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

Changes and Growth

Ashleigh at School. 8.2014
Ashleigh at School. 8.2014

It has been a busy week in our house.  My non-diabetic daughter started kindergarten, Cater and I have been battling the flu, and I actually left Carter in the care of another for the first time since diagnosis.

It never ceases to amaze me, once I believe we have finally learned how to handle the latest change life has thrown at us, another one is hurled our way.  Ashleigh starting school has been emotionally difficult for me.  As parents we pour ourselves into our children and long for the day they are more independent, then when that happens we feel replaced.

It makes me wonder how difficult this will be for me when Carter starts Kindergarten.  I mean it’s hard enough when you are trusting someone to keep your perfectly healthy child, then entrusting someone to properly care for your special needs child.  My heart swells for those parents who are going through that right now.

I luckily still have 3 years to get used to the idea of a 504 plan, and the hope that being as involved in the district that I am, my son will get the best care possible.

Carter had the flu last week too, and though he had a fever didn’t throw up or have ketones.  I love those small victories!  The only thing that was hard was the fact that having the fever getting poked for his insulin was a horrific nightmare.  I hated it every single time, obviously not more than him, but watching him flinch and cry was horrible.  Being sick myself, I cried myself to sleep quite a few times last week.

But, on the growth end of the pendulum, on Sunday I bit the bullet and put Carter in his class at church.  This was the first time, since diagnosis that he has been in the care of someone other than me or my husband.  I was really nervous about it, but realized today was as good a day as any to loosen the reigns.  After all, I would be but 25 ft. away should he really need me.

I reluctantly placed him down, and he protested as I was leaving the room.  But everything worked out perfect, I checked his blood before I left the room and checked him when I picked him up.  He was great, and it was so nice to have 30 minutes to myself.  It was the recharge I desperately needed.  Plus I proved to myself and Carter that someone else can take care of him for a bit.

So though the week began with difficult changes and illness, it ended with growth and release of some control in order to expand the trust I am going to need in order to give my son the best care possible.

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.

 

Reflection

Family Vacation - December 2013
Family Vacation – December 2013

Reflection is a curious thing.  Sometimes reflection involves an immense understanding of the struggle you have just endured, and allows you to see with clarity the benefit of it as you grew through the pain, other times reflection leaves you bewildered.

I vacillate between the two outcomes these days.  Most days I search, difficultly for the clarity, some days I find it some days I am left with bewilderment.  I will never fully understand the full extent of what I am to gain by this diagnosis for my son, but I do my best each day to find the clarity I need for that moment, to get through the day.

Some days my son’s Type 1 Diagnosis evokes bitterness, other days I am left feeling grateful for the closeness we will always have. Despair, disbelief, disdain, these are feelings that work hard to burrow themselves into my soul, not allowing it has been an immense effort.

I  hate having to watch my son for “weird behavior” in order to stay on top of his blood sugars and health.  It saddens me that I know what odd behaviors my son shows when he is too low or too high blood sugar wise.  I hate that I get judged by strangers when I administer a shot of insulin to my son in public, because those people are uneducated when it comes to diabetes.  I hate that people assume I feed my son sugar all the time and look at me as an unfit mom when in public, only because they don’t know Type 1 is an auto-immune disease and I didn’t do anything wrong in order to have my son become inflicted with this disease.

There are days I get tired of being the bigger person and am tired of being understanding, I would love for accountability to be dealt full force to those who presume to know what my day looks like, who assume that my days is the exact same as before, just with shots added in.  I grow weary of the ignorant comments, the incorrect assumptions that we eat poorly, or I didn’t breastfeed long enough, or I gave my son cow’s milk once he turned one, that all contributed to his disease.

It’s then, that reflection becomes my best friend, I reflect on our lives pre-diagnosis, and I reflect on how life has changed.  I reflect on the how Type 1 Diabetes has essentially become the nucleus of our family, being the  constant that aids in our continued growth.

