Tag Archive | T1D

learn to live, not exist

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

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

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

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

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

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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.

“At least” bitterenss will fade

Today is going to be one of those ‘venting’ posts.  Sometimes, no matter how hard you try to be positive and completely okay with the trial you have been given, you have those moments of struggle.  Well, for me, that moment is here and full-blown.  In these exact moments, even my own knowledge as to why we are given what we are, can’t reason with my emotions; nothing I hear, know or see can make me okay with it.  I admit I absolutely dread these moments; and always pray when they come, that they don’t last long…because each time they present themselves I fear that I might not bounce back to my once former strong self.

I am bitter.  I am angry. I hate diabetes. YES! I hate Type 1 Diabetes with every fiber of my being…the same diabetes that I also profess to be thankful about in the strangest of ways.  That is right, T1D, I hate you and today, probably the past week or possibly even month, I am finding it hard to hold onto that silver lining.  I feel like T1D is a thief that robs all the good.  I also know it leaves different aspects of good…but it most definitely robs us of our immediate safety net. (This is me trying to reason with myself not to hate it, and to remember the things I am thankful for….it isn’t working today).

The longer we live with this disease the more I am able to witness it robbing my daughter of these small insignificant moments that really add up.  For example, dance.  Dancing is her life. Dance is her passion, her hobby, her strength, her outlet…and yet Type 1 Diabetes doesn’t care.  It interrupts anyway.  I can see the physical change wash over her entire body and I know instantly that she is once again victim to its nasty cold grasp.  During practice I can see an ashen color wash over her body and see her fight within herself to keep going even when it is physically becoming impossible. Her comprehension fades, her ability to move coordinated disappears, her eyes gloss over and her movements become lethargic and weak, she just looks lost. It is heartbreaking, and in that exact moment I want to rush to her side and fight for her.  I see that inner struggle, I see it shutting her down when she is trying her hardest not to let it (even if it is for 15 minutes)…and then I feel enraged.  I feel PISSED! I am angry that it has the nerve to make her fight so hard, even during a short 2 minute dance routine.  It literally won’t even let her finish that one small routine.  No one should have to fight so hard, every day, to do something they completely love…but my daughter does.  Many other children do.  (so why is it education is lacking as a whole in world when it comes to Type 1 Diabetes?)

I hate that she has to fight and really all anyone can do around her is stand guard…and wait.  I can’t necessarily fight it for her. As a mother, when our children are in a fight, we want to jump in and aide them in each battle.  But imagine having your hands tied, your voice muffled, and your heart stilled.  Imagine feeling paralyzed, not being able to fight, and having to watch that inner struggle daily (several times a day). It is a mother’s worse fear.  All you can do is wait.  Hope.  Pray.  And wait.  Physically I cannot fight this battle, physically I am powerless.  Physically, I cannot touch it.  Nothing in this world is worse than watching a battle for life take place and physically you cannot do a single thing.  I can check BG, I can give a juice, I can educate, I can administer glucagon shot, we have Elvis to catch everything more quickly and I can make adjustments daily to her regimen…I can even hope that all I do is good enough. I can do multiple tasks, and do them flawlessly…but physically cannot fight this battle for my own child.  T1D threatens her life daily…THAT enrages me.  It ticks me off, it fills me with hate.  And these small insignificant moments, when they come, make me bitter.

Today, I am bitter.  Yesterday I was sad; and Sunday I completely hated diabetes.  Some days it wipes all of my strength away…it robs me.  Sunday was one of those days.  I loathed diabetes Sunday, even at church, I hated diabetes.  I was cursing diabetes and the entire negative it has brought into my amazingly strong daughter’s life. Nothing I would hear, see, do, or you could say could have changed that.  I was full of hate and it was here to stay (for now).  I know life really isn’t fair…it isn’t.  There is nothing fair about life on days like that.  Reason? You couldn’t reason with me to save your life on days like that.  I am sorry but don’t even try.  I didn’t want to be around T1D, but I wanted to soak in my daughter and have her around always.  I didn’t want to go to church or even try to focus with it looming over our heads…but I made us all face the day.

