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.

 

What Diabetes Has Taught Me

A month and a half's worth of used needles.
A month and a half’s worth of used needles.

When I look back on these past seven months, it’s easy to see what was taken from me.  A normal childhood for Carter, worry free days, sleep, that I forget to focus on what was given to me.  When I look at what Diabetes has taught me in this short amount of time,  I see life through new eyes.

When I think back to diagnosis, I am grateful for my son’s life first and foremost, but I am also grateful for the journey we have had to maneuver through in order to be where we are today.

I have learned to never take anything for granted, I have learned the true meaning of vigilance, and advocate, and have a cause worthy of educating people about.  I have learned how to be patient, how to be still, and find the joy in the small blessings, like a number under 150 but above 80.

I stopped taking my health for granted and watch more closely the eating habits of my family, I learned how to be tolerant of those around me who minimize the care my son’s life is reliant upon.  I have learned to always hug and say I love you.  I’ve learned to appreciate life and all it has to offer.

I’ve learned to allow my children to find growth as they process Diabetes in their own ways.  How to allow them the space to let everything sink in, for however long it takes them.  I’ve stopped focusing on how much I hate Diabetes, and have started focusing on what a gift each day is.

Waking up and viewing my day as another learning opportunity has completely shifted the way I live.  This doesn’t mean I don’t have horrid days where everything goes wrong and I hate what our days have to offer, it just means that once something so precious is almost taken from you, it changes your perspective.

Diabetes has taught me to live in the now and be grateful even in the midst of my hardest days.  It has given me the gift of seeing the forest through the trees and another reason to hug my kids all throughout the day!

Out of Place

diabetesontheside.blogspot.com
diabetesontheside.blogspot.com

Where do you fit, as the mother to a Type 1 Diabetic toddler.  You don’t have your child to talk with about diabetes, and you don’t relate to the majority of the diabetic community, since you yourself don’t have the autoimmune disease that alters your life.  Most days, this can have you feeling out-of-place.

I think it can be hard sometimes, being the parent to find your comfort zone.  There is so much ground that is non-relatable, but where do we put our feelings of inadequacy, fear, or pain?  For the most part, we are tolerated by the diabetic community, those of whom live this day in and day out.  Just as we don’t know what it feels like to change a site, or get poked more than once a day when doing MDI, diabetics also don’t know what it’s like to be the parent who is subjected to watching your child struggle and feel like a failure multiple times throughout the day.

The pressure put on parents in general is unrealistic when you don’t have a child with special needs, then tack on the autoimmune disease and the pressure seems unbearable.  You feel like you should be able to fix everything for your child, and when you can’t you have to put your anger and frustration aside for the sake of your child.  After all, they are the ones who have the unfair lot in life.  I earnestly disagree, we, as parents, have an unfair lot as well.   We worry constantly, and for children as young as my son when he was diagnosed, your child’s life, in the literal sense rests on your shoulders.

Now don’t get me wrong, I am not going to tit for tat who has it worse, but I believe it’s fair to say that there is a fine line.  I haven’t slept through the night in 7 months, I can look in the mirror and see how much I have aged in these past months, some due to lack of sleep, but mostly due to worry.  Everything in my power to get my son through each day relatively unscathed, zaps me to the point of complete exhaustion.    Then add-on that he is a two-year-old and most days it feels like it’s all too much.

The obvious answer is that those who have the disease have it the hardest, but we should not forget the caretakers who enable the people who need care to make it through each day.   For those of us that feel a disconnect of where we actually fit into this support equation.  It’s been nice to meet other parents who are in the same boat as me, I find that the majority of them have children who are much older than Carter so it’s been nice to pick their brains about what the future holds for us.

I know, through it all we are all connected by this travesty called Diabetes, it’s an unfortunate club to belong to, but all in all, even though the majority are those who are actual diabetics, the support I have received has been unfounded.  I find comfort in knowing I can vent on my blog, or a Facebook page and have a group rally behind me to encourage me through my down times.  At least we don’t have to navigate this terrain alone!

All things frustrating and encouraging about Type 1 Diabetes