Archive | June 2012

Hope

I haven’t had time to update much…but today I thought I must make the time to do so.  Things have been going pretty well for the most part; nothing we haven’t dealt with before.  Summer is in full swing at our house; as is the kid’s energy.  We have been busy so far with our normal daily routines but as well as activities…as the kids didn’t want a break from them so we have continued dance and started gymnastics (and because I just love not one second to myself…we have an activity every single day and are always going or doing something.  When we are not on the go my kids act like it is terrible and they are picked on…so I count gym and dance as a blessings, it gives my ears a little rest from the whining and keeps the boredom at bay).

As far as fundraising goes…it is still going.  This past week we have recieved a handful of donations (from friends, family and a local wonderful company 7-2-11). We have been recipients of such great blessings and have been shown how our community, family and friends have this huge capacity of compassion…it really does overwhelm and amaze me.  We are inching closer to being placed with our ‘life-saving’ companion; who has us all beyond thrilled, excited and nervous.  We are nearly entering our 6th month in waiting for our D.A.D which was given as the ‘earliest’ we could be placed with a dog.  So from here on out is free game and we could potentially get a call that we have been matched with the perfect D.A.D (but we can’t rush perfection, and graciously wait as others are placed who need their D.A.D just as bad, if not more than we do).  Warren Retrievers has become like a second family to us, and a great life line of support.

Recently I was able to meet another family from WR family who lives about an hour or so away from us (a mother with a 3-year-old T1D).  I couldn’t imagine having a 3-year-old T1D…having a T1D is completely crazy to begin with but at least Kinz was 10 and at an age where I was able to reason with her, explain to her, and the perfect age where she wanted some responsibility of her T1D and doesn’t really fight it too much.  This family hasn’t met their ‘reserved’ amount and is waiting to become active on the waiting list for their diabetic alert dog; and after a lengthy conversation one night, my heart went out to this family.  I have been at the beginning of fundraising, I have been at the beginning of it all and walked in those shoes and knew I needed to reach out and help them.  So I offered for our last fundraiser to be combined and us (my family) doing all the work and once our account goal was met (which is sooooo close it hurts) the rest of our money earned on our online auction will go towards this family.  It may not be much, but it will be something.  How can I know and not do anything for them?  How can I get what they are feeling and ignore it?  I may be no one special but I think the world could change from all the ‘no one special’ people in this world doing small acts of kindness and keeping their capacity to empathize always open.  If I could I would help anyone and everyone waiting to get their child a diabetic alert dog…my heart just aches with sadness when we meet/hear about another T1D family because I know all too well the road they are walking; at the same time it is nice to be around people who get it and live it (and oddly enough I feel guilty some days being relieved when I am around those families I have been able to meet.  Perhaps the guilt comes in because I wish it were under different circumstances and wish our children didn’t have to fight so hard to live every day. ) I am afraid that is a piece of guilt I may carry for the rest of my life.

All this talk about Warren Retrievers and Guardian Angel Service Dogs brings me to this…I went to drop off a package to a dear friend who has been completely supportive through our journey to raise funds for our dog.  I went to high school with her and lost contact (to only recently see her again).  She has a great capacity to love, give, and empathizes…and I am one very lucky mother who has, once again, been surrounded by amazing examples of being a charitable person. As I was driving I decided to check the mail (I slack at checking the mail, I usually make the hubby do it).  As I sat in my car sorting through the mail I came across this envelope with writing that was familiar and a name on it that makes my heart happy.  It was from a great great (great?) okay, so I lose track of the greats…but one amazingly great-aunt.  In this envelope was a wonderful beautifully written letter;  A letter full of love and encouragement.  How did she know I have just been having ‘off’ days the past weeks and needed to hear some loving, encouraging, supportive words?  Instantly this letter had me in tears.  The love she has for us and the words she shared just hit me hard…once again, smothered in blessings. With this letter was another donation for our diabetic alert dog fund.  Thank you from the bottom of my heart, thank you for being you.  Thank you for making me want to be better. Thank you, not only for the donations, but the love you send us.  Words cannot describe what it means to me, what it means to us.

I have to say that sometimes (most of the time) it is hard for me to ask for help or even be on the receiving end of the spectrum.  It feels weird and it is certainly a hard pill to swallow.  Not that I am not grateful for it, but it is just a different feeling.  It has humbled me.  It has opened my eyes.  It has changed me beyond my own recognition.  Sad that things like having my children, becoming a nurse, my child being diagnosed with a chronic illness there is no cure for, and receiving and having to ask for help are all significant, large things…and it has taken things of that magnitude to change me.  I think it may be safe to say I am stubborn.

