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Waiting until Forever

So I am going to write a post that is far from diabetes. Something very special and private…and something that is hard to articulate into words. Something that is plaguing me.  Some of my deepest desires and secrets.

There are a few people who know us that know just before we found out we were pregnant with our 3rd baby we were looking into fostering/adopting children. We had a homestudy done, took classes to prepare us, did physicals, all the lovely paperwork and entire nerve wracking process. It was exciting and my husband and I have both felt very strongly that one day we would be parents to a child that biologically was not ours, it has been something we have both felt deep within our core. We just have felt this longing or maybe I would even call it a ‘knowledge’ that there is someone, somewhere out there that needs us just as our family needs them. It feels right, we know it to be true.

So back to my point…Once we had completed everything required of us, we were ‘waiting’ for the right child to foster/adopt. We got a call (actually I missed the call and got a message late by about 3 days) that there were twins needing a foster home, possibly a foster/adopt situation. They were newborn and also born with issues from the mother having an addiction to meth (and using while they were in utero). Days prior to this call we had waited for we found out I was pregnant (which was a dream come true following a vasectomy reversal). At that time we had to make the decision to accept or not accept the babies. We prayed as a family, and knew the timing wasn’t right. I knew myself, and I also knew my challenges I had previously faced after giving birth to our two older children (I get severe post-partum depression) and we thought it be too much to take on 3 infants all only 9 months (or less) apart. We knew that load might just be too much. Not a single day has gone by that I haven’t thought of those babies, or longed to hold them. Not a day goes by that I wonder if they found their forever home, or if they were happy…they would be 5 years old now. Not a day goes by that I feel like in a way I gave up on them. My desire to pursue adoption once we felt ready starting growing the moment I had to let them go before I even had a chance to know them. I can honestly say that a part of my heart feels tied to them, or the notion of them, or the hope they give me that all children will one day have a forever home.

We now have 4 children, survived a diagnosis of Type 1 Diabetes for our oldest daughter, moved homes, and have changed from the people we once were when we first started the process of fostering/adopting. I think it has been roughly 6 years since (maybe 5) and the timing feels right. We are ready, we have grown, we are closer, we have learned to face challenges, we have grieved, we have progressed, and we have changed, and learned. I would now consider myself then naïve. So I know it is all about timing and that really things that took place, took place for a reason. I know this, but our desire or need for this child (or children) we know we are supposed to have has only grown. The promptings to start the progress again hit my husband and I pretty much at the same time (it is so loud we cannot ignore it). I love being a mother more than I love watching the sun rise or set, more than reading a good book in a bubble bath, more than the color pink, or the kisses from a puppy. I love being a mother, and being a mother for me feels almost like a calling. I don’t think I am the best mother (I am full of flaws, and I am farthest from being the best mother). I never knew I was capable of actually being a good mother (sounds strange, I know…but if you only knew me growing up). I never knew I was capable of facing the things I have, capable of loving or fighting for my children with the capacity I have…I just never even dreamed this life I have possible for the old me. I never knew I had it in me until the sparks started flying after I had my first child…slowly through my children, and our unique challenges, I have been shown ways I can be everything I never knew I could.

I consider being a mother a God-given gift. I consider it a privilege and quite possibly one of my life callings or reason…I feel it deep in my soul and know that each of my children make me a better person and better mother and challenges me in ways I need to be challenged so I can grow into the person Heavenly Father wants me to be. I know this as truth. I don’t think this is my calling because I am a stellar mother or the best, but because it in cooperates a part of my truth, soul, ability, and helps me develop the areas of my inner core I never knew existed. I love being a mother, I love staying at home and having those crazy, bad, rough days just because I know without them those small moments wouldn’t mean as much as they do. I love watching my children grow, learn and progress in life. I love watching them become amazing people…who are wise beyond their years. My goal as a mother is to create a safe place forever for them, that they know love (unconditionally), and grow them into caring human beings who leave this world a better place.

