First off I want to share this blog.  Near and dear to my heart, as we are raising funds for Kinzie’s Diabetic Alert Dog and nearing the timeframe for it to be placed in our home.  We cannot wait, especially with our recent scare.  This blog  is a blog of a woman (Percella) who has 2 boys with diabetes (3 boys total, and 1 awesome D.A.D named Delta).  I was introduced to her blog by Dan (of Warren Retrievers) when I was placed on the active waiting list to get our D.A.D.

This blog in so many ways has been a great go-to piece with Kinzie.  She is beyond excited about her pup coming and we always love to see what ‘Delta’ has been up to. Kinzie enjoys the pictures and stories. She asks if there was another post about Delta yet daily…pretty sure this dog should be wearing a super-hero cape every day!

Of course I love the journey of it all.  It brings us great hope.  We are going through Warren Retrievers for our D.A.D, which is where Delta came from as well.  We love our Warren Retriever family, and Percella stepped out and really welcomed us and has supported us the minute we became (actually before) a part of this.

A few other blogs I want to mention briefly are (so sorry it was so hard to choose one!):

This mother has a T1D near the same age as Kinz…and also a fellow ‘wordpress’er (KC & Co.).  I think I found her blog not too long after I started mine, and read her blog faithfully…being able to relate on a great and many things.

Another one  (I mentioned it previously, Big Foot Child have Diabetes) takes a humorous tone on the daily trudges of being a parent to a T1D…and even though she brings humor into it, it is very real.  Sometimes it is easier for me to read about such a tough disease to follow with this tone.  Some days it is just what I need.

I hope you discover these blogs and appreciate them as I do.  Trust me, there are so many other blogs that deserve a mention in my post, I am trying to limit them to a few.  I will try to incorporate my other top blogs here and there a little more when I blog (I always forget to.

And just a few more to add:

the princess and the pump is a great blog as well!  And cannot forget (although, sure you have read) Our Diabetic Life

Read on my faithful and fellow readers! Enjoy!

It means advocacy.

It means late nights.

It means sleepless nights.

It means long fights.

It means extra checks.

It means ever-learning.

It means flexibility.

It means deeper love.

It means pleading for life.

It means extra prayers.

It means more faith.

It means budgeting.

It means pressure.

It means fear.

It means guilt.

It means chances.

It means juggling.

It means sacrifices.

It means changes.

It means hope.

It means educate.

It means never forget.

It means never give up.

It means celebrate moments.

It means remember to live.

It means vigilance.

It means equality.

It means discrimination at times.

It means forever.

It means patience.

It means perseverance.

It means my job will never be done.

Until the day I quit breathing, until there is a cure, until then, until, until…this is me, my fight, my life, for my love, for my every thing.  And I will continue until, until, until.

Last night Joey had to go to the church and Chloe was being adorable and knew just what to do to guilt him into taking her with big blue eyes and a pouty lip (it gets him every time).

Kinzie checked her BG and was low, soda (easiest thing to get to) to the rescue.  No second thoughts.  BG came right up and we went on with our night.

A few hours later I notice Kinzie acting strange on the couch across from me.  She was fidgety and making odd noises. I got up and ran over to her (pretty much knowing ‘D’ was the culprit of these actions). When things look bad, I do not want to waste time…’treat the low’ always plagues my mind; as low lows are emergent.  So Jared dashes into the kitchen and brings two glucose drinks.  Kinzie was alert enough to chug them, but, lethargic enough not to be able to make much sense in what she was saying or doing.

I knew something wasn’t right after the two drinks (over 30 carbs) did not seem to make much of a difference in her demeanor.  I started to wipe her finger to get a FSBS (thinking with 2 glucose drinks on board) I had time to figure where we were. Just as I clean her finger she lets out this horrible noise, slouches and she let’s go of her lancet device as her eyes rolled into the back of her head and her head began to slightly jerk. My heart sank as one of my biggest fears were taking place. She had gotten low enough to start to seize.

I yelled at Jared to go get the glucagon kit.  Without hesitation, he ran to the diaper bag to pull one out (it was the closest location that had a glucagon kit).  As he was opening it, I was rubbing gel. She comes to enough where she could drink; dr. pepper was on the table so Jared ran and got one. I had to tilt her head back and hold it so she could drink.  I then dial 911 on the phone with my other hand so all I would have to do was hit send.  I instructed Jared that when I tell him to, he needed to hit send and say “My sister is diabetic and seizing and we need help now”. Glucagon kit fell to the floor, so I instruct Jared to help hold Kinzie’s drink up to her mouth and encourage her to drink and to not let her ‘ignore’ (when actually she was shutting down, but was not going to tell him) while I went behind the couch to grab it.

As I start to draw up glucagon with one hand, I pricked her finger with my other as Jared was helping her drink, to get a BG. It was low. (30s and 40s with multiple checks the following 14 minutes and a 65 in there somewhere).

Just as I prep to do glucagon, she comes to, mini amount out with 2 glucose drinks, 2 sodas and gel on top of it all).

Still foggy, I knew she was coming up.  I knew that she would be okay.  I knew that Jared helped save her life and we were very much guided in those moments.

Prior to this episode she was 140 (ish…I think) with no insulin on board, no trend, no activity, nothing to even predict this.  In the moments during our ‘episode’ I could only pray for my mind to be clear and hands guided.  They were…you would have thought our actions were rehearsed.  Time like this I am so thankful I have been a home health nurse and had to witness plummets and think on the spot to keep my patients from crashing…life experience had completely and totally paid off.  Opportunity presented to me earlier in my life, had now made sense.

Just as Kinzie came to, Joey walked through the door.  (I was unable to get a hold of him, as he was ignoring my call.  Thinking he would be home soon enough as they were prepping to do closing prayer). Kinzie collapsed in his lap and cried.  She was exhausted, tired, drained, and emotional.  She couldn’t even recall what took place.

I then quietly retired into the kitchen to ‘organize her supply cabinet and put things away’; when in reality I lowered myself to the ground and just wept. I couldn’t believe in that exact moment what she just went through.  I couldn’t believe how stoic Jared was and how his stance never wavered.  This 9-year-old boy, once again, was proving to be his sister’s keeper. What an enormous job. I am pretty sure I spent a good 10 + minutes on the kitchen floor paralyzed.  I couldn’t move or didn’t want to.  For the past 14 minutes I had held my breath as if holding mine would save Kinzie’s.

I am positive details are a little off, as it is a little bit of a blur but it was the worse day/feeling ever.  I should have sat down and wrote a mock blog right away, but I couldn’t.

So last night, we didn’t do much more than survive.  We didn’t sleep most of the night (but that really isn’t new).  We got a rebound high (but it really didn’t go that high and it corrected nicely) which leads me to believe that she was trending low for a while after; we just had enough extra carbs on board to counteract that.

I gave myself about 30 minutes to loath, hate, despise, and reject diabetes.  I broke down, I let it out…and then I carried on.

I let my sister and mom know what happened and they both (pretty sure it is safe so say this without even asking if it is true) experienced a slight heart attack or surge of panic and pain.  Both wanting to rush and rescue or at least be reassured Kinzie was fine. We have known the possibilities, knew we couldn’t always evade the ‘doings’ of ‘D’ but it definitely turned that light on.  My nephews were worried, so they drove over just to see Kinzie.  When they left the younger of the two said ‘Kinzie seemed out of it’.  His mom said ‘she is, she is still recovering.’

I also found out today that Devin (the older of the two) processed exactly what was going on and what the outcome could have been. It hit him with a ton of bricks why Kinzie doesn’t spend the night, why I travel with her for dance competitions, why we wake every night for checks…and that this is a battle every single day for Kinzie.  He tells his mom he wished he could just take it from Kinzie whenever, however long so she could take a break; he hated this is what she has to deal with every day.  It breaks my heart, which, our reality in a big way has to be their reality too.  I know this, I have said it before (our disease is everyone’s disease who loves us…they help carry us without complaint). But hearing those words of a thirteen year old brings it all too true.  His perspective is larger than just himself.  His needs are greater than himself; and at an age where usually it is hard to see past anything but you…all he could do was wish he could fix it all for his cousin.  We have indeed been blessed by amazing family.

This morning Jared was sitting next to me talking about what happened.  My little boy processing what is very much a reality in our life, something that, until last night was only a phantom thought.  He has to face reality of what can happen to his sister.  He carried that weight with him through the day.  I believe this may have been the first day/time he was able to process fully what we are facing…at 9 years old, that is a lot to take in.  His reality is one that not even every adult faces.

Not sure if I even wanted to write about this event, I knew I had to.  It is a fear of every single mother and father to a diabetic child (and spouse I am sure).  It is a reality we live with daily…something we cannot always prevent, even with great training, vigilance and monitoring.  No matter how good my ‘gut’ feelings or promptings are, this is my reality…our reality.  Living with an invisible disease is a struggle.  Educating the greater public on this disease is an even greater struggle as people have many misconceptions and ignorance greatly plagues this disease.  There is no pill, machine, method, treatment, prevention to avoid this.  There is no way to escape it.  Medical advancements take place every single day, and many great things are in the works but nothing to that caliber exists.  Diabetic Alert Dogs are 98% accurate…right now; you cannot beat that accuracy, help, or tool. It is priceless.  We need this now more than ever before. Our reality is a stark reality.

When you see/know of someone with type 1 diabetes, do not write them off.  Do not assume you know their life.  Do not assume their fears are ridiculous or think they over re-act. Do not make light of the situation they face daily…one day you may look back and regret those thoughts and assumptions. I cannot stress enough the importance of advocacy, education and awareness.  Don’t just say you are going to embrace all of the above, do it.  Don’t just feel our pain in this moment, lift it.  Share our story, educate yourself, seek answers, ask; don’t be afraid to come to us with any questions. Do not be afraid to share stories or look for opportunities to help out.  There is always a way to do so.   You can donate to several causes and organizations, you can donate to diabetic alert dog funds, research funds, walks,…you can make a difference. You can participate in walks/events that support it. You can help stop the ignorance before it spreads.  You too, can be an advocate in your own way.  One individual turns into two, then three…and before you know it, there is an entire movement of support and advocacy taking place.  Do not wait until it is too late. Do not leave your regrets to linger. Do not be afraid to carry other people’s burdens.  Do not be afraid that you cannot offer the right words.

The past month(s) we have experienced lows, extreme lows, (like emergency glucagon kit out and ready, waiting) bad days, high days, worse days and a few that were better in between. We have witnessed miracles, promptings, and trials.  But through it all we continued on, we kept going, as if there were no other choice. We did this simply because there isn’t.  Giving up? What the heck is that?

So enter today, (past day and a half actually) and we are greeted with extreme highs, with no changes in life style…nothing to tip it over besides the rule of diabetes…it is unpredictable because it can be.  Already increased basal, increased ISF, temporary basal 20%, I:C ratio increase, extra sight changes, extra dosing, push fluids, monitor more…more exercise without carb loading or basal decreases to combat the lows we meet…and yet nothing. It isn’t making a dent in the highs.

Times like this and I get caught up in my thoughts.  I get lost in the ‘what ifs’ and just cannot help but do that.  400, 430, 467, (mind you, we rarely meet 300s, let alone 400…we correct instantly/increase activity and push fluids at 121). Extreme? Whatever it takes to stay on top, whatever it takes to keep it all at bay, whatever it takes to save a kidney, nerves, blood vessels, a heart…A LIFE.  This is my job, how good I am at it now helps Kinzie as an adult and helps her have a better fighting chance at a good healthy life on her own. At all costs, what ever it takes.  Sometimes being armed with a lot of knowledge can work against you, sometimes it can plague you.  I am thankful I know what I know…but being naive just for a break…sometimes that doesn’t sound so bad.

Sometimes I wonder if God is seeing this.  Every second, every day, every number, every worry, every thought, every deed, every tear, every fear…. “Are you there God?  Do you know I hate seeing these numbers? Do you know the extreme highs and lows scare me, even if I cannot show it on the outside?  Do you know that the extreme fluctuations are what cause damage within my daughter’s body?” “It’s me, Jesica. I want to make sure you know I think it is unfair having to watch this, unfair having to witness my own daughter fight and not being able to take it from her, it overwhelms me…you have filled my plate to it’s fullest. Why! Why?” “I have been faithful, prayerful, loving, caring, hopeful, fighting…” “Can you hear me? Right now, can you hear me?”

And then, in those exact moments when I begin to wonder, question, plead…I realize that this is a trial that we live with that has no cure in sight, there is no miracle to fix it, there is no magic pill, magic prayer, magic anything.  It is life, given to us as is.  We get to do with it what we can, when we can.  How we face it is how we are tested and judged.  Just because we go through this, doesn’t mean we are not loved.  Just because these thoughts enter my mind, doesn’t mean I am bitter or losing faith. It means we are human. I have many human moments every single day.

I can honestly say that some mornings, after rough, rough, rough scary nights…I wake and just watch Kinzie sleep; watch her breathing before I wake her.  In those moments I experience complete peace. There has never been a greater sight on earth than waking up to be able to watch my daughter breathe…at ease, at peace, still going strong. It is like getting a gift every single day, the gift of life, the gift to fight, the gift to go on, the gift to raise awareness, the gift to be thankful once more for what I have been given; not worrying about what I have to face.

