Archive | July 2012

acceptance

I read a beautiful blog posting today about acceptance you can read all about it here.  One phrase that just sang out to me in my current whirlwind of emotions was “acceptance is the fastest way to happiness”…how true is that?  It hit me, because I feel like that is what we are doing.  Instead of fighting, we are accepting and trying to find out where we fit and what our role is, as this is our life, this will be our normal forever.  Sometimes I think I could just sit there and fight and fight and fight the inevitable…but in the end all I am doing is fighting fate; a battle that I could never win. We have come to this point as a collective whole to “just let it be” and continue on. So very well said Meri, kudos to you! Just what I needed today!

Meri (author to the blog mentioned above “our diabetic life” is a mother to 3 T1D sons and her husband is currently in a battle with cancer.  She is strong, stoic, accepting and very much an inspiring blogger.

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summer…time?

Summer is wrapping up and I have to say this may have been one of the hardest…yet most eye opening summers of my life.  Why you ask?  Perhaps it is the fact I have 4 children in tow (soon to be 12 year old not only emotional from dramatic shifts in BG but experiencing hormone rages, a  9 year old who can play me like a fiddle, a 2 year old who really likes to make sure we all know she is the boss and constantly tests boundaries, and an 8 month old who is thinking he is able to keep up with the big kids and do what they can. He doesn’t like to be confined and loved freedom or momma all the time).  Or perhaps it is the fact of our schedules’ being so stinking full all the time, never taking a break…always have something, most weeks 3+ appointments.  Maybe it is the crazy world of type 1 and my urge to continue on and fight it constantly refusing for it to over-run Kinzie’s body.  Then there is the possibility that maybe, just maybe my head is above water enough that I can now look back at our journey into type 1 and realize ‘holy cow, this is hard.  It does take its toll.’  I have realized I can’t do it all, some days I feel like a bigger failure than other days; and most days I want to conquer the world and leave my mark fighting diabetes, reaching our and winning this battle.  Whatever it is that has made this summer one of the most enlightening, most difficult summers I have ever had, I have to say on a level I needed it to be this way.

I can openly admit that I am not Super Woman…I cannot meet everyone’s needs and there is no way to survive this life (or a life with a child who has a chronic illness) without constant communication…healthy communication.  Communication with your spouse/significant other, children, medical team, friends, family, neighbors, insurance carrier, pharmacist, vet, groomer, church group, coaches…the list goes on and on. There is no way to be able to do what we need to do without communicating pretty much on every level in every setting our basic needs.  I don’t like communicating every moment…sometimes I like to shut down and keep to myself wishing I were a mind reader and things just could naturally happen.  This task has become a little easier as time progresses, not sure if I should call it easier or just plain necessary where I have no other choice.

Challenges have been thrown into our laps and some have rocked our world the past few months.  Other challenges have been a welcome event (like fundraising for our diabetic alert dog and helping those around us do the same with their D.A.D or T1D medical costs and pursuing my CDE). My kids have come to the grieving point since diagnosis (I believe it has hit full force) and they all deal with it differently (the older kids, that is).  Watching them deal with such a life changer breaks my heart almost, if not more, than the day Kinzie was diagnosed.  I can see some internal struggles, confusion, anger, resentment, jealousy seeping through at the forefront of their relationship and it terrifies me that they won’t be able to cope with these ‘adult’ like feelings in a healthy meaningful way (shoot I can’t half the time and think that this is something I have to address immediately).  They are both in counseling and have been all summer long…with some resistance, we are trying to be proactive and help them learn healthy coping skills.  I see great strides taking place and have hope that this could potentially change their outlook and the way they take their frustrations out on life.  Perhaps this is a key to help them learn that it is okay to feel any way they feel.

