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.


goodbye old…hello new!

I think I would simply rate 2013 as the year from hell…and wouldn’t be far off in saying so!  I am looking forward to saying hello to 2014 with a happy heart, more wise mind and ability to rebound far quicker than I have in the past.

Many changes have taken place. Like Kinzie becoming a little more stable! yay!  Homeschooling all 4 of my children, yikes! And finally, us parting ways with the diabetic alert dog company we once faithfully defended.  It was full of heartbreak, honest truths staring us in the face and a part of something we couldn’t support knowing what we knew and witnessing what we had witnessed.  It was a downward spiral that ended with us landing in a better place conscience clear.   Leaving the organization we lost a year of training already paid, we weren’t allowed to transfer the funds to another family to help them meet their financial obligations unless we would sign (essentially what I would call) a gag order.  If What I have to say and what I know isn’t the truth, then why do I need to sign a gag order for funds to stay within the same company going towards another family?  odd.  One day, when I don’t fear trying to be pinned for a law suit of slandering I have a whole lot more to share on this…and the information I have and know.  Until them…my last thought there is… Wonder where our unused funds went?

All this leads me to a post I have avoided for quite some time.  Taking advantage of people, especially those facing what us living with T1D (or our children living with it) is pretty low.  I urge all my T1D readers or parents to do research before they go and get a D.A.D. no matter what company they are thinking about going with. D.A.D companies right now are a hot thing…with track records that vary.  Do tough research and ask tough questions (making sure you are getting honest answers).  Look at the good, bad and ugly because in the end you do not want your dream crushed. You should be able to ask anything without getting ignored, a harsh comment or receiving answers that blame another party.  Is the vision they are selling really the vision they are sending out?  Quality…is it even across the board? Has quality increased/improved?  How are their trainers qualified? What is their trainer over turn rate?  How are the dogs temperament trained? Are the facilities the dogs are bred and kept and trained prior to placement adequate? Does the company listen to its trainers when they plead with them that facilities are not adequate and what they are delivering they aren’t comfortable with? Do they value all team members of the organization or do they freely toss them under the bus to save face? If someone is eager and willing to talk bad about their own employees it probably is how they will treat their families too.  Do costs add up? How do they handle issues, concerns and disagreements? are they forceful, blaming or bullying? How do they scent train (or are you actually doing it once the dog is in your home?)? There are really no secrets in the D.A.D world and it isn’t one awesome protocol that creates amazing creatures….trust me.   CONTRACTS! Do not pay a single penny before you see any and all contractual agreements and make sure those contracts are without huge concern.  Like for us, contract was never mentioned, but I defended it because I so badly wanted the entire dream they sold.  I didn’t get the contract until after our dog was paid in full (we actually paid more than the dog was worth for extra costs)…and the contract came when our puppy was delivered.  If we didn’t sign our dog would be taken away and our money, all 20k + would be gone.  In that situation…I felt I had no other choice.  Thank goodness our trainer actually helped us get right to business to create an amazing dog…however this trainer didn’t even stay a year with the organization and left without announcing to families  (we went above and beyond in training and used outside resources, paying more money and used every waking moment to train.  Creating an amazing creature. At what cost can you or will you be able to do this?).

NEWS FLASH!!! Do not pay 20k for a dog, let alone a puppy.  It isn’t worth it and it is unnecessary for the cost to be so high.  I have learned the hard way, and would encourage anyone starting out looking into D.A.Ds to become wise on the subject.  READ about D.A.Ds, training, expectations, service dog laws, research companies (like every company possible) and don’t get all cozy with fancy words and big promises.  You do not have to invest that kind of money to get a working reliable dog.  Learn about scent training, all your options and what works for you.  If you like paying 20K for a dog without mention of a contract or only receiving a contract after your animal is paid for or weeks before it is paid for, feel free to gamble on the money.  Be aware of timid, aggressive or fearful dogs being delivered that WILL NEVER BECOME A FULLY FUNCTIONING SERVICE DOG, you were screwed, that isn’t the making of a sound service dog and if you aren’t trained yourself on how to handle such behaviors it is very unlikely that you will ever progress past this stage…hopefully you do. Night alerts are rarely promised with any company because they cannot be guaranteed with every single dog…it really is individual based.  Ask tough questions, speak with FINISHED dogs/handlers who are performing all functions, activities and tasks flawlessly with finished, clear trained alerts.  (How many finished dogs are there compared to stated rate of dogs being created and shipped out).  Look at certifications companies seek and how they are evaluated (and who is expected to pay for them) and what certification they deem important for ALL of their dogs to receive.  KNOW service dog laws and service dog in training laws both ADA and you state.  Research their training techniques and make sure you are comfortable with them.  Read about puppies, puppy behaviors (because many times, several companies are claiming an alert is actual expected puppy behavior and what you are doing is conditioning your dog to alert when you dog actually didn’t alert it was exhibiting puppy behavior and through repetition and reward you are the one connecting the scent to a specific action. I know this, because I have done it with 4, yes 4 dogs and I am not even a trainer).  And if done incorrectly you will get a dog with several ‘untrained’ alerts.  A dog doesn’t need to alert by acting out in several ways.  Clear concise alerts are key, especially when you (the main handler) aren’t around to recognize them. It was key for Elvis to give clear alerts so Kinzie could be on her own away from me…and if incoherent or too busy to notice, others would notice his two trained alerts…no guess work behind or someone thinking he is acting like a bad dog.

