Setting the Foundation

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What is Diabetes Blog Week? For those of you who haven’t participated before, the idea of Diabetes Blog Week is that bloggers sign up to post about a set topic each day for a week. This way, readers can jump around the D-Blog Community and get a plethora of different perspective on a single topic.

“Often our health care team only sees us for about 15 minutes several times a year, and they might not have a sense of what our lives are really like. Today, let’s pretend our medical team is reading our blogs. What do you wish they could see about your and/or your loved one’s daily life with diabetes? On the other hand, what do you hope they don’t see?”

My daughter is not a number.  She is not another face in the crowd, or just one more diabetic kid.  She is the only one like her.  She is smart, and kind, and compassionate, and driven.  There are many other children out there just like her, but she is the only one that lives with her actions and the consequences of those actions.  Our doctors have given us a treatment plan for her diabetes that we follow to the best of our ability, MOST of the time.  There are times that we make adjustments as we see fit, based on external factors. There are even times when I have made adjustments based solely on my maternal instincts, which I have yet to regret.  I am not a doctor, but our doctor is not a mother either.  He has laid the foundation for a plan that will carry Olivia through life in the healthiest, most productive way possible.  We must also remember that while Olivia is the same child that she was in March of 2012 when she was diagnosed, her likes, dislikes, interests and hobbies have changed drastically  and will continue to do so in the years to come. There is absolutely no way that our doctor can spend enough time with each of his patients to give every one a completely tailored and individualized treatment plan. Honestly, that would require him moving in with us and being with us 24/7. Since that’s not going to happen, it becomes our job as parents.  We are forced to do the job of our doctors with  no previous notice, experience, or consent.  Things such as making insulin dose changes, preforming blood tests, deciphering how food in medicine are working (or not working) together in our children’s bodies, how exercise, illness and stress factor into all of these,(because Lord knows they do!) and so many other elements, become a part of our daily life with, literally,  a moments notice.  Our wonderful doctors have years of academic as well as personal experience by the time our stories cross their desks. Not to detract from the importance of these things, but nothing is more powerful, or more motivating than the love of a mother for her child.  We learn through trial and error, but we do our very best and every decision is made with our child’s best interest at the heart and soul.  If I could say anything to our doctor (how ironic that we have our check up tomorrow?) it would be THANK YOU for giving me the foundation and the confidence to keep my sweet girl happy, healthy, and productive.  Thank you for giving me the ability to make sure that Olivia and her twin sister Madison are presented with the same opportunities and can share the same experiences in life.  More than anything, THANK YOU for saving my baby’s life, and giving me the knowledge, the tools and the POWER to continue to do so on a daily basis.

With that being said, if my doctor never finds out that I feel accomplished if I actually remember to change all of the lancets once a week, we will probably all sleep just a little easier.  Choose your battles, right?

 

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Phase One: Diagnosis

394259_582731508428270_1586181899_nAbout a month before Olivia was diagnosed with Diabetes we knew something was wrong. No one drinks an entire bottle of water at once, for no apparent reason.  Especially not an eight year old little girl.  In addition, because my girls are twins, the weight loss was much more apparent.  Their weight had always been almost the same, within a few pounds of one another.  For awhile we were able to convince ourselves that these were just passing phases. It got so bad that at one point Olivia was getting up 3-5 times a night to use the bathroom.  Luckily, we did manage to escape the frequent bed wetting that is usually associated with undiagnosed Type 1 Diabetics.  What we did not escape were the mood swings.  If these mood swings are any indication of the hormonal teenage years, God help us all.  I may develop and affinity for alcohol after all.

I’m quite sure that almost every parent of a T1 child can remember the moment that their babies finger was poked for the very first time.  Most of us probably have that number burned into our brains for eternity.  Ours was 475.  475.  “Normal” is between 80 and 120.  475.  We have a problem.  As our doctor rushed from the room I reached for my phone and sent a frantic message to a Type2 family member who had tried to somewhat prepare me for this moment.  -“What does 475 mean?”  –“She has diabetes.”  Those words were going to change our lives in so many ways.

The following 24 hours were a whirlwind of phone calls, explanations, confusion, explanations that caused more confusion, tears, panic, fear, and trust that it would all be ok, somehow.  I won’t bore you with the details of our admittance into USA Medical Center in Mobile, Alabama.  That experience left us with the affirmation that some people are wonderfully kind, compassionate, caring, nurturing souls.  And some people are just… NOT.  Fortunately we encountered far more of the first.  We spent three days in the hospital and Olivia quickly regained her color and strength.  Watching her finally quench her (seemingly never ending) thirst bordered on miraculous.