It was complete meltdown city.  Kinzie was full of hate and directing it all towards me. She was refusing to get dressed for church, refusing to eat, refusing to listen to her D.A.D., refusing to be nice, just full of hate, too.  She was kicking, screaming, crying and completely hating T1D. Blood glucose was sky-high out of this world (for her, 300s are rare and kick her butt) ketones rising refusing to leave.  We were all on edge and pretty sure all full of hate. So I did what any mother would do.  I stood my ground.  I stood strong. I took all the hate she had bottled up and directed towards me and pushed it down, every inch of the hate stinging as it hit my ears, my heart and my soul.  But I stood strong, and on the outside looked unmoved by the hate (crumbling on the inside with every sob, scream, cry, word, look, stare…I knew this wasn’t her…I felt hateful too but I can also understand where it was coming from). I continued on.  Goal: to attend church; not to let diabetes win while we all sit at home in our loathing filth of hate towards it.

She refused to get ready, so I made her.  I made her leave the house hair undone, dress was a mess, face stained with tears…we left. When moments hit her like this, you cannot reason with her either…I blame that on my gene pool.  She was devastated.  I was sad, and my husband angry.  As we drove to the church her cries became louder, her screaming, huffing, hateful words continued to flow.  I didn’t like it, I didn’t want to hear it, but I had to.  Once there, the family went inside while I remained outside to throw her hair up in a pony tail (yes, I was nice enough to tuck the mess it was, up away).  As I was doing her hair she continued to cry… ”can’t I just go to your classes today? I don’t want to leave you! I don’t feel good! I don’t want to be here!!!!!” Calmly I listened.  Calmly I replied “Since you started going to class by yourself, I don’t go to my classes.  If I do, I leave often to walk by your class and check.  I do it so I will be available if you need me.  I miss my class so you will be safe.  I walk the halls, so if you need me, I will be there. I sit by the hall, so I can keep watch.I always keep watch. I do it because I love you.”  And silently tears streamed down my face, it hurt so much…I do it all because I love her dearly…but all the love in the world can never take this from her and give it to myself.  Oh how I wish I could let my body be tormented by this disease so she could have that freedom back.  And then it came…the moment I didn’t expect.  She was still facing away from me as I was finishing her hair. “Whaaa? You do mom? Oh mom! I didn’t know you did that! I love you! I don’t ever want you to think I hate you, I don’t hate you!”  That ended her crisis.  She was back.  My daughter was back.

“Mom, can we wait a minute out here so I can gather myself?” she asked. I replied with a “Let’s walk into the building and we will go straight to the bathroom and wipe your face and sit in the mother’s room for a bit and just breathe” (simply because I wanted to at least walk inside that building on time…goal accomplished, we were drained, but it didn’t keep us down).  And we did just that.  We survived 3 hours at church, feeling rather run-down by the events that just took place.  She physically not feeling well the entire time, staying sky-high, with corrections only to hit a 60 the last 5 minutes we were there…and again…I felt the hate creeping back inside.  So not fair, I hate having to watch T1D in action, but thankful I can watch it, because it means my daughter is still here with me.

Guess what? We won…we went to church, we went feeling completely and utterly defeated, but we were there.  Kinzie bounced back and had a wonderful attitude and faced the rest of the day, feeling completely yucky, like a champ. For us, during these times, this is a huge thing…because we can easily stay home and say ‘it was just a rough day. Next time we will go’.  But those words never left my mouth.  Determined to go, I pushed past the hate in all directions, ketones and BGs (even though on the inside I was sobbing she was feeling so terrible)…I stood strong. I know how I handle nasty days is what she will learn, how I handle scares, she will learn.  I don’t want her full of fear or ever use T1D as an excise not to do something…she can do anything, even on rough days.  Even things we don’t really feel up to in the moment…I have to set that tone.  She wasn’t going to witness me giving into T1D because it decided to give us a nasty bout.  Nope.  Life happens, even when numbers get ugly, hatred rises to the core, ketones refuse to flush out, and her body taking a toll…life happens.  And we will live life, every moment and not succumb to this nasty creature we have come to know too well. We faced church, extra checks, me by her side and Elvis on the other side.  We faced it, all together as a family.  Jared naturally helping out with the younger kids, as he knew mom was focusing on getting BGs down and ketones flushed.  He flawlessly takes control where he knows I slack. I adore him.  I am thankful for him…I admire him so very much.

