Tag Archive | type 1 diabetes

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.

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.

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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.

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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.

ELVIS ACE

Balance?

Balance

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?

NO.

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.

*sigh*

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?

Single worst moment…

I am going to just write…I can’t edit right now, I just need to write and get it out there for now.  so please excuse the mess…Editing will come at a later date.  For now, just to get through, I must just write and let it be…my darkest fear, and worst reality just came full circle.  i am sharing a very sensitive part of my life, in hopes to at least reach one person who needs to read this.  This is me…raw.

The single worst moment of my life.  It’s easy.  I can pin-point that moment down to the day, hour, even.  I have thought and thought and thought about this moment this past week, images ingrained on my brain now and they continue to flash across my eyes at any given moment of the day taking me by surprise…holding me prisoner at the same time.  I have sat down with several attempts to capture this moment with words and have failed every single time.  Too soon?  Too fresh?  Too real? Too scary?  Possibly it’s yes to all of the above.

Again, I sit, trying to convince myself, or coax my fingers into typing out this memory without pause, just get it over with…quick, painless, like a band-aid.  I feel sick to my stomach just staring at the few words I have managed to etch out.  I feel sick, weak, angry, tired and completely lost. I also feel the urge to share our story with others who live in the same world we do…who get our worries and struggles and know just how hard times like this can be.  I keep telling myself, even if this benefits one other person, it will be well worth the energy and effort I put in trying to push past it all.

Just breathe…one letter at a time…just breathe.  March 15th, a day of no significance, importance of meaning to us in any way. We (Kinzie, myself, and Elvis (her diabetic alert dog)) travel 3 hours away for once of her dance competitions.  We meet one of her teammates and best friends to pick up and let her spend the night in the hotel with us, so a few of the dancers can meet up in the hotel and have fun the night before competition.  It was nothing out of the ordinary, nothing too different from any other previous competition.  4 of the girls met up and goofed off and had a fun night.  3 of them stayed up late talking and just having fun (in our room).

Around 1 in the morning (might be off on time slightly) we decided to call it a night.  We did our normal routine, BG check, wash up, brush teeth, etc.  Elvis alerted low and we check…180 (180s, double check, same results).  For us that would normally be what we consider a high, and on a normal night, I would have done a small correction dose and gone to bed.  With Elvis, I listen when he tells me high or low, he knows, and he was more than adamant she was low.  So instead of dosing with insulin, I decided to listen to her dog and do a temporary basal decrease of (I believe it was 40%) for 3 hours, planning on checking in a few hours.  I lay down in one bed and the girls and Elvis lay in another. Elvis had a hard time calming down, but I thought it was because a friend was spending the night and shaking up his routine, sleeping with them.

Just before 2 a.m., just as I start to completely fall dead asleep I startle to an odd noise, but in my sleepy state I think it’s kids in the hall or something along those lines and drift back to bed to only be awakened by Kinzie’s friend ‘Kinzie’s not right!’  She was woken up by the same sound as me…it was Elvis, only she responded to that sound enough to realize her friend was in a full blown seizure next to her ( in the dark, she wasn’t even sure what was going on).

I jump up out of bed and turn on the light to only see my precious daughter in a full fledge hypoglycemic seizure, near hypoglycemic shock.  I grab Kinzie and my mind swirls, I just yell her name and feel my knees buckle from under me. I yell at her friend to call 911 and got my sister and her husband from across the room telling them I need their help right now to save Kinzie. I yank her insulin pump off her body to keep any small amount of insulin from entering her body.  I hold Kinzie in my arms rubbing glucose gel on her gums and inside her cheeks (the only thing closest to me, quickest to locate).  As I rub her seizure ends and she goes lifeless.  No blinking, no breathing, no nothing.  During this time my sister, and her husband are locating her glucagon shot and prepping it.  All I could think of was not to stop, keep doing gel and glucagon knowing this was a natural protection mechanism with a hypoglycemic seizure…but I was scared as hell.  I was frantic, petrified, pissed, angry and so stinking emotional. I couldn’t even speak clearly but thank God my body and mind knew what to do and was on autopilot. Being a nurse, I have handled several emergent situations…handling a life or death one with my daughter in my arms depending on me is completely a different playing field.  I could never describe how I felt, what went through my mind…no words can ever put to justice any of this.  I continue gel and administer glucagon shot (turning her to her side in case she vomited). She wasn’t responding (shot would take 10 -15 minutes) so I whipped out my next tube of gel and continued. I begged to see any sign that she would be okay…I cursed T1D, I cursed…and cursed…and cursed.  (yeah, my not so shining moments during this all).  I saw life coming back into Kinzie’s eyes as I am rubbing the second tube on her gums…and I KNEW we helped her in time.  She wasn’t responding appropriately but I knew she was coming to. She became combative and despondent…but that was okay! My baby was breathing, she was moving, and she was FIGHTING! I had already claimed victory. When I knew she would be okay.

