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.

My Dearest Ashleigh

Me and Ashleigh on my Birthday. - May 25, 2014
Me and Ashleigh on my Birthday. – May 25, 2014

My dearest Ashleigh, I wish you knew how special you truly are.  I wish there were a way to help you understand the magnitude of your presence in our lives, what you do for your daddy, your brother and me all day, everyday.  I never knew, when you were born the shoes you were to fill and how I would rely on you so much throughout each day.  You are always there for me no matter what.  Most days it’s just the hug you see I need that lifts me higher than you could ever imagine, other days it’s the way you run to get the juice I need to help Carter with a low he is experiencing.

I am in awe of your kind spirit and loving heart, I am amazed at your processing of this intrusion into our lives.  You have been the best big sister a person could ask for, and your brother is continually in debt to your adoration of him.  You are a companion, a caregiver, a motivator, and all-in-all a wonderful human being.

I am blessed to have you by my side, and adore watching you and your brother play together.  You have shown Carter the joys of life, even through all the sorrow.  You stepped up to the plate when I couldn’t because I was crippled by grief.  My precious baby girl, you have a strength that I admire.  Your keen conscientiousness not only makes you a wonderful daughter and sister, but will make you a wonderful friend, wife, and mother.

I am lucky to call you my daughter, and hope one day I can show you the joy you are to me, and how without you I would be so empty.  I thank you for your patience with me as I struggle to find the best ways to express the emotions that rage inside while caring for your brother.  As you learn about life, you preside with immense grace.  I am fortunate to be able to spend all day with you, and am so lucky to be on the receiving end of your love.

To my daughter, my first-born, I adore you, and my love for you knows no bounds.  You are the perfect gift from God, and I am blessed to be your mother.   You are so selfless, and giving, and Carter and I are better people for knowing you.

All My Love,

Mommy

Grief

bridgetwrites.blogspot.com-
bridgetwrites.blogspot.com-

Grief is an interesting person to walk with, one would think that by acquiescing to it and allow it to consume you for a brief time, that it would then have the courtesy of leaving you alone.  This isn’t the case when you are the parent to a Type 1 Diabetic child.

Lately I feel suffocated by grief, I allow myself to be sad, in the hope that I will shortly move past it.  I am finding that the closer we get to the year mark of Carter’s diagnosis, the heavier my heart feels.  The only thing I can deduce is that when the dust settles, when the training is done, when the proof within my son’s A1C shows I can do this, I have nothing else to prove…..I am left with the realization that this will be a battle within our family forever.

I thought I had completely and though reluctantly, accepted the bombardment of Type 1 Diabetes into our lives, and with each day I am finding out I really haven’t.  I hide my grief for the most part, and lately it’s the smallest of things that has me feeling like I can’t cope.  Everything is a battle, insurance, diabetes, my son’s numbers, my emotions, I just feel so fragile.

I do my best to push through each and everyday, and when I am feeling down, I look at my son who is inflicted with the brunt of what this disease has to offer.  Though there are many times throughout the day that he is annoyed by the presence of Diabetes, the rest of the time he is a pillar of strength.  I feel badly even feeling effected by Diabetes, when all I am doing is managing it for my son, but watching my son’s frustration and anguish when it comes to diabetes, and knowing that I am unable to take this from him floods me with emotion.

As I work through the grief, I remind myself of how far we have come, and I work hard to be kind to myself and realize that this is a necessary process along the long and windy road to acceptance.  The goal being not second guessing everything I did in the days and months leading up to Carter’s diagnosis.

I wonder if the grief aspect will get any easier, will these feelings ever let up or will they always remain there on the surface and just have new hardships tacked on with each new phase we traverse as Carter ages?  I guess that part remains to be seen, what I do know is that my love for my children had remained the same.  I would do anything to keep them healthy and happy, and if glucose monitoring and shots are part of that equation then so be it, I can work through my feelings as they come.

When it comes to Diabetes, I feel…Sad

Carter, June 2013
Carter, June 2013

I must admit, I have had a rough couple of days.  It seems no matter what I do, I just feel sad.  I don’t particularly know why, it’s just a feeling I can’t seem to shake.  I guess the reality is that when it comes to Diabetes, I feel sad.  Carter has been struggling with low numbers lately and I will whole heartedly admit that I would rather him be on the higher side then too low.

Last night in particular we had two lows under 65.  The first happened at 9:30 PM and I had to use the frosting to bring him up as he wouldn’t drink or eat anything.  Then Carter woke up on his own, thank God, at 2:00 AM, 10 minutes before the alarm we have set to check him in the middle of the night, and he was 64.  With frosting gone, I had to get some juice.  He was not pleased and put up as big of a fight as his little weakened self would permit.  I had to hold him down and squeeze the juice into his mouth, which then caused him to choke.