There are companies working hard.  There are companies who have waiting lists and certain criteria you need to meet (sometimes, this criteria is pretty important…looking back).  Some companies offer more than others. Some cost more than others.  But your dog doesn’t need to cost more or the same as a vehicle.  There is self-training, getting a scent imprinted pup, working with local trainers, etc.  So many options out there. When thinking about pursuing such an obligation, it is key to think with your mind and not your emotions. There isn’t one company that surpasses every other company just because they cost more.  I have come across several families happy who all went through different companies.  I urge all families to honestly approach this subject with an open mind, concrete research, knowledge for starting out and actual attainable expectations.  These are tools to use in the fight against T1D. I hope writing this, I have helped someone make a sound decision, no matter what the decision is and a great amount to think about and take into consideration. No matter what company you choose, whether we differ in opinion or not…in the end as a parent to a T1D child my only hope is those already in the process of training, obtaining or getting a D.A.D all experience success so they too, have  another tool to face T1D beast.

I am an open book and honest with my opinions on D.A.Ds in general.  I do mind being contacted when I am being contacted just to have dirt.  That isn’t why I am posting so if you have questions just for the sake of being nosey or dishing…take a hike.  This post is general information I wish I once knew to ask, face and consider when I face the overwhelming road to a D.A.D.

As for us, Elvis is still Elvis.  Kicking butt every day.  We continue to work with him every waking moment and he continues to work hard for us.  We have focused more on positively building his and Kinzie’s relationship (well his and every family members relationship).  We have great local resources who focus on positive training, we have worked with her on and off for socialization and working with distraction since Elvis was about 6 months…Learn to seek out local (and reputable) resources, we are very lucky.  We are doing it on our own.  Finishing him on our own and having fun doing so.  It isn’t as scary as I once thought it to be.

** I am not a trainer, just speaking as a mother to a T1D with experience with D.A.Ds, lots of research, real-time intense training working with more than one D.A.D (not profiting from a single one).  Information stated may/may not be our experience with our organization we were once with….gotta add this disclaimer.  But either way, this information is pretty basic and vital to take into consideration.**

To my readers, have a safe, healthy and happy New Year! (and in ‘Hunger Games’ tibute…when picking a D.A.D company or route to get a D.A.D…’May the odds be ever in your favor!’).  The road battling T1D is taxing, long and sometimes hard… But (but being the ‘no no’ word in counseling) it does get better and you get better and life continues as you progress, change and live.  Much love to you all.

top 10 things diabetes has taught me as a D momma

In honor of National Diabetes Awareness month, I decided to write my blog on the top 10 things I have learned as a parent to a child who has type 1 diabetes.  It is easy to paint a picture of despair, it is easy to hold on to the negative moments especially in a time of uproar or complete chaos during a challenging trial/time.

Here is the kicker…it isn’t ALL bad.  It isn’t all sucky. It becomes part of our routine and with that it becomes part of our daily actions that happen without even thinking about what it is that we really are doing. It becomes second nature, but we are constantly on watch. With our greatest challenges, comes our greatest blessings IF we slow down enough and open our hearts enough to catch it.

Top 10 things I have learned from Diabetes as a mother…

1. Timing matters

It really does! Timing really is essential in the management of diabetes in more ways than one.  Timing of insulin injections, timing of basal dosages delivered, timing of your last check, timing of the carbs you consume AFTER you dose for them in order to prevent a spike.  Timing in activity, learning, advancing. Timing in alerts from our dog before a crash.  Timing in good deeds, and timing in our actions towards diabetes around Kinzie.  Timing is important, and you have to always be aware of timing…every single moment of every single day.  IT IS ESSENTIAL in being successful.