As we are setting up for our last *fingers crossed* fund-raiser for our diabetic alert dog I am reminded again about how blessed we are as a family and how we are in the perfect place surrounded by amazing people.  We planned to help people fundraise after we were done…later.  But it hit me one night like a ton of bricks that waiting wasn’t the answer; there are people just like us who need help too.  It’s obvious, I knew this all along…but it hit me that I couldn’t wait.  So our fundraiser will not only be to finish Kinzie’s account, but to help this wonderful 3-year-old who is beyond excited about getting herself a puppy!  What was once thought of being a small gathering of items has turned into this huge dream.  I am hoping we can accomplish our goal and make our online auction a complete success putting this family closer to paying for their wonderful life-saving dog as well.  People come across our paths at certain times, for certain reasons.  Preparing for this online auction has filled me with great hope.  Do I like asking for people to donate items? ABSOLUTELY not! I would rather eat a frog than beg for help…but here I am, and I am surviving and doing it and so far we have been supported once again and only met with love and compassion. I have gathered a handful of items already, crafting a few myself, and our auction date is set for July 16th!

Going through this again, setting up another fundraiser, has just brought this renewed sense of hope to me once again.  I love where I am at in my life, do not get me wrong…I love the clarity I feel but sometimes devoting my life to not only my children and family, but this disease, I can easily forget who I am.  It happens from time to time and I feel lost or like I am swimming in muddy water unable to see where I am going; but something happens and I find myself again but only to change and mold to fit the needs of our circumstances.  Hope.  I have a lot of hopes.

Hope can be defined as to have a confident desire.  I like that.  Sometimes I have to be reminded to remain hopeful…but when I do, it sends a surge of energy throughout me and renews my spirit.  It makes me want to fight for what I think is right, continue on and be stronger, and to continue to fight for my daughter.  I do have hope that one day she will be able to say “I once has type 1 diabetes”; If that isn’t possible than I hope for her to live a long, healthy life. I hope that my children are positively impacted from the selflessness and charity they witness and become far better, more loving, charitable, people than their father and I. I have hope that change can start by one-act of kindness.  I have hope that people walking the same path as we are and filled with joy on a daily basis and are able to hold on to hope as well. I have hope that ALL my children will live to be outstanding amazing people who make a difference in this world for the good.  I have hope that they may never have to see their children suffer and that a cure will be found before they would ever have to witness this disease taking over any other child.  I have hope that one day the ignorance surrounding type 1 diabetes will be non-existent…and I know that starts with educating continuously.  I have hope, because sometimes being hopeful is far better than the alternative.  Sometimes having hope makes all the difference in the world.

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It continues

And so it continues…

Type 1 Diabetes continues to instill fear with every chance it gets.  Since Kinzie’s ‘Steel Magnolias’ episode, she hasn’t really left me that much… unless she is with her Aunt, who learns as much as she can about Kinzie and involves herself in Kinzie’s daily care, changes, corrections, etc.; aside from a few friend play dates.  (Have I ever said what a relief it is to have a pillar standing strong for us like that in our life?)

Well, today, that moment came…and I knew it would.  That moment when I knew I would have to inhale and exhale, and just let go of those fears that dwell inside.  Her best friend called and wanted to take Kinzie swimming.  (Swimming, a harmless activity, usually safe, fun, and innocent activity…until you add hormones, type 1 diabetes and an ongoing list of changes in the past few months).

Immediately I wanted to say she couldn’t go.  Why you ask? Well, because I am scared.  I am scared that people won’t know what I know (well, people do not know what I know.  I know her best.  I can spot a change in an instant.  I have intuition when something is changing…I live, breath, eat and sleep everything T1D.  It is my job. I am good at it).  Then reality hits (or we can say the words of my sister hit me as I bounced my feelings off of her).  “At some point, some time, some place…she will need to leave again.  It will happen again; and when it does, she will be fine” (because we choose who she is around wisely and educate when we can).  We set her environment up to be as safe as possible at all times.  Before our epic episode, I felt more comfortable in the role of letting her venture out.  Before the many changes hormones have brought, I felt safer, more at ease.  Now…it is a new world.  Now, I feel like I have this and hope every one else does too.

That is diabetes sneaking in.  That is diabetes instilling fear.  That is diabetes finding a way to gain control.  Once again, I let it get the better part of me…once again I fail to recognize it before it has the upper hand.