One thing I have never had to do the past 14 years (1 year dating 13 years married) I haven’t had to do is EVER really work on my relationship with my husband…that is, until the past 2 years…really hitting us this past 4-7 months.  I couldn’t have told you how to even start working on a relationship because I had a fairy-tale one up until our lives as we knew it completely shattered, only to fit back together in a completely different world.  Although we both as individuals really grew strong from our journey, I think we grew strong in our own ways…in order to survive.  There came a point this summer where I had to contemplate one of two things…1) how much more can I actually take before I completely break and 2) can I continue on like we are and be okay with things like they are. The answer to those questions was simple and didn’t even take much effort to dig them up because I knew them and had been contemplating them for quite some time.  I couldn’t take much more and was at my edge or even falling over the edge and I knew I couldn’t continue with things the way they were for much longer. I was near the point to divorce and remain loving supportive friends or stay together and resent my husband, who up until a year or so had been my best friend and the person I admired the most, and feel completely defeated everyday. Those were my options if change wasn’t possible.  Does it hurt when that is my reality?  Most definitely.  Was there possibly another answer?  I sure hope so.

So here we are, at another huge life changing crossroad giving it all that we possibly have.  CHANGE.  We are making strides to make changes in our relationship.  We have come to a point where we have realized that others beyond our little family have to come second…we come first.  That is hard with people needing us too…perhaps this has been one of the hardest things to realize and see.  The hard thing when you have a chronically ill child is that (for us at least) there isn’t really one thing I can pinpoint that has changed us or put a wedge in-between us.  The fact is that we ARE two completely different people than we were when we fell in love.  Our needs, wants, prayers, dreams, life have become so different in such a short period of time I am not even sure if we are able to keep up with them on our own at times. We are stronger individuals, so so so much stronger than we have ever been as individuals…fighting for your child will do that to you; but we are most definitely different as a team.  It is crazy how this happened and the only way I can describe it is by saying it has been like going to bed at night with your dream, best friend, love and waking up to a complete stranger and having to learn them all over again.  EVERYTHING has changed.  EVERYTHING is different…and unfortunately it has been our relationship that has been the brunt of all changes and has had to take the tolls from this disease being on the back burner.

Can you imagine telling your best friend, your spouse, and your other half that you do not know how to function with them?  That you don’t want to put any effort in their direction and are completely worn out and tired? The crazy thing is that we both felt the same way, experiencing different things, surviving in different ways but both desperate for change no matter what that change may be?  It isn’t easy, it isn’t fun.  I can say that the past month this has become a priority.  Is it picture perfect? No.  It is better? Oh you bet!  Is it fixed? Not by a long shot! Can it return to like it was in the beginning? Never, that world will never exist again, it doesn’t exist. Am I worried we will reach a desperate point again? With every fiber of my being. We are learning to be a team again. We are learning to communicate (which use to be so effortless for us).  We are learning to disagree (which is new, we didn’t fight; this is a new world for us).  We are learning to appreciate each other for the stance they take when it comes to our child. Do I blame diabetes? Yes.  Do I get mad and wonder why us? Every day.  Every day I wonder why us, and why, why, why, why my daughter?  Why not me? Why her? Why not just me, why my marriage?

Every ounce of my energy has went into my little family this summer…I wake up searching for positivity to place in our home and carry on.  I seek opportunity to reach out and be that difference for other people and advocate because it is what helps me keep going.  I worry about Jared, I worry about Kinzie.  I feel guilty because my focus is on the big kids lately trying to help implement positivity, appreciation, positive coping and feel like if we had normal challenges and a normal circumstance my two little ones wouldn’t be deprived of some of that time.  Our journey into type 1 has proven to be a big balancing act.  It has brought perspective into our lives and rearranged everything it has touched.  We are at the point where redefining and establishing our life has come full force and figuring out where we stand in this new world and what our roles are has been our obvious task.  We don’t get a break for this life, we don’t get a re-do…this is us, 24/7 and I think that we have done a great job with it thus far…never yet yielding to its tiring pulls, temptations, trials.  I think that alone speaks volume for the power we encompass.

So in the craziest way, I wouldn’t change this crazy, nasty, challenging summer for a thing…because with the bad often times comes the good if we continually seek it and put that energy forward.  I can’t predict the future.  I prepare myself for trials, upcoming tasks. I prepare for the worse, and know some day I may need to give my daughter a kidney or she may need other medical care.  I know I may face depression with my kids going through what they do, or even resentment for where I have to focus my energy…and that is okay.  I am willing to face any trials I am deemed worthy to face.  I am willing to because I know anything thrown my way is because I am capable of that trial at that specific time.  I can do this…and if you are in similar situations, know you can do this too.  One moment can change your entire world forever…I know that to be true.  September 22, 2010 was our one moment.  I refuse for us to use that date as victims.  We will be stronger.  We will continue to fight.  We will get through this together and leave a huge mark on the type 1 world…being diagnosed with T1D was just so we could live through it; diagnosis came our way for a reason and we can’t stand idle by.