2. Count your blessings

Count them every single day.  Count your blessing ESPECIALLY on the days you do not even have the energy to acknowledge them! It is completely necessary to keep in your mind the blessings you are surrounded by because this disease is TIRING, heart breaking, devastating, FOREVER, challenging, never stopping, always changing FRUSTRATING, exhausting! It can wear on you and it can get the better half of you when you get lost in the moment.  So count your blessings no matter how small you may think those blessings are.  They will have an ever-lasting effect on you…and in the moments you need it, they will always be there to remind you that not all is lost.

3. It isn’t a curse

It isn’t! This isn’t because you suck or you are being punished.  THIS IS NOT A PUNISHMENT! This is merely a test, a trial, a temporary thing for this life.  I often think about the quote that goes roughly like ‘God gave his biggest challenges to his strongest warriors.’ And boy ain’t that the truth?! I don’t know a single T1D or T1D parent that wasn’t a passionate fighter.  If ever you look into a small community of people with something similar I think you could easily pick out certain traits (for the most part) in the community across the board for T1D.  We are strong, resilient and inventive.  We problem solve, we go with the flow, we stay calm, we pray daily, we learn.  It isn’t a curse…you can see we really do gain a great amount by living a life connected in one way or another to t1D. If you face this as a trial, not a curse…there is always room for victory! This isn’t a curse, you did nothing wrong for your child to be diagnosed with T1D…it isn’t a punishment for you or for those with T1D.  I cannot stress enough how vital it is to have the perspective that this is not a curse, it is a trial waiting to be tackled.  Waiting to be accomplished.  United by one common trait, T1D people are pretty amazing.

4. It could be worse

It could! It could be better.  BUT it really could be worse! And I don’t want to tempt fate saying we got dealt the WORSE hand ever.  We still live life, nothing stops us, and we still can see growth, change and blessings come our way because of this disease.  It isn’t easy, but it could be worse.  It never ends, but I am sure…it could be worse.  And just when I think it is WORSE…I remind myself, no, it really could be worse.  Be thankful for the trials you face and the blessings that come with it, because at the end of every single day…it really could be worse.  Some how along the way, it is never too much and we find a way to tackle whatever is thrown on our plate…reaching near breaking point and shattered, but not bad enough to finish us off.  It could be worse.

5. Strength in numbers

You can look at this in more ways than one.  Numbers as in information…BG readings, A1cs, ketones…the more information I have the more strength I have to combat it. The more detail I have in front of me the more I can factor in to the equation in order to have the power necessary to face this beast and win.

Strength in numbers is also important in the company you keep.  When you cannot carry on…somewhere someone on your side will… and they will carry you until your feet are sturdy upon the ground.  Strength in numbers helps work through those unfamiliar moments as you tread unfamiliar territory; knowing you are not ALONE.  Strength in numbers as you watch your child grow, knowing they too need freedom so you draw on strength in numbers to create an environment set up for her success and safety.

6. Celebrate the small stuff

Small stuff suddenly seem so much bigger, more important.  Small stuff seems pretty important in every single way.  Celebrate the perfect night, time together, another year living healthy with T1D.  Celebrate educating others, spreading awareness; even if it was reaching ONE person.  Celebrate the independent siblings gain as they too grow up too quickly instead of mourning what we perceive as ‘normal’.  Celebrate the life you were given because you were deemed ‘fit’ enough to face it.  Celebrate the moments diabetes has made you slow down enough to celebrate. Celebrate the moments that take your breath away, make you laugh, make you cry because you are aware enough in the moment to notice them.  Don’t forget to celebrate when you are in a constant state of vigilance and fight.  It is okay to be happy and celebrate…that is what life is all about.

7. Everything really does happen for a reason

No need to say more.  I truly believe that everything in my life has happened for a reason.  The good, bad, ugly, sad…everything! I believe that certain steps in my life played out for this one purpose…my talents as a great student, thirst for knowledge, problem solving skills and career as a nurse all came before diabetes because those talents harvested at that time in  my life were to be able to be in place for THIS moment in my life.  My talents were going to be greatly needed at home.  The order in which those things happened was for a reason, to help set us up for success and have a leg to stand on when everything seems too challenging.