The past I would say 5 months I have had increased urges or promptings to start diving back into the adoption process. I could describe this as almost an aching. I often wonder about my child out there somewhere (or children). I have sat, alone deep in thought and cried…this feeling is nearly impossible to describe when you know your heart isn’t complete…that a peart of you is out there waiting for you. Do they ache for us? How long have they been waiting? Who are they? When will we meet? Sometimes the thoughts plague me with sadness, I don’t want to miss another holiday or birthday. I don’t want another day of happiness missed with them, and I always think about the 4 siblings they have here and how much they are missing out on together. And in those moments I KNOW that I have to find (him/her). That I cannot give up.

I have two amazing adopted sisters (who made me a big sister). I think about them as I have these feelings (especially on days when the feelings become overbearing). And I think about them before me…before us…before forever. I think about days I wasn’t there, or the days my mother didn’t hold them, scary days for them, lonely days for them, happy days. I think about their laugh. I think about them before I knew them and before they knew me. I couldn’t imagine my life without them.

I have wrote a letter to our child, out there somewhere. I want them to know that I love them whole heartedly now, (it won’t make sense to some, but yes, I love them…I miss them). And that they are wanted. They are needed.

 

Dear Child,

I often catch myself wondering who you are or where you are. I wonder if you wonder about me (us). I am sad on days I think about you without us, missing out on things I know you would probably enjoy. I think about you facing anything without us…and I am sorry I am not there. My heart aches not know who you are or where you are, but one thing is for certain, I know you are out there, I can feel it. As sure as I know God is real, I know you are too.

Do you know you are needed? We feel you, we know you are there, and we know you belong here. I know I may not have had the privilege of carrying you in my womb, connecting with you while you were forming, feeling you kick, getting heartburn or preparing for your birth…I missed that. I know those things are something we will never have, but that would never lessen our bond or our love for you. I can feel it, I know it exists, and no matter how you get to us, know you are needed here, YOU belong here.

Do you know you are wanted? We have wanted you from the beginning and the fact that I do not know who you are, doesn’t change the fact that we love you. We love you right now, no matter where you are, or what you are doing. We love you…we can feel it and the feeling is only growing. We want you to know that we love you for you…and cannot wait to show you that forever isn’t long enough to love you. You are loved as part of this family. You are wanted as part of this family…and you are part of this family. No matter where you are, you are and will be a part of us. We know this as truth and feel it every day growing inside of us.

I don’t know your background, I don’t know your pain, or your triumphs. I don’t know what you have gone through or the loss you feel at times. I feel heartbroken thinking about any (and all) of this. I am sorry. I will find a way to make it up to you, we will always be here for you. We will forever be your family, and always stand by you. We will be your safety, we will guide you, we will support you, love you, and help you make good decisions. We will parent you as if I carried you in my womb, because in the end, how you got to this earth doesn’t matter.

I find myself praying for you. I pray for your strength, comfort, safety. I pray you know how special, loved, needed and wanted you are. I pray to find you. I pray that you never go through more than you can handle. I pray that you will one day know me. I pray for peace and guidance. I pray for strength and peace for myself (and my family).

I wonder who you are, where you are and how you are doing. I wonder if you are wondering these things about us. Do you feel we exist among the universe? Do you feel that gravity pull or connection out there somewhere? Do you wish for us? Are you okay? Do you wonder who we are or what we look like? Do you wonder what we like to do as a family? I wonder how old you are and how old you will be when we find you. I wonder where you are and what you are doing this very moment…and it saddens me that I do not know this. Do you need me (us)?

My heart aches thinking about missing your birthday, or you missing your (new) siblings’ birthdays. I think about the holidays and it seems almost unbearable having another one without you. I think of the days, hours going by. Milestones I miss. Milestones we miss. I wonder if you feel like we feel, do you long for the day we finally meet? Are you scared of that day?

I have to admit, I am scared. Will I find you in time? will you like us? Will we be all that you ever thought we would be? Are we enough? I am scared to fail, or scared you won’t think I am a good enough mother. Scared you won’t trust me. Scared you think I missed out on too much of your life. Most of all I am scared of never finding you.

I will promise you I may not be the best mother in the world…I have many flaws; I am quirky, funny, loving, strong, stubborn and some call me a little intimidating. I am loud. I am happy, goofy and proud. I love being a mother, and I want to be your mother. I may not be the best but I will always try my best. I do not give up, and I will never give up on you. I will work every day to help you, teach you and watch you grow into the amazing human being God intended you to be. You are worthy, amazing and full of so much potential. You are a gift. You are special. You are precious. I am telling you all the things I tell my children I have now, because I want you to know I think of you even now.

