A Year After Forever: The Anniversary of My Child’s Diagnosis With Type One Diabetes

 

This very hour a year ago I was 36 weeks pregnant and getting ready to go in for a last minute doctor’s appointment. Little did we know, 15 minutes after seeing the doctor, we would leave in a head spin, on our way to Nashville with a type 1 diabetic child.  I didn’t know anything really about diabetes in that moment other than I knew I didn’t want her to have it.  I knew it was forever and little more about what that would mean for our day-to-day life with a newly turned four year old and type one.  In hindsight, I’m so glad I didn’t.  It wasn’t until an hour or so later, standing in a Hobby Lobby parking lot that I realized via a call from my pediatrician that this new life change would mean daily shots for my child.  I remember I just cried with a broken heart.

Today it has been a year since all of our lives changed, and more importantly, Eden’s life changed.  We had a baby two weeks after her diagnosis and it’s been a whirlwind.  To say it’s been the fastest year of my life is an understatement.  To say this has been the hardest year of my parenting life, couldn’t be more accurate.

Most days, diabetes is just a part of our day like brushing teething and getting dressed.  It’s always a thought, always taken into account.  Not even so much as a vitamin enters my child’s mouth without having to account for the carbs in each so that I can make sure she gets enough insulin to cover each bite.  It is an all day long process and while that sounds exhausting, and it can be, most days, it’s just our day.  Blood sugar checks and shots which were SO dreaded and difficult each meal in the beginning, we can give her in her sleep now.  When meeting with her school nurse last week, I told her to have no worries on the blood sugar checks because she would let anyone, including the school mascot, do that for her.  Often times when I come up to her to hand her something or to talk to her, she instinctually hands me a finger.  It’s funny that it’s so commonplace and also, if I’m honest, breaks my heart a little when I let the implications of that sink in.

As common as a type one life has become, there are moments where the gravity of it hits you:  an unexpected low number that makes your heart stop and the little shot dotted bottom of a four year old that has gone through a lot. When I rub her sweet skin and my hands pass over the marks of shots left behind, as a mom, a tiny piece of my heart mourns a little.

It’s taken me by surprise that this first anniversary has been so emotional for me.  I started having short moments of tears starting a few months ago.  I’ve tried to understand why the anniversary would move me like this because after all, she is perfectly fine and healthy and life has continued on.  I have figured out now that it’s because from the second she was diagnosed, I haven’t really had time to pause.  You don’t have time to.  It goes diagnosis, immediate education, immediately giving shots and care, and day after day you learn and go…learn and go.  No to mention, having a baby who has been a 24/7 baby two weeks after she was diagnosed has not helped me to catch my breath.

So now, that’s what I’m doing at this one year anniversary.  Anniversaries make you pause and reflect and in that, I’ve had a delayed emotional let down of all of the struggle I haven’t had time to feel.  In stopping, I’ve felt how much I’ve been just trying to keep my head above water for a year.  There is also intermingled a sense of accomplishment that one of the hardest years of type one is behind us.  By the grace of God, we’ve done it.  It’s a slew of emotions that sitting here in the same hour she was diagnosed a year ago has allowed me to soak in.  I’m a having a sigh.  Not fully a sigh of relief but equally a sigh of, take it all in.  It’s been a hard year.  And I can feel that.  Fully.

Still, I’m thankful.  Thankful for how it all unfolded.  Thankful that it could have been worse or been a worse diagnosis.  Thankful that it’s manageable and that insulin has been around since the 20’s making it possible for children like mine to live not just what would have maybe been a week past full onset, but a whole life.  They are so close to a cure that I am hopeful in her lifetime, that she will know what it was like to live like she did the first three years of her life.

Eden has to have a minimum of 4 shots a day:  a long acting morning insulin, breakfast, lunch, and dinner.  Then she needs shots for other things she may want to eat from everyday snacks to special occasions.  We check her blood sugar 6-8 times per day and she has tiny little dot scabs on her finger tips that look like freckles if you look close enough.  My newly turned five year old is sitting watching Sophia the First right now over 1, 460 shots and 2,880 blood sugar checks later.  She’s brave.  She’s strong.  She’s un-phased.  She’s ours.  And I’m just so thankful that she’s here and happy.  We have survived.  She has.

God does, in fact, give us more than we can handle and in that, shows us that He is enough to carry us through rather than letting us believe we are enough.  We aren’t.  We haven’t been.  But He was there in the weeks before we knew what was brewing and when we didn’t even know she needed watching through the night, He did and was there.  He will continue to be and I will have to continually rest in that and teach her the same as she wrestle with this as she ages.  It’s one of the great mysteries of God how He can intricately weave people, purposes, and trials for His people together.  I’m not sure what the next year or years will look like but I know I will have many times were I have to pause like I have done today.  Thankfully, I know that He goes before me and loves my child more than me so come what may, I can know every joy and heartache is accounted for.  We have lived that this year as a family of five.  And when we are overwhelmed and He’s given us too much, thankfully, He’s always enough.  Come what may….

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5 Things I Want People To Understand About Type 1 Diabetes

 

Now, I never want my blog to be  one where I chronicle the mundane daily details of life and I try to not post updates on just regular days and happenings.  This is definitely not a public diary, fo’ sho’.  However, since my oldest got diagnosed with Type 1 diabetes a few months ago, I know now that people know very little about Type 1 because that was me too.  After her diagnosis I sat in the doctor’s office like, “What?  Really?  Now say that again?  What in the who?  Who in the what?”.  It was several weeks and appointments of information overload.