8. Just because it is hard, doesn’t mean it is impossible

Nothing is impossible.  NOTHING.  Nothing about T1D is easy. NOTHING.  I was witness to my daughter having the worst night of her (my) life, nearly losing her, push on in order to prove to the world (and herself) that diabetes will never dictate what she can and will do in life.  Nothing is impossible…we just go about EVERYTHING differently.  That simple day in March taught me probably more than I ever would have known about impossible things in my entire lifetime.  Perhaps that is why we were faced with such a tragedy.  Perhaps not.  Not matter what you face, how rough it gets, how many times you get knocked down…nothing is impossible.  If you are determined, if you are willing, if you push past your fears…nothing will ever be impossible in this world.  I simply look at my children and know this to be true.

9. Always continue learning and evolving

Do not become stagnant in what you know about this disease.  Evolve, learn, grow and dedicate a good portion of your time to be able to teach your child this.  It is important to not get set in your ways. I can honestly say the more set in your ways and the less you actually actively seek more knowledge the more ignorant you will remain.  Every parent of a t1D child has a responsibility to set their child up for success in this world…success in life choices, health, career, human being qualities.  It is hands down, the number one thing I cannot stress enough.  Never be stagnant in your willingness to learn more or to seek information.  Information will not just land on your lap.  You child will watch how you tackle this disease; will watch how much you seek knowledge and active practice what you preach.  Set them up for success.  Knowledge is power.

10. Time is precious

So make it count.  Do not take for granted any single second, because you never know when fate will be tempted or when your job here on this earth is complete.  You are not the keeper of time or the one who decides when your time is up.  When you are in a constant state of motion, which is where diabetes can tend to keep you, sometimes you forget that time is passing you by.  Sometimes you forget there is a bigger picture and better purpose.  Time is so precious.  Your kids will only be this age once; you can never have a redo.  You never get to pause.  Make time count.  Teach your child to be able to make time count.  Watching your child struggle with the entire grief process, this perhaps might be the hardest thing to do…but when they see that clear picture, it is worth it.  Time is all we have until it is gone.  Don’t regret yesterday, forgetting today already trying to change tomorrow.

So what are your top 10 that you have learned from diabetes? What are your top 10 you have learned in your life if you do not face t1D? Remember it is never too late to start making that list and to start appreciating the blessings that encircle such a huge trial in our daily lives.  Diabetes shouldn’t ever be allowed to define your life.  Shape it to whatever it is you want it to be, you won’t be successful every day, you will have set backs…but keeping that positive motion forward you will find yourself looking forward to the future with purpose and strength.

Junior High, here we come!

Junior High.

If you are a mother, your stomach probably turns with reading those two small words.  Junior High is considered one of the hardest years in a child’s life…and I can imagine why.  I get to see the physical, emotional and spiritual repercussions from hormonal fluctuations more so than any parent of a typically ‘healthy’, free of chronic illness child.  With Type 1 Diabetes I have been given a pretty darn clear picture of the toll it takes on your body minute to minute and often times catch myself putting it all together in an ‘Ah-Ha!’ moment from simply dissecting Blood glucose trends among other obvious observations.  I get to see my child growing up from a whole new perspective and gain much more appreciation for what it is their bodies, minds and beliefs (to some degree) are going through. It opens a whole new world.

This intro brings me to our next chapter in life…Junior High.  With only mere weeks away from sending my child to what some may consider the ‘depths of hell’ I am on edge.  I am in preparation mode.  On top of the typical supplies needed for school I am gathering the supplies needed to keep my child alive while in school.  In addition to figuring out her schedule, which friends are in her class, when lunch will be, new policies or rules, making sure her required vaccinations are up to date I am mapping her daily routine for easy access to quick carbs, preparing each classroom for lows and emergencies, packing back up supplies to be left with the nurse, preparing my education materials for all faculty and staff for our meeting on meeting her immediate medical needs in emergencies, setting plans for her service dog to attend to help watch over her, prepping myself for the separation and the fear that goes along with it, preparing for IEP plan to include her medical, testing and service dog needs. I am going minute to minute revising, planning, prepping, revising more, adding, changing, managing, etc everything to make transition into Junior High as smooth as possible and my daughter healthy and prepared.  It isn’t easy.  It isn’t fun…It is nerve-racking, heart breaking, faith invoking.