So today as I reflect, I am proud to be the Mom of a Type 1 Diabetic Toddler, I am no longer impacted by the deflected shame, I take complete ownership of the fact that every shot, every blood sugar check, every ketone analysis, is a direct refection of my love for my son.  It’s a direct reflection of his fathers adoration for his one and only son, and a reflection of how from the ashes, the Cheatham family has risen above the norms, above the stereotypes, and found the newest ways to dive harder into faith.  We have become the poster children for growing stronger through adversity, and through reflection, I am pretty proud.

Knowing You Are Not Alone

AloneSometimes when you are in the middle of a struggle it can be hard to remember that others have gone through, and most likely are going through the same struggle.  Knowing you are not alone can make all the difference in the way you feel.

Things have been hard lately with Carter’s numbers, massive highs followed by a crazy low.  It feels as though there isn’t anyway to guarantee that I will ever have the right solution.  When dealing with Type 1 Diabetes, it’s hard to remember I am a human being who needs enough sleep and all of the other necessities for survival.  I can’t tell you how many days it will be 3PM before I have eaten anything.  Taking care of both of my kids is very time-consuming, then add-on the diabetes management and I am surprised I am able to do anything for myself.

Some days it can be hard to not feel resentful, not toward my children, but toward diabetes.  There are many days I get frustrated at this regime we have had to add into our daily lives.  Exhaustion exacerbates these feelings, and when I feel completely alone I will happen upon a blog, or a post within a group I am a part of and realize I am not the only one experiencing these feelings.

Even though it doesn’t change the circumstances, it is nice to listen to other ways people have found a solution, and just by realizing I’m not alone makes me realize that the frustration I am feeling is normal.  It can be very difficult to be so exhausted and still have to function, especially when “to function” means keeping a person alive.  I do the best I can to manage Carter’s diabetes, and there are days that are easier than others.  Being able to reach out to a community that understands and be able to say, this sucks, and be greeted with an understanding, helps me to make it through many days!

Remember to always reach out, when you feel frustrated or exasperated, there are many people who are going through the same thing and are able to relate.  Receiving encouragement in the midst of the storm, helps me realize this too shall pass.

Tolerance

Diabetes ManagementI’ve never had much tolerance for people or things that inconvenienced me, or made me slow down.   Yet I now have to have patience and tolerance for something that does all this and more.  Diabetes is an invader of time and space, and cares for no one but itself.  I have grown more in the past 7.5 months not because I wanted to, but because I had to.

There aren’t many choices when your child has a  life threatening disease, survive or die, those are the two choices you are given.  Everyday we wake up and choose life, and joy.  Some mornings are harder to start than others, but for the most part we rub the sleep out of our eyes and tie our capes on.

We place exhaustion behind us and push forward, this is true for parent/caregiver, and child with Type 1.  Nights are riddled with sleeplessness and when the morning comes we start all over.  It’s a concerted effort to make everyday better than the last.  I would say that 95% of the time in my house we are successful.  It’s that other 10% that can feel debilitating, but when you look at the math, we are doing pretty well.

Being completely void of the struggle is unhealthy in my opinion.  I believe living consciously in the struggle makes the good days that much more sweet.  Knowing we have to search for the joy on some days, shows me that through anything if we are doing it together, me and my husband and children can find the positive no matter what.  Honestly, it makes the good days that much better, knowing what we had to strip away in order to feel them.

These past 7.5 months haven’t been a walk in the park, but we have ripped away the facades and have relationships with each other that are void of the pretend, and exude trust and true companionship.

Somehow, being faced with a blood sugar that you know is either going to place your child in DKA (Diabetic Ketoacidosis) from being too high and is essentially making your child’s body too acidic, or checking on what appears to be your peacefully sleeping child, only to find out their blood sugar is 36 and they could be slipping silently into a coma, life becomes real.

Sorrow tries to asphyxiate you, but you don’t allow it, and we problem solve in a matter of seconds.  Be it 2:00 PM or 2:00 AM, we are always “ON”, knowing what hesitation could mean, there isn’t anytime for it.  I find it difficult to be tolerant to a disease with a bully mentality who doesn’t like to play fair, and works to claim my son’s life as it’s trophy.

Yet my tolerance and quick thinking are my badges of honor.  We as parents of T1D’s wear these badges under our dark circles, and when we have an amazing win, we gently tuck it under our capes.

All things frustrating and encouraging about Type 1 Diabetes