Tag Archive | parent of a type 1 diabetic child

Summer of change

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

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

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

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

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

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

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

camp awards

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

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

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

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

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

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

ELVIS ACE

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Moments of Stillness

Moments of stillness.

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

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

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

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

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

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

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

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

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

We recieved one of the most amazing calls last night…

As many of you know, we have been working VERY hard fundraising to get Kinzie a D.A.D (Diabetic Alert Dog).  Well, last night the accumulation of all the tears, fears, sweat, hard work, prayers, events…all of it came together.  I was working with my sister at her dance studio and my phone rang.  The caller ID popped up ‘Warren Retrievers’. I knew it was Dan, but being that we are 3 hours different, he was working VERY late.  I knew this call had to be something amazing, exciting…special.  My heart was in my throat and I am pretty sure I was stuttering when I answered!

Dan told me Kinzie had been matched to her D.A.D!!!! This is incredible, something we have been waiting for!!! What started out as just this mothers ‘dream’ and a daughter’s ‘hope’ has become a reality.  We will be getting our little guardian, another set of watchful eyes to help aid in caring for and protecting Kinzie.  It may not be for all people, but this is most definitely for our little family and truly an answer to one of our prayers.  When you cannot ‘fix’ something wrong…you look for your best options to aid in the situation…and her D.A.D.  is a very much-needed and welcomed in the care of Kinzie.  He will be her constant vigil companion. So thank you Dan for that wonderful call! Her D.A.D. should be coming home end of Sept-beginning of Oct…and Dan has scheduled for the care package to arrive a bit early for Kinzie’s birthday (it is small things like this that Dan and our Warren Retriever family does…without being asked, that makes a difference.)  Best. Call. Ever!

Kinzie was at home, so when I got this call, I was the only one in my family around! So I quickly sent my husband a text to let him know (couldn’t contain the excitement)!!! So my sister and I ran to the grocery store and got a little cake/brownie and wrote in frosting a heart with the word “Elvis” inside.  We had my family meet us outside for ‘dessert’ and when I handed Kinize it, she knew right away what ‘Elvis’ meant.  We wanted to be able to capture this special moment (on a whim) because we have so many wonderful family, friends, community members, supporters near and far who have help us along the way that would have loved to been here that exact moment.  You can watch our little video right HERE (Kinzie doesn’t show her emotions very easily…she doesn’t cry in front of people.  This moment threw us all off)

We don’t get to choose color/sex of the D.A.D placed with us, as they are matched up to fit our needs…but Kinzie has been praying for a black boy simply because she wanted to call him Elvis.  Well, her hard prayers paid off…Elvis will be her best friend and watch over he day and night.  We already love him! When we get pictures, we will be sure to share!

So Thank you all for your thoughts, encouragement, words, kind acts, support, prayers…thank you for loving us and supporting us.  Thank you for trying to understand what it is like in our journey into type 1.  Thank you for helping us and hoping with us.  We simply cannot put into words what this means to us.  Life Changing…it is going to be life changing.