Learning to Trust Science

Carter - October 2014
Carter – October 2014

I’ve never been reliant on science.  Faith presided easier for me, and where faith is still at the helm within my life, I have become more dependent on science in the past year then I ever imagined I would.

Finding a way to trust in science and technology to keep my son alive is something I never was prepared to do, yet being thrown into the situation of having a son with Type 1 Diabetes, I have little choice.  I trust that the blood glucose monitor will deliver the most accurate results every time I poke my son’s finger and milk the blood out.  Beyond that, I have been forced to depend on a lab derived substance to provide for my son, what his body decided it can’t.

Where I am grateful for these advances in science, and the freedom that my diabetic son is able to have because of the scientific advances we are lucky enough to have access to, most times I feel trapped, almost hostage to the science.

The emotions come and go in waves, one day a cure is around the corner and my heart skips a beat at the hassle my son will finally be able to leave behind, and a week later, there is another push back, an unforeseen delay.  My heart sinks, and I muster up the strength to push forward and find a new way to walk hand in hand with Type 1 Diabetes, for the sake of my son and his health.

Everyday is a constant reminder to survive and not get my hopes up for fear of the disappointment soon to follow.  This is when my faith kicks into overdrive, and I am reminded that science isn’t the end all be all.  I have faith that my son will always be protected, I have faith that I will always know the proper steps to take in order to help my son traverse this shaky ground that is Diabetes.  I have faith that I will find peace in the midst of the storm.

I am hopeful for the cure I pray for everyday, not just for my son, but for all the Type 1 Diabetics who have been living with this horrible disease for years.  Type 1 Diabetics are so deserving of a cure, and I am stuck wondering, given all I know now, if I would always question the cure.  When would I be content to not check Carter’s blood through the night, would I ever fully be able to trust that my son now, with the help of science, finally have a “working” pancreas?

This is where faith again fills the gap and helps me, when the day comes and we are faced with relying on a cure to maintain my sons health, I will get used to that new routine as I have this past year with Carter’s insulin regime.

Learning to trust technology has been difficult, but I know that if it meant a cure for my son I would be able to place my trust in anything that will alleviate the hassle that my son goes through multiple times a day, all just to be able to eat and stay healthy.  I am grateful for the dedication that scientists, parents of T1 kids, and organizations like JDFR and The American Diabetics Association have made in order to advance a cure for our children.   A cure is so desperately needed and would be the beginning of a new life for so many.

The Face of Type 1

JuiceboxThis past weekend, at a 5-year-old birthday party for one of my daughters friends, I had the privilege of providing unexpected education.

As I sat, calculating the amount of carbohydrates in a cupcake, then checked my son’s blood and prepared the insulin to dose him, I had mothers watching me, horrified.   At first I didn’t think anything of it, most often when you pull out a needle and a vial of insulin people begin staring.  I have learned to ignore and not become effected by these glares.

One mother finally spoke up and asked me if I was going to be giving my diabetic son sugar.  The other mothers glared on, almost with bated breath hinged on my response.  I responded I was and began my advocate speech that I know so well.  How diabetics can eat sugar, how it is the carbohydrates that get converted into sugar within the body that we need to calculate for and cover with insulin.

It was then that one mother bravely spoke up, in her mind on behalf of all the others who were in attendance, and nothing short of accused me of giving my son diabetes because of allowing too much sugar in his diet to begin with.

Resisting the urge to dart the needle into her flesh was exhausting, yet I took a deep breath, and as calmly as I could, explained what auto immune diseases do.  How a person with Type 1 Diabetes suffers from an auto immune disease which has attacked the part of their pancreas that produces insulin.   Due to this, Carter would be insulin dependent for the rest of his life, as his islet cells within his pancreas do not make insulin anymore.

I explained how, for Type 1 Diabetics, sugar has never been the enemy or cause for the pancreas to give up the insulin making powers it once had, and went into great detail as to what Carter was responsible for completing just to be able to take a bite of a cupcake.  Beyond the lengthy explanation, I let this woman know, among the now growing crowd of party goers, that I can appreciate her uneducated question as I too was unaware of what Type 1 Diabetes entailed prior to my son being diagnosed.  I made clear, however, that where I could forgive such a blunder, most children effected by the life Type 1 Diabetes delivers to them would easily take offense to such accusations.

The woman apologized, which I was appreciative of, but when looking back I was glad to have been there to educate those who had never been around, face to face with a Type 1 Diabetic and were given the opportunity to learn about the care involved in keeping a diabetic alive.

Where some people would rather shield their children from such careless comments, I believe it’s important to have your children be aware of the opposition they may face daily.  Along with the glares and uncomfortable stares, there are many who are completely misguided when it comes to the care for and maintenance of Type 1 Diabetes.  It’s our job as parents, and diabetics themselves to unveil the true nature of living a life with diabetes and educate those in order to perpetuate a cure.

At the end of the party, all the parents came by one by one and spoke about how grateful they were to know what having Type 1 Diabetes really means, as well as commend me for my efforts in caring for my son.  I appreciated the accolades, yet found a deeper understanding of my purpose.  It’s not just to keep my son alive, it’s to be the voice for those who are unable to push for a cure that we so desperately need, or who are too shy or embarrassed by this condition to openly educate and advocate.

When looking at the statistics of the depression that Type 1 Diabetics can face, I will help spread awareness of Type 1 Diabetes in an effort to educate those who don’t know, with the hope that the diabetic community would be embraced by anyone and everyone who sees them prick their fingers, or measure insulin.

Creating a less judgmental environment is the first step to opening a dialogue when it pertains to life with Type 1 Diabetes, and raising awareness is the first step to funding a cure.

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

www.cafepress.com.au
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!

All things frustrating and encouraging about Type 1 Diabetes