I normally would be having fun picking out supplies, clothes shopping, care free, prepping my child for changes and expectations during Junior High and being care free.  Add to the typical challenge each child experiences, the need to manage a chronic serious disease such as type 1 diabetes and you can imagine the exciting things we should be feeling/doing really does take the back seat.  Doctor orders are for her to manage everything on her own because she is capable of doing so and knows the ins and outs of her pump, orders, T1D, etc. and at any point if needed we can change this if she feels overwhelmed (which I really only hover and educate and help make big decisions at this point).  From day 1 we have been educating her on this disease, its effects, spotting trends, correction factors, insulin to carb ratios and reasoning behind them, how to count carbs, etc…from day 1 we have set a standard and have kept that standard…it doesn’t mean she hasn’t tested this or protested this standard…she is a teenager…and teenagers know everything, right?

As scared and hesitant as I am I cannot help but celebrate this separation.  This is something pretty big for us, much responsibility for her, but also something that means a lot to her.  She is witnessing her conquering diabetes and doing WHAT she WANTS…not what diabetes defines. There is much to celebrate when we can move past road blocks thrown our way and learn to live and work around them.  There is much to celebrate when you see your child excelling in her care, her independence growing (but not too quickly) and her walking with confidence.  Much to celebrate when I know she has friends surrounding her that love her, care about her and will be watching out for her if ever she needs helps.  She has a group of friends who probably know more about emergent care then some parents…friends whose parents support this knowledge and help harvest and embrace it.  There is much to be celebrated when you can just live, even when type 1 tries to hold you back…much to celebrate when nothing stands in her way.

This year will be a milestone in her life.  Independent at school, Junior High, her service dog attending with her and she is main handler in control.  This is a huge shift in her life and in her schedule.  A huge shift that her endo thinks she will best care for herself than a school nurse ever could, a huge shift that she will have her life saver with her so this mother doesn’t worry about her walking around in the 30s on the verge of seizing, passing out, etc unknowingly (which is typical for her) because of hypoglycemia unawareness.  This. Is. Huge.

Now if only I can survive the teen years.

Summer of change

Haven’t updated my blog for a few months; not that I was avoiding it…

We have been busy as usual. On a good note we are fighting the D monster and winning.  Attitude is everything, and we are slowly gaining ground.  We don’t have answers to our ‘event’ back in March.  Nothing about it is making sense.  For now we are relating it to a massive hormonal shift (thanks puberty), and will continue on with that mindset throughout puberty (hello the next 5-6 years); and hopefully it will resolve into adulthood (by resolve, T1D will just ‘normally’ suck not extra suck).  So until then we go about our business battling when we need to but not forgetting to just live (and smile while we do).

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Kids are all growing up quickly…I think our house might be one of the noisiest places on earth.  And I am okay with that.  We are always on the go from one activity to another…from one appointment to the other. I guess if we didn’t have a busy schedule we would be bored.


We just finished June, which may have been our busiest month ever.  With a weeklong session at Kinzie’s dance studio, 2 dance camp and her Young Women’s camp we were gone for the majority of the month.  What makes this tricky is right now I need to follow her and just sit in the background and be on duty during activity (especially at night) so I have to make sacrifices in our home, miss my 3 other kids and get back up for my ‘motherly’ duties.  It isn’t the easiest thing to do…leaving my family for nearly a month with a few day breaks in between.  I missed my husband, sons and daughter so much.  And would wrestle with the ‘guilty’ monster here and there the entire time I was away or preparing to go away.  But I go because duty calls and my job with Kinzie is pretty important right now, as our answers are not very clear and everything has changed.

While we were gone, we faced several of our fears…like staying overnight in a hotel for the first time since seizure (me, elvis, Kinzie and her friend that was there during the seizure).  I think it’s safe to say we were all on high alert the first night but made it through.  Several other nights in a hotel followed and all were uneventful (Thank goodness!).  Small victory!  We also survived camping…and Kinzie camped in the tent with her friends and I camped several yards away from her…I wasn’t sure I was going to survive with my high anxiety levels at night, but with Elvis by her side we made it through and he never failed an BG alert throughout any night.

If I had to dub this the summer of something I think I would dub it the summer of change and confronting/facing fears. I think it was something that needed to happen, for all of us.  We had to face reality outside of our comfort zones and Kinzie needed to see (once again) that she can do anything she wants to…even if Type 1 Diabetes doesn’t play fair.  Blessing in disguise?