So instead of my “Are you there God?” moments…I really, really, really want to replace them with “You know what you are doing, God, please continue to guide me. Please do not give up on me” type moments.  They are better suited for a battle, a journey, a trial.

As selfish as my thoughts get, as selfish as I am thinking I am being overlooked, overloaded, or delt an unfair hand…I am simply reminded to continue on.

Ever experience moments like this?  Ever wonder who else, in that exact moment, is having one too? I do.  I can only imagine the pleading, praying, crying, rejoicing that takes place during the exact moments mine do.  I can only imagine the pain and suffering going on while I am stuck in a rough patch.  I can only imagine who needs grace, love, and uplifting more than I do, because I have been put in a place around various people to keep me going, to keep watch, to pray, plead, love and help us for a purpose…because when others have greater needs somewhere else I am safe where I am…I am safe to carry on.  Timing and placement have a lot to do with everything.  I wonder how many times He is saying…”Are you there, Jesica?  Did you notice what I have done for you? Do you remember my plan? Do you remember I will not let you walk alone? Do you remember? It’s me, God.”

It’s going to be a long night, possibly a long day…full of checks, changes, worries.  But, we can do it, like we have in the past. We can get it done, we can continue.  Do I think I have just been ‘lucky’ to have the support and receive what funds we have for our D.A.D??? Absolutely not, this whole thing has been inspired, directed, guided…it has all been done through divine intervention, timing and design. It is a miracle all in its own way.  With the little we have left to raise, I know that it is completely possible, I know that we are getting another greatly inspired ‘tool’ to help us keep watch…all becuase of where we are and who surrounds us. I know this, so how come it is so easy to forget, over look or push aside?

We are lucky enough to keep most things at bay when it comes to T1D; in fact, we do quite well considering all of the stories that I have heard. Even with crazy numbers, we are able to fly by the seat of our pants and take control on our own with no major medical interventions and no major damage done so far. But we do it at a constant cost…sleep, time, focus, and energy.

Everything, and I mean everything, is worth it.  There isn’t anything on the face of this earth that I wouldn’t do in order to give Kinzie the very best chance in the entire world.

Hormones just pretty much are the trickiest little buggers out there.  As if they aren’t hell on just any teenager…add a chronic illness to the mix and you got yourself a whole lotta fun! (Insert sarcasm here). I swear some days it is as if we are injecting plain water…and other days it is as if insulin works double time with no notable trend showing. No reason or rhyme to the highs and lows. Guess that is why I must consider our selves lucky to experience the ‘new world’ of Type 1 Diabetes pre-hormones.  I guess that can be the silver lining of it all for us…timing.

A few months ago (December-ish) we were hit with the most crazy highs and then again February requiring the craziest jump in basal rate, insulin:carb ratios, and ISF (insulin sensitivity factor). And it is still slowly increasing.  But now, we get hit with random lows.  Low-lows.  30s, for no good reason other than it can, so it will.  Nights have become more stressful than ever…and I completely dread them with all that I have. Numerous times when I check her she is crazy low, only minutes after a great check (gee, thanks hormones and pancreas for completely sucking!) And she NEVER wakes up with lows, never…and as time goes by, she isn’t recognizing lows and highs like she use to unless there is a dramatic change within minutes. I absolutely cannot wait until our life saver, our blessing; our furry friend is here to help us out.

Previous to hormones entering our life in one fell swoop, I thought I wanted to get Kinzie a diabetic alert dog closer to college years…now I am most definitely singing another tune…WE NEED IT NOW! I am thankful for (Dan) at Warren Retrievers who stressed how now the most opportune time…boy was he right! Thanks for the heads up Dan; once again, you were completely right!

At Kinzie’s recent competition, we couldn’t get a stinking BG before she went on stage…we did multiple sticks to no avail.  So I did what any other paranoid mother of a T1D would…Treat it like a low.  Thank goodness I did, as she dropped a good 60 points (that’s what I call it…points.  Nope, not weight watchers…speaking of blood glucose) in less than 20 minutes.  Good low mom, good low! (haha!) (I dream of having our D.A.D with us next season…I cannot imagine the peace of mind it will give me on such occasions.) And again, it happened when her routines were nearly back to back and we didn’t have time to check her again.  Treated like it were a low; again, good catch.  She was low.  (Sometimes I feel like the diabetic alert dog…with so many promptings to check her BG for no good reason other than having a ‘feeling’).  The entire competition weekend it continued to happen.  Swimming, I pulled her out, and she couldn’t even hold her hand still enough to put her blood on the strip but didn’t even feel it while she was swimming (and not for a long time to add).  Frustrating to say the least…makes me wonder and worry ‘what if’…’what if I do not get that feeling, what if I do not check at the right time (as catching a fall and rise in action can be tricky as it can happen in a matter of minutes/seconds).  What if I am ever too late?’  I can honestly say I hate the what-ifs that plague me in my life.  They scare me beyond what any mother should ever have to be scared…and yet they are a stark reality of what we face on a daily basis.  I count my blessings every day, and my promptings, and my ‘catches’, and my feelings…for now, they will have to do until we have our diabetic alert dog and until a cure if found.

As times goes on and we experience the wonderful un-predicting world of type 1, I am brought to the reality how harsh and challenging this disease really is. How tough our battle will get and how many road blocks are waiting for us.

I catch myself thinking about the future.  Where will she go to college, will she be safe? When she is driving, not only do I worry like every other mother, but I get to add T1D to the plate and pray that she tests before she gets behind the wheel and will always feel the need to pull over.  Will she continue to surround herself with the most amazing friends?  Will she continue to stand up for what is right, at any cost? Will she continue to be strong? Will she be healthy enough to have children? Will she marry a man who will/can take care of her?  Will she resent this disease and completely rebel and hurt her body out of pure ignorance and anger?  When I cannot be there, who will?  The future scares me beyond words…I anticipate it and hope it will be good, but fears continue to linger in the background.  Fears do hold me prisoner.

Often times I put a smile on my face, with a can-do attitude…because if I don’t I just may break.  When I talk to people about type 1 and our story, I share it with complete passion, I cannot help it. It is our life, it means life, it is our fears all rolled up into one. I nearly break down when I do share, because when fears leave my mouth transformed into words, it brings it all too close to home.  It makes me fully embrace what we are facing.  That can be tough, it is hard and sometimes I cannot help but break down.  Sometimes I cannot be as strong as I would like…sometimes it scares me senseless, but I know that I am not alone.  I know I carry the same burden that many women carry.  I know the road I walk may be quite unknown, but it is possible to fight and continue on our way.

Today was one of those kinds of days (crazy busy, cranky baby, crazy toddler, independent Kinzie wanting me to back off, and Jared and his ‘I know(s) before I even get my thoughts out)…and I wanted to scream at so many moments. At the same time, I thought, thank goodness I get to experience this.  Thank goodness that this is my life, thank goodness that, even though what we go through isn’t easy…thank goodness we get to go through it.  It means we are still here, still together and haven’t given up.  Today was the kind of day where the house wasn’t picked up, dinner was late, running around all day, I was on edge, and everything that could get in the way did…but again, it felt good in the strangest way.

Ever been held prisoner by fears no matter how much you protest to them? Ever think about the future with great anticipation and angst? Ever wonder if what you do will continue to be good enough? Ever wonder if your actions will be too late?  I try to welcome the future with open arms, and most the time I succeed with this.  But days like today it scares me and I cannot deny it.  Days like today I hate the thought of leaving our familiar and venturing out into an unknown land once again.  Does it get harder? Will it get harder?  Will we continue to be the lucky ones?  Can we do this?  Am I doing all that I can?

Plagued again tonight with so many questions swimming about in my head, questions I would rather gather together and light on fire than think about them for another second. I cannot control them, so why do they get to stalk me like a swarm of bees waiting for me to take the wrong step?

In the end, through it all, I need to end with a big “you are mean hormones!” and “You suck, Pancreas!” and know that I am indeed a very blessed woman with the tools I have been provided with and support that has amazingly surrounded our family since diagnosis.  Along with the bad, fears, and fits…I must remember that good always trumps.

I have been getting little sleep in the way of nights…as type 1 would have it, we keep getting thrown odd low numbers in the night for no reason or rhyme (which means Kinzie doesn’t get much sleep…and kids need sleep). I feel so bad about that, and struggle with the fact that I absolutely cannot change, fix or solve type 1 diabetes.

In less than two weeks we have experienced 3 different occasions that have made me so thankful for promptings and guidance.  I have come to realize more than ever before that when I fail, or circumstances are beyond my control, we are most definitely watched over and prayers are answered.

Our first experience happened one night and I posted about it on my facebook April 6^th

“430 am and what was I doing? That’s right, pump infusion set change. I slept through one alarm and didn’t wake until two hours later (my D mommas, when you are sleep deprived, after a few hard weeks, what do you do to ensure you don’t sleep through it or turn the alarm off in your sleep and continue to snooze?). So I got up and Kinz is a bit elevated 220 ( normally I hate those numbers). Not the end of the world. Stayed up until midnight and dosed for a large high right before bed (scheduled to wake 2 times to make sure she doesn’t go low and corrects.) I am thankful something shot me right out of bed. Divine Intervention? I would like to think so. See, her cartridge was out (no insulin in the pump, so no basal rate going) like an idiot I thought about sleep and skipped that important step at bedtime….just checked BG final time, dosed and melted into bed. The pump alarms when it’s low, but I never heard it and was focused on my bed. So I run to her room praying she didn’t go low from my complete neglect. 220, thank God…seriously. Times like that I welcome a 220. I am pretty sure given her correction factor, her BG now and her basal rate, she would have been low after her last correction (all her signs now point to that). So I am thankful her pump ran out of insulin and she didn’t get 2 or more hours of basal. Funny how we are definitely watched over and how, out of pure exhaustion, our small mistakes that can be detrimental work out like a blessing in disguise.”

I was completely overwhelmed after that night, exhausted, but so thankful.  It opened my eyes, scared me a bit more…but left me thanking my Heavenly Father, once more, for waking up to a living, breathing, healthy daughter.

I was up one night cleaning (yes, cleaning…sometimes it is the only time I can when things get chaotic)…and I posted this entry on my facebook…”Up cleaning house in between night checks, because, sadly this has been the ONLY time/energy I have put into our house all week. Insert EPIC mom and wife failure moment here. As I am cleaning, I am thinking about a few things. Mainly, trials. (of course). I know that we will NEVER be given more than we can handle. How do I know this? Because I live it daily. Just when I think I cannot handle more…I am given more to prove my strength. When I am about to burst I get thrown tender mercies which graciously lift me up and carry me until I recover. I have a bad day then two good days. I experience simple miracles and receive great blessings at precise timings. I am thrown curve balls which make me realize I can do this, I am resilient. I know this all to be true, I know my Heavenly Father knows me, my limits, my capabilities, my hopes, my needs, and what is best for me. When I am feeling defeated I am able to witness someone else’s trials that extend far beyond mine so that I can be assured that every one experiences trials at different levels, and in the moment I am fortunate enough to wake up, take a deep breath in…and be thankful that I have one more day with my daughter. One more trial to say I was able to over come. I know that one day, some day; I can look back and understand more about what we are going through. I am thankful that i have been given the knowledge and listened to so many promptings in my life. I cannot imagine doing this alone or without my faith.

I can ask why me all day long, but may never really be given that answer. So instead of why me…I am going to think why not me? Why would I ever think I was above such trials? Why would I ever think that trials only happen to other people? I agreed/chose this test, I knew it was going to be hard…I knew it at one point and believed I could…so I know it is all possible. I may not know why, but I can focus on ‘I can’. I have this trial so I can….raise awareness, be humbled, love unconditionally, learn to receive, be humbled even more, be glad, overcome, step outside of my comfort, be heard, create a movement, advocate, love deeper, be thankful, learn to live, learn to trust, learn to communicate, re-invest in family, be humbled again, witness miracles, gain faith far beyond what I ever thought possible, learn to share, experience emotions, learn to cry, empathize, compromise, and love my journey as an all inclusive package.”

And wouldn’t you know, shortly after, I just had this overwhelming sense to go check Kinzie, even though there wasn’t a reason, her BG previously was fine and wasn’t ‘due’ for another check for over an hour…

“Starting this Sunday off right thankful prompting #1 for the day…1:10 a.m. still not in bed, up cleaning. I get the urge to check Kinzie (who isn’t due for another check for at least a good hour and fifteen minutes). 49. Recheck (hoping for false reading…42). (oh, where is our dog!?…soon, soon…it will join us). prior to this check we had a check of 120 with 9 carbs on board undosed and a -10 % decrease of basal since we had a pretty exciting day, and then another check at 140 (perfect)…this check was only about an hour ago. So in less than an hour she has plummeted, 1/2 can soda and a handful of peanuts and 15 minutes later 39. So gave her the other half can of soda and anxiously awaiting our recheck in 15 minutes….with glucagon kit out in eye sight.”

On another occasion, hubby woke up and in complete confusion (from being up all night with Kinzie checking because I was scared from random highs and lows that have been unpredictable and no notable trends showing) I mumbled for him to go check Kinzie and was panicked like I had missed a check or slept through an alarm.  My heart was in my throat.  And just as he left the room, I realized I had just crawled in bed about 45 minutes prior to his waking and already had checked her, her numbers were good.  Sad thing is I was way too lazy and tired to tell him, so I let him check her.  Good thing, once again, 50, for no reason or rhyme again.  Thank goodness in stupor of sleeplessness, my sheer panic and jumbled thoughts meant we caught a low that Kinzie (like always) wasn’t waking up to.  Puberty isn’t very nice to T1Ders and throws many curve balls towards us daily.