You have amazing siblings here who are pretty cool. They are strong and fearless. They love to love, they love to have fun. They love learning, love animals, love outdoors. They love each other, they love you. They will make every day an adventure, they always do.

You have an amazing dad just waiting. He is funny, smart, loyal and gentle. He is a great provider. He leads us with his heart, and often wears his heart on his sleeve. He is quick to forgive, quick to love and quick to say he is sorry. He is kind, loving and fun to be around. He is full of energy and life and loves his family with his entire being. He is a great protector.

We cannot wait until we find you and start our journey with you. We know there will be ups and downs, challenges and triumphs. We know the transition won’t be easy for you, but will be there for you no matter what. Whatever challenges lie ahead, know that we are waiting for you, even if it means waiting forever.

Love,

Your forever Mom

top 10 things diabetes has taught me as a D momma

In honor of National Diabetes Awareness month, I decided to write my blog on the top 10 things I have learned as a parent to a child who has type 1 diabetes.  It is easy to paint a picture of despair, it is easy to hold on to the negative moments especially in a time of uproar or complete chaos during a challenging trial/time.

Here is the kicker…it isn’t ALL bad.  It isn’t all sucky. It becomes part of our routine and with that it becomes part of our daily actions that happen without even thinking about what it is that we really are doing. It becomes second nature, but we are constantly on watch. With our greatest challenges, comes our greatest blessings IF we slow down enough and open our hearts enough to catch it.

Top 10 things I have learned from Diabetes as a mother…

1. Timing matters

It really does! Timing really is essential in the management of diabetes in more ways than one.  Timing of insulin injections, timing of basal dosages delivered, timing of your last check, timing of the carbs you consume AFTER you dose for them in order to prevent a spike.  Timing in activity, learning, advancing. Timing in alerts from our dog before a crash.  Timing in good deeds, and timing in our actions towards diabetes around Kinzie.  Timing is important, and you have to always be aware of timing…every single moment of every single day.  IT IS ESSENTIAL in being successful.

2. Count your blessings

Count them every single day.  Count your blessing ESPECIALLY on the days you do not even have the energy to acknowledge them! It is completely necessary to keep in your mind the blessings you are surrounded by because this disease is TIRING, heart breaking, devastating, FOREVER, challenging, never stopping, always changing FRUSTRATING, exhausting! It can wear on you and it can get the better half of you when you get lost in the moment.  So count your blessings no matter how small you may think those blessings are.  They will have an ever-lasting effect on you…and in the moments you need it, they will always be there to remind you that not all is lost.

3. It isn’t a curse

It isn’t! This isn’t because you suck or you are being punished.  THIS IS NOT A PUNISHMENT! This is merely a test, a trial, a temporary thing for this life.  I often think about the quote that goes roughly like ‘God gave his biggest challenges to his strongest warriors.’ And boy ain’t that the truth?! I don’t know a single T1D or T1D parent that wasn’t a passionate fighter.  If ever you look into a small community of people with something similar I think you could easily pick out certain traits (for the most part) in the community across the board for T1D.  We are strong, resilient and inventive.  We problem solve, we go with the flow, we stay calm, we pray daily, we learn.  It isn’t a curse…you can see we really do gain a great amount by living a life connected in one way or another to t1D. If you face this as a trial, not a curse…there is always room for victory! This isn’t a curse, you did nothing wrong for your child to be diagnosed with T1D…it isn’t a punishment for you or for those with T1D.  I cannot stress enough how vital it is to have the perspective that this is not a curse, it is a trial waiting to be tackled.  Waiting to be accomplished.  United by one common trait, T1D people are pretty amazing.

4. It could be worse

It could! It could be better.  BUT it really could be worse! And I don’t want to tempt fate saying we got dealt the WORSE hand ever.  We still live life, nothing stops us, and we still can see growth, change and blessings come our way because of this disease.  It isn’t easy, but it could be worse.  It never ends, but I am sure…it could be worse.  And just when I think it is WORSE…I remind myself, no, it really could be worse.  Be thankful for the trials you face and the blessings that come with it, because at the end of every single day…it really could be worse.  Some how along the way, it is never too much and we find a way to tackle whatever is thrown on our plate…reaching near breaking point and shattered, but not bad enough to finish us off.  It could be worse.

