quit, go away, give up, leave…it is always there, always changing, always harming. It is there and we cannot change that fact.
I wish everyone knew that being a sibling to a T1D is hard, and can be a tough job. It weighs heavily on them and affects them too.
I/we don’t really sleep…so if I bite your head off, you have wither caught me on a series of sleepless nights and I am near the end of my reserve (and I am sorry about that)…or I am just plain mad. I am not shy to correct or educate anyone about T1D. I have been an advocate for my children since the day I became pregnant with them…I will be one until the day I die. Being an advocate for T1D is a must for me…why would I not be? How could I not be?
Please know, it isn’t as easy as just letting Kinzie go to your party or house like every other child can do. It is about saving her life, playing pancreas since her pancreas doesn’t work…it is about keeping her alive every second and knowing how to save her life when needed (as, it has come up and will again). We do not have the pleasure to do any activity without planning and preparing. If you want to have Kinzie around, you simply have to learn how to keep her alive, signs to watch for, and what to do in emergencies. Is that a huge task? Yes! Absolutely! Do I expect everyone to step up to that plate and blame them if they do not? No, never! It can be daunting, hard, scary, and I know it isn’t possible for everyone. So please, do not feel offended when I simply do not let her go. Because actually, her life depends on me being that RESPONSIBLE, and so I will continue to be this way, no amount of time will ever change that. And thank you for respecting that.
Yes, Kinzie can eat ANYTHING! BUT, we test before, after, and any time in between because that is how we keep her healthy. Her diet is what any other HEALTHY human beings should be…a healthy well-balanced diet. No matter what she consumes, she has to cover with insulin. Whether it be a cupcake or a sandwich…there are a few ‘unlimited’ or ‘free’ as we call them in our home that she doesn’t have to cover for, but we still test before consuming them. SUGAR FREE HAS NOTHING TO DO WITH T1D!!!!!!!!!! So stop, for the love of all things educated, stop saying and thinking that! THINK carbs!!! We count carbs!!! Look for healthy carbs, or at least count the carbs in things you offer her. If you do not know how, we do!!!! And we do not mind doing it, what we do mind is not covering her carbs or not encouraging her to check her blood glucose before she consumes anything, or if something seems ‘off’. So do not hand her a sugar-free candy and everyone else a cupcake…or do not hand her the same thing as everyone else and wonder why she isn’t eating it (probably because she knows she must test before she eats ANYTHING and doesn’t feel comfortable in her given environment…so welcome those tests, welcome T1D, be thoughtful but don’t make it the focus. Let her feel safe and welcomed as is!) We dose for carbs…but we cannot go carb free! It isn’t that easy, that would bring starvation ketones which are poison to her body.
It isn’t as easy as dropping Kinzie off at school or practices. We do not get that luxury. Yes, it is that serious. Yes, she can die. Every single thing affects her blood glucose. Hormones, weather, stress, emotions, illnesses, environments…you name it, it affects it and we have to take an educated guess how to dose/cover/change for it.
BUT, know that Kinzie can do ANYTHING and EVERYTHING…we just have to put in a little extra work to keep her safe and healthy in order to do so.
I wish you knew when I kiss her good-bye, when I say a prayer for her (and my other kids) safety and health…I mean it as if it were my last words. Saying ‘good-by’ as she leaves even for a play-date or practice weighs on my heart, because I will never know what her body will do when I am not around. I never know if that kiss, hug, prayer will be my last and I do not ever want to regret not giving one. It is different being a parent to a type 1 diabetic child, it can be scary, and the possibilities never rest. I fear the day I am not around and an emergency arises…that is why I am picky and choosy as to who is around her. You have to be on high alert, you have to be educated, and you have to be willing.
I wish you knew the feelings that take place in our darkest moments, our reality. I wish I could describe my deepest fears and do them justice. In our darkest moments, we feel beyond defeated and sometimes so full of fear that it hurts in every single way. Watching my child get hit with extreme highs that makes her entire body ache, her ability to think is altered, and poison just sitting there….well, watching that alone just absolutely sucks, no mother would ever want to see this. And witnessing the extreme lows completely sucks in every single way possible. Watching your child shut down, literally, her body shutting down kills you. It completely brings your biggest fear knocking on your front door. You cannot ignore it; you cannot run from it…your biggest fear is a reality, and daily that reality plagues you. But you have to move on.
I wish you knew the burdens T1D can bring. Financial, marital, spiritual, emotional, physical…it can and does wear on every aspect in your life.
I wish you knew that the life I/we lived before does not; it will not ever exist again. Our life has changed, we have changed…so do not think it is because of you. It is out of necessity.
I wish you knew that I do not care how many times you roll your eyes when I bring up T1D, because for me, it is therapy, it is a way to continue fighting, it is being an advocate, it is doing my job. So no matter how much you get sick of hearing about it, I wish you knew that I get sick of living with it, but cannot change that so I will change the world.
I wish you knew the impact one person can have on Kinzie’s day. One person advocating for her, one person taking time to understand her life, one person not pitying her, but learning because of her…well, it’s priceless.
I wish you knew that sometimes we need to cry…sometimes we just need to let it out. And Kinzie needs a safe place to do just that. Where it is allowed and she can do it safely while still respecting her body’s needs.
I wish you knew that being silent hurts more than being afraid to say the wrong thing. I wish you knew how much being an advocate for us means to us. I wish you knew how much you can help…how much just one person joining in can help.
I wish you knew how much I appreciate all of ‘Kinzie’s Krusaders’ and all of the help, love, and support we receive. I wish someone could stand in my shoes for one moment to experience those small miracles and tender mercies we have been so blessed to receive. It can be a pretty amazing sight, and pretty over-whelming at times. I wish you knew how much we love you.