When we catch Kinzie with ‘low-lows’ at night, she is always harder to wake and more confused when she comes to.  She has never had any low, no matter how low, wake her up.  That frightens me.  70s, 60s, 50s, 40s, and even been thrown a handful of 30s.  I hate that. One night, she was so confused, in between two nights we were fighting lows…and the stinker wouldn’t wake up enough to comprehend what was going on it was quite funny and thought I would repost this. She actually does this a lot, and everytime afterwards I am laughing just thinking about it.  We share many moments in the night that otherwise, we might miss out on.  I am thankful for (since we have it and cannot change it) Type 1 Diabetes, it opens my eyes daily.

“Really not a fan of Kinzie half asleep acting like a fool! Went in her room, she sat up. Thought she was awake. Handed her the glucometer and told her to check…my mistake…she interpreted that to mean take everything from the pouch and empty it in random places, poke your finger, hide the lancet, then wipe the blood on you blanket and stare off into space confused as to why the glucometer didn’t give you a blood glucose reading. Oy! Try finding all the items from the glucometer pouch in an unfinished room (she just moved into her room) in the dark, guessing where items landed. Not as easy as one would think. It took 45 minutes I will never get back ;0/ ”

Needless to say, this month has brought several moments that I am thankful for, several moments that make me feel human, and several moments I can only credit my Heavenly Father and tender mercies for.  I am in deed a lucky woman and my faith once more strengthened.

Experiencing several months of fighting highs and lows with no real trends makes me want our Diabetic Alert Dog (D.A.D) even more.  I cannot wait for that day and that extra help; it is very much needed in this home.  Getting a D.A.D is an answer to our prayers; it will be one more tool to help keep our daughter safe and as healthy as possible.  We are anxiously awaiting this new arrival to our family as if it were a baby we are expecting. I cannot put into words the excitement, anticipation and sense of relief we are experiencing.  It is like I am holding my breath once more and working off of sheer intuition these days (or is it exhaustion?) either way, our days are numbered until we get our furry little family member that will forever change our daughter’s life.  How amazing is that?!

We are so very close to having all the money toward our D.A.D…waiting on our eBay items to close and then we will have the cost of the dog and only have to raise our care package and our annual health, theft, and death insurance for it (so at the most about $900 left to raise, but less than that once our golf clubs sale that were donated to us).  All in less than 2 months, you have made this possible.  I stand amazed every single day.  Much love sent out to you, you all have made that possible.  I cry just thinking about how far we have come, the support we have received, the wonderful thoughtfulness and amazing people who continually lift us up, even through their own trials.  I have experienced a true charity the past year and a half, more than I ever thought possible.  I have been blessed to have my children be able to witness such acts.

So in honor of true charity and honor of my daughter, I signed my family up for the Walk to Cure Diabetes and created our team “Kinzie’s Krusaders” we will be raising funds that go to JDRF to support T1D research. I will walk to honor my daughter.  I will walk to honor all other T1D and their families who experience the same trials. I will walk to support a greater cause.  I will walk to raise awareness.  I will walk to keep hope alive.  I will walk to help find a cure.  I will walk, because, if I do not how will we ever win this fight? With great hope in my heart and and a cure in my prayers, I am anticipating this new adventure.  We are all so stoked about it, I have been told it is the most amazing experience.  I want my children see us supporting great causes and not just raising money for our D.A.D. or sports.  It doesn’t take place until November, but I am already gearing up!

I am thankful to know that my redeemer lives and that he bled and died so we may be forgiven.  How crazy is that? How amazing is that!? Just even thinking about giving my only ‘begotten son’ so that others may live just brings goose bumps all across my body. I am not sure I could have that kind of courage, dedication, love, bravery…I mean I doubt my own abilities, I doubt my own worth at times and often think that someone else can/will be better.

I think about the heartache that can come with having a child with a chronic illness and how much pain it can bring to me.  I cannot even begin to imagine how much just my daily sins bring pain to God.  What an amazing sacrifice he gave for me…Jesica.

I can only imagine, as I do with my own children, the hopes He holds in his heart for each and every one of us.  He had enough faith in his son and in us to do such a hard thing.  We all, every single one, mattered enough…we were worth it. (need to remind myself of that…and often).

I thrive off of my religion and I get much needed strength and guidance from my faith and church.  I could not even imagine walking this road without it. I could not even fathom doing this alone. I couldn’t.

Upon diagnosis, I was bitter.  I was in denial.  I was sad.  I wanted a miracle, I asked for a miracle; and indeed, I have received many since. I have learned that I may not receive what I ask for, but retrospect I will have been given what I needed.

For example, I pray every single night to keep Kinzie safe, me in tune, and guide us until morning.  Just the other night Kinzie was battling a high. We had been up (doing site change, extra dose via syringe, etc) and wanted to go to bed after 12 a.m. (I think). Insulin on board is what insulin is in your body working.  So I cannot just send Kinzie to bed with insulin on board…never know if it will for sure over or under correct or be spot on.  Vigilance is key; we are only using intuition and great educated guesses.  If only our pancreas would write a book for us before it decides to break down, right?

Anyway, that night, she and I were completely tired, worn out and had enough.  We decided to try to sleep and I set my alarm to check in 1 ½ hours x2 until IOB (insulin on board) was 0.  First wake up call…she was high, correcting nicely, IOB still, on target to where we wanted her to be…so alarm set for1 ½ hours later.  I slept that alarm.  I just sat straight up in bed 2 hours later just saying “Kinzie!” as I came to. I ran to her room praying and pleading…phew…still breathing.  Check her BG and it was 220 (boo!), which didn’t make sense.  Then 2 seconds later her pump alarms (as it does anytime something goes wrong and it usually wakes me, but not this night). Her pump was out of insulin, so she had not received ANY basal rate for at least 2 ½ hours.  (The last time that happened was when her infusion set became unhooked from costume change at her last dance competition; she was at 540….NEVER that high before.  Glad we caught she was unhooked).

So the mystery as to why she was so low considering is simple…no basal rate, however, she was overcorrecting and quickly.  Had it not been for the cartridge being empty and her not receiving any basal rate, or me sleeping though my alarm clock and the alarming pump, I am beyond positive that she would have bottomed out and I would have woken to a worse case scenario. I do not doubt for one minute that we were being watched over and protected.  A simple mistake that I normally would have been so upset at myself over and continually beaten myself up over, turned out to be one of the greatest miracles I have ever experienced in my life.  I matter too…my Heavenly Father watches over me too.  I know this for a fact.  I also know and feel that we do not face this alone and never will.  I know that I have someone always pulling for us and letting us witness simple miracles throughout our journey to help strengthen us and keep us going. I not only know this, but I feel this. We were protected in one of the greatest ways possible…it was in full force at our house that night.

I pray for a cure everyday (along with a great and many things…but realizing and allowing it to be God’s will).  Will she witness a cure? I pray she does…but if not in this lifetime, I know that one day her body will be in perfect functioning form; I believe this with all my heart and soul, deep down into the core of my being.  And on that day, I will rejoice for a job well done and a trial defeated.  I will see my daughter rewarded for gracefully facing her trials and doing what is asked of her if she continues to live righteously.  I know this to be true without a single doubt.

As a parent to a T1D, I fear the ‘experimenting’ age.  Her body deserves (as does any body) to be treated with respect…as a temple.  I fear the consequences drugs and alcohol can have on her body as it already faces a great feat especially if it isn’t taken care of.  I know that I cannot expect her to remain strong and never waiving from stance if I do not lead by example.

I know that what I do and do not do on a great and many levels will directly be a reflection of my works and efforts; this isn’t just her trial.  That pressure alone, with children who are healthy, is tremendous tasks…add a chronic illness to a child and it adds just that much more weight. I cannot afford not to try my best…her life can literally depend on my growth and daily actions.

Every single day I strive to be and do better…and daily I am presented with many chances to do so (or not do so).

Miracles happen on all levels, every prayer counts…and just because we don’t get our way, it doesn’t mean that we are not important enough.  It just means that perhaps it isn’t the right time or circumstance for us.  We have a journey to do here.  There is a purpose to our being. Free agency is a great thing, it is a gift.  We can choose to act/not act upon many things.  We are not forced to act or do anything.  I am not a God fearing woman…I am a God loving woman, mother and wife.  With God, all things are possible…it just depends on the right timing.

As impatient of a person as I am, I still know that one day all of my prayers and promises will be fulfilled if I only do my job. I draw power from that.

I was looking through my ‘facebook’ status’ and I must say I wish I could follow my own advice or even possibly keep the hope I have on certain days with me always.  I do not, so I look back to get a little pep talk.  Find that inner strength again.  The following status rings true today, as a hard decision was made and followed through with:

November 9, 2010

“Today I am thankful for control. Learning when to take it, when to give it and when to share it… emphasis on LEARNING.”

It has been a long day. (shoot a long month, who am I kidding?)  We have had many tasks to do today.  One of which, was pull Kinzie out of school.  What a tough decision that has been.  We just have hit a bump in our ever-so-winding-road; and I am sure we will straighten out once again.  Poor Kinz has just had a really, really tough time with highs and once we were done chasing the highs, we are met with a few lows (but not as many lows as I has expected) and it has taken its toll.  She is up to her limits, nearly past them.

Kinzie doesn’t have much control over many aspects in her life.  We have been advised from the beginning to give her control where ‘safe’ control can be given.  Let her make choices when ‘safe’ choices are available and let her call the shots when they are a ‘safe’.  So after our much hated and dreaded long past month and breakdown, Kinzie was still positive that she wanted/needed to stay home.  I cringe sometimes wondering if the decision I make now will be the right decision leaving a positive lesson to be learned or a positive influence for my children.

This year in the public school system has been wonderful.  It has given Kinzie back her confidence and taught her that she CAN…and she isn’t afraid to try anything once more.  I think that in so valuable.  Last year compared to this year has been complete polar opposites.  Last year was a nightmare, this year has been such a blessing.  I credit that to 1. a new and very understanding principal who is VERY much proactive when it comes to student safety.  2. a VERY loving and in-tune teacher who taught Kinzie so much more than just ‘school’.  She let the light inside Kinzie grow once more and shine.  She gave her control when possible and kept her safe.  She let Kinzie feel love and secure.  She gave us a great gift this year, which was just what Kinzie needed. 3. A nurse who is ever-learning.  She always is open to learning. She makes changes when changes are needed.  She is organized and communicated EVERYTHING.  I love her.

I was saddened withdrawing Kinzie, but it needed to be done.  The poor kiddo just needs to have a schedule that can be more flexible, stress free and where she can get some sleep whenever possible.  Medical burnout at its finest dwelling inside her at the moment, and we just need to rise to meet her needs for the moment, flexibility with T1D is very much a necessity.  Every teacher (librarian and nurse too) was overwhelmingly supportive and loving today, all sad to see Kinzie leave, but understanding her unique needs; every single one offering help, support, guidance, extra activities for her.  How blessed have we been?  How grateful am I?  We are beyond lucky.

We have had so much support from friends in the home school community reach out and help me just get her out of the house.  Letting us know of activities, etc.  They are all so sweet, understanding and not once have said that they are too busy to help us start out.  We love them, and are thankful for all of their help.

On top of it all, we have a wonderful loving, caring little 9-year-old boy who is battling a war with diabetes…not that he has it, but he too, hates it.  He is worried about his sister and sees her current struggles and is feeling very helpless about it.  He hates the time it takes from us and the focus it shifts off of him at times.  He wishes it could leave (as we all do).  But how blessed am I that he is vigilant and smart enough to articulate that in a very grown up way.  These are ‘grown-up’ issues and he has to deal with them as well.  He amazes me every single day.  I love that guy so darn much, and every single day I am thankful for his health, heart, love, and smiling face.  He lights my world up no matter how dark it may seem.

Needless to say we are in a tail spin of sorts. We aren’t loosing our footing, just finding a new part in the world of T1D.  We are all experiencing new struggles and internal wars over it, but it is a very good thing we can communicate with each other about it.  I have wise and strong children. I have a strong and amazing family…together I know we can do this. We are using skills we never thought we would, we are living through fears we never thought we would be faced with, and we are experiencing new things every single day that I would have never thought we would experience.  But, for those of you finding yourself in similar situations, I am going to say the ever-dreaded words right now…IT COULD BE WORSE…because, well, it could.  And it has.  If you are able to relate in any way, and are in a tail spin…know that you can and will get through to the other side.  There is always a solution.  There is always a way.  As much as I hate T1D, I know I cannot change it, so I look for the good; and every single time I look for the good in it, I can find it no matter how small it may be.