5. Strength in numbers

You can look at this in more ways than one.  Numbers as in information…BG readings, A1cs, ketones…the more information I have the more strength I have to combat it. The more detail I have in front of me the more I can factor in to the equation in order to have the power necessary to face this beast and win.

Strength in numbers is also important in the company you keep.  When you cannot carry on…somewhere someone on your side will… and they will carry you until your feet are sturdy upon the ground.  Strength in numbers helps work through those unfamiliar moments as you tread unfamiliar territory; knowing you are not ALONE.  Strength in numbers as you watch your child grow, knowing they too need freedom so you draw on strength in numbers to create an environment set up for her success and safety.

6. Celebrate the small stuff

Small stuff suddenly seem so much bigger, more important.  Small stuff seems pretty important in every single way.  Celebrate the perfect night, time together, another year living healthy with T1D.  Celebrate educating others, spreading awareness; even if it was reaching ONE person.  Celebrate the independent siblings gain as they too grow up too quickly instead of mourning what we perceive as ‘normal’.  Celebrate the life you were given because you were deemed ‘fit’ enough to face it.  Celebrate the moments diabetes has made you slow down enough to celebrate. Celebrate the moments that take your breath away, make you laugh, make you cry because you are aware enough in the moment to notice them.  Don’t forget to celebrate when you are in a constant state of vigilance and fight.  It is okay to be happy and celebrate…that is what life is all about.

7. Everything really does happen for a reason

No need to say more.  I truly believe that everything in my life has happened for a reason.  The good, bad, ugly, sad…everything! I believe that certain steps in my life played out for this one purpose…my talents as a great student, thirst for knowledge, problem solving skills and career as a nurse all came before diabetes because those talents harvested at that time in  my life were to be able to be in place for THIS moment in my life.  My talents were going to be greatly needed at home.  The order in which those things happened was for a reason, to help set us up for success and have a leg to stand on when everything seems too challenging.

8. Just because it is hard, doesn’t mean it is impossible

Nothing is impossible.  NOTHING.  Nothing about T1D is easy. NOTHING.  I was witness to my daughter having the worst night of her (my) life, nearly losing her, push on in order to prove to the world (and herself) that diabetes will never dictate what she can and will do in life.  Nothing is impossible…we just go about EVERYTHING differently.  That simple day in March taught me probably more than I ever would have known about impossible things in my entire lifetime.  Perhaps that is why we were faced with such a tragedy.  Perhaps not.  Not matter what you face, how rough it gets, how many times you get knocked down…nothing is impossible.  If you are determined, if you are willing, if you push past your fears…nothing will ever be impossible in this world.  I simply look at my children and know this to be true.

9. Always continue learning and evolving

Do not become stagnant in what you know about this disease.  Evolve, learn, grow and dedicate a good portion of your time to be able to teach your child this.  It is important to not get set in your ways. I can honestly say the more set in your ways and the less you actually actively seek more knowledge the more ignorant you will remain.  Every parent of a t1D child has a responsibility to set their child up for success in this world…success in life choices, health, career, human being qualities.  It is hands down, the number one thing I cannot stress enough.  Never be stagnant in your willingness to learn more or to seek information.  Information will not just land on your lap.  You child will watch how you tackle this disease; will watch how much you seek knowledge and active practice what you preach.  Set them up for success.  Knowledge is power.

10. Time is precious

So make it count.  Do not take for granted any single second, because you never know when fate will be tempted or when your job here on this earth is complete.  You are not the keeper of time or the one who decides when your time is up.  When you are in a constant state of motion, which is where diabetes can tend to keep you, sometimes you forget that time is passing you by.  Sometimes you forget there is a bigger picture and better purpose.  Time is so precious.  Your kids will only be this age once; you can never have a redo.  You never get to pause.  Make time count.  Teach your child to be able to make time count.  Watching your child struggle with the entire grief process, this perhaps might be the hardest thing to do…but when they see that clear picture, it is worth it.  Time is all we have until it is gone.  Don’t regret yesterday, forgetting today already trying to change tomorrow.

