WHAT YOU WILL SEE.
What you will see is a girl that wants to be normal. She will roll down the hill with her friends, jump in the pool, and laugh loud as can while she bounces on the trampoline. What you will see is a girl that is busy with her schoolwork, arts & crafts, who is making silly faces at her baby brother and chasing her sister through the house. She is strong and brave and you may know she has diabetes. But she's normal too. She's her normal.
You may catch glimpses of what she does. She won't make a big deal when she is having a sugar low. She will just make her way to her snacks and take care of it. She won't tell you when her blood sugar is high. She will just grab her remote and fix it. And if her site goes bad she will make her way to a private place and change it. She checks her blood sugar when needed with no shame but no words. She may share with you or answer your questions if you ask. Sometimes there are storm clouds in her eyes or her emotions are on her sleeve but you think it's just her personality and thats ok with her because these emotions ARE part of her, too. She's brave & happy and she has dreams. She's quirky and not always easy to read that's why I call her my rainbow.
She's a ray of sun, a good friend and a hard worker. She's her dad's shadow and her moms helper. She smiles and she laughs and that's what you see. But there is a hidden world and in the name of diabetes awareness I will reveal a little bit of it. This isn't to complain, this is to explain what type 1s go through and share a bit of their secret life.
REVEALING A GLIMPSE OF HER SECRET WORLD
Make no mistakes, both sides are real. She is so much more than what she has to do but what she has to do IS part of her. I will explain the algebra she does each day, the Jeckle & Hyde of emotions and chasing the invisible monster. I will tell you about the physical and mental battles and how she fights. And this is only really a glimpse into her life from a parent perspective.
CHASING BLOOD SUGAR
A big part of the life of a T1 is chasing a monster that relentlessly stalks them. My girl chases it with blood sugar checks, CGM device and insulin. Her blood sugar is different every minute of the day and many factors drastically change it. She isn't perfect but how many other people have to think for their pancreas at all times? I think she is amazing.
Why does she chase her blood sugar ? She tries to keep her blood sugar a normal range because when it's higher than normal it damages organs and creates havoc in her body. Extreme highs can cause her body to be toxic or go into a coma or even worse. When it's lower than normal the body can't function properly and of it goes too low it can be instantly life threatening. Constantly doing the balancing act is her secret world because a lot of thinking, calculating and chasing is going on. Blood sugar changes constantly and this is no exaggeration and she CHASES IT, stalks it and thinks about it ALL the time.
WHAT YOU WON'T SEE
What you won't see is her looking at her food and trying to calculate how many carbs each bite has so she can match it with insulin. Sometimes she reads labels, sometimes she weighs or measures food, & sometimes she uses her judgements based on what she knows and the past. You won't see her adding and subtracting insulin calculations based on her number, her upcoming activity & other factors. But she does. Sometimes she has to drink or eat when she is not hungry and sometimes she is hungry but her blood sugar isn't in check and and has to wait or limit it until it's better.
Every time - every day - this is her normal but most of this is quiet and hidden. She's an Algebra Genius when it comes to her blood sugar. Well, except when she's wrong and then she just keeps correcting and waiting until she gets it right. The hidden part of this is all the thought that goes into it.
ANOTHER PART OF THE HIDDEN WORLD...
Another part of her world that stays hidden is the Jeckel & Hyde of emotions that toy with her. On a hormone roller coaster, there is no denying just as the blood sugars go up and down so do her emotions. She can't help it so all she can do is learn to deal with it to the best of her ability. She won't tell you she was low 3 times last night, that her head was pounding and and was she was shaky. She won't tell you how cranky or confused diabetes can make her. You won't know the after effects of lows and highs that occur daily. She won't tell you that she feels terrible or like a train wreck sometimes.
She has just accepted that she must do her best no matter what she feels. You won't know that her blood sugar ran in the 300-400s for hours because of her site going bad or fighting a cold. Those highs make her feel terrible but she still has things to do, classes to attend and it won't stop her. She will NOT use it as an excuse. But she does feel bad sometimes and usually her eyes will show it.
As her parents, we encourage her to push through and live her best life despite how she feels sometimes. But my compassion still runs deep and I like her to choose how she deals. It's her life and I can not bare the full weight of her MONSTER no matter how bad I want to take it from her. ThIs is one battle I can't fight for her although I can do is my best to support her and help her through it.
PHYSICAL AND MENTAL BATTLES
Her physical battles choke me up a little bit... All the the constant needles, attachments and scars make me take a deep breath. She's only 11 and her tummy, arms and fingers have war marks. Her stomach is scarred and her fingers have visible holes. She never gets a break. She NEVER gets a break.
She will never tell you this bothers her. This is part of her secret world and her new normal. She has no complaints. This Type 1 Diabetes monster is beating up my girl on the inside with every high. The damage is hidden. It's remains secret for now and I can't allow it to overcome me.
She won't tell you that she's worried and deep down as long as she is doing her best I don't want her dwelling on this. Her legs get sores that don't want to heal and her feet and joints bother her sometimes. Simple things like toenails can cause her problems because infection leads to higher blood sugars. She gets aches and pains and all I can do for her is tell her I'm sorry. This is her hidden world and sometimes there are lots of physical pains. And when she gets sick, well, that's a whole different set of equations that we have to deal with to keep her safe & healthy. Things can be serious so we have to be extra cautious.
She won't tell you that even though she had the courage to run cross country this year that a few of those days her blood sugar ran so high that she came home and threw up. She has her own secrets and reasons why she doesn't share. She wants people to see her for what she is and her strength and she doesn't want diabetes to be an excuse. But sadly, diabetes is sometimes a reason even if she doesn't say anything. And I agree, we have to stay focused on the positive even when the negative is there. We try not to give our energy to the things we can't change but rather focus on what we can do.
THE MENTAL BATTLES ARE HERS.
The mental battles are hers and I can not even reveal all those secrets. But how I know she hurts when people mix her diabetes up with lifestyle and act as if she can do something to make it go away. When people think she has a diet or weight or self control problem, it's then I can only imagine that the burden can feel heavy to her. I see it in her eyes. But she won't tell you. She has learned to accept many people won't understand and to do the best she can to educate them and then overlook them. Many people think she can control this type of diabetes when the truth is all she can do is manage it. She knows who cares and what is important. She had to mature and become independent very young.
My girl has many sides to her and they are all real. Today, I wanted to share the some of her hidden world for all the type 1s who hold their heads up and move forward as if what they do is no big deal. Because these people may fight everyday and you may never know it. They want you to see the best side, the positive side and the happy side because they are more than what they have to do to survive. And they are uplifting and do bare their own burdens often.
You won't see most of the battles. You can only glimpse into their hidden world. You can only imagine. And yet, how is it that T1s have more courage, more endurance & the ability to inspire even more often than could ever be expected? They don't want to burden you with their problems but rather they just want a little understanding sometimes. T1s are warriors in a battle against their own bodies against an Invisible monster that leaves visible damage. And still, this won't get them down. It makes me want to be a better person.
Does this reveal things you didn't know about type 1s?