So when I think of control, and all the control we have lost in our lives, I am still thankful. I am still grateful.  I am still optimistic.  When I think of the control I have been given, I am even more thankful and grateful…without the control I do have, I would be one ball of nerves.  When I think of sharing control…I think of working together for what is best for Kinzie.  Everyone we allow in our life is willing to share control to an extent and responsibility.  That is awesome.  Not one person has turned their back or said it was too much to help with.  I am currently working on ‘giving’ control.  Haven’t even aced that task, but I am mindful of how important it is.  I know I need to give it a little more…but baby steps.  Noah didn’t build his ark overnight.  It is all still in process, and I think it will always be ‘in process’ but control is something that comes up daily.  Control is always there, whether we lose it, gain it, share it or grant it.  Our trials are our trials alone, and what may be my mountain to me can appear to be only an ant hill to someone else.  We are only granted what we can bear, or so I am told and believe to this day. Control, are you thankful for it, even when you cannot change what it is?

I want to visit a great example of communication break down.  Ahhh, those words alone sting a little!

The end of last month (March) my wonderful and very helpful husband filled Kinzie’s prescriptions at the pharmacy.  I was busy one Saturday so he took it upon himself to help me out and refill everything.  He called me and told me not to worry and he will take care of it. This would be the first time, since diagnosis, that I didn’t refill our scripts. Yes, I am just that controlling.

How nice is he? Every little thing helps, every little thing I can take off my ‘to-do’ list counts!!! I need to work on letting him take more responsibility in everything, but it is such a struggle.  I know I know what to do and when to do it.  I have a system down, I am confident in my abilities.  I naturally research and learn and progress. I take it as a challenge to do better for Kinzie every day.  My job as her pancreas is a very important job.

Fast forward until now…every month I go through our ‘supply’ cupboard where we store all of Kinzie’s supplies (except of insulin of course).  I experienced a brief moment of pure anxiety and possibly a what I would describe as a minor heart attack, when I discovered we had one bottle of glucometer strips left!!! That shouldn’t be!!! Those suckers cost over a hundred dollars for just 100…and we use 350-400 a month, insurance only helps pay for 300.

I have worked diligently the past year trying to build up a ‘stock’ of supplies.  With any extra money we get I buy things here and there as diabetic supplies are pretty darn expensive.  It just didn’t make any sense how we were running so low!!!

So I did some investigating.  In complete panic mode, I went through everything in the cupboard, fridge, receipts…etc.  This is what I found…My husband neglected to tell me he only could fill our ketone strips at the moment and had to wait to fill the rest in 4 days.  He assumed I would just realize it when he didn’t put things in our cupboard. I didn’t even think to double-check.

So I thought it had all been taken care of, while he assumed I would take care of the rest of the supplies on another day. Communication…we have been together 13 years, you would think we have that down to a ‘T’.  No, we don’t we just assume the other is on the same page as we are.

So there we were, my stash depleted and my spirits squashed, as I was beyond excited how well I had built up our stash.Lesson learned the hard way…communication is key! We simply cannot read each others mind! In the moment I was very upset and felt defeated, sad, angry, (and every other emotion a pancreas would). Now, looking back, I realize that it was prime opportunity.  As I lost out in an entire month supply and used a great deal of my stash for emergencies, I realized that we are in such a hurry sometimes we forget to communicate even the greatest of details.

So prescriptions were refilled and I have set a goal to build up a 3 month emergency stash within the next 6 months.  It isn’t an easy task, but it is possible.  Another goal: communicate.  Even when I feel like people are on the same page as me. It doesn’t matter how well they know me, they cannot read my mind.

I am thankful that my husband takes the initiative to try to help take many tasks off my shoulders.  I am thankful he is so supportive and nice.  I am thankful he is patient even when I get worked up.

So my dear friends, take it from me…after wasting well over $500 dollars this month and missing out in insurance helping to fill our scripts so our emergency stash stayed put…COMMUNICATE efficiently and effectively in all aspects.  Despite what we may think, there are no real mind readers out there! ;0)

For those of you who do not know, type 1 diabetics when doing MDI (multiple daily injections) instead of the pump, take 2 different types of insulin; a fast acting and slow acting insulin.  Slow acting insulin is a larger dose taken one time a day that acts like ‘basal’ rate in your body for 24 hours.  It helps keep your BG in target; it is in place of what your pancreas should be doing…releasing insulin throughout the day to keep BG in check.  Fast acting, acts fast, does fast corrections and is the insulin you use to cover carbohydrate consumption.  FAST acting being key! Insulin is a high alert drug because you dose in units (which is very small amounts) and even being the slightest off can mean so much.  In our case, Humalog was Kinzie’s fast acting insulin and Lantus was her slow acting insulin.

The following entry was on March 16^th, 2011…A night I will never forget.  It was a night we were definitely being watched over…teaching moment for all.

“serious life or death mistake made tonight =(. In the hustle and bustle of the night i was changing chlo when kinz drew up her lantus. sure enough she injected it and before we knew it she plumeted~yeah…it was her fast acting she drew up.”

The following were comments under my status:

“Oh no! Is everything alright now?

wow, that is scary Jes! Hope she’s okay!!

ME: if she didnt feel herself dropping so fast this situation could have been deadly. I AM THANKING MY GOD TONIGHT FOR KEEPING MY DAUGHTER ALERT ENOUGH TO REALIZE SHE WAS SUPER LOW AND TO CHECK. We are reversing the humalog (countering it with carbs)…and learning a lesson to slow down and use this as a huge teaching moment. Oh my. We always double check~ but tonight we neglected to follow our routine. We are so very blessed. Counting my blessings twice tonight.

Oh…scary. I hope all is okay!

You are so amazing and you have taught and educated her well. Knowledge is power. So grateful HE is watching over us.

You are one strong mama!! Idk how u keep it together. I would be a blubbering idiot. Keep up the good work mama!!! And I hope kinzie is A-OKl!!!

And kudos to Kinzie!!!

Oh my goodness! So thankful you guys have educated yourselves. Awesome job Kins! And thank God for protection.

‎(((((Hugs))))))) to you all. How scary.

ME:  All is good…got her up and stable and she is amazing!!! Thanks everyone. I just keep thinking ‘what if she would have slept 1 more hour …’ I can’t go there because it was far too close to a reality. Hug your lovies tonight and may your heart soften for those who you are at an impass with… Night everyone, I am laying my head on a pillow–but not before I thank God, again, for blessing me with my life and my family’s lives. May we make every second count and not take for granted any moment we share whether it be a trial or a triumph.

Like!

Holy cow Jes!:( I am so. sorry! I am soooo glad everything’s ok. I love you guys so much. I’m thankful you and joey have worked so hard to teach Kinz and grateful she’s learned so much. She’s pretty amazing:) you all are!

How very scary! You have done a wonderful job at teaching her and preparing her to fight this battle along side you! Kenzie is an amazing lil girl to of handled this situation God has given her and conquering it day by day! BIG HUGS !”

Now many of you are probably thinking, oh well, easy fix.  No, we got lucky.  She went to bed, fell asleep (night time lows never wake her up) and I didn’t think twice about checking her.  I wouldn’t have checked her for 3 hours since her BG was in range and beautiful.  She woke up less than 40 minutes of falling asleep and was already in her 50’s….she had more than half fast acting insulin on board still…and it would be in her system for a total of 3 hours.  When she got up she was confused, emotional, shaky…it was because of how quickly her BG was nose diving. How she woke, I will never know…but I know I owe that night to my Heavenly Father…He was watching us, He was protecting us.

50 is a low blood glucose…and her BG was dropping even further.  Many people have seizures from BG in 40s and 30s and then death.  We were not far from that point.  Another reason why we NEED a diabetic alert dog…another reason why I cannot WAIT to have on with us, watching over her at night.  Another reason I am a God loving, not fearing woman.

Another thing I am thankful for is my training….I knew what needed to be done once the mistake was caught…and it had to be done quickly…her life was depending on it.  Her BG was dropping faster than she could eat.  I knew I could calculate the humalog she took to her carb:insulin ratio and get her to have enough carbs in her system to counter act the insulin.  It wasn’t easy, but we did it.  I have had to do the exact same thing in homes of many of my patients…thank goodness I had experienced this before.  Thank goodness I had a clear mind, thank goodness is all I can say.

I still cry thinking of that night, because even though death is a reality to all of us every day, it is especially a reality having to fight Type 1 diabetes…that night was magnified by 1,000.  Death was knocking on our door.  We could have been next in line.  The smallest of things can make the biggest difference.  We got too comfortable in our routine, I was busy and trusted that Kinzie could do what she did on her own…I usually hovered but knew she had done it 100 times before.  The problem with this is with routine often times you get a robotic action…you do what you do without thinking.  YOU NEED TO THINK.  YOU NEED TO BE VIGILANT.  Do not let routines cloud your judgment.  Learn from our mistake.

Teach yourself…know what to do ‘in case of’…continually seek new information.  Continually educate yourself ever single day.  Be better, get better, know better.

I think this lesson can be applied to every day life.  When you know better, you do better.  Do not think that knowing ‘enough’ or doing the minimum is good, because it isn’t.  Don’t think that someone will just come up and enlighten you when the time is right or when you need to be enlightened…that is your job.  Do not be afraid to take the initiative and ask questions and seek those answers.  You will never know enough, you will never know too much.

After a wonderful (but challenging) experience in Santa Fe at Kinzie’s dance competition I have decided to write a post about being sorry…Simply because, you shouldn’t be.

We had a little bit of a hectic weekend ‘chasing’ lows (as one ‘D’ mom put it).  Many of her dance team mates and other dancers with the studio witnessed a lot of what Kinzie has to do to stay healthy.  It was nice to see interest and people not afraid to ask questions.  She had support and was able to do a lot of teaching (which is a great thing). She much rather prefers questions and support than odd stares and whispers. She isn’t a contagious disease and doesn’t like being treated like one.

Many times we heard the comments “I am sorry you have to do that.” or “I feel so sorry for you.” While those comments are coming from a position of empathy and compassion, my response to that is “don’t be.” We do not need that and cannot benefit from those comments.  They do no one good.  Don’t feel bad for our situation, because we are doing great.  We do the best we can.

You might think that is harsh, rude or odd.  I say this simply because no words, actions or comments will ever make this go away.  There is nothing in this world at the moment that could offer a cure. It is what it is.  We deal.  It is a part of us, and if you are always told ‘sorry’ it is easier to pity yourself, allow excuses or feel different.

We are the same as anyone in the fact that we have trials too.  Our trials may be different, but they are our trials; just like your trials are yours.  We are stronger because of it.

I think it is a natural reaction to use the word ‘sorry’ when you see someone else’s struggles or witness their trials first hand…but the fact is, don’t be sorry.  You cannot control it, and we cannot change it.  We are who we are and being sorry just makes us feel like you pity us, that you feel like you need to feel bad for us and think that what we have been given sucks majorly…which it does at times, (and we do not want or need a reminder.) We are troopers! We got this!

Just be there, just support us, and just walk along side us not above or below us.  Treat us as equals; hold us to the same standard.  Don’t ever think we need a hand out, we just need friends who offer understanding.  We feel the need to raise awareness and spread the word, like that is a part of our purpose with this disease. But we do not feel the need to have a crutch.

So when you have the urge to tell someone you are ‘sorry’ they have to deal with what they have been given, keep in mind that if it cannot change them, the best thing to do is help keep positive momentum.  We don’t need reminders how rotten life can be, because we find being optimistic makes all the difference in the world. We have enough ‘sorry’ moments for ourselves and it just never gets us anywhere.   Don’t be sorry, be empathetic and aware.

We got our new replacement pump/meter in two weeks ago.  It was great news considering her old pump wasn’t responding when hitting the keypad (which, we think may be part of the problem when she swears she doses, and it doesn’t show).  We were excited to get the issue resolved and even more excited to get the new pump shipped to us while she could still use her old pump so we didn’t have to go ‘pump-less’ for a few days.  If I haven’t expressed my undying love for her pump, I will do it now.  We love it.  It is a blessing, or I guess the biggest blessing thus far in her regimen for T1D. It works for us, fits us and has given her freedom (well, I say freedom, but perhaps just a little more control in a world that you will never have true control…perhaps the illusion of control, but that works for us.)

Sunday we were cruising along…until Kinzie just started sky-rocketing out of no where (which isn’t a surprise…we do great for a week or so then all hell breaks loose and we are back to square on trying to fine-tune her basal rates, ISF and I:C).  So this wonderful combination made for a VERY long day, long night, and long week.  No matter how many site changes we made, extra injections and doses of insulin, we couldn’t keep up.  Fun, right?!? I mean, who wouldn’t want to sign up for this?  Challenges every day, surprises around every corner…paradise.  When I once said I thrived on challenges, I didn’t mean this. Monday came and went and Kinzie stayed home fighting her high BG, ketones, and even attitude (tweens, who would have thought it was like deciphering an ancient code and with one wrong action, you are toast).  Ketones are basically by-product from her body using her fat for energy when there isn’t insulin or enough insulin…it is poison, it can be deadly, and has to be monitored, flushed out with fluids and insulin. That is why many Type 1 diabetics are thinner…their body gets eaten away at times out of necessity when it doesn’t have what it needs to function.  Cannibalism…perhaps I could compare it to that.  Kinzie gets severe side/tummy cramps, gets emotional, tired, cranky, no energy as a side effect of ketones.  Ketones present…she doesn’t go to practice, go to school or exercise.  We do our couch and chug method…where she is on the couch chugging water safely in my view.

