A Day In Our Lives

Measuring issues - 1.30.14
Measuring issues – 1.30.14

11:30 PM – Check Carter’s blood, fix any lows with carbs, fix any highs with water or insulin if really needed.

11:35 PM – Set alarm for 2:00 AM to check Carter again and adjust after any corrections were made at 11:30PM, to make sure he isn’t too high or too low.

2:00AM – Check Carter’s blood, fix whatever needs to be fixed.  Set alarm now for 6:30AM to get up and make breakfast for my daughter and Carter and take her to school.

6:30AM – Check Carter’s blood again, dose him for breakfast, make sure he eats everything I have dosed him insulin for.  If all carbs aren’t consumed, offer a yogurt to cover the insulin on board.

9:00 AM – Check Carter’s blood again, making sure his breakfast insulin isn’t doing something different today, making him dip too low.

11:00 AM – Check Carter’s blood before getting in the car to go and pick up my daughter from school.  Making sure he isn’t too high or too low.  If he’s too high, give him water since when we arrive home he will be dosed for lunch.  If he’s too low, give him a snack and water in the car.

12:15 PM – Dose Carter for lunch, again make sure that he eats all the carbs I have dosed him for.  If he refuses to finish all the carbs on his plate, offer milk.

12:45 PM – Put Carter down for a nap.

1:30 PM – Go upstairs and peek in on Carter, make sure he is OK.  Do a visual assessment to make sure he hasn’t dipped too low (make sure his breathing isn’t too shallow).

2:30 PM – Carter wakes up, check his blood to see where he is at, make any necessary adjustments.

3:00 PM – Take kids to the park, pack up all of Carter’s gear (Blood testing kit, snacks, water, glucagon, etc.)

4:00 PM – Check Carter’s blood as we are leaving the park, adjust what needs to be adjusted.

6:00 PM – Check Carter’s blood before dinner, dose him and make sure all carbs are consumed.

7:00 PM – Bath time

8:00 PM – Check Carter’s blood for bedtime, make any adjustments for bed, if he’s under 150 give him a 10g carb snack and put him to bed.  If he’s over 150, just put him to bed.  If he’s over 250, give him some insulin correction and put him to bed.

10:00 PM – Check Carter’s blood to make sure he hasn’t dipped or sky rocketed in his first few hours of sleep.  Make any necessary adjustments, anything under 150 gets carb corrections, anything above 200 gets water correction.

11:30 PM – One final check before I go to bed, then set my alarm for 2:00 AM to do it all again.

This is what a typical day of diabetes management looks like in my home.  This is a mapped out day with absolutely zero complications or surprises.  If there are highs or lows it can set our day back an hour to and hour and a half do to the recover time it takes for Carter to feel better.

Diabetes is an invasive machine that continually throws wrenches into your day, and can create utter chaos in a matter of seconds.  Being prepared is an understatement, being the caregiver to a diabetic, one needs to be prepared for every scenario at every moment of everyday.  We need to constantly be at the ready, be it to fix a low blood sugar, or a high blood sugar.

Sorrow

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www.cafepress.com.au

Sorrow, by definition, is an interesting thing.  Sorrow signifies a feeling of sadness or grief by the loss of something or someone.  It stands to reason that a parent would experience sorrow, at the thought of losing a piece of the ease within their child childhood.

When Carter was diagnosed I remember feeling, shocked, shattered, defeated, but most of all I felt anguished.  I spent the next 24 hour period finding ways to feel determined, brave, happiness, at peace, and hopeful.  Finding the positive aspects have become easier, standing up to the bully that is Type 1 Diabetes is second nature, but there are still those days when sorrow rears its ugly head.

When you have a toddler with Type 1 Diabetes, one can feel like they are a triage nurse, constantly.  We don’t get to panic, we have to problem solve, always.  Our mentality shifts, we can’t afford to break down, we fight with a vigilance to obtain control over Diabetes when the downward spiral is imminent.

My son woke from his nap today with a blood sugar of 52, whimpering in his bed I knew something was horrible wrong.   Nothing of our routine, or his insulin to carb ratios has changed.  We lived today the exact same way we lived yesterday, yet a blood sugar of 52 greeted us this afternoon.

I walked into Carter’s room, tester in hand, marshmallows in the other.  He looked at me dazed, I checked him got the 52 reading and started shoveling marshmallows into his mouth.   After 20 minutes and 3 blood checks later, he was finally able to sit up.  He was now reading at 160.  He looked at me, threw himself in my arms and started crying.  Fear, feeling helpless, feeling crummy, in that one moment it was all too much for my 2-year-old to bear.   As I fought back tears I consoled my baby, and after another 35 minutes he was good as new.

With all of the low blood sugars we have battled, today was one of the worst.  Having your child look through you is terrifying, not allowing the fear to consume you, and putting your working hat on and fixing the problem is second nature now.  Once he was fine, the wave of emotion washed over me.  Today is a day I hate Type 1 Diabetes, it’s a day I want to take Diabetes in a dark alley and personally do away with it.

