Friday, March 4, 2011

Always

As many of you know, my 7 year old son Joe has been living with type 1 diabetes for over 4 years now. He has been living with the rigorous daily regimen that "d" demands of him for over half of his short, sweet life.

Over the years I have been left to wonder when will Type 1 Diabetes in my son's life stop breaking, chiseling away at, wearing on, and weighing down my heart.


When will I stop grieving?

Will I always be one string of non-euglycemic numbers away from a minor melt-down?

I believe I still mourn the loss of Joe's beta cell function because he cannot just sit and eat crackers out of a box or cookies off of a plate "mindlessly". Carbs must be counted. The pump must be programed. Insulin must be delivered. Food must then be consumed. Not eating, once the insulin is administered, is not an option. Sadness ensues as I witness the wince cross Joe's face while I insert needles into his flesh for pump site changes and CGM insertions. The sadness comes not from the pain that I am causing him, but from his attempt to hide his discomfort and pain from me. He, in essence, is trying to protect my emotions by hiding his. And, again, grief weighs on my heart a bit more as Bridget and Joe put aside much of their chore money to "fund" a CURE, as Joe states "I just want diabetes to end". The heaviness in my chest stems from my lack of faith in a CURE for Joe. Sad. True.

Our journey of managing blood sugars from meal-to-meal is exhausting. Managing diabetes from activity-to-activity requires thoughtful planning and critical thinking. Tweaking pump settings and bolusing insulin from blood glucose number-to-blood glucose number demands continuous attention to detail. Diabetes care never ceases as it is with us every night, through our days, during holidays, during illnesses. It is with us every trip to the store, to the park, to the gas station. It is with us while we are driving. Our journey of delicately balancing judicious diabetes management in a young, growing, active child, while considering the psychosocial impact that this kind of tedious, rigorous, never-ending care demands of us ... that type 1 management demands of Joe ...will always demand of Joe is essentially unexplainable. However, I do try, here on Beta Buddies. I believe my flits (word? I dunno) with grief and sadness stem from the "never-ending-ness" of the care and the isolation that results from this sort of life. It is difficult to explain the routine, the regimen, the tweaking, the boosting, the sleepless nights to those that do not live it. At times, I feel alone....

At times, not only do I feel alone, but I feel there is a part of me missing. The part of me that used to be a good friend, that was a kind neighbor, that had the energy to be a thoughtful human being. You see, there are times that there is absolutely nothing left of me to give. I am spent. I am caught up in the numbers. I am tangled up in the psycho-social web of diabetes land mines. The sad thing is, many people don't get that the impact of 24/7/365 meticulousness and care can fuck with you. It saps your energy. It leaves you feeling depleted. There is rarely a break or reprieve. What gets to me the most is that I am only here to help shoulder the weight of "D" care for the short-term. It is Joe who will endure the enormity of it all for his lifetime.

For the most part .... I find I am fine. I have my chin up, with a smile plastered on my face. I suck it up, with a smile plastered on my face. I can "take it in the ass at the arts"...again, with a smile plastered on my face.

At times ... I still struggle... Tears. Isolation. Frustration.

Always ... Lora, Meri, and Donna, I "get it." Type 1 in our children's lives is a constant. It is not going away. Ever.

From the "Irony Of Time" ...

'Seconds, minutes, hours, days, weeks, months, seasons and years, funny how the "measures" of time all blur and meld together as one long stream. During them, you can suffer the most monumentally painful events in your life. Each minute seems an hour. Each hour seems a day. Each day a week. Each week a month...and so on. Four years ago today one dip of a stick into my son's urine changed my life, upheaved my family's life. It was one of those "clock stopping" moments. The type 1 diagnosis and it's sequella froze me in "time" for a bit. No matter how hard I tried to deny "It", no matter how hard I tried to ward "It" off, no matter how much I wanted to tell "It" to "go to hell" and to leave me, my family, and my baby Joe alone, "It" was there. "It" was going nowhere. Time had stopped. I was "stuck". "It" wasn't necessarily "d". I believe "It" to have been "grief".'

A day-in-the-life of understanding.