A situation that should have only taken 10 minutes to correct ended up taking 2 hours.  Fuming from the toxic juice I forced him to ingest, Carter refused to go back to sleep, I rocked him and held him as he drank some milk, but his anger was evident.  I understand, I’m angry too, and when I finally placed him in bed fast asleep at almost 4:00 AM, my head hit the pillow and my brain was flooded with the what if scenarios.

I know the majority of them, if we continue to be vigilant with Carter’s care will never come to pass, yet knowing what could transpire makes my heart sink.  I hate watching my child fight so hard and be met with such resistance from his own body, only to be further disappointed when his Mom who is supposed to fix how he is feeling then has to hold him down to shove corn syrup, honey, juice, yogurt, etc, into his mouth when all he wants to do is feel better so he can sleep.

Amazingly it’s not anger that’s leading the charge from my emotions these days, it’s utter heartbreak.  We as parents spend out lives making sure our children are healthy and do what we can to help them avoid the pitfalls, then when your child is diagnosed with a lifetime disease feel as though you fail them every minute of everyday.  You sit and long to be able to take this burden off of them and realize there is nothing you can do to make that a reality.

Sadness, that’s the emotion I am stuck in these days.  I would do anything to release Carter from the scary pokes and shots he has to endure multiple times a day in order to live.  But for now the best I can do is manage as best I can and push harder to move beyond the weariness I feel, because I would gladly be exhausted in order to bring a smile to my children’s faces.

Blood Sugar Rollercoaster

www.napsnet.com-
www.napsnet.com-

 

 

 

 

 

 

The blood sugar rollercoaster that Diabetes brings can be exhausting.  Up, down, up, down, and then eventually *crash!*  I do my best to try to avoid the crash area as much as I can.  I struggle with burnout like the next care taker, and truthfully I don’t do much to make sure I have enough me time.  Me time lately, has consisted of extra sleep, when my husband comes home I go to take a nap.

With the extra night checks we have been tasked with due to the major fluctuations in Carter’s numbers, it feels like I hardly get any sleep.  But even when I take naps, it seems as though the deficit I am in is too great to try to conquer.

Type 1 Diabetes can take a turn for the worst or the best, in the blink of an eye, and trying to stay one step ahead is absolutely exhausting.  But given the alternative that not monitoring blood sugars regularly gives, death, I am extremely vigilant, even when it makes me feel like a zombie.

I worry about how the fluctuations make Carter feel, I worry I am not doing enough, but what more can I do?  I check his blood 8-10 times a day, adjust insulin where needed and still the immense fluctuations.  Type 1 Diabetes is really a jerk of a disease, so indecisive, and heaven forbid it get a little hotter or cooler, then all bets of consistency are completely off!

Being able to accept the fluctuations if half the battle, getting to the point where you don’t take the fluctuations personally, as if it were a direct reflection of your care, is the hardest part.

I have finally moved past those feelings, and realize that I could be doing everything “right,” yet the numbers will show something completely different.  Being overtly diligent with meals, and insulin to carb ratios, and activity can only get you so far when it comes to blood glucose readings.  The most freeing thing I have learned to do is forgive myself.

I forgive myself for being pissed off, I forgive myself for being frustrated, and for under dosing because of exhaustion.  The ability to properly calculate insulin based on the correction scale, in conjunction with the reading I have received at 2:00AM sometimes takes me a little while to calculate.  All the while with a complaining toddler who is getting more awake with each second.

Mothers of Type 1 Diabetic toddlers, are forever stuck in the front lines dilemma, we have the pressure and fear associated with a gun pressed to our temple, yet have to think calm and cool in order to fix the situation.

I don’t think enough emphasis is placed on the parent of a Type 1 child, especially one who isn’t yet fully speaking.  The meeting of needs is hard enough when it doesn’t include an algebraic equation, and most times, the variable found within the algebra equation handed to you in the middle of the night includes tears and maybe some cursing out of frustration.

All in all, the end result is always the same, we make it through, we continue to rise above and find the solutions, then when we lay back down in bed we don’t even want to close our eyes again, for we know right when we start to get into REM we will be called upon again.

We conquer this part of out day like exhausted and reluctant champions, and do it over and over again in an effort to give our kids a normal life.  Fluctuations or not, I am determined to make sure Carter’s days are filled with fun and excitement, not just blood checks and shots; and I work very hard not to show the fluctuations in my energy level.

 

All things frustrating and encouraging about Type 1 Diabetes