Tag Archive | life with 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.

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

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.

“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.