30 comments:

Rachael said...

*Tears*
YOU ARE AMAZING! Joe and Bridget are so lucky to have such a wonderful mom. Thanks for being so strong, so honest, and so supportive! Not just for your family but ALL of us! I sure do love you friend! Thanks for all you do!

Kimberly said...

This had me going this morning girl! Oh my...you spoke every word that has been going through my head lately. Beautiful, beautiful, post!

Meri said...

Fake it till you make it. :) I do the same thing dear Reyna. Thank you for this. Thank you for being my friend. Thank you for supporting me through my ups and downs. Thank you for your great spirit and your continual inspriation! Love you mother bird!

Same.

Alexis of Justices Misbehaving Pancreas said...

How do you always know what to say. This is how Im feeling this morning as I wake up from what i guess some would call sleep and worry about J going to gym which sporting a superbolus. Im freaking out. Its not normal. Gym should just be fun and games. I hate not knowing what thats like.

Love u and those kiddos.

Anonymous said...

Reyna, You are doing a great service for Joe by teaching him how to live with tpye 1 D, we do understand what you and the family go through, as a parent and a grandparent it grieves us to watch you, Joe and the family daily walk this road of life as there is nothing I can do to make it all better. We do try to support you and the family in any way we can. We are so very thankful that you have the knowledge and the spirit you have to help teach Joe how to live his life as close as he does to other children without Type 1 D.
Love, Mom

Joanne said...

You said it perfectly Reyna. You have completely captured how I am feeling lately. I miss that part of me and wonder if she will ever be back.

And the hurt I feel for Elise cannot even be put into words. It is all too much sometimes.

Sarah said...

"The sad thing is, many people don't get that the impact of 24/7/365 meticulousness and care can fuck with you. It saps your energy. It leaves you feeling depleted."
That is the gut of it all for me...I feel like I have this wonderful view from watching TJ knowing that he honestly doesn't feel like d is a huge deal, the way he just plugs along never complaining but being honest about how difficult d can be at times..so I think I know that someday Isaac will be there at a similar place as TJ. Until then I don't think that anybody other than those of us with d in our families really get your above statement. I am often feeling like such a loser at the kid's preschool when I sign up for something but know that what'll get done is nothing like what I wish I had the energy to do. When I can barely roll out of bed in the morning and it's completely due to exhaustion, not depression. When I just wish others would stop talking to me about d for just one day so that I could stop biting my tongue.
Thanks for writing this...as lonely as I feel it does help me tremendously to know all of you ladies (and some gentlemen) around the world that are dealing with the same situations. (sorry for the novel!)

Donna ((Sweet Momma)) said...

Oh my. This was supposed to be a "no crying" day at work for me.

SAME!

Valerie said...

Ahhh, great post! I have been feeling this way a lot MORE lately, so everything you said hit home for me x2. It does take endless energy and planning. It is constantly exhausting. I had a crummy day of up & down blood sugars yesterday and I am dealing with the newness of the CGM, so it all hit me hard yesterday and I texted my boyfriend, "I just want it to go away!!" Sometimes I feel like a 5 year old whining and complaining, but I think those feelings need to be vented and addressed, AND I think they are valid. Even though my family and friends listen to me vent, I know they cannot truly get it. They want to, but there's just so much involved that they can't understand. It's not just the technical part of tweaking, but it's the emotional and psychological part of it as well. You're definitely not alone, but I know it can feel thay sometimes within your own situation. Keep your head up--you are amaaaaazing!

tara said...

Oh man Peyn. You know what else is tough? Loving your sister to pieces and know and watch her struggle and not only not be able to help but to know you dont even grasp the depths of what she and her family are going through. You are amazing. Life just isnt fare sometimes. But you are one AMAZING woman and mother and I admire the hell out of you.

Penny said...

I admire you sweet Reyna. I am with you on the journey, along with so many others. I hope that our friendship keeps you afloat sometimes. Hang on when the going gets rough and the waves get too high. It's isn't fair, it isn't right, it just isn't...but I DO know, in so many, many ways, that you have the strength, the fortitude, the determination and the guts to do it. Onward