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Our first trip away was for a Junior Dance camp.  Kinzie tanked all day every day, as they were dancing and working hard from 8 in the morning to midnight (practicing routines even after the camp day ended).  She plummeted the first night, but never gave up and continued to review the previous days routines dancing while drinking her juice, basal decreases on top of using her exercise basal rate program, eating trail mix while choreographing her portion of the All American Dancer routine.  Her tanking so much had myself, Elvis and her coach (who happens to be my sister) on edge.  We don’t like plummets late into the night or during sleeping hours…a little too close to home for now. This camp was a success and Kinzie pushed through the entire thing.  She received blue ribbons in all routines, several gold ribbons for winning drill downs, became drill down champion (yay), tried out for All American Dancer and actually made it!  She needed this experience; it was a boot in moral, confidence and lit a fire under her.  She started realizing that even when she hates T1D…she continues to do anything any other child can and will do (with just a little extra TLC and challenges).  Even when T1D tries to say no; she won’t let it hold her back.

camp awards

We had to do a pit stop to the orthopedic physicians’ office.  Kinzie’s knee has been killing her to the point it takes her breath away.  We waited 2 weeks to get in.  She has patellar tendonitis and Osgood schlatter’s disease where she grew too quickly for her ligaments couldn’t keep up with her bone growth (which she has grown crazy amount of inches…so it didn’t surprise us).  Another little bump in the road.

Young Women’s camp was next, and Kinzie needed this more than ever before.  She needed to see that even when she is ‘different’ then her friends at church, they think of her as normal, one of them. (much of them are her school friends and a few her dance friends).  She chose to sleep in the tent with the girls and not with me and wasn’t even worried.  It was like she refused to buy into her fears and had all the confidence in the world between Elvis’ alerts and my checks she would be fine.  Another victory (or two) for us despite what Diabetes thought. She let down her guard a little and was her goofy self. She was a little open to her church friends and they all loved having Elvis there (each of them offering to hold his leash while she prepared her meals, went potty, or even just sat around at camp).  He was just part of the group and they all loved cuddling with him (often arguing over who got to hold him, hug him, or play with him…and often would say Elvis is alerting!). We came home exhausted, dirty (even after taking camp showers), but successful.

We had a day to recover, clean up and pack and head out to the high school dance camp.  It was a whirl wind of craziness.  She was challenged, she faced D, she continued.  She never sat down, never complained, and never said she couldn’t hang (mind you she isn’t in high school…just starting junior high this year, so the level of this camp was higher than she was use to).  She once again rose to the occasion and bulldozed ‘D’.  Dancing and drinking Gatorade/juice to keep BG up or battle a low.  Elvis was on the sidelines sitting with me watching his girl.  He was the star of camp.  His 1st birthday came during camp, and we celebrated it with her dance team with cupcakes, Elvis got his doggy cupcake, presents and party hats.  The camp staff was great and even sang to him on his birthday with the entire camp.  Everyone loved him.  Kinzie pulled off blue ribbons with each routine, won drill down champion again (and couldn’t try out for All American Dancer since she was already awarded it, but a few of her teammates made it too.  She was so excited that they excelled and made All American).  After Kinzie won Drill Down Champion we all cheered! That was our kid, from junior high, with T1D, fighting lows and highs…winning against everyone.  I think the entire team was proud.  A lady I had visited with earlier on during the camp (who was asking me about Elvis, because she had never seen a D.A.D. before and had a T1D son) sought Kinzie out after winning Drill Down Champion with the biggest smile on her face, so proud.  It was a connection she had with us and shared in our excitement because she knows how T1D plays.  She knows the extra commitment you have to make and extra chores/duties you have to do to do anything.  She was very kind.

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Our summer is finally relaxing.  We have regular upcoming appointments.  We are in the process of getting Kinzie on the OmniPod (insulin pump) which will better fit her activity level (which is level crazy), and training with our trainer for Elvis in August.  I would like to think we are dealing with the changes T1D has thrown our way pretty well.  Sure we had a few months (or four) of complete chaos and hate but we are dealing, changing and facing it head on.  We aren’t backing down.  We aren’t stopping.  Although our endo jokingly says if she weren’t as active we would have a few less challenges (she doesn’t mean no activity…it’s just Kinzie’s activity level is in overdrive. She never slows down and just adds more to her plate). Kinzie continues to gain her confidence and rebuild her freedom as we learn to face all the things new in our ‘D’ life.