I have to admit I know these moments will always come and go.  I have also accepted that what we (or Kinzie) face will always be here…no amount of praying will ever make it go away.  The good comes with the bad, and in moments like this the bad just covers up the good only to try to swallow us whole.  Don’t let it.  Kinzie is a fighter, she has always been a fighter, and she is far stronger than any single person I will ever meet…as are her siblings; they are all amazingly strong warriors. I also know that bitterness only dwells momentarily, and that when we bounce back, we will bounce back stronger. I also have come to realize that it is okay to have days like this, it is normal…and it is part of the packaged deal.  Tomorrow is always a new day, tomorrow will always bring new perspective.  My perspective today is “at least” I am thankful I get to witness the bad too, because I appreciate the good so much more, it truly is sweeter.  “At least” I have my little family, and I get to hold all 4 of my children.  “At least”….when the silver lining is faded…there is always “at least” until you can pull through those moments to land on the brighter side.

Moments of Stillness

Moments of stillness.

Ever have those moments where time just stands still and all you can think of is how perfect that exact moment is?  With November being Diabetes awareness month I find it fitting to have one of those moments tonight…T1D and all…our moments of stillness are still perfect moments. For the past few days Kinzie has been having random lows which need major basal decreases and additional corrections and major fluctuations (more than normal…so imagine crazy).  Elvis has been on them from the beginning and just never quits.  We think it is correcting, go about our business, and he lets us know we are wrong.  We love him, he is perfection.

Today was a long day, as we are preparing for our first dance competition of the season.  We are running errands, sorting uniforms, getting forms signed, sending out papers, reminding every one of all the details, duet practice, team practice, last-minute run to Walmart (11 at night).

We get home from this crazy hectic day and baby and daddy are asleep.  Jared and Chloe spent the night with their cousins so it is just me and Kinzie awake in the house (cat and normal pet/dog asleep with daddy too).  We are preparing for the night by changing, checking BG, taking Elvis potty, gathering night supplies and changing infusion set since the cartridge in the pump wouldn’t have enough insulin to make it through the night.

In the process of changing the pump Kinzie says “Well, it’s November again.” And I didn’t think much of it not knowing what she meant.  I just replied with a “Yep.” While I was filling the new cartridge with insulin and she was rewinding the old cartridge in the pump.  She then says “Funny how November means something different to me this year.  It means more than just a month that contains a holiday.” And by now I am catching on to what she is meaning…funny, because she is so right. November is the month my husband, dad and son were born; but it also means more than that.  November is a month we honor T1D, and we educate on diabetes.  It is the month we step out, recognize those living with this disease and those affected by it as well.

So I ask Kinzie “what do you think about November?”  She tells me “I think it is pretty awesome that I can say this is my 3rd November that I have lived with diabetes….mom, I lived with it.”

You know what Kinz? You have, you have lived with diabetes and honored yourself in the ways you carry yourself, care for yourself, stand up for yourself and all the obstacles you have encountered and overcame.  Wow.

Yes, 3rd November we have lived with diabetes and survived.

In that moment I was thrilled to be her mother (I am always thrilled, I love my kids) but some moments stand out, and this was one of them.  Living with diabetes is a game changer.  It doesn’t play by the rules, there is no manual, there is no time out, there is no ‘free parking’….diabetes is complex, ever-changing and rule-breaking.  But we have, we have LIVED with diabetes for 3 Novembers’ and this November I am even more proud to share our story, educate and be proud that no matter what has been thrown at us, we are still excited to see another November come our way.

Perspective….it is all about perspective.  In that moment, my world stood still, it felt perfect, peaceful in a way I couldn’t describe (and nothing about T1D is ever peaceful). I was proud that my daughter had a great perspective on this life we are living. Diabetes cannot even change her perspective on life, because she refuses to just give up…ever.  She keeps going; she grows, she changes,  she accepts and she loves just as life is.