So what are your top 10 that you have learned from diabetes? What are your top 10 you have learned in your life if you do not face t1D? Remember it is never too late to start making that list and to start appreciating the blessings that encircle such a huge trial in our daily lives.  Diabetes shouldn’t ever be allowed to define your life.  Shape it to whatever it is you want it to be, you won’t be successful every day, you will have set backs…but keeping that positive motion forward you will find yourself looking forward to the future with purpose and strength.

Summer of change

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

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

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

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

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

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

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

camp awards

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

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

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

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

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

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

ELVIS ACE

Balance?

Balance

Balance seems to be so over-rated.  Does anyone ever truly find balance that lasts?  Balance is like a fine juggling act with flaming torches and sharp samurai swords when it comes to living a life with type 1 diabetes…impossible? No, but very, very,  very difficult! Yet, unlike juggling, you don’t sign up for this Diabetes ‘act’.  It is thrown at you without choice, reason or rhyme; that alone makes finding balance nearly impossible…if you weren’t prepared for the journey, finding your way is a daunting task.

The past month (give or take) has been the hardest period we have ever had in trying to find ‘balance’ again.  Literally anything we once knew was completely thrown out the window.  Comfort-gone, schedules-don’t exist, sleep-what is that, safety-yes please!  I fear I have been chasing ‘balance’ forgetting what I was even looking for.

I have spent countless hours looking for our new balance. Unlimited amounts of tears, energy and focus. Yet, through it all, every single day I would turn up empty-handed and heavy-hearted.

Then it hit me! Who needs balance? It never lasts, something always throws it off and you can spend way too much time recouping from a small shake in your balancing act.  So I have decided we don’t need balance, we need swag.

I dub Diabetes swag an art form.  It is full of flexibility, ever-changing schedules, flying by the seat of your pants, great ‘guesstimating’, forever learning, always growing, vigilant, diligent, less than required sleep functioning, advocating, smiling, making jokes instead of breaking down, and always being able to scoop yourself up after being knocked down (no matter how long it takes).

I like thinking about getting my swag back rather than finding yet another level of balance in my life…YUCK! I find that looking for my diabetes swag is much easier and attainable…and to be honest, way more achievable and rational when it comes to living life with Type 1 Diabetes.

I like that.

I don’t mind saying I have ‘D’ swag…because, well, as parents of type 1 diabetic children, we do! I think we are a tribe of resilient humans wired to face difficult tasks on a daily basis without hesitation…

For example:

  • Dirty diaper changing while teaching your other child multiplication facts, while handling a low of 45 all at once.  Challenge accepted and completed!
  • Site change with one hand while feeding the baby. HOLLA!
  • Carb counting while on the phone with the endocrinologist making changes to the basal rates while cooking dinner (nothing burning and all edible). BOOM!
  • Shopping with 4 kids (1 T1D, 2 of them under 3 years of age) and a diabetic alert dog for groceries, getting everything on your list. correcting a high while catching the 1-year-old twisting out of the straps jumping from the cart while tying a shoe of the 3-year-old trying to get the 9 year olds attention long enough to help lend a hand as the T1D complains of increasing tummy pains from high and the dog ‘pawing’ your leg (not missing that alert for high) even when your hands and mind are running 100 mph.  BAM!

So I ask myself…Did I really ever lose my swag?  Did it ever leave my side post seizure in midst of our new chaos mess we like to call our life?

NO.

I still have my ‘D’ swag, and in fact, I do believe my swag meter has been jumping off the charts.  I never gave (give) up, kept (keep) going and did (do) whatever it takes to keep our home running, kids learning, sports attended, appointments checked off and T1D at bay.  I have done it even when I didn’t want to…even when it seemed (and it does still seem at many moments) like too much.

D Swag. It never leaves.  So why do I need to spend extra energy looking for something that never completely truly exists?  Because society says balance is real? Because other people look balanced?

Screw balance…I got D swag.  And any ‘balanced’ person on the face of this earth would not know what to do if they lived any ‘T1D’ life for a day (and no, I do not wish this on anyone…ever).  But balance can’t exist when really any tiny grain of sand can throw it off.  Can a grain of sand throw off ‘D’ swag? Heck no! We just roll with it!

