learn to live, not exist

It has been a long time since I have updated my blog. Life is life and I find myself lost in change; from a new home (yay!), to a new way of life (without Elvis watching his girl, fully retired), to half my children homeschooling and the other half in public school. Life has swallowed us up and taken us by storm, only for us to land on our feet.

This week was Kinzie’s diaversary. (The day she was diagnosed, back in 2010). We didn’t celebrate really, we acknowledged it, had an ice cream cone and stated a few facts about this life compared to our old life (before T1D). You know what, it was obvious…we have become stronger, resilient, closer, and are thriving. We are okay! We aren’t existing; we are living…and make that choice every single day. Our theory is if we let the scary parts of this disease drive us, and make decisions based only on the scary aspects we would only succeed in ‘existing’ in this life. Focus on ability not disability, focus on can, not cannots. In life every person has something that changes their path they are on, something that throws them for a loop…and how you respond and choose to confront those things will determine the path ahead of you. Choose wisely and do not limit the possibilities ahead, embrace the challenges.

One thing I always tell my kids when they have sour, nasty attitudes is “You can choose to be miserable, or choose to be happy. Attitudes are ultimately a choice; attitudes are everything, no matter what you face. So tell me what is so bad you would choose misery? Even on bad days we can choose our attitudes and change the way we tackle the day. “ My ‘speech’ is often met (when they are grumpy) with a frown, roll of the eyes and at times under their breath they finish my sentences. But the fact of the matter is…We CAN choose happiness. We can choose to tackle any issue with a better attitude, and when we do this, our issues don’t seem near as impossible! Live as if life is the best it can be and that nothing can stand in your way. As a parent of a child with Type 1 (or whatever you face), it is your responsibility not to let Type 1 ever be an excuse, or the reason they can’t or don’t…do not let it limit your child, do not let them think that they are ever limited, or that some things they just cannot do because they have a ‘disability’. Change that into what they can do (anything) because of their ability and help them form a plan to do ANYTHING safely! Teach them to push through lows and treat accordingly, and push through the highs and listen to their body. Teach them how to manage their disease so they can be healthy and in control. Teach them how to monitor themselves during activity, so that even when it is a rough day, they aren’t sitting out feeling sorry for themselves. Teach them how to be team players, dependable. Teach them commitment and set that standard high. Don’t treat them different than their siblings, hold them accountable for their actions (even during a fit from a severe low or insane high…they are still human, they are still accountable…and it is vital they learn how to manage the ups and downs and not use it as an excuse.) Help them navigate in this new territory, but don’t ever give them special privileges or excuses…treat them like you would treat them before type 1.

In doing this I can tell you we have found happiness, success, light even in the darkest of times. We choose to love the moments instead of hate them. For example, at high school dance camp, I witnessed her dancing (and going low several times) from 7 in the morning until 10 at night, pushing her body physically harder than she ever has. Listening to her body more than she ever has before. You know what? She never sat down, she never used it as an excuse…she learned to use her dexcom to look at patterns to prevent and react beforehand. She would continue her dance session with a juice hanging from her mouth as she danced preventing or treating a low. You would catch her tossing down food/protein while doing a pirouette or learning a new 8-count to a dance…without stopping. Without feeling sorry for herself. Without asking “why me?” Without getting frustrated or shutting down. She did it all, just as her peers did (despite the fact that she didn’t sleep several nights due to lows from the intense days). She continued just as her peers did. Why? Because it was a choice. Instead of being frustrated when feeling ‘off’ or tired she has learned that everyone has something they are fighting, and everyone is accountable for their actions and how they face them. She has witnessed the truth of ‘attitude is everything’ and does anything despite diabetes. She has learned that ‘no’ isn’t in our vocabulary and she has chosen to live and not exist. This can be applied to several aspects of anyone’s life. It isn’t necessarily the easiest thing to do, and we often need to refocus and remind ourselves that true happiness is often in our control. We do have days that are rougher than others, and some challenges that slow us down. It will always be a work in progress…but it is so important to look at your diagnosis as if it were just a challenge…not a death sentence. Choose to live. Do the best you can do daily in caring for your child (or self), but don’t forget this scary as hell disease is a liveable disease…even on the darkest days. We have been through hell and back since diagnosis…lived through our worst nightmares and bounced back. We take every safety precaution, we manage her disease with velvet gloves and take it seriously. We continue to learn, we always change for her needs. We listen to her body, we educate, advocate, we pray, we still cry, but most of all we live, we live with happy hearts and celebrate the good times, and celebrate the bad times (because we made it through them).

If you act like this disease gives you limits, your child will always live with self set limits. If you live like this disease is a curse, your life will feel cursed. If you let your child pull the ‘D’ card because they are (low or high), that trend will continue and a sense of accountability will never be fully accepted or owned. Just a few thoughts living and surviving after diagnosis and watching so many people get hung up on the process of grieving (because we do grieve after diagnosis). So, if you are new to this, it does get better. It doesn’t go away, but you can always work through this daunting task with a happy heart and more determination than you could ever imagine. There is a light at the end of the tunnel, and life is possible after diagnosis, you learn to adapt for everything. You learn about being flexible and always having a back up plan. You learn to push through even when you really want to have a complete meltdown. You live. You learn. You grow. You change. You progress. And progress is progress no matter how small. So take it moment by moment or day by day, whatever it is you need…and make daily decisions and ultimately set you up for success by choosing to live and not be chained to misery. Sometimes you need someone (for me, it was myself) allowing you to grieve and then just let it go.

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