During this time, as Kinzie shuts down, Elvis curls into this tight unresponsive ball, almost mimicking Kinzie.  My heart tanks.  I ask my sister to stay with him and help him, reassure him, etc.  When Kinzie starts coming to, Elvis pops up and starts to just go completely nuts, frantic to get to her, desperate to be by her side and protect her. By his reaction, I knew she was going to be alright, I knew we did what we needed to do. My sister took Elvis to meet the paramedics down stairs to bring them up to us.  While she did that I had my brother in law continue to rub gel on Kinzie (still far from responding appropriately) so I can gather anything we may need (insulin pump, pump setting info, emergency stuff, insurance card, ID).

When the firefighters and paramedics arrived, Elvis jumped up on the bed next to Kinzie, scared to leave her side. ..but, the nightmare wasn’t over.  The first responders walk into the room asking what an insulin pump was, what happened, if she took oral medication for her blood glucose, what her normal blood glucose should be…oh the list goes on and on.  At one point one said ‘so you think she had a seizure?’  ‘Uh no! I KNOW she had a seizure!’  They were walking into the room after all emergency actions had correctly taken place and my daughter was coming to…so they automatically assume details.  They weren’t even taking vital signs at this point….and only started to at my prompting.  After we could get her sitting up and breathing deep her vital signs settled within normal limits.  My heart started beating again.  Long story short here, the first responders were COMPLETELY uneducated about type 1 diabetes or anything related to it.  It was disheartening and shocking.  She was clearly in better hands with me, and I shudder to think what may have happened had we not had her emergency supplies on hand with us able to take matters into our own hands….can’t even think about that reality. It was at that moment I decided to keep Kinzie with me, she was stable, not vomiting, BG 67, and slowly starting to talk.

I need to take a break right here and really, really, really, urge every reader (who has themselves or their children) with any special needs to go into their local emergency stations and educate about their needs, help prepare those workers in your community and educate, educate, educate!  I also want to take this time to remind EVERY T1D momma (or any T1D themselves) the importance of being prepared at all times.  No matter how close to home you will be, how stable your BGs have been, how long you have had T1D, how much you know….no matter WHAT, always be prepared.  Always have your emergency supplies with you.  Go over your emergency plan.  Educate those around your child (or yourself) about possible hypoglycemic crisis…you will NEVER regret being prepared and educating.  You will never have to think ‘why didn’t I?’.  Take the time, be prepared.

By 3:30 a.m. we were winding down.  Elvis started alerting ‘high’ because she was rising from the gel, glucagon, trail mix and Dr. Pepper (we got in her after the crisis).  High at this point was okay.  High was comfort.  That entire night, Elvis didn’t sleep.  He sat or stood at her side, alerting to her every movement, her every large fluctuation in blood glucose.  He wouldn’t budge his anxiety through the roof on overdrive protecting his girl.  And I sat there…so MAD that I didn’t do more when he said low before bed! But I did our normal protocol…I did what we were prepped to do and followed our guidelines set by our Endo.  But WHY didn’t I listen even more to our persistent pup?!?! Why did I let myself drift back to bed after Elvis even did a last ditch effort verbal alert???  All I could be was thankful.  Thankful for Elvis, thankful for her vigilant friend, thankful she was still here.

We checked pretty much every hour, or with every unusual breath or movement…the highest she reached was 300s, which is UNREAL after an entire glucagon shot, 2 tubes of gel, trail mix, Dr. Pepper, being off the insulin pump for a good hour and a decreased temp basal rate after reconnection.  Unreal…she must have continued tanking even after the entire event. I just couldn’t process it.  In less than an hour she tanked form 180 ( a definite number) to what they are calculating to 20’s or under.  No warning signs, no nothing, accept a persistent pup who watches over his girl day and night.  What would I do without him? Where would she be if he wasn’t in our life??? What if her friend didn’t come to spend the night?  What ifs plagued me non-stop.

Kinzie’s friend was amazing.  She did everything we asked her to do, and did it quickly.  She stood out of the way, she didn’t panic, and she held herself together.  At one point she had to help hold Kinzie’s head because she was next to the night stand nearly banging her head on the corner.  I couldn’t imagine being in that position at such a young age.  My heart aches that these two girls had to go through this…that they had to face this reality.