Elvis elv and kinz

Junior high is a month away, and this mom, oddly enough, is okay.  I have a little anxiety but more for the reason of crazy junior high stories then T1D.  Endo wrote orders for Kinzie to manage it all on her own at school with Elvis’s help.  Somehow knowing her friends are really good kids and has walked a part of this journey alongside Kinzie and know how she looks when she is tanking, acts when she is high and know Elvis’ alerts calms me.  They also know how to do emergent care (physically have been trained with glucagon shot and an orange) and are prepared to save Kinzie’s life if need be with glucagon kit and gel (and will be covered by Good Samaritan Law) if they touch a needle at school and weren’t authorized to do so.  Somehow I am looking forward to this challenge and change.  Kinzie is ready for it.

All in all our summer of growth has been somewhat of a successful push into letting some fears fade and having to face the others head on.  We cannot change what we face daily, but we aren’t allowing it to hold us prisoner. Wither her intermittent hypersensitivity to insulin and exercise, her hypoglycemia unawareness and the regular T1D odds and ends that come with the package we are learning to live and thrive.  We do what she wants to do, no matter what.  ‘Can’t’ will never be in her vocabulary and there will be no single fear that will ever dictate what she is capable of doing.  The sky is the limit.  And with great anxiety with some moments we tackle that bucket list slowly.  Never know what is next but we cannot predict the future and choose to live in the now, enjoying everything it has to offer us.  We are choosing to be happy.




Balance seems to be so over-rated.  Does anyone ever truly find balance that lasts?  Balance is like a fine juggling act with flaming torches and sharp samurai swords when it comes to living a life with type 1 diabetes…impossible? No, but very, very,  very difficult! Yet, unlike juggling, you don’t sign up for this Diabetes ‘act’.  It is thrown at you without choice, reason or rhyme; that alone makes finding balance nearly impossible…if you weren’t prepared for the journey, finding your way is a daunting task.

The past month (give or take) has been the hardest period we have ever had in trying to find ‘balance’ again.  Literally anything we once knew was completely thrown out the window.  Comfort-gone, schedules-don’t exist, sleep-what is that, safety-yes please!  I fear I have been chasing ‘balance’ forgetting what I was even looking for.

I have spent countless hours looking for our new balance. Unlimited amounts of tears, energy and focus. Yet, through it all, every single day I would turn up empty-handed and heavy-hearted.

Then it hit me! Who needs balance? It never lasts, something always throws it off and you can spend way too much time recouping from a small shake in your balancing act.  So I have decided we don’t need balance, we need swag.

I dub Diabetes swag an art form.  It is full of flexibility, ever-changing schedules, flying by the seat of your pants, great ‘guesstimating’, forever learning, always growing, vigilant, diligent, less than required sleep functioning, advocating, smiling, making jokes instead of breaking down, and always being able to scoop yourself up after being knocked down (no matter how long it takes).

I like thinking about getting my swag back rather than finding yet another level of balance in my life…YUCK! I find that looking for my diabetes swag is much easier and attainable…and to be honest, way more achievable and rational when it comes to living life with Type 1 Diabetes.

I like that.

I don’t mind saying I have ‘D’ swag…because, well, as parents of type 1 diabetic children, we do! I think we are a tribe of resilient humans wired to face difficult tasks on a daily basis without hesitation…

For example:

  • Dirty diaper changing while teaching your other child multiplication facts, while handling a low of 45 all at once.  Challenge accepted and completed!
  • Site change with one hand while feeding the baby. HOLLA!
  • Carb counting while on the phone with the endocrinologist making changes to the basal rates while cooking dinner (nothing burning and all edible). BOOM!
  • Shopping with 4 kids (1 T1D, 2 of them under 3 years of age) and a diabetic alert dog for groceries, getting everything on your list. correcting a high while catching the 1-year-old twisting out of the straps jumping from the cart while tying a shoe of the 3-year-old trying to get the 9 year olds attention long enough to help lend a hand as the T1D complains of increasing tummy pains from high and the dog ‘pawing’ your leg (not missing that alert for high) even when your hands and mind are running 100 mph.  BAM!

So I ask myself…Did I really ever lose my swag?  Did it ever leave my side post seizure in midst of our new chaos mess we like to call our life?


I still have my ‘D’ swag, and in fact, I do believe my swag meter has been jumping off the charts.  I never gave (give) up, kept (keep) going and did (do) whatever it takes to keep our home running, kids learning, sports attended, appointments checked off and T1D at bay.  I have done it even when I didn’t want to…even when it seemed (and it does still seem at many moments) like too much.

