Confession

This post is a confession.  I try to make the most of my blog posts; try to always be the optimistic person…TRY being key word here.  I try, but I do not always succeed.  There is an ugly side of this world, an ugly side of me and it sneaks in every once in a while.

When Kinzie was diagnosed, I knew Diabetes, I was fully aware of its effects it has on the body…but I just didn’t KNOW Diabetes like I ever though I would.  I was able to always have a defining line between it and me.  I had always said two diseases I would never want were Diabetes and Cancer.  I wish I could take that back, I would take diabetes in a heartbeat from Kinzie. I would do in a second, I would much rather have it than my beautiful, wonderful, precious daughter…why not me? Why her?

I didn’t know anyone that had type 1 before Kinzie…I came in contact with a few patients here and there, but rarely had to stare type 1 in the face.  Type 2 diabetes is my familiar…I dealt with it on a daily basis in my job.  So upon our diagnosis, I wasn’t quite sure the extent of the beast we were about to face.  As bad as I knew it to be, I was naive.

I wish there was a book or outline for it. There simply is not.  I may make it look easy on the outside at times, but it isn’t. It is like a never-ending roller coaster. I wish I knew exactly what was in store for us, but perhaps it was better I didn’t, perhaps it was better I was blinded by sheer panic in the beginning hidden by my obsessive researching and organizational skills.

Once a diabetic, always a diabetic, it is a fact of this disease.  No cure, no way to prevent type 1. It is hard, it is difficult, it is unpredictable,  it is tiring, it is taxing, it doesn’t rest, it doesn’t slow, and it doesn’t ever go away.  What once was will never be again.  What you once knew as life will be gone forever.  You will miss those days, you will long for them, and you will catch yourself asking why? And then you will feel guilty.  You will live with the guilt that your child has this disease and you do not.  Her body is broken, and you are not.  That this is forever for her, and your body doesn’t have to go through any of the torment.  But if you continue to dwell on this, you will beat yourself up and continue in a pattern that isn’t healthy.  You will get stuck and never progress and never live.

This disease makes it necessary to redefine your life.  Let go of what you knew as normal. Let go of what use to be.  To be healthy you have to come to terms of what you have been given and what you are still blessed with.  I have been able to do that, and realize that I am thankful for my life, I am thankful for every single moment I have with my family.  Plain and simple, I am thankful. I appreciate every breath my daughter gets to breathe and every milestone she accomplishes.

Leaving her is different than it use to be.  Letting her go play with someone, going to school, dancing…it is all a trial.  I have to try hard to let her do these things without me near.  I always cringe when she leaves, I hold my breath, and I pray she will be okay and those around her vigilant. I catch myself worrying about her and her blood glucose…is she high? Is she low? Will someone be there to help her? Will they catch it in time? If she needs me, will I be able to get there in time? It is different, it will be different, but I accept it.  I hug her tighter, love her deeper, and embrace her fully.  She is a gift to me, which I always knew, but know now how precious she is and how quickly our lives can change.

I have never sleep like I use to.  Every bump, creek, squeak…I am up and running to her room.  She is my first thought when I wake up and my last thought when I go to sleep.  Sleep has an entirely different meaning, and I have realized that I can go without much of it and function out of necessity. If I sleep through a night check alarm I wake up in a panic and feeling like a big failure and hold my breath until I get to her room and see she is okay. Night times I fear the most and my nights will never be the same.

I have been exposed to the ugliest of people.  I have been exposed to the ugliest part of humanity and the ignorance that dwells within it.  A place I would rather never meet again.  It isn’t easy, but a fight I have to fight.  A fight my daughter will face forever.  Not every person understands a chronic illness.  Not every person has the ability to empathize or relate.  Not every person knows the importance of this disease.  Not every one knows, but on the inside I am screaming in frustration, because every one should know, everyone needs to know.

Sick days are magnified to the fullest and test your problem solving skills, reaction times and logical thinking.  You are always on your toes.  It is ever-changing and you can only anticipate and treat with an educated guess.  You catch yourself predicting illnesses before they even hit; you learn to read their blood glucose reaction.  You learn that you are much more than just a caregiver/mother.  You are a mother, nurse, doctor, investigatior, detective, pancreas, wife…you are everything, and every outcome depends on you.  You function off of intuition on a daily basis.  Your job on learning never ends, I will never know enough. The more I learn, the more it opens my eyes and I realize the magnitude of this disease.

You will find that many times you are teaching the health care workers, school nurse and faculty, Sunday school teacher, friends…No one person is capable to care for your child.  No one will ever be ‘safe’ enough.  No one can ever meet your standards…no one will ever treat her like you do, or so you think.

This disease is ugly and nasty.  But just because it is an ugly and nasty disease that doesn’t discriminate it doesn’t mean that you have to fall victim to it forever.  I have found that the Type 1 community is a very strong, tight-knit community.  It is very welcoming, empathic, loving and rewarding community to be a part of.  Good always comes with the bad.  We are thankful for our Type 1 extended family and the role they play in our life.

Life goes on, you move on and you adjust.  What I once could describe as falling into a dark never-ending hole has simple become a bump in the road.  You manage, you change, you move on…you do it because you have to.  You become better equipped every day, learn everyday.  You are thankful for every day.  You find your true self.  You realize who will always be there for you and who is willing to help carry your burdens.  Life becomes richer, you become stronger.  You will find strength you never knew you had.  You become a person you never knew you were.

Even at its ugliest, diabetes does not have to define who you are or how you act.  It isn’t easy.  It does get easier.  It never really changes.  You change.  It will never be the same.  You adapt. I hate this disease, I hate that it has targeted my daughter.  Feeling this way is normal.  The bad days hit, the hard times come…but we evolve, we learn, we grow, we deal…and in the end we are stronger because of it.

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4 thoughts on “Confession

  1. I definitely agree that type 1 diabetes does not define you. It’s just a part of you that most people don’t even realize until they see you poke or give insulin. They momentarily see it, and then they forget about it. For us, it never goes away. It gets easier, and then it gets hard (only momentarily).
    In a way, I sometimes see diabetes as defining myself. But that’s what I feel on the inside. I’m constantly thinking of it, trying to make it better, the highs lower and the lowers higher. To everyone else, I’m just a normal college student.
    Diabetes definitely does not define us, it’s just part of who we are.

  2. I too am a nurse mom, and my daughter has T1D. I just lined to my facebook this post because I could have written every word. From Mom to Mom let me tell you–You’re doing great.

    • thank you for reading! 🙂 Sometimes the role as mother is blurred by the role as nurse…and vice versa. I am sure you have experienced that as well. But what i am absolutely sure of in this unsure world…is I am so very thankful for my medical background. It has been a blessing 1000 over!

  3. I just lined this to my facebook. I am also a nurse mom, and this too is my life. My daughter with T1D is 12, and it has been a roller coaster since her diagnosis 2 years ago. From mom to mom, can I just say, you are doing great.

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