All week-long we fought ketones and high blood glucose.  So that meant staying at home, once again, missing out on school, fun, sleep, anything wonderful.  It was filled with fluids, site changes, basal increases, temp basal increases, ISF checks, constant pump downloading, monitoring, monitoring, monitoring, tummy ache, a few tears, site changes, extra injections, monitoring, having to buy extra strips since insurance finds it only necessary to cover only up to 10 strips a day. (Which with that I would like to insert a ‘suck it’ to insurance right here. When my job is to keep my daughter safe and alive they are only trying to cut costs at the expense of the health of my child.)  Kinz and I didn’t sleep much, and once we did fall asleep it seemed like it was time for another check and another dose of insulin to keep BG from going higher and ketones at bay. I am getting quite good at navigating our floors at night with extreme smoothness and speed, as if I had night vision (but I can only credit it due to repetitiveness), and getting good and holding my cool/laughter when Kinzie starts to murmur or get confused during our night checks (quite entertaining, she says the darndest things).  It was a continuous cycle…but our rewards were greatly appreciated…my daughter stayed healthy, she is alive, we avoided hospital, and mastered the skill of functioning on little to no sleep.  Weeks like this I find it hard to even relax at night.  I am always on edge at night, but nights with extreme high or extreme low is pure exhaustion, anticipation, and hell.   Join me?

It was Tuesday or Wednesday (I think) we realized that our stinking pump setting was off due to a glitch in its software, and Leap Day threw it off….date was wrong, thus giving her wrong bolus at the wrong time of the day. Which started a downward spiral into the depths of high blood glucose…or what I could relate to as hell.  Once it hit, and blood glucose results were high, it catapulted into this snowball effect, even though we caught the glitch, we had to catch up on her BG and combat that problem that occurred.  Then our lovely ‘new’ meter decided to have its own glitch…which it wouldn’t log any of Kinzie’s BG…so any time I tried to download her meter/pump to look at trends and fine-tune our settings, I was met with a blank page and about a thousand questions in my head.  I wanted to scream, cry, perhaps lash out in an all out temper tantrum!!! Why now?! Yes, I will have to admit I am not the most graceful of beings when it comes to wrenches thrown into my plan…I retalliate in the most ridiculous of ways.

Then comes Friday.  NO KETONES!!! Only to be met with constant lows…but thank goodness it was only ‘low’ not ‘low-low’ …we much rather prefer ‘low’.  So we once again monitored, monitored, monitored, stay home, ate, ate, ate, temp basal decrease, download pump info, pray (fingers kept crossed) that we could stay on top of it, and didn’t sleep…once again.  Okay, so maybe we slept from 10:30 to 12 and then again from 1:30-3 (but do I even count 30 minutes to an hour of that,as it takes me at least that to wind down and try to sleep…still being on ‘alert’ mode?)  Either way, once could say we didn’t enjoy the week.  We traveled that night to Kinzie’s dance competition…ketone free.  Once again, met with sleepless night with extra checks…only to wake up early (wishing I didn’t even try to sleep since getting just a taste of sleep makes it harder for me…I seem more tired).  After 2 entire bottles of grape Gatorade and a temp basal decrease (as that is her preferred flavor.  A mom’s gotta do what a mom’s gotta do) we got through the night.

Saturday she did amazing. Her first check at the competition was 500!!! Which we have never met since diagnosis.  Sheer panic set in and I wanted to pull my hair out! I thought perhaps rebound high from her Gatorade. So we dose.  Kinzie skips off the bathroom…and wouldn’t you know her leotard had caught her site and pulled it away (which she had argued over and over with me, I tried to move her site to her tummy telling her that costume changes would more likely pull site off on her arm…she refused to let me move it.  MOM KNOWS BEST, case and point)…thus a high-high BG.  So glad she caught that…her 500 was corrected in less than an hour, and I was able to breathe for a moment.  Only a moment.  We were then greeted with lows…and our occasional ever-so-hated ‘low-lows’.  So our day pretty much went like this….Costume change, BG check, down a pixie stick, perform, chase with protein, BG check….wait….costume change, hair re-do, BG check, carb to bring up BG, another check, temp decreases all over the place, BG check, chased with more carbs. Literally checking her BG as she is entering the dance floor with pixie stick, Gatorade and glucagon kit on hand.  All the while she smiles, she laughs, she performs, she rocks!!! Have I mentioned how gracefully she faces this disease before?  Have I mentioned how in awe of her i am?

That night, again, met with lows, soda, and checks. We brought her BG up enough to sink into bed at 3 a.m. waking in two hours for another check…and I had one eye open the rest of the time to monitor her breathing until 8 a.m. where we greeted the morning, once again thanful for all that we are given.  Have you ever breathed in a great huge breath, and all within that one action you realize that life itself is more precious than anything in this entire world and you know that you were meant here for a greater cause? I do that everyday…knowing Kinzie is here for a much greater cause.

Last week was simply controlled chaos.  We have dealt with this long enough we know our routine for any given circumstance that we have so far faced in the whirl-wind world of Type 1 Diabetes.  So what we did wasn’t new, but it is just as tiring, if not more.  I feel like the more we are faced with weeks like this, the more tired I get.  It is hard to recuperate after a hard week, because type 1 Diabetes doesn’t rest, so i don’t get time off to refuel…I/we simply just go on and continue to do what needs to get done.  Sometimes I want to beat the crap out of Diabetes…if only I could.

This week is a new week, and so far Kinzie has made it to school, managed to be ketone free and no low-lows or high-highs.  Dare I breathe? Dare I speak of this? In fear to jinx us back into another week from hell…which oddly enough makes us absolutely adore our ‘good’ weeks, them even being riddled with not much sleep, tons of monitoring, always on alert, constant changes….the rigors of Type 1 Diabetes.  Our life with Type 1 is anything but ‘normal’…but we have been given it for a reason.  Every day I pray that we remain vigilant, ever-learning, healthy and always grateful. Until next time, be thanful for the sleep you do have, when you have it…never know when you will get it again.  Last night, I slept 5 hours, interrupted, but it counts! Hooray!

Breathing seems like a very easy action.  A natural reflex we are born with. Sometimes I have to remind myself to breathe.  Looking back on my facebook status’s I came across this post that I wrote right after we returned home from our first endocrinologist appointment…

“Relief! We LOVE our specialist!!! So reassured- on our way to figuring it out. Thanks mom for going with us and supporting Kinz. Crys, we couldn’t have gotten so much out of the appointment without your help and support! I cannot thank you guys enough! Lots to do but I do believe we have the best medical team EVER and supportive family!!! One step at a time but I feel like I can breath…sigh!”

I can remember feeling like I was being smothered, unable to take a complete breath of fresh air right after Kinzie was diagnosed.  I remember so badly wanting to be able to, but I couldn’t.  I remember struggling so bad to just let it be, but I couldn’t.  I don’t appreciate the feeling of not having control, perhaps that is why I have never felt the need for outside stimuli…control is what I thrive on.  I remember so desperately wanting control back when it was ripped from my hands and rendered me completely useless. I cannot fully describe how it felt, but as a mother, it was the worse feeling in the world.

I anticipated going to our endocrinologist appointment and frantically putting everything into place and prepping for this appointment every minute of every day.  I would not let Kinzie out of my sight, in fact, I was by her side every single second of every single day.  I couldn’t breathe and the only thing I could do was to prepare.  Only way for me to survive in those moments before our appointment I had to be the nurse. I am not sure if that is even a healthy coping skill…but it was the only one available to me at the time, it was all that I knew.  I had been able to witness tragedy from the outside, I was able to rescue (or at least try) other people as part of my job.  It was all I knew to do when I was faced with my own tragedy.

I can always tell you how I ‘think’ I would act in any given circumstance…but that is judgment based off of stability and surrounded by control.  When you have to face such loss of control, what you ‘thought’ you would do and what you ‘actually’ do are usually two different things.  Perspective and reality change that.

I remember dreading going to the endocrinologist. I was afraid of what I was going to have to face.  I knew diabetes…and knew that in order to go on I would have to accept it.

I can recall meeting our pediatric endocrinologist and diabetic nurse educator for the first time and just wanting to cry.  They got it, they understood, they allowed me to have my fears and let me know it was okay and normal. They were the providers of stability and the back-up I so desperately craved.  They were going to be our stability rod.  They were going to help, teach, love an breathe for us.  I remember listening to our physician and thinking right away what a great fit for us she was and how blessed we were to have her in our lives.  She is an amazing woman.  Our nurse is completely fabulous; I remember thinking how amazing it was to see such professionalism.  They took to us like they already knew our needs.  They took their time, they embraced us, and they instantly became a part of our family forever.  I will forever be greatly appreciative for these amazing examples in our life.  For the first time since Kinzie’s diagnosis, I remember breathing.  I remember breathing and it not hurting.  I remember breathing and not panicking.  I remember being able to take that first breath as Kinzie’s mother, not her nurse.  It felt good.

I cannot quite explain how it felt, but I live it every day.  I remember it every day.  I remember not being able to breath and wanting to crawl into a hole…feeling so lost, like I had no control anymore and failed as a mother.  I felt like I failed at my one task given to me the day I became a mother.  I couldn’t protect my child.  I had no control.

But truth be told, I have control.  I may not be able to choose to rid Kinzie of diabetes, but I can control everything around it.  I can be optimistic, I can be flexible, I can set the tone and approach it with the best of my abilities.  I can be an example for my daughter; I can show her the importance of taking care of her body.  I can give her the tools to be capable to do such a task correctly.

I want every mother who is feeling suffocated to know that they will breathe again, that they are not alone.  As a mother, we want control and to be able to fix every situation.  Remember when we are not granted certain powers, when not all choices lie within our grasps; there are always things we can do, ways to approach what we are given to create the best possible outcome.  Always know you are given circumstances because you are capable to face them and conquer them. I draw much of my strength from my daughter; she has taught me how to breathe every day.

After spending part of my afternoon on the phone with our insulin pump and meter company (okay, the majority of the afternoon and all of the baby’s nap) on the phone, I knew that I needed to write on this topic.

In less than a year and a half I have had to deal with discrimination, ignorance, delays, customer service who knows nothing about our disease, appointments, safety issues…etc.  it has become clear to me that the insurance systems, customer service reps, schools, and even diabetes supplies manufacturers are not set up for anything other than ‘run of the mill’ average needs. And we definitely do not qualify under that term in any way, shape or form.

Today I am going to dive in to insurance, and bite my tongue best I can to continually remind myself that these systems are not perfect and were set up by humans.  Once, I can remember praising how awesome insurance can be and how easy it is to use…that was before we ever had to really even use this service.  I now understand the term ‘jumping through hoops’…and it is no easy task to complete.

First run-in with insurance was upon Kinzie’s release from the hospital.  We ran to the pharmacy to fill her prescriptions…naively, we went in with a bounce in our step and a mind-set it was just filling any prescription.  I walked out of that pharmacy with a tear in my eye and tail between my legs; I was thrown to the wolves into the world of ‘insurance denial’.  A term I would rather soon forget.

Just to get ‘essential’ supplies to make us last until we went to see our endocrinologist for the first time less than 4 days away it cost $500 dollar, and insurance wouldn’t pay much of it.  Their claim was at the beginning ‘is it necessary for her condition’?  To say the least, yes, it is and was; unless of course I didn’t care if my daughter lived.  There is no way around the need for her medications and in fact, we needed even more supplies that we hadn’t even filled or heard of.  So being subject to such a huge cost I was thrown back, I knew diabetes was expensive, but this supply was to only cover half a month.  Rescued by my mom, who happened to be with me…, she paid for our first script fill. What do families with these types of surprises do when they do not have the support I do? Every day longer I am in this journey, that question has plagued me.  I wish I had a solution for that.

So we were set for our supplies until we went to our endocrinologist appointment…and with that appointment came an entirely new regimen and many more necessary scripts.  If it weren’t for the amazing medical team we were blessed to have, I am sure my insurance struggle would be even more drawn out.  Because of them, we were able to get insurance to cover their portion of our scripts/supplies.

Next major run-in (remind you, we have had several, but this one a milestone) came when we started on the insulin pump.  The insulin pump can be the best thing in the world when you are fully equipped to manage it. You can go into DKA sooner on the pump so it is essential you monitor BG, ketones and do site changes regularly.

3 months after we started the pump, our wonderful always denying insurance decided that they didn’t want to cover our pump supplies because our (then) supplier hadn’t re-upped their contract and were no longer in network. (now, insulin pump supplies cannot just be picked up anywhere.  You have to have scripts from them and get them from suppliers.  Pharmacies don’t even carry them).

Now I get the whole ‘network’ idea, but what happens when there is absolutely no durable medical equipment supplier in their entire network, in state or out-of-state???  You would have thought asking that questions was rocket science…because not one person from our insurance company could answer that question for nearly a month.  As much as I would like to be able to say we can buy those supplies out-of-pocket a month, we simply cannot.  They run several thousand of dollars on top of our other ‘regular’ diabetes supplies.

So here we are, no supplies, insurance denying to pay their portion and our hand tied.  I had to fight every day for 3.8 weeks.  Finally after talking to the ADA and superintendent of insurance for our state I was able to be assigned a case manager (which I was previously denied multiple times).  This type of struggle has pretty much become a regular part of my life.  It is what it is and I have become quite the problem solver and fighter.