Fair? Is it fair? I would like to think no…but then again, what is fair?  Who is ever really dealt a ‘fair’ hand?

So with one huge breath we prepped.  We packed her supply bag together, we checked her blood glucose together, we treated her low together, we got her ready for swimming together, and together we made the decision she is safe to go with her best friend and her family.  Because, in the end, this is a fantastic family who has from day 1 been there for us.  They continue to stick around and offer support, willing to learn, grow and change with us.  (A dream friend family for any T1D parent).

Tears streaming down my face (alone) I have been able to come to the conclusion that it is okay to be scared and it is okay to hate these feelings…but it is okay to let it be.  It has to be okay to continue to live without limits as long as we safely provide a secure and prepared environment.  It is okay!

This stuff never gets easier…but it does get more common, more familiar.

These small moments we overcome will prepare us for our future and help us for whatever may come our way.  These small moments that appear not to render much merit to the outside world is HUGE to us.  These small moments are huge milestones and accomplishments to us.

They came to pick her up…and of course I spent a few solid minutes reinforcing (what they already know)…because it makes me feel more at ease.  Because I think reinforcing is simply essential.  As they drove off a weight was lifted and I realized that I was able to let go of just one fear I didn’t want to face just yet.  It felt good.  And now I anticipate the hours…watch my phone, and hold on to a little prayer in my heart that all will be well…and if it isn’t well…that everyone will remember what to do and Kinzie will be safe. Life continues, even when we are not ready for it…it continues so we can be prepped.  It continues because it has to continue.

And as I type these exact words I get a text that her sugar is 53, she is out of the pool drinking a juice and eating a snack to bring it up.  Now, in the beginning I would have raced over to the pool thinking I needed to be the rescuer.  But here I sit, yes, a little bit nervous with phone at my side (no T1D parent likes lows…let alone a low when we are not around).  But I sit here…and that is a big deal.  I am not rushing out the door, I am not frazzled thinking I should be there…I sit here knowing she is in good hands.  I sit here knowing that we are blessed to have people in our life willing to go above and beyond to help keep Kinzie safe and willing to continue to learn more about type 1 and what they can do to keep her safe when I am not there.  They do this because they see what she goes through and want to make sure that she has support all around.  They do this because they were here before diabetes and refuse to leave just because diabetes tries to throw us curve balls.  They do this because they love Kinzie.

Once again, Type 1 Diabetes has made me pause…but once again, we continue on and do not let it stop us.  I keep saying it is the small steps…small steps are huge for us.

JDRF (Juvenile Research Foundation) Walk to Cure Diabetes…and GASD

Today, I am not really going to be telling you about our daily happenings.  Today, I want to focus on an upcoming event(s) that means a great deal to our family and friends and a wonderful organization that has changed our life.  It is the JDRF Walk to Cure Diabetes.  JDRF is a leading children’s research foundation for type 1 diabetes.  I am a JDRF mentor in our area for newly diagnosed families, it was my first real ‘act’ of branching out as an advocate, and it fills a part of me with great purpose.  The Walk to Cure Diabetes will be our first major event that we will be attending since diagnosis, as life (like having a baby) has held us back from previous events.

You can access our team page here.

Why walk? Because if we do not, who will? If we do not support a cure and further research, who will? If it isn’t important to us, who will make it important to them?  Diabetes doesn’t rest, so we cannot rest.  If we keep pushing forward, eventually, at some point, we will have the upper hand on diabetes…and at that point perhaps in Kinzie’s lifetime she will have the privilege of saying “I use to have diabetes”.  Wouldn’t those be the most precious words ever spoken? We walk because we have to, we need to.  We walk in honor of all Type 1 Diabetics around, for all Diabetics.  We walk for those who are lost and alone and have no one to support them through this disease.  We walk because our daughter, Kinzie, is our hero every day…and Diabetes isn’t her disease, it is our disease.  We refuse for her to face it alone.

I talk about advocating on many occasions and have found ways to be an advocate.  This happens to be one outlet.  It will also provide and opportunity for Kinzie to witness a great gathering of many people there for one purpose…HER, and all those who have type 1 diabetes.   This walk is about them, for them, and because of them.  It is fashioned out of love and hope.  I chose to do this walk with our family and asking our friends to join our team, because I want Kinzie to be surrounded by great people on the day she witnesses for the first time, the positive power diabetes can have.  I want Jared (and my babies, of course) to witness advocating for something greater than yourself and see the level this one act can bring you to.  I want this movement to fill my children’s soul and live inside them forever.  I want that drive in my family that so many families facing chronic illnesses have.  This disease doesn’t have a cure, but it will not be because we haven’t tried or supported its cause.  I want to raise awareness along with hope and love.