D Swag. It never leaves.  So why do I need to spend extra energy looking for something that never completely truly exists?  Because society says balance is real? Because other people look balanced?

Screw balance…I got D swag.  And any ‘balanced’ person on the face of this earth would not know what to do if they lived any ‘T1D’ life for a day (and no, I do not wish this on anyone…ever).  But balance can’t exist when really any tiny grain of sand can throw it off.  Can a grain of sand throw off ‘D’ swag? Heck no! We just roll with it!

Are things normal for us yet? No.  Have more answers come our way? No.  Any more sleep and less scary moments yet? No. But darn it, I face it all with my ‘D’ swag I was inaugurated with at diagnosis.

Why is ‘D’ swag so important? Well, because when you face tough moments daily that can literally change your child’s health and safety sometimes ‘D’ swag is all you have.  Diabetes is a mystery and often times just filled with great educated guesses…and sometimes just surviving day by day is possible only because of the talent T1D parents develop (‘D’ swag).

Maybe this is the lifeline I need. Maybe this is the epiphany I have been waiting for.  For today, this is all I need to remember to keep going.

Screw balance.

Who am I and how did I get here?

Ever wake up one day and feel completely numb, powerless and very much in a life/death struggle?

I believe I am in the midst of a battle just like that now.  I feel weak, tired, bitter, angry and powerless.  I don’t like it. I like control, I like strength, I like certainty, I like progression.  All those things I ‘like’ are absent from my life at this exact moment…it’s true.  I cannot seem to find any shard of the old ‘me’ lingering around.  She seems like such a stranger.

I read some of my old blog posts, and catch myself wondering ‘who the heck is that woman?’ I don’t even remember being so full of conviction and wonder how the heck I was so strong?

I long for that.

I exist only to exist…I am numb, tired and aching for that comfort I once felt.  Life is uncertain, life is unpredictable…and a year ago I sure didn’t expect to be where I am today.  Odd…because back then I was sure I would be some where even greater.

How crazy.

Don’t get me wrong.  I am not in this deep depression, feeling only darkness.  I am just ‘lost’…I have just lost my essence of strength for the time being, and that is completely normal, I know this.  But I do feel powerless right now.

I look around and think is this really me?  Is this how I am going to be? Worn down, tired, scared, bitter (but hopeful)?  How did I get here?

I know I navigated through many circumstances to get to this exact spot.  I also know I am meant to be in this exact spot for some reason, but it doesn’t make it any less painless.  Knowing this doesn’t make right now okay.  I can never be ‘okay’ with my right now and what we are facing.


deep breath.

I have a lot to be thankful for.  My husband, my kids, Elvis the most amazing D.A.D, life in general, many small blessings, good friends…there is a lot out there.  And trust me, I am beyond thankful for it…but being thankful for those small things doesn’t help the bitterness fade (just yet).

I don’t like what we are facing.  I don’t like not having answers.  I don’t like seeing my daughter struggle and her ability to even feel safe start to vanish only moments after feeling freedom from the world.  It isn’t fair.  I am complaining…It isn’t fair! I have wondered ‘why her’ so much lately it is unreal.  Really, WHY HER?  Why do we have to be facing a rare mystery? Why do we have to worry about massive crashes into hypoglycemic crisis without warning, why us?!?!  WHY can’t I take it from her?

I have talked about nights holding me prisoner in the past…multiply that by one million and you might get the idea of my fears right now.  What would I ever do without Elvis right now watching over her literally day and night??? What if he wasn’t in our home?  what if???

Why do my other children have to see this epic fight?  Why does Jared have to feel scared for his sister pretending to put on a brave front?  Why does he deserve this added pressure? Why should he feel obligated to be his sister’s keeper, that is massive responsibility for such a young boy.  Breaks my heart.

My heart is beyond shattered.  I am desperately trying to pick those pieces up but I feel like every time I gather them they fly out of my hands.  I am endlessly trying to catch each shard before it shatters into a million other pieces.  I don’t like this feeling.  I don’t like this spot.  I don’t like our choices right now.  I don’t like watching people go through this.   I don’t like not having control.  I don’t like not being able to somewhat ‘plan’.  I don’t like this one bit…I HATE it.  I hate pretending like it is all okay, because right now, it doesn’t feel okay.  I am not okay with this hand we have been given.  It feels impossible…the ultimate test of faith is watching such a struggle and even just remotely entertaining the slightest sliver of faith.

Strength, where have you gone?