After many phone calls, dropped calls, brick walls…we were able to meet with our case manager for our insurance.  4 weeks after this issue had started, we had it resolved.  Now every time I order our supplies, I automatically cringe. We have also had run-ins with our insurance when it comes to doctor appointments…including visiting our endocrinologist, which, if we don’t they won’t approve to pay for our pump supplies.  So when they complain about our visits, and yet say they will deny if we do not see our endo every three months.  Doesn’t make sense…yet another fight we have encountered numerous times.

We then continually get claims that our policy number isn’t current (which it is) at all doctor appointments, which then requires them to call our insurance carriers to verify this information (and being put on hold multiple times).  We have also addressed this issue with our insurance, but they continually ignore the problem.

I have repeatedly had to wait on hold and be transferred from customer service rep to customer service rep all within our insurance company.  And every single rep I have talked to have no experience with type 1 diabetes.  They do not know that a Type 1 needs insulin to live.  They, on many different occasions, asked if Kinzie could just take a pill.  (Oy! The complete ignorance, if only it were that easy!)  They do not know what an insulin pump is, what supplies are needed or what is even does.  Many times they ask why I don’t just use our local pharmacy.  Not once have I come in contact with any customer service representative that knew anything about this disease and it’s regular needs.  And when I am transferred multiple times in just one day for one issue I find myself telling the same story, repeating the same facts, and nearly attacking them for their complete ignorance.

I get that customer service reps are just ‘run of the mill’ average people…but we are not.  Our needs are indeed different.  I think that it is an injustice how the system works all for the name of ‘bottom dollar’ and not for the name of greater health.

Had I not had to take this journey into Type 1 I would have never had my eyes opened to this and perhaps would have continued to be ignorant and oblivious of such problems.  I would have never had the need to advocate for such a cause or even remotely begin to venture out of my comfort zone.  Insurance isn’t tailored to the needs of each prescriber, as it should be.  The customer service reps, or the people to deny claims do not even have to have the education needed to make such informed decisions. How fair is it that the fate of our daughter’s medical needs get to lie in the control of someone who is only trained to see bottom dollar?

Food for thought I suppose.  So I strongly encourage all of my faithful viewers to take into consideration the next time you vote or get to exercise your voice to look into greater causes than what you are facing now, because you never know what you will face tomorrow.  Don’t accept what isn’t just, fair or right just because it may not pertain to you today.  People who have no voice need yours; the decisions you vote for now may affect your children, or your grandchildren.  Educate yourself for what you are voting for and what the outcomes may be. Be an advocate for the future as well as the now.

“Big news from the Br**** house!!! Kinzie did her entire FSBS and injection completely on her own (yes, mom was hovering-but it is necessary)!!!! This is a HUGE accomplishment in such a short time!!!!!!!!!!”

This is a big deal only two days into this venture, and I was one proud mom.  There are many steps to take to even prepare for a FSBS and injection, and she was able to do it all on her own. I know I have said it before, but she is an absolute fighter, she doesn’t give up and will conquer any task set in front of her.

As a mother you never really prepare yourself to do any of the tasks that come with Type 1 diabetes.  You never really even thought about having your child get over 3,000 injections a year and 10 + finger sticks a day.  You never really ever entertain the thought that your daughters’ life will depend on a simple hormone or that without injections she would no longer live.  As a mother I worried about SIDS, late nights with a new baby, proper nutrition, proper education, setting a good example…but I never thought about my daughter having to fight to live, or face so many obstacles in such a young age.

My thoughts now aren’t necessarily about any thing like they were before.  It has put me in this constant mode of protection, alert, learning, flexibility, prayer, and even fight. My goals are to encompass our life with everything meaningful, as if it were our last day.  My focus as switched from ‘me and my family’ to ‘my family’…at all costs, my family first.  I would have never even for one minute think that one of the proudest moments in my life would be watching my daughter do her first FSBS, draw up insulin, and inject herself on her own.  Pretty amazing accomplishment if you ask me.

I sat in complete awe, as I have had to ‘teach’ many patients as a nurse to do their own injections…and many times it has been met with refusal and disdain.  Not my daughter, she faced it head on and was not going to let diabetes control her.  I knew from those very moments that she would continue to make great progress. (I also knew we would face many steps back, bad moments, grief, etc.  it is all part of the deal); but I knew we had this.  I knew it was possible.

In one moment, I knew it was forever.  I also knew that we could do it and that she was strong enough for this challenge.  I will not forget that moment for as long as I life, it will always be an example for me.  No matter what she is faced with, she gets it done.

The reason I wanted to share this is my friends, other diabetic mothers/parents, supporters, readers…is because we need to recognize those moments that help set a tone.  I want other people in our situation to realize that those moments will come, and they do come.  Our struggles may be hard, but when we get to witness such strength, we are forever changed.  I cannot witness what my daughter and other children do as they face Type 1 Diabetes and not be changed or see the potentials in life.

In honor of all those moments we are witnesses to,  I dedicate this post to you.  May we stop and realize that what we are given is always in conjunction with our abilities.  Recognize those moments and your abilities; through small moments we are built.

‘Nod and grin’ was my method of taking it in…he obviously didn’t understand our marriage.  We were fine…I naively made myself believe that refusing to think that anything in this world could put a strain on our marriage. I was living in the clouds, soon to come to harsh reality.

From the beginning mine and Joey’s relationship was just natural.  We have never really had to put much effort into liking each other or getting along.  Disagreements…I could literally count them on one hand.  From the beginning we have been blessed with a very easy ability to coexist peacefully and walk through any issue. So obviously our relationship was different, right?

Statistics show that it is 75% times more likely for a marriage where chronic illness is present to end in divorce. Scary to even fathom this being a possibility in my marriage; apparently they do not come across people like us, right?! As if life itself isn’t a challenge, let’s just increase the odds.  No added stress, right.

Wrong.  The fact is that chronic illnesses happen to anyone.  They happen to happy people, healthy people, strong marriages…it doesn’t discriminate.  Chronic illness can put an overwhelming strain on a marriage due to the constant needs, financial burdens, stress, lack of communication, tension, lack of sleep, juggling, sacrifices, etc.  Now, I am ever so the ‘number’ loving mother these days and I cannot help but hate the 75% thrown out there. How do I make sure to fall into the 25% category?  How do I make sure to beat the odds?

Year and a half into this journey and I can honestly say that the advice our doctor gave us was spot on.  It does strain our marriage at times, it does wear on us at times…but we constantly try to remember that advice was given to us as a preventative measure.  Some days I can honestly say that I literally forget to tell my husband I love him.  How horrible is that?  And some days I am so tired that I just want to crawl into my bed, melt in my sheets and not wake up for a good 24 hours.  Some days I don’t want to talk, explain my day, what is going on with the kids…some days I just don’t want to relive it.

Then there are other days that when he comes home from work I just melt in his arms…the comfort of him just being home is so welcoming and needed.  I love how I can de-stress around him and he just listens.  I love how he lets me have control and understands that is how I cope.  I love that he gets me and I do not have to explain.  I love how with just one look, he knows what I need, when I am on over-drive and when I need some time to breathe. I love that he loves me unconditionally, even in my ugliest moments.  I love that I love him and can still see his greatest potential, his strengths, and weakness through this all and still know that this is where we belong…that a life without him would be no life at all.  I love how he makes me stronger and better.

I figure we have 2 choices… dwell on those ‘some’ days or use what we have been given as a tool.  Challenge ourselves into having to work to make things click some days.  Challenge ourselves to put each other first no matter how tired, grumpy, stressed, worn out or confused we are.   I take that statistic as a challenge. I love my family, I love my life, I love my husband.  And frankly, he may be the only person on the face of this earth able to put up with me, and he does it so well.

Two years ago I would describe our marriage as the perfect marriage.  Now I can describe it as the perfect marriage given our circumstances.  We have a lot of room for improvement but we are trying to always put ourselves first, and work everyday on us and that is a hard thing to learn when for the previous 12 years or so we hadn’t had that exact need, we never really ‘needed’ to do that.

The odds don’t exactly point in our favor, but our faith does.  I like beating the odds, I like a challenge.  We are trying to be the opposite of the statistic.  We want our marriage to stay strong and we try to repair any cracks as they happen in fear that a weaker marriage may crumble and give way.  I am one lucky girl to have married my best friend.  No matter how funny, frumpy, tired, ugly, sad I feel he looks at me like I am the most amazing woman in the world.

I guess what inspired me to write this is because those numbers are scary, those facts are real.  But we are real too.  We are prepared to face a battle and are fully committed to it.  I want to give people the advice that was given to us…to remember to put each other first as often as possible and never on just on the back-burner.

Living in a family with a chronic illness has so many challenges, but it also has opportunities to grow, learn and harvest skills and knowledge that you never knew you had in you.  Team work, well, it works.  A marriage needs just as much nurture as everyone else that any illness touches.  Just because the odds are against you doesn’t mean you should just give way and join the majority.  I can fully see how many marriages crumble under strain, but I get how many relationships flourish when given the proper environment to grow.  I would much rather be a gardener and watch things grow than a fire starter and allow things to crumble.

I cannot do this alone, and I know that is why Joey was brought to me…someone who brings out the fight in me, the best in me and continually encourages me to keep going.  It is possible to get through anything…it just takes a lot of work.  When you are blessed with a great marriage and are thrown a curve ball that imprints negativity more than you think you can handle or more than you are use to, then you fight.  You fight until you cannot fight anymore. You fight until you win. Diabetes won’t claim us as victims, we won’t allow it.

I have numbers coming out of my ears.  Just call me ‘number mom!’  If you need a number, I probably have 3!  Life is a bunch of numbers to me; I see it in everything, perhaps because we live off numbers, perhaps because it is numbers I have to pay attention to.

6.4, Kinzie’s last A1c, 55 our last BG. Numbers 3, 9, 2, 11…ages of my kids.  Number 2 and 9 my age put together.  4, how many children I have.  36, the amount of carbs consumed by Kinzie tonight.  1-unit left on board before bed.  80-120 our BG goal range.  9, 12, 2, 4, 6….when I got up to check Kinzie last night due to nasty BG that wouldn’t correct. 1,000 times I yawned today.  2 bathroom breaks I got. 6 times we checked for ketones. 0.8 was our ketones from such a nasty night. 1 more absence.

100 dollars for one small vial of insulin, 3 vials we use monthly.  4 boxes cartridges at 700+ dollars apiece and 4 boxes of infusion sets at 300+ dollars a month, then add 300 + test strips 100 bucks a bottle multiplied by 4 per month.  Then add 1 box swabs, 4 (give or take depending on illness) boxes ketone strips 175 dollars each.  4 Glucagon kits we own. $100 per kit.  1 box lancets too. 30+ juice boxes drank this month to help correct low.   How many times do we get paid this month?

3 times I have been to the pharmacy this month.  3 times I talked to pharmacist this month. 1 partial fill on a prescription this month. 3 days we have to wait to get rest.  4 (yes, sadly) showers I had last week. 10 loads of laundry weekly.  1 pump replacement on it’s way.  17 diapers changed today.  2 babies had baths.  1 dog shedding like crazy, million hairs all around. 2 times I swept the floors, 10 times they were messy by the end of the day.  72 the thermostat is set at. 30 times I have shared my blog, video, fundraising in just 2 days.  2350 amount raised so far.  16,000 more to go. 30 times I was in tears by everyone’s thoughtfulness. 40 times per day I worry about Kinzie’s BG. 40 times a day I am sad my focus has to shift.

1 in 10; chance of my other non-diabetic children getting type 1 by age of 50.  7…days of the week, 24 hours in the day. 24/7 amount of hours I spend as a type 1 diabetic mother, 24/7 number of hours/days I pray for a cure.  24, number of hours a day I pray Kinzie is safe.  24 hours a day I pray my other children stay healthy.  Sometimes I feel like I need more hours than what is allotted.  09-22-10 Date my life forever changed.  6-8 months we wait to welcome a diabetic alert dog to our family, what a blessing, can’t wait to breathe!  100+ number of people who love my daughter and are supporting our cause.  1:7 our insulin to carb ratio at supper. 5:30 time we need to eat in order to let insulin on board reach 0 so Kinzie can get to bed on time. 5:30 time husband comes home from work.  4 times a week Kinzie dances. 1 time a week Jared goes to hip-hop and scouts.  3^rd grade, for Jared. 5^th grade for Kinzie.  3540 the school nurse’s number. 10,100 times I have watched an episode of Strawberry Shortcake, perhaps in one week.

2 number of times we downloaded pump information since Sunday, 4 number of times I looked at her graphs, trends and settings. 2 adjustments I had to make. 8:00 time babies go to bed. 2 weeks since Jared had his surgery.  8 weeks until we go to his follow-up. Then go back 3 weeks after for Kinzie’s endo apptointment. 2 ½ hours the drive to the specialist.  Every 3 months we go.  ½ c per serving of cereal.  3 strawberries Chloe smashed on the floor. 30 times I have to remember to breathe when doing homework for Jared (frustration and focus hits him hard during those times).  30 times I am reminded what a blessing he is. 6 oz per bottle for Mason.  2-3 days between infusion changes.  16 strips we went through today thus far.  170 BG before bed. 12-time I set my alarm to get up for first night check.  Until I die, the number of nights we will wake up for checks.  2 number of hours Mason left.  7 times Chloe put a crown on my head and told me I was a princess today. 6 laughs from Mason.