I urge every person who reads this post to visit our team page.  I sincerely ask that you make a donation in honor of Kinzie or someone you know who has been affected by type 1 diabetes in some shape or form…and on that day in November, Kinzie’s Krusaders (our team name) will be walking in honor of her and you or your loved one, and the monies raised (100%) will go directly to JDRFs research in type 1.  No matter the amount, $1.00 to $100 I urge everyone to give what they can (it is considered a charitable donation, and can be used on your tax forms). If/when you make a donation, please comment me on this posting with the name in which you are donating to JDRF in honor of, we would love to place that name on our team shirts we will have made for the day we walk. Please share this post and pass it along. Everyone is always looking for a good cause to be inspired by, so let this be an inspiration and know that you can make a difference.  Every dollar raised and posting shared counts…you can be a part of a great movement and carry it with you forever too.  Visit our team page Kinzie’s Krusaders and join us (you can even be a virtual walker if you cannot attend our walk) in November.  Let’s fight Type 1 Diabetes and raise awareness for our very much-loved type 1 diabetic heroes.

Another day that is coming up on my calendar is the Ride to Cure Diabetes, through JDRF, in Tuscon Az.  I have had my eyes on the Ride to Cure events…out of complete fear and negative self talk, I have yet to sign up.  It takes place on the weekend of November 15-18 this year.  The route I will be taking once I get my $100 registration fee raised, will be 42 miles, and if I am spunky I might sign up for 60 mile ride.  GASP! There, I said it!  I have a goal, and in hopes I can raise my registration fee and then in order to ride, will have to pledge to raise at minimum $2000.  I have a great friend supporting this crazy idea, as I am not in the best of shape, okay in terrible shape and haven’t put me first in a long long time…but it starts somewhere, right?  Perhaps on this journey I will start to reconnect with my old self a little bit and learn to put me as a priority once again. I feel like this is something that I absolutely have to do, like something is just pulling me to it and the only thing stopping me is my negative thoughts on how I am just not good enough and could never do it or raise the money for it. It is personal, and I cannot completely explain my need to do it and prove it to myself, but to do it in honor of my daughter and shout “Take that T1D” from the top of my lungs.  Some of you might think I am nuts, and, well, you are right.  I am completely nuts.  Once I  am able to do my registration fee, there will be no backing out.  So keep reading on as I continue to work towards this goal and get it finalized.  Hopefully this will be the year I can do my first Ride to Cure, perhaps this will be my changing moment.  So what are your thoughts? Possible? Crazy? Impractical?  I am not quite sure how to classify it other than a personal vendetta against Diabetes and all the ways it tries to limit us…and perhaps all that it has taken away from us.

Another great charity I would like to bring up is Guardian Angel Service Dogs.  It is the non-profit organization we are working with to get our Diabetic Alert Dog.  I urge people to consider giving to organizations like GASD, as they are solely created to make a huge ever-lasting positive impact on people’s lives, forever.  Passion is a driving force in their organization.  $1 can make a difference in so many people’s lives.  GASD helps Warren Retrievers provide over 300 Diabetics with diabetic alert dogs every year, (and many other service dogs).  GASD and Warren Retrievers have changed our livfe, they have given us great hope and a sense of more control in our fight against diabetes.  If every single person could give $1, countless service dogs could be paid for families in need of these amazing creatures.  One small act of kindness can forever change our life, and many other people’s lives.  Please visit GASD and make a charitable donation.  Once a donation is made, you will receive an email within 24 hours with a request to specify who you want your donation to go to, you can choose our family (Kinzie) or have Dan apply those funds to any family he sees has great need for this donation.  I also would like to take time to share on July 17th, GASD will be in the running to receive a free vehicle through Toyota’s 100 cars for good promotion.  Please visit www.carsforgood.com and place your vote for non-profits every day, and remember GASD on July 17th.  To vote, it take one simple click.  You can help GASD help deliver more dogs to families who need them, send trainers to more areas…with one vote you can make a difference to hundreds of families, you can make a difference for us.

So until our next posting my fellow faithful few, I urge to you take to a cause and help create a movement of hope and charity.  Continue to read on as I share our journey with the above mentioned events.  Life is what you make it, opportunites come and go; do not let one pass you by wishing you acted upon it.  I would like to say thanks to you all, and all that you do to make a difference in any way.  Keep on keeping on.