So today, instead of sorrow, I decide to be grateful and hopeful at the same time.  Grateful for the problem solving, and for my son’s recovery from his low.  Instead of sorrow I am shown how to cherish the small things more fervently, reminded to take the extra time, even when I am tired to cuddle my children, always make myself available for them no matter what.  I also am hopeful that soon diabetes management will be a distant memory, but take comfort in the knowledge that through prayer I will always be supplied with the grace to make it through each disaster and come out on top.

New Day, New Challenges

Carter 9.2014Carter has been struggling these past two weeks with sickness, and has been going through the typical 2-year-old behaviors.  He’s extra sensitive, and needy which makes it difficult to effectively manage his Diabetes.  Everything is a fight with him lately, it’s been exhausting.

We also recently found out that we are expecting our third child, and being that I am in my first trimester, I am extra tired and my nerves are worn thin.  Yet I realize that within his growth, there will be many stages of his acceptance.  As he gets older, he will need to process his care with each new realization he receives regarding what all is involved.  The more his understanding grows, the more he has to process.

Since he is much older today than he was when he was diagnosed, he is able to let me know when he is feeling low, when he needs a snack, when he needs his blood checked, and when he is high, by letting me know he’s very thirsty.  With his age I am grateful at his level of understanding, and am impressed with how keenly he is tuned to his needs.

Carter has needed extra love and attention lately, and Ashleigh has seen him receiving that and therefore has needed extra love too.  There are days I feel sucked dry, after all I am only one person, and at times I feel as though I don’t have much left to give.  But it’s in these times that I realize how much we have achieved and I also realize how I have taken for granted the growth Carter has had.

I remember longing for the day that he was able to effectively communicate his needs to me, we are now there.  It’s a small glimpse and reminder that the struggles and frustrations we go through today will be resolved and a thing of the past come tomorrow.

So though with a new day comes new challenges, we have become victorious in navigating through the trials and finding the solutions in order to grow through and learn the ways to avoid the pitfalls that Diabetes offers.  I find peace in knowing that with each new challenge, it’s going to help Carter, and us as a family grow even further then we are today.  Our immense feelings of being overwhelmed are slowly becoming a thing of the past, and Carter’s ownership of his needs and diabetic management are growing.

Hopeful, is one word I never believed I would use when talking about Type 1 Diabetes, especially as it pertained to my son.  Yet today I feel extremely hopeful that with the growth of his communication and understanding, these challenges will fade and we will continue to move onward and upward.

 

Finding The Balance

Ashleigh 9.1.14It can be difficult to find the balance when you have more than one child.  Add in one child who has Type 1 Diabetes and things can get……complicated.

I have wonderful children, I have an almost 5-year-old who started kindergarten two weeks ago, and my two-year-old son who has Type 1.  Ashleigh started kindergarten in the middle of August, and with that new transition has brought wonderful joyous times, that allow her to have something of her own.

For the most part, Ashleigh has been a wonderful assistant, and cheerleader for her brother, yet as she ages, I can sense the twinges of jealousy, not just from the extra time Carter gets with me alone, but also because my mind is always half focused on her.  Intelligence is a wonderful gift my children have had bestowed upon them, it can make it difficult to mask my half attention while Ashleigh talks about her show and tell, and continuing to monitor Carter’s Type 1.

Lately Ashleigh has been acting out, I chalk this up to the old adage “any attention is good attention, even if it’s negative.”  I work tirelessly to be there equally for my children, but how do you explain this to a five-year-old who is desperate to share every moment of her day at school with you, even when it cuts into Carter’s lunch calculation.

Along with the new routine, I feel pulled in even more directions.  I have a son who misses his sister and doesn’t understand why she’s gone, then I have a daughter who wants all of me when she I pick her up.  Such is the life of a mother, yet things feel a little more tightly wound due to Carter’s needs.

I do my best to switch gears and give Ashleigh the attention she is so desperate for when I pick her up from school, but at the end of the day I am human, and it’s important that she gain a realistic perspective of that, even in these formative years.  We have a lot of discussions about being conscientious and self-aware, realizing when conversations need to be pushed for a 5 minute span in order to allow me the focus she is craving.  Ashleigh is good at understanding adult rationale and I am lucky in that arena.

I work so hard to meet the needs of others all day, and when everyone is in bed, secretly I feel like I am constantly failing.  I cloak those feelings with the victories we have had, me with Carter, me with Ashleigh and us as a complete family of four.  Mother guilt is there whether you have one child with special needs or two children with zero complications.  I work to not have Ashleigh feeling ostracized by Diabetes, and in the same fashion work to have Carter not feel left behind by Ashleigh’s kindergarten strides.

I know at some point we will find the perfect balance, now as I muddle through each day, reinforcing my love for both is the best I can give, and reminding myself that I did my best each night as I lay my head down on the pillow, allows me to not only love my children, but also love myself.

Success Through Vigilance

PurposeI came across some old photographs late this afternoon and there were a few of Carter 3 weeks before his diagnosis.  It’s amazing how at first glance, I see the success we have obtained through our vigilance.  Carter is so healthy now, and completely thriving.  He acts like a typical 2-year-old and that is all thanks to the wonderful staff of doctors who have embraced my family and worked so hard to guide us through this trying first year of his diagnosis.