4-11-85 hubbs and my birthdates mixed…because frankly, my numbers start to jumble at the end of the day.

Until I die, number of days Kinzie will have Diabetes.  Until I die, number of days I will fight for my kids and love my kids.  Until I die, number of times I will be an advocate for Diabetes. 1 billion the times you will hear the word ‘diabetes’ out of my mouth.  1 billion times I will not apologize for talking about Diabetes.  Forever the number of days I will have my family.  Forever the number of days I can look forward to. Countless numbers of times today my children made me feel amazing.

1 more night to get through. 1 more prayer answered. 1 happy family.  1 more moment together. 1 more memory made.  1 more day closer to a cure. 1 more day I am thankful for. 1 God I give credit to for my blessings.

From the title of this post, I bet you are thinking handbags, shoes, hair, jewelry, diamonds, and clothes…let your imagination take you there.  Can you just picture it?  Wait, backup, stop! In this post I am talking about pumps…and do not mean heels.  I am talking about accessorizing the ‘provider of life’ our ever so loved insulin pump…Animas One Touch Ping.

provider of life...i *heart* pump

Is it possible to claim to be best friends with such a thing? Or adore it as if it were part of the family? If not, I may need some therapy after my post!   Because it is very much a cherished thing in our family…even has its own insurance policy. Size of a pager, with a tube attached to Kinzie it is continuously hooked on her 24/7…keeping her body in tip top shape (or as much as one thing could without going to pancreas school or having a brain).

It is programmed to give Kinzie her insulin based on settings that we set to match her specific needs (and those needs change pretty much daily). It alarms and beeps, tweets and chirps to let us know its stance.  We love its quirks and ‘quips, but what we love most is how it does its duty.  It encases what we deem ‘liquid of life’ more precious than that gold…insulin. I think it is quite clear the love I have for this tiny little machine.  So let’s dive deep into the meat of options that she comes with…

We have color selections of nearly any desire, ours just happens to be in pink.  Silicone skins to protect her dearly, encasing her with our love. Kinzie has one in purple.  Infusion sets, with choices once more, is it a pink, green, blue or grey day?  We change them quite frequently at least every 3 days.  She has a pack to hold her Ping so dear, attaching to the waist, one with a hook (a clip of sorts) to clip onto her belt.  So when you are hooked to a machine daily, you will appreciate your ‘accessories’ much more.  A girl needs choices, right?

I know this road all too well, and know what surprises are in store.  So what diabetes can do to me shouldn’t hold me prisoner every day.  I can’t exert my energy in portals that are only possibilities. I can only imagine what other T1D parents fear; because I know what we experience is the same. What more can it do? it has already changed our life and we can’t look back at what use to be.  So today I try to let go of the things I cannot change or prevent. What I can do is remain ever-watching and vigilant. What I can do is keep fighting.

To Diabetes:

You can hold me prisoner no more; I cannot allow you to. I am already prisoner to your needs, your actions, and deeds but will not be held prisoner from your scare tactics. You have taken enough from me, and from us. I cannot surrender the rest that I have; for fear that I could not go on.

I find myself on edge, looking and watching.  Being the detective I never wanted to be.  I pray every day for peace once more and hold my breath at every sign and signal, waiting for my world to crumble once more.

I anticipate your grasp, fearing you would once more reach mine so dear. You cannot have my other children. To surrender to you would mean I give up. Giving you that power would render me useless.  This fear I let go.

You took innocence and security with no remorse or regard.  You stole health and left chaos in your wake.  Thinking you left total destruction for your own prideful boast; we retaliate by being more than you expected.

Together we all rallied, to fight you and make it known to those around.  You are a taker, not one gift do you give.  Refusing to become less, we will strive to be more.  Coming together as a family your threats we face as one.

She took this journey with grace and dignity; never giving way to your cruel intentions.  She wins today, tomorrow and forever; because she never ever will surrender.  Surrounded with love, knowledge and support…you cannot have what is not yours.  So until there is a cure, it’s me you must fight. A mother once scorned, her children to protect.

If you would have known me 2 years ago, you would have thought that that person and the person I am now were two completely different people.  I have to be honest and admit  that life has changed me. Some for the good, some for the bad. I am a little more of a neglecting friend (not that I set out to be one, but because I get consumed by just our daily life…still trying to completely find balance).  I forget birthdays, I don’t visit with my friends as often, call or text them like I should….not because I don’t think of them or because I don’t want to. I do, I love them dearly…but life is just different.  I am greedy, the few spare minutes I get that isn’t consumed with diabetes, kids, or house I take to soak in the tub.  It’s true…me time, every day has pretty much boiled down to 15 minutes in the tub…by myself…not having to think about anything.  I have never enjoyed baths, ever.  Thought of sitting in dirty bum water just wasn’t appealing…but now it is my sanctuary!

I am a little less patient to ignorance…there isn’t an excuse to be ignorant.  And frankly, ignorant comments get under my skin at times. I have become sensitive, and dang, it is taxing to be sensitive. I am going to say (and perhaps, it is because I get bitter after hearing it so many times) that I get completely sick of people saying “Oh, she just has diabetes?”  It makes me want to scream…and possibly go on a rampage.  The ignorance! I catch myself biting my tongue not to yell at them to educate themselves before they speak.  Just diabetes? Really? How about watching your child fight every day.  How about not ever really resting.  How about every day and every minute being consumed by diabetes so you can attempt to keep your child in range trying to prevent as much damage to their body as possible…knowing that this disease damages bodies in pretty much every way.  How about fearing every morning that your child may not wake up.  How about fearing your child will pass out or become so lethargic when you aren’t around, and no one knowing how to help her.  How about dealing with ignorance on a daily basis.  How about facing discrimination and fighting for safety for your child all the time.  I could go on for so long with ‘how abouts’…but that makes me bitter.  Sometimes I just need to get that off my chest, sometimes I am bitter.

I have also gotten the “Oh I can’t do what you do…don’t know how you do it.”  Now, I am sure this type of comment is meant as positive and supportive ( I get that, but it happens quite often and I have bitter nasty feeling days).  And some days, when I let it get to me, there are times I just want to blurt out “Oh, you could. Otherwise your only other option would be letting your child die. It isn’t like I chose to do this, I do it out of necessity.”  I would like to think that every parent would do what I do, do do what I do. We do it because we are parents, we do it because we love our children.  We do it, because if we don’t, we wouldn’t have our children here. We do it because we HAVE to…and you would to.  I talk about diabetes all the time, because it is my life, it consumes me. I want to make sure people around me understand, that they get it.  I want to stop the ignorance.  Small things I do help us climb our mountains.  Being an advocate, I enlighten (or try to) all that I can.  Seriously if I could, I would spend hours everyday just stopping people to educate them (literally I get the urge in the most random moments)…that is how passionate I am about this.

Two years ago, I wouldn’t have pictured myself like this; bath loving, friend neglecting, blog writing, sensitive woman.  Funny how life and time changes so many things, right?

If you would have asked me where I thought I would be five years ago, I would have told you a completely different story than what I am telling now; but that’s okay.  I believe that everyone feels that way at one time or another.  When Kinz was diagnosed she had a period where she was grieving…angry, sad, confused, lost, denial…you name it, she was experiencing it.  Anything she once loved, she hated.  She had been dancing for 1 1/2 and loved every minute of it, and all the sudden she just didn’t want to do anything anymore.  It broke my heart…I felt like my daughter was losing her passion.  One of the toughest things as parents is letting your children quit anything they have obligated themselves to (or at least for me it is).  It was such a huge road block and I wasn’t even sure how to handle it, or what was even the answer.

Before get carried away, I need to express how we have been very fortunate to have a wonderful medical team behind us.  I could never express how truly AMAZING our endocrinologist and our nurse diabetic educator is.  They are amazing people who do an amazing job.  They are awesome!  Their guidance, support and knowledge is like no other, I do not know how we got so lucky.  I remember emailing and having a few telephone conversations with both of them about changes in Kinzie and fears I have.  Being wonderful supporters and people who get what was doing on, they both advised me to give Kinzie that control, let her decide what to hate, what to quit, what to do. They said that she will find herself again, and when she did she would find passion as well.  They assured me it was the right thing to do and I wouldn’t regret it.

Control?! Control was (okay, is) my middle name.  Control is me, it’s mine, for me.  I do not share it well.  I can admit that only because I couldn’t deny it, it is that obvious. I did a lot of soul-searching and had to come to the conclusion that they probably knew more than I did, given that this is what they do for a living, they see it everyday.  So, with a little reservation, I gave Kinzie control.  The only control she had in her life.  I gave her the control to do what she wanted, when she wanted.  Boy, that was hard.  With that control…she quit.  She quit everything.  She hated school, hated reading, hated dancing, hated church activities, hated pretty much everything.  It scared the ever-loving stuffing out of me.  I honestly thought she was going to be bitter and just close herself off, forever.

After about 4 months I saw a glimmer of my ‘old’ Kinzie back.  It was her returning as she was leveling out and learning to accept life.  She was getting healthier, blood glucose back in range, becoming a little more independent in her care, and gaining back the weight she had lost before she was diagnosed.  I saw her passion slowly returning.  Kinzie was finding herself again.  She finally said she missed everything she turned away from.  RELIEF! Life could go on, we could advance from where we were, it was possible to find normalcy. She joined in on life again.

Now about a year later, I look back and think what a pivotal moment it was for her when I gave her what little control she could have.  It made the biggest difference.  She tested limits, boundaries and control. She discovered that even if there weren’t things she could change or control, there were other things completely up to her.  Because of our wonderful medical team (I truly give them the credit) I was getting my daughter back.

Today we had a dance competition.  If you would have asked me after she was diagnosed if I thought we would be here, I would have laughed…because she was done, in that moment she was finished.  What an accomplishment today was.  She is my fighter.  She has fought to get to where she is.  She goes to dance four times a week; fights through illness, ketones, highs, lows…everything to stay caught up and carry her weight.  She refuses to let diabetes be a crutch or an excuse.  When her blood glucose is off, she refuses to just stay home.  When she misses dance she is devastated.  Her dedication just amazes me. She is a fighter, has to fight every day…and she does it so gracefully.  She doesn’t want pity, she wants to be normal.  And she is. Only difference from her and another child is she has to fight just a little harder in the sense to stay healthy and able….but she refuses to allow it to not let her participate.  How this girl fights every day and keeps a smile amazes me.

You might think this isn’t much to be proud of, but for me it is everything.  Today, Kinzie won. Today, she beat diabetes because she has refused to allow it to limit her in any way…today was proof that of that. Anything she wants to do, she does. Small victories like this continually happen, and I rejoice.  It’s the small victories that move our mountains and shape who we are.  There hasn’t been any one obstacle that has stood in her way that she hasn’t been able to tackle.  How amazing is that?!?  She is a walking billboard of hope.  She gives me great hope.

Today, I am one proud mom. Today, even for one day, we beat diabetes.  I can only hope that she continues down this path and lives with passion and fight.  A life altering condition really can bring out the best qualities in people.  I see them magnified in Kinzie more than ever.  They mature quicker, they live reality dealing with adult decisions. It changes their childhood in a sense because they have deal with what most children even are never even exposed to.  Today can simply be described as awesome, plain and simple, it was awesome.

If you haven’t ever spent time looking at service dogs, you ought to look around at all the different services available.  The first diabetic dog was placed (I think) in 2003, so it is a fairly new trend. There are dramatic improvements in safety of diabetics with D.A.D and improvements in A1C (which decreases the chances of further organ damage).  We finally may have a bit of a peace of mind thinking about the future…teenage years, driving, night time, college years. Oy! I get paralyzed with fear just thinking about it.

Dogs are trained to pick up rising and falling blood glucose, picking it up at least 30 minutes before even the meter.  They are tailor trained to fit the needs of the diabetic (type 1 or type 2) and the family.  These little furry friends are trained to alert the diabetic to the rising and falling of blood glucose (and if the diabetic doesn’t respond to alert another person in the house), trained to bring glucometer to the person, open fridge and get a juice, locate and bring glucagon kit and even call 911 if the diabetic is unresponsive and no one else around and so much more.  Can you imagine!?!?! Just another line of safety made available to diabetics (the invisible disease).

A friend of mine recently got a D.A.D and her stories she share are absolutely amazing, I cry every time I read her stories because it rings all to true to me.  Her stories inspire me and give me great hope for my daughter.  She is a successful healthy mother, woman, and wife and hasn’t let diabetes stop her.  She was the final driving force in our decision to take this gigantic step.

So until there is a cure…there is a dog! So join me my friends and let’s celebrate this next endeavor.  Pass the word along and give me ideas!  Guardian Angel Dogs is who we are matching up with.  Their organization is non-profit so it can be claimed on taxes as a gift/donation so any idea for any type of fundraiser is welcomed!  I will be sure to update on this exciting news (well, exciting for us) soon with more of the organizations information that we are working with.  This will be a completely new journey for us…and a positive one at that!

I am sure other families that deal with chronic illnesses or major life changing events struggle finding this same balance.  Knowing limits, boundaries and capabilities is difficult.  I can honestly say I feel as though making a conscious effort to know my children and them know me has been so beneficial for us all.  There are so many things I absolutely hate about type 1 diabetes but fear to dwell on them too much; there have also been so many eye opening events and so much perspective brought into my life because of it and I am not sure if I would be able to see what I see now, as important and a priority on the level I do now. Perhaps my Heavenly Father knew that diabetes would help me recognize this.