Endocrinologist update…*cough* and a Kinzie brag

I haven’t done an update in a week or so, so I wanted to stop and brag a bit on Kinzie and her strength.  We had our endocrinologist appointment today and everything looks spot on, another stellar A1c of 6.6 and nothing but positive feedback from our nurse and endocrinologist (insert my love for our medical team here, we couldn’t do what we do without them).  No signs of major damage, no extra tests needed at the moment, no major changes.  Which all is great news.  Especially considering our rough past 4 months.  See, hard work, sweat and tears do pay off!!! None of this so far could be or would be accomplished without Kinzie and all of her efforts, even through her terrible ‘I hate diabetes days’, her highs, her lows, her activities, and anything else she faces.  She truly is a remarkable patient if I do say so myself.  I am beyond proud of how she manages her diabetes on a day-to-day basis.  Score 1 for us!

While out-of-town for our appointment I got oober sick, so hubbs faced the Zoo alone with all 4 kids in tow and tackling the ‘D’ monster on his own.  Yes, you guessed it, this sick, worried, tired momma was nervous but had all the confidence (and admiration) in the world that hubbs could do this and would do it well…and, well, he did!  They had a low, treated it perfectly, and kept up on her checks and carb counts.  They did basal decreases on their own (canceling one to increase it further…GOLD star!).  They were even stuck at the ‘train’ stations in between parks for well over an hour, and hubbs remain vigilant and got Kinz back in one piece (even having to speak up to get her on the first ‘rescue’ shuttle back to the parking lot).  Kinz and daddy teamed together so well…and *sniff, sniff* really didn’t need me.  Score 1 for us!

I love going to our endocrinologist appointments, but always fear it at the same time…I anticipate bad news or negative changes and always pray that her body is still doing well and is in ‘good shape’ to fight this diabetes journey. Once we go, I leave with a sence of relief, my diabetes cup is refilled, and I am given a sudden burst of positive energy.  Our endocrinologist just oozes positivity.

Our nurse educator suggests I pursue a career path of becoming nurse diabetic educator (coming from our medical team, this is one of the highest compliments I could ever receive.  Those who know me know how much I value our medical team, and credit our success to them) got the nurse part down, only have CDE left to do…in a perfect world, it would be my dream.  Finding the time to put in the hours required while playing full-time pancreas, chauffeur, nanny, mommy, wife, scheduler and educator is the tricky thing (not to forget adding our wonderful D.A.D to this list soon, which will be a challenge itself too).  That would mean going back to work so I could log those hours, meaning leaving my babies and kiddos once again.  I am not sure I could do this…but a part of me wants to keep going, part of me *sometimes* misses that old successful me, and wonders if/when I will ever be able to find her again.  So when the babies get older, this is going on my ‘goal’ list.  I have always loved learning, perhaps if we could call having a passion for education a talent, I would have a real talant…but atlas, no such luck so I continue searching for my true talent (no musical inclination, no artistic eye, no candid verbage…only crooked eye and short leg to claim as my own contribution here).   😉

Needless to say, we had a decent day, with great travels and happy family memories made on our trip to our endocrinologist.  Swimming, zoo, good food, pictures…we try to make our 3 hour trip something to always look forward to and a great use of family time.

So I ran to the grocery store tonight, dad, baby, brother and sister were at home.  Dad is putting baby down so Kinzie takes it upon herself to do a BG check.  I get this call…

“Hi mom! I just checked and I am high.  I washed my hands and rechecked again, still high.”

I say “Good job, way to watch out.”

Kinzie: “So I figure, I just got done with dance, endorphins might be working so I might still trend low so I corrected with half recommended dose, ate a pickle because I am hungry, and have a bottle of water I am chugging, and didn’t tell dad because I knew I was fine and he was putting baby down.”

Me: “What do you need me for? You are simply amazing and you did everything spot on.”

score 1 for us!

*BLUSH* what a smart 11-year-old girl. She is already factoring in so many variables at such a young age, not even two years into diagnosis.  When we talk about diabetes, even on her bad days, she listens…and this proves it.  We look at her numbers, charts, graphs and spot trends to make changes together, and it is paying off.  I cannot tell you how very proud of her I am.  There is no way at her age I would have been able to do what she does…I was too darn stubborn and oblivious.

Score 4 for us, 0 for diabetes this weekend.  IN YOUR FACE T1D!