We were scheduled to wake up at 6 a.m.  My sister sat in the living area of the room with me, both of us refusing to sleep, refusing to do anything but take watch…both in complete tears, stunned by the nights’ events.  Both nearly paralyzed by our reality. We made a decision no matter how Kinzie felt when she woke that we were pulling her from the dance competition, it wasn’t worth the risk.  She had a solo and 3 team routines ahead of her and we couldn’t bear the thought of even letting her attempt any of it.  My head spun the rest of that night/morning…I was numb, I was terrified, I was completely and utterly thankful to have my daughter.  I laid next to her as she slept at one point holding her hand and just rubbing it, staring at her.  How would I ever live without her? How could I ever even breathe without her?  It hurt so much trying to catch my breath and she was even still here with me.  Life is unfair, life can stink…life can’t be predicted.

7 a.m. rolls around and I wake the girls.  I get her friend up to start getting ready (she had to get up early too because she had a solo as well before team performances).  The girls had probably less than 2 hours sleep.  I wake Kinzie only to tell her the decision her aunt and I had made…and Kinzie refused.  She got out of bed, walking half ways tipped over and unbalanced and slowly put on her solo costume.  In tears she kept saying ‘I have to do this! I know I can!’  She showed up at her aunt’s door and even her aunt was dead set against her even participating.  Kinzie was adamant.  She wasn’t going to let Type 1 Diabetes ever tell her when she can or cannot do something.  She has something to prove to herself.

So we set out to the venue of the competition.  Everyone trying to joke around to lighten the mood of the stark reality we all faced.  It was too close to comfort and we were all still in shock of the previous nights’ events.  That day, Kinzie had determination.  She put a smile on her face and REFUSED to let that smile fade.  She performed her solo and all her team routines.  She was achy, tired, slurred speech, sore muscles, joints and foggy mind…but kept saying ‘I need to do this’.  And she did…the entire day, she did it all. When she took stage for her solo (her first performance of the day) we all (team, coaches, team moms, etc) all watched in awe…many of us had tears streaming down our face.  All I could think was she took the stage, which is all that matters…that, is winning no matter what.  Her team placed very well in all their routines, possibly their best completion and her solo qualified as top finalist, placing 2nd runner up. My heart swelled at the massive determination and dedication she showed to herself and her teammates.  I was beyond proud; I stood in complete amazement and awe.  Fighter, she was in every essence of the word, and fighter.  As the day went on, her aches, pains, confusion, etc set in…she was really feeling the impact of the previous night. Her blood glucose kept tanking, but Elvis was on duty and kept a close eye on her and alerted every single time we needed to take action.  It was intense.

The following week, Kinzie’s body continued to feel the effects of the seizure and loss of consciousness.  Tongue was swollen and hurt from clenching down and biting it, her jaw ached so eating was a chore.  Her bones, joints and muscles wouldn’t ease. She had several follow up appointments, orthodontic appointment and lab draws.  We searched for answers as to why this happened, how it can be prevents and what we might have missed…only to come up answerless and still waiting.  Lab results still pending, no clues, nothing on her charts, trends or anything to show impending seizure and sudden hypersensitivity to insulin, still waiting, still holding our breath.  In less than 3 days her insulin needs were decreased and cut in more than half, only to continue to tank randomly.  Running her higher than normal just to try and stay ahead of the plummets, Elvis working over time.  Refusing to even sleep to watch his girl…his dedication was amazing but I worried that he was over doing it and each day his anxiety grew with mine. Prior to this Kinzie was considered ‘star’ patient, well controlled, balanced, etc.  so we had no way of even seeing what would happen.  Our Endo and CDE even stumped, ruling out all possibilities.  Sometimes, things happen without warning.  Sometimes we have no control over things…and this was one of those ‘sometimes’.  I hate it.

Our organization we got Elvis through had us scheduled for our routine 90 day follow up visit…and sent a trainer down to us immediately to help us decompress Elvis and work through all the events that happened.  They were (are) worked up over the recent events like we were, sad for us, beside us helping us process.  They phoned us, emailed us, offered support and praised us for a job well done, so proud of the puppy they placed in our home and the team work that has taken place since his placement to make him the amazing alerter and watchful companion he is…what if Elvis never came into our lives???

We are still waiting.  We are living our life the closest to normal possible, still anxious for ‘what if’ moments.  We are working closely with our endocrinologist to figure out the trigger to the hypersensitivity.  I am sleeping with kinzie and Elvis keeping watch, all 3 of us are beyond exhausted from the 24 hour checks and little sleep…all 3 refusing to back down.  Future unknown, no answers, no official plan…still waiting…still trying to just live, for now.