Seatbelts…who knew?!

So things have been going well.  Busy busy between summer activities, baby who thinks he can walk and do everything everyone else is doing…bumps, bruises, crashes…ohhh the fun!, two-year old who runs the world and is bossy, easily distracted 9-year-old and 11 year old sassy pants with diabetes. We recently went to a JDRF workshop for our Walk to Cure Diabetes team.  It was a lot of fun, we touched base on research (but it wasn’t anything new, the same research I am already following).  Did you know that JDRF is one of the TOP research foundations where they put their money where they say they will?  over 80% of all funds go DIRECTLY towards research.  The other funds help pay for employees, events, overhead, etc.  That is an amazing amount, and they have a lot of amazing research opportunities going right now that look promising.  Their mission is to cure, treat, prevent…and that is by far what we need.  First, yeah, give me a cure!!! but let’s not forget to help improve treatments to prolong health and life until there is a cure…and once a cure is found we sure need to make sure that not another diagnosis will come after the cure.  Did you know that over $80 million dollars were raised last year for the Walk to Cure Diabetes?  Did you know that over half of the were raised by ‘family’ walk teams just like us?  So if you think you, being one small person, can’t make a difference, you are wrong.  Every person, every penny, every though, act, share counts!!  I do it for my daughter and all my family and friends who have been affected by diabetes in some shape, form or fashion.

On our way home from the workshop (roughly 3 hours away from home) Kinzie’s pump infusion set got caught in her seatbelt and ripped it out of her arm…the kicker is she didn’t notice.  So the entire ride home, the seatbelt was getting her basal doses and not Kinzie.  YAY!! This means risk of DKA and an immediate rise in blood glucose…BAD!!! 😦   So as we are pulling into the driveway (Kinzie unbuckling) we hear a “Uh Oh!”.  Yeah, any mother’s heart sinks when she hears that…we instantly start fishing around in our minds for what bad news may follow such a phrase.  I jerk my head in her direction bracing myself for the news….

“Mom, my seatbelt has been getting my bolus!” yells Kinzie.

How rude really, since when do seatbelts steal basal rates?  You would think that life saving device would realize in order to save Kinzie’s life she kinda needs her basal dosages too!

Me: “Ugh! test now!” so for the entire trip home she was without her basal rate, so not good!!!

Kinzie: (can’t remember the exact numbers, but it was well over 300s) “3–” “and I didn’t even know my site was ripped out mom! I didn’t feel anything!” this is what happens when you have multiple injections/insets in certain areas…you are use to the trauma in the area and less sensitive.

Me: “why!!??”

So yeah, we are just that dramatic…can’t help it, it is in our genes.  We go inside and do a correction injection via syringe to immediately start to correct this number and prevent further rise, DKA, etc.  Then we had to place another infusion set…which by now, we are pros and it only takes a few seconds.  I would like to think I could do this probably blindfolded…but that just might be my ‘superhero D-mom’ illusion kicking in.

The night went smooth, extra checks, but we were able to beautifully correct her high and keep her within range all night.  It took extra work, but it is worth it…saving kidneys one check at a time!

So in a nutshell…buckle up, it’s the law…BUT …be sure that little bugger doesn’t tangle in your tubing if you are on an insulin pump and steal your bolus doses.  Another thing to add to our checklist: seatbelt, check… infusion site still intact, check!

After I shared that cautionary tale with you, I would like to ask something of you.  please visit www.carsforgood.com and vote for Guardian Angel Service Dogs today! voting for this organization is only for today and every vote counts.  This is the organization we have used to help us raise funds to get Kinzie a D.A.D.  It will be so helpful to a well deserving organization and it will mean a lot to my little family and all the other families that work with GASD.  It takes a few seconds, you will click Guardian Angel Service Dogs and to the left is vote…once you click it will confirm you voted…and voila! you did a good deed today!!

Thanks for reading! Until next time…appreciate your seatbelt and all its quirks!