Are things normal for us yet? No.  Have more answers come our way? No.  Any more sleep and less scary moments yet? No. But darn it, I face it all with my ‘D’ swag I was inaugurated with at diagnosis.

Why is ‘D’ swag so important? Well, because when you face tough moments daily that can literally change your child’s health and safety sometimes ‘D’ swag is all you have.  Diabetes is a mystery and often times just filled with great educated guesses…and sometimes just surviving day by day is possible only because of the talent T1D parents develop (‘D’ swag).

Maybe this is the lifeline I need. Maybe this is the epiphany I have been waiting for.  For today, this is all I need to remember to keep going.

Screw balance.

Who am I and how did I get here?

Ever wake up one day and feel completely numb, powerless and very much in a life/death struggle?

I believe I am in the midst of a battle just like that now.  I feel weak, tired, bitter, angry and powerless.  I don’t like it. I like control, I like strength, I like certainty, I like progression.  All those things I ‘like’ are absent from my life at this exact moment…it’s true.  I cannot seem to find any shard of the old ‘me’ lingering around.  She seems like such a stranger.

I read some of my old blog posts, and catch myself wondering ‘who the heck is that woman?’ I don’t even remember being so full of conviction and wonder how the heck I was so strong?

I long for that.

I exist only to exist…I am numb, tired and aching for that comfort I once felt.  Life is uncertain, life is unpredictable…and a year ago I sure didn’t expect to be where I am today.  Odd…because back then I was sure I would be some where even greater.

How crazy.

Don’t get me wrong.  I am not in this deep depression, feeling only darkness.  I am just ‘lost’…I have just lost my essence of strength for the time being, and that is completely normal, I know this.  But I do feel powerless right now.

I look around and think is this really me?  Is this how I am going to be? Worn down, tired, scared, bitter (but hopeful)?  How did I get here?

I know I navigated through many circumstances to get to this exact spot.  I also know I am meant to be in this exact spot for some reason, but it doesn’t make it any less painless.  Knowing this doesn’t make right now okay.  I can never be ‘okay’ with my right now and what we are facing.

*sigh*

deep breath.

I have a lot to be thankful for.  My husband, my kids, Elvis the most amazing D.A.D, life in general, many small blessings, good friends…there is a lot out there.  And trust me, I am beyond thankful for it…but being thankful for those small things doesn’t help the bitterness fade (just yet).

I don’t like what we are facing.  I don’t like not having answers.  I don’t like seeing my daughter struggle and her ability to even feel safe start to vanish only moments after feeling freedom from the world.  It isn’t fair.  I am complaining…It isn’t fair! I have wondered ‘why her’ so much lately it is unreal.  Really, WHY HER?  Why do we have to be facing a rare mystery? Why do we have to worry about massive crashes into hypoglycemic crisis without warning, why us?!?!  WHY can’t I take it from her?

I have talked about nights holding me prisoner in the past…multiply that by one million and you might get the idea of my fears right now.  What would I ever do without Elvis right now watching over her literally day and night??? What if he wasn’t in our home?  what if???

Why do my other children have to see this epic fight?  Why does Jared have to feel scared for his sister pretending to put on a brave front?  Why does he deserve this added pressure? Why should he feel obligated to be his sister’s keeper, that is massive responsibility for such a young boy.  Breaks my heart.

My heart is beyond shattered.  I am desperately trying to pick those pieces up but I feel like every time I gather them they fly out of my hands.  I am endlessly trying to catch each shard before it shatters into a million other pieces.  I don’t like this feeling.  I don’t like this spot.  I don’t like our choices right now.  I don’t like watching people go through this.   I don’t like not having control.  I don’t like not being able to somewhat ‘plan’.  I don’t like this one bit…I HATE it.  I hate pretending like it is all okay, because right now, it doesn’t feel okay.  I am not okay with this hand we have been given.  It feels impossible…the ultimate test of faith is watching such a struggle and even just remotely entertaining the slightest sliver of faith.

Strength, where have you gone?

Single worst moment…

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

“At least” bitterenss will fade

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

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

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

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

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

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

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

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

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

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