The second night that we spent in the hospital Olivia only got up once to use the bathroom.  Only my fellow D-parents will understand the significance of this.  In the following days we began to build the foundation for a complete lifestyle change.  It was a change for the better, but it was still a significant change.

Diabetes has impacted our lives in many ways over the last year.  There have been negative aspects.  It’s a chronic illness.  An organ in my child’s body has ceased to function.  Olivia has to draw blood from her fingers 5-10 times a day and inject herself with lifesaving medication several times a day in order to be able to eat without her food making her sick.  She is awakened to her blood being drawn and juice being shoved down her throat at insane hours of the night/morning.  On the other hand, Diabetes has brought some positive changes into our lives as well.  We now live a much healthier and more disciplined lifestyle.  Physical activity is balanced with diet, hydration, and rest, along with 2,500 other factors that contribute to Olivia’s blood sugar number.  If we dare to get lazy with any aspect of care, and sometimes even if we don’t (always a pleasure to see a growth spurt in the middle of a good blood sugar run) Diabetes is always waiting in the wings to snatch us back in line.

We have a million and one things left to learn.  Starting the pump next month will be almost like starting from scratch, from what I understand.  Unlike the beginning of our journey with Diabetes, we will begin this one armed with the most powerful weapon known to man: Knowledge.  At this time last year we were scared parents trying to navigate our way through what was slowly becoming our new normal.  Today I feel like the pieces are starting to come together.  Maybe we are ready to face this disease head on.  Whatever the next year throws at us, we’re ready.  If we’re not, we’re fully prepared to figure it out as we go.  It’s a pretty great feeling.

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People are Good

People, as a whole,  don’t suck as bad as they can appear to at times.  I am extremely overwhelmed and humbled by the outpouring of support that has been displayed to my family via the JDRF Walk to Cure Diabetes. There have been so many touching stories associated with our quest to raise money for this great cause. So far we have raised well over $1,700.00, and we are just getting started.  It’s funny how the smallest donation can mean the most, when the source is considered.  All of the donations made mean so much to us, and we appreciate everyone who takes the time out to recognize and support the search for a cure for this damned disease, but there are a few that have really touched my heart.  College students who are working their way through school have opened their wallets in order to motivate and inspire my sweet girl.  Struggling single mothers have put their own wants and needs aside to show Olivia, and all of us, that great things happen when we all work together.  This experience has been a great one so far and I can not wait to see what it brings into our lives next.

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Finding the Diabetes Helpers…

Mr. Rogers always knows how to ease our minds. If I did not know that at this time yesterday, I do now. Our society has been overwhelmed by images and sound bites of death, destruction, and pure evil for over a week now. It has been depressing, to say the least. Last night I noticed that my Type 1 daughter was in second place in fundraising for our local JDRF Walk to Cure Diabetes. Now I know that it is NOT a competition, but if you know Olivia, it kind of is… so I posted on Facebook that she was less than $20 away from being in first place.  That is when the outpouring of love and kindness began and it has not ended yet. At that time she had about $420 in donations. The last time I looked  that number had jumped to $695 and counting.  That is amazing in itself, but the sources of the donations are even more amazing.  The donation that put her into first place was made by a single mother of three that could have used that money in other ways, but chose to help my baby.  That touched my heart in a way that words can not express.  There have been donations made by people who I know could not afford those  extra dollars.  One of my dear friends quit smoking recently and wants to donate the money she saved by not buying cigarettes.  We have received multiple donations from people we’ve never met and some that we don’t even know, thanks to the power of social media.  I am at a loss for words.  Thank you feels like a massive understatement, but THANK YOU THANK YOU THANK YOU!

Diabetes has touched our lives in many negative ways, but it’s also brought some good into our lives.  Much like the horrible events at the Boston Marathon, diabetes has forced us to “Find the helpers” and recognize the good left in the world. Even if it’s just for today, I will appreciate diabetes. I will forget (ok, do my best to forget…) all of the negative aspects of this awful disease.  Diabetes has forced us to recognize the wonderful friends and family that we are surrounded by, as well as giving them a way to show their love and support to Olivia, and to all of us.  You are all appreciated more than you could possibly know!  Thank you for believing in us and supporting us.  We love you.

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