Finding that fine balance where it all can exist cohesively is rough.  Figuring out how exactly to go about making something a priority but not a defining character is quiet the task, still in progress. Remembering that something so big doesn’t define us, limit us or shadow over us is important. I do not think I have it all down; there are moments I have to be reminded of all this. Every day I try and put great effort to manage it all.  The task can feel so impossible at times, and other time it falls flawlessly in place without any real effort.  I know it is possible to redefine the balance in life and begin to get to the core of family.

Each of my children possesses unique qualities that I admire and want to harvest within them.  They amaze me every day with their capabilities and compassion.  I could name so many different qualities they all have as individuals.  Every single day I try to balance Kinzie’s health/diabetes and my children’s specific needs.  I want to make sure they always know I appreciate each of them, how they are and for what they do.  It has been quite tricky, and sometimes I wonder if it will be enough.

Kinzie is an individual, who happens to have a chronic illness.  It isn’t type 1 diabetes I see in her.  I see her grace, dedication and loyalty.  Her maturity and dependability are always there flawlessly.  She is an amazing young woman, who I know can achieve anything.  She loves her family and friends, and once a friend of Kinzie’s, you always will be.  I try to separate diabetes and Kinzie, at times it is impossible; but when the opportunity arises, I take advantage.  Diabetes doesn’t need to be her identity.  She can be mouthy, moody and stubborn, but that is Kinzie.  She stands her ground not afraid of being alone, walks away instead of engaging in battle.  Even if I get 5 minutes in the car with her, I try to focus on her. We are often up late together and I get to have one on one with her where we can exists as mother and daughter, not nurse and patient.  We talk about school, friends, goals, life…the most important thing to me is that we just talk.  She is my hero.

Jared is my rock, our families rock.  He is loving, steadfast and always encouraging.  He is quick to help carry anyone’s burden and never complains about it.  He wears his heart on his sleeve and doesn’t care who sees.  He is a great protector, always on guard.  He loves his siblings and takes the role as being a brother serious.  When Kinzie is having a rough day, Jared doesn’t leave her side, he has slept on her floor next to her bed ready to be of service and watching her diligently countless times.  He can be forgetful, distracted and easily falls off task, but his passion overrides it all.  I stand in awe of my young man, he never waivers from his stance.  He is my natural caregiver. Every chance I get I take to focus on him, from doing homework, reading to cooking…every second counts. He thrives on helping out and doing what is right. He can challenge me like no other, but melt my heart the next second.  His heart will lead him to greatness and I can already see the changes he can make in this world. He is a pure example of unconditional love.

Chloe is 2, so you can imagine her gull.  She is strong, loud and very in tune. She is smart, funny, and fearless.  Her personality is already so big that sometimes I wonder how she fits it in her tiny little body.  She is very confident and courageous, well aware of her sister’s needs.  I think it is safe to say she can be obsessive (when it comes to Mickey mouse and Repunzel).  If what we see in her is even a precursor to how she will live her life, I can only imagine the things she will tackle and accomplish.  She is my strong spirit making it known to everyone when she walks in the room.  She makes us all aware when she needs time with mom, we read books and play together all day long. She is quick to demand and faster to hug. She is my little lightening rod.

Mason is our baby, everyone’s little guy.  He is sweet loving and cuddly.  He has a laid back attitude but not afraid to demand. Always has a twinkle in his eyes. He came to this earth with great purpose, already knowing our families needs. He is the perfect match for us and makes us all better.  He connects us all together, as he came after our struggle began, making us all more appreciative of the pure joy life brings.  I cannot wait to watch him grow.

I never thought I would be where I am today. I am glad I get the special times I do with each of my children. We may have a challenge before us, but it has been possible to define ourselves without it.  I want so much more for my children and can see all their possibilities. I hope they all grow to be advocates for greater cause, push past limits and never settle for second best. I refuse to tell them they can’t, won’t or shouldn’t…instead I try to focus on can, will, and should. I don’t want simple words to stop them in their progression.

No matter the struggle you are faced with, always know that there can be balance.  The way we approach things often sets an unspoken tone.  I am not perfect, I make many mistakes. I often fall off this daunting task, but am reminded to continue on my way.  Every day has purpose and a chance to change and improve what we need to. You do not have to let your struggles or challenges define you, refuse to be the victim.

I am no expert on diabetes…and what I do know I know because of what we live on a daily basis.  I do not claim to be the know all, end all of this disease.  What I describe is in my terms, and in no way do I claim everything to be exact.  The following is the easiest way I can describe type 1 diabetes.

Much is unknown about type 1. Type 1 is an autoimmune disease…her body has attacked her insulin making cells in her pancreas.  Insulin is made in the pancreas and used to pull sugar from the blood stream.  Without insulin sugar cannot be pulled from the blood stream and used for energy.  Your body needs energy in order to function.  Type 1 diabetics are often noticeably thinner…because their body, when insulin isn’t available, will ‘eat’ their fat for energy.  The by-product of that is ketones…we hate ketones and do not want them.  Ketones is essentially poison in the body and can be deadly, leading to DKA (diabetic ketoacidosis).  Your pancreas is a very smart organ and knows how much insulin to make/release and when to do it.  Without the pancreas working you cannot live unless you take in insulin and monitor blood glucose multiple times a day and adjust your insulin needs accordingly.

Hyperglycemia is high blood ‘sugar’ glucose.  It means too much sugar not enough insulin.  It can be deadly leading to DKA (build up of ketones). High blood sugars can lead to heart disease, eye problems, amputations, kidney problems, etc.  It affects every organ and can cause great damage.

hypoglycemia is low blood ‘sugar’/glucose.  It means too little sugar and/or too much insulin.  It too, can be deadly.  In order to function, your body has to have sugar and be able to convert that sugar to energy.  Hypoglycemia can lead to seizure, fainting, death etc.

Both hypo/hyper glycemia can affect organs, thinking, sleeping, etc.  And your body’s blood sugars are affected by EVERYTHING!!! The weather, emotions, late nights, hormones, stress, etc.  Taking into account anything that can affect your blood glucose and adjusting accordingly is a magic act.

A type 1 diabetic must have insulin to live…no exceptions despite the myths going around.  If there were any way around that, trust me, we would be taking that avenue and not be spending thousands of dollars a month on supplies/medicine.  Insulin can only be taken via injection.  There is no magic pill.  The acids in your stomach will break down the insulin before you can even use it…hence the reason diabetics have to have multiple injections a day.

Our bodies have natural alga rhythms daily and it varies hour by hour and minute by minute.  Pancreas knows the alga rhythms and knows how to adjust your ever-changing insulin needs.  A type 1 doesn’t have that option.  Instead through calculations, monitoring and sometimes guess-work we find what we call the basal rate.  It is ever-changing and the basal rate varies hour by hour, but it is the baseline amount of insulin the body needs to function regularly.  It is a very important aspect of type 1 therapy.  We are ALWAYS making changes to the basal rate as the needs for the body changes for what ever reason and whatever influences are around.

Then we have to take into account our I:C ratio or insulin to carb ratio (this is how we choose to calculate Kinzie’s insulin need for food).  Sugar free means absolutely NOTHING in this house.  Carbohydrates is what counts…and we literally count every single one she consumes. She eats like every other human being SHOULD eat…a healthy balanced diet.  If she wants something sweet or something not necessairly healthy, we plan for it.  And again, through calculation, guess-work, monitoring, etc we find her unique I:C.  Every time she eats, drinks, etc we administer insulin no matter how little she eats. Not to mention fats, and how fats can interact with spikes in sugar, when to combo bolus, etc….details I will not even get into because there is so much to take into account.  You cannot simply go carb free either, because that too, will build starvation ketones. Remember, your body needs insulin to utilize the sugar in your blood stream.  Sugar essentially from the carbs you take in…if you do not eat them then you cannot cover them and do not have enough insulin to be able to do the job right.

 Over coverage or under coverage with both basal rate and I:C can lead to hypo/hyper glycemia; which can result to damage, coma, passing out, lethargy, death.  Insulin is a very controlled drug and misuse can lead to death.  That is why you should always recheck your dosing.

Diabetes doesn’t rest, go on vacation, have a schedule or is predictable.  I find it vital to do overnight checks to 1. make sure she is within her target range.  2. make sure she is alive.  3. correct highs/lows throughout the night….unnoticed low (hypoglycemia unawareness) can lead to dead in bed syndrome (we won’t go into detail).

This is just a quick synopsis of the disease as I can word it.  Later on I will probably go into detail on parts or in whole.  The disease itself is scary, and the key to being successful is by learning all that you can, monitoring frequently and working in collaboration with your health care team.  So many myths surround Diabetes…ignorance isn’t an excuse.  If you don’t understand, seek answers.  If you have a question, ask.  It isn’t offensive when we see people trying to learn or understand more about this disease.  So I leave you with my all time favorite nursing quote (not sure where I heard it or if I just made it up, can’t remember but it has been with me since nursing school)…  Knowledge is Power, Education is Key.  And may you always find a purpose to be an advocate, reach beyond your comfort zone for the greater good.

We have a three-month old, who thank goodness has been a good sleeper. We are up more with our T1D than our new baby.  He slept through the night since day 1 in the hospital.  Lucky?  I would like to call it Devine Intervention. We were blessed with a wonderful baby who knew our needs.  He may not sleep all that well during the day, so naps for mom is out of the question…but he fits our life perfectly.

For the most part, people who know us and know our life, get it.  They get that it is just a part of our life.  Somedays I know I look worse, sound worse…as does Kinzie.  Somedays it takes its toll more than others.  Diabetes doesn’t rest, so we don’t.  We just go on.  I don’t really waste time thinking about how it use to be anymore or ‘what if’ anymore, because it really is a waste of time…and I have accepted it.  But what gets me is when people look at us like we are pathetic, sad or need sympathy.  Don’t…we are fine.  We are who we are because of…be understanding, empathetic, loving, caring but don’t pity us.  We don’t need that.  Otherwise the rest of our lives, that would be what we would get. How sad is that? Just be there, learn more and spread awareness.  Part of our epic battle is the ignorance people have when it comes to this disease.

Sometimes I want to cry…but everyone has those days.  Some days are more restless than others…but everyone has those days.  Some days are more complicated and unpredictable than others…again…everyone has those days.  Our life is just a bit different.  We have to approach it differently, have different priorities, and different actions, but it is us.  We are stronger from it, better despite it and closer because of it.  As much as one can look at it as a curse, I can look at it as a blessing (finally).  Every day I wake up, I can honestly say I am thankful for that day…one more day my daughter is healthy, happy and alive.  One more day we have together.  One more day we can make memories.  One more day we can learn something.  One. More. Day.  Because life goes on, and we have to too.  Positive thinking just seems to be more of a solution to how we live our lives and what we do now will influence how Kinzie lives her life.  I don’t want to contribut to her, or any of my children in any negative way.  Chlidren live what they learn…and that rests heavily on my shoulders.

For those of you just starting this journey, know that life does go on.  A new normal (normal? if there is even ever a real normal) will form and you go on.  It doesn’t go away, but you manage, learn and progress.  A year ago I would have never thought we would be where we are now.  We have bad days, but who doesn’t?  Life doesn’t just end, it progresses no matter what you are faced with.  You decide how it goes on, you decide what to do with it. You decide…that is key.

So until next time my (one) viewer(s)…let’s be thankful for this day, because we have been blessed with one more day.  Good, bad, or neither…it is one more day, and we decide what to do with what we have been given.

I have decided to add a few posts from my facebook page that I posted while we were embarking on our journey into our new normal.  It has, in  a sense been my therapy, I was unaware how I used it as an outlet until I stopped to think about our past year and what it entailed.

Below is my first entry I made from my facebook page the day Kinzie was diagnosed.  It was September 22, 2010.  The day our lives changed.  The day I began to mourn the loss of a ‘perfectly’ healthy daughter.

“so here we are…kinzie was admitted to the hospital~mild case of DKA…she has been diagnosed with diabetes. Has been one crazy nasty day but on a good note we are on the right path, and we can get her to feeling better.  thank God for good supportive family and friends.  KINZIE IS DOING GREAT! And will only be a short stay to get her sugars and lab work back on track.  did i mention this is not fun??”

My comment was followed with 20 or so comments from friends and family.  People who stopped for a moment to share their love for my daughter.  People I will always be greatful for. People I admire.

In the early hours of the following morning, after being up all night monitoring my daughter, refusing to leave her side for even one second, I posted the following…

“I find myself sitting here in total admiration of our wonderful amazing family and friends.   My eyes seem to continue to swell with tears I have to choke back through this whole ordeal. Your thoughtfulness, visits,calls, prayers, gifts, advice and support have truly filled our hearts and strengthen our spirits which I HAVE NO WORDS FOR OTHER THAN WE ARE SO THANKFUL, OVERWHELMED AND HUMBLED BY YOUR ACTIONS.”

To this day, I get chocked up reading this. It is true. We were surrounded by family, friends and loved ones.  We had countless visits.  Kinzie’s room was flooded with gifts, visitors and well wishes. No one had to ask these people to visit us, think about us or pray for us.  They just did.  They were amazing.  They were our light when we were at the bottom of a tunnel trying to navigate through the unknown.  We love them.