I guess now that I have a child with diabetes, there are lots of loved ones, friends, and close acquaintances who I would LOVE for them to know just the basics.  That’s not only because I love them and that they are around my child but also because it kills a whole slew of birds with one stone to help everyone have a really basic understanding all at once.  I suppose just like people dumping ice water on their heads for ALS, everyone sort of craves awareness for whatever they are dealing with personally or within in their families.  So, here it is, my non-typical type of blog post explaining briefly the 5 things I want people to understand about Type 1 diabetes.  Why?  Because I love her and we don’t have an ice bucket challenge.  Although, my sweet little girl did light up today when she thought of a warm bucket challenge for Type 1.  She said, “Do they already have one of those?”  Oh, sweet children.

 

1. How It Works 

When you eat, your body turns your food into glucose.  Your pancreas releases insulin to make that glucose usable energy in the body.  Glucose feeds all functions of the body.  With Type 1 diabetes, the food is turned to glucose but there is not any insulin or insufficient insulin to turn that glucose into usable energy.  Therefore, the blood becomes saturated with glucose (aka the high blood sugars) because food is turning to glucose but can’t be used up by the body without insulin.  Thus, the body is starved of energy and saturated with glucose.  It’s like a gas pump and a car.  The pump may be full of gas but if it can’t pump into the car…if a transfer can’t be made to the gas tank, the car has no power and can’t run.  Such is the relationship of glucose and insulin in the body.  The gas is there but it can’t get in the tank.

2.  Why Do Diabetics Have High Blood Sugar But Also Have Blood Sugar Lows?

This confused me at first and was one of my first questions to the endocrinologist.  Why would she ever be low?  I thought the problem was high blood sugar?

A diabetic will always have high blood sugar unless brought down by insulin.  Therefore, lows are caused from TOO MUCH insulin or not enough food consumed to use up the insulin.  If insulin is there to handle the glucose but there isn’t enough glucose there, the overabundance of insulin causes low blood sugar (hypoglycemia).

Lows cause passing out, lethargy, and if really really low, seizures and even coma.  Why?  If the brain isn’t fed, it doesn’t function and as we all know, the brain controls all of your gizzards and guts.  (Keeping it light.  Keeping it full of personality, y’all.  I can’t always be serious.)

3.  How/Why Does Blood Sugar Affect Behavior?

Well, there’s the obvious reason that when you feel like total garbage, you tend to act like garbage but there is a real physiological reason for a behavior shift with a diabetic.

When blood sugar is high or low, the body is being starved of what it needs for energy to function.  This includes the brain.  When sugar is high, there is an oversaturation of glucose just floating around the body. When it’s low there is too much insulin. In both scenarios the brain doesn’t have its energy source to function properly which affects the whole she’bang including emotional and behavioral centers of the brain.  Thus, people can act really out of character because their body isn’t being provided with what it needs to function properly.

This is also the reason a diabetic becomes really hungry.  Even though they are consuming food, their body sends out an S.O.S signal because it’s not receiving energy despite of consumption.  To the body it’s essentially like you aren’t eating because you aren’t “feeding” it.  The body tells them to eat and they become very hungry, however, this exacerbates the problem because it adds to the blood sugar level because there won’t be any insulin provided to make the glucose “used up” and usable as energy.

The reason a diabetic has to pee frequently with high blood sugars is because the kidneys are working very hard to flush out the blood stream of extra glucose in the form of urine.  That is why a diabetic has high glucose in the urine.

4.  What is the difference between Type 1 And Type 2 Diabetes?

Type 1 is insulin deficient and Type 2 is insulin resistance.

Type 1 is an autoimmune disease that attacks the insulin producing part of the pancreas.  The pancreas has many crucial functions to life so only the insulin producing part of the pancreas is impaired.  You cannot give yourself Type 1 or throw yourself into the disease by sweet consumption etc.  Anyone can get Type 1.

You can take poor care of yourself and “give” yourself Type 2, however, though common, not all Type 2’s are overweight and take bad care of themselves which is the common belief of most Type 2 individuals.

5.  It’s Life Changing But Not Life Hindering

Someone with Type 1 can have children, be a hard-working actress on a set all day like Halle Berry who has Type 1, be an Olympian like some Type 1’s have been, and they can do anything like anyone else.  It can be controlled and does not shorten life expectancy etc.  Unmanaged it is serious but managed, you live a normal life.  Well, normal with several blood checks, insulin shots/pumps, constant carb counting moments a day aside.  =0)

It is a 24 hour job.  It never leaves.  It always has to be factored in.  In the beginning it is especially hard to control and it is always changing with sick days, weight gain, and physical activity.  It is a life commitment you have no choice to make.

It’s expensive.

You monitor all day and worry about the lows and become frustrated by the highs.  Still, at the end of the day, life completely goes on and it goes on normally. A new normal. There is nothing you can’t do with Type 1 except eat a whole wedding cake by yourself safely =0)  I’m glad for the moment I have lived a diabetes free life because I’ve come close to doing similar things.

There is no cure.  I wish it didn’t exist.  Sometimes it makes me sad but at the end of the day, I’m glad life goes on just managed.  I’ll take it.

 

Well, folks, there she blows!  I hope someone out there whether we know them or not understands what in the glucose diabetes is all about.  You didn’t even have to put ice water on your head for it.  You’re welcome.

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