The pictures from those short few weeks before he was diagnosed are heart breaking for me, of course as I look at them now, knowing what I know about Type 1, I see so clearly the problem.   Through mercy, we survived, and now I am blessed to have my happy healthy two-year-old son who craves life and lives it to the fullest.

If I would have been told back in November 2013 when Carter was diagnosed, the amount of vigilance I was to have in order to properly manage his diabetes I wouldn’t have believed it, and would have also been completely overwhelmed.

The fact of the matter is that this disease certainly is manageable, but it’s a 24 hour job, constantly.  The great news is that in a short time, a routine is developed and there isn’t much deviation from the original routine.  It’s amazing how our brains take on the new task effortlessly, when a daunting task involves keeping your child healthy, we find ways to be successful.

I am so grateful for the medical team who has been along with us on this journey to Carter’s complete recovery and the rebuilding of his health.  Looking at our success through our vigilance, I am humbled by all I have learned in these short 9 months.

In an effort to encourage any new families who are faced with the schedule changes, and the terror that feels immense during the first few weeks following a diagnosis, please believe it gets better with time.  Healing begins, and you as a family find the best ways to manage the care your child requires.  Also know that the joy and esteem you will feel with every positive accomplishment helps make things easier.

Take things minute by minute at first, then day by day, and so on.  Find outlets to vent, cry, get angry, but always find the way to find solace, happiness, and trust within yourself, because we have all been called to be parents of Type 1 Diabetics.  We are capable, and we, and our children were born to make an impact!

Hope Challange

HopeA group today started the Hope Challenge, in order to raise awareness for Type 1 Diabetes. On the heels of the Ice Bucket Challenge for Lou Gehrig’s Disease, or ALS, the Hope Challenge follows the same premise.

Though these two disease are completely opposite, the point of these challenges is to raise awareness, money for research, and an overall hope.  I jumped at the chance to aid in raising awareness for Type 1 Diabetes, which, though a manageable disease, is still excruciating to manage.

There are a lot of what if’s when it comes to Type 1 Diabetes, the ramifications should one not properly take care of themselves with the disease are heartbreaking.  The care that needs to be given is exhausting, and the feeling of helplessness that coincides these two feelings is not easy to ignore.

The Diabetic Community certainly is not insinuating that T1 and ALS are on the same spectrum of diseases, but I believe raising awareness is so important, especially if it can educate people who have no idea what living with a disease is like.  Because of the Ice Bucket Challenge, people are googling ALS, and talking about a disease that had until now, been lost in the shuffle.

It’s a privilege to be able to advocate for my son, and many other Type 1 Diabetics who are all hoping for the same thing, a cure.  Sometimes, hope is all you have.  Through the frustration and the tears, hope that tomorrow will be better, hope that someday this will all end and your child will live a normal life are what you cling to.

I believe everyone would do whatever they could, if they had to means, to support the end of the diseases that work so diligently each and every day to take lives of loved ones.  I pray and am hopeful that through this campaign, we can single-handedly raise awareness for Type 1 Diabetes, and strive toward the cure.

#T1DAwareness #Handsofhope #Hopeforacure

My Wish

Refueling at the water park. - 8.2014
Refueling at the water park. – 8.2014

I’m amazed at how wishes have changed in the past 9 months.  Birthday wishes were once a fun tradition where we would blow out our candles and wish for the boy we liked to notice us, or that pair of shoes you just couldn’t live without.  As we age these wishes become more along the lines of more money, a better job, and then after your child is diagnosed with a life threatening disease your wishes take the most drastic change ever.  You find yourself continually wishing for things you know you will never get, like everything being the way it was before the diagnosis, a mended heart, for the disease to transfer to you and off your child.

Instead of wishing for the unattainable, I decided my wishes for my son should embody realistic outcomes.  I wish my son would never know the full extent of grief, that he would see the positive throughout his existence.  I wish for my son to embrace acceptance and perseverance, determination and tenacity.  That my son would give up on the need to chase perfection, and learn to embrace the bad days and learn from them.

I wish that his health will justify the means, and he will always put it first.  That he would look at the world with tender eyes and an even more tender heart, realizing that there are many people who judge out of ignorance.  My wish is that my son is able to educate while walking in love and not take the judgment to heart.  To understand the complexity of his life and understand that this burden is given to those who can manage successfully and to realize diabetes doesn’t define who he is.

But my biggest wish for my son is that he remembers to live life to the fullest and never feel different or cursed or sick.  That he turn this tragedy into strength and prove just how strong Type 1 Diabetics are, and that their ability to live knows no bounds.   I wish that my son will always know who he is, no matter what society is saying about diabetics.  Yet ultimately, my wish is that my son knows how much he is loved and how the impact of his presence in my life is worth every sacrifice, every grief-stricken moment, for without him my life would have no meaning.

However, when push comes to shove, I would trade all of these wishes in for the ultimate wish……..a cure.

 

All things frustrating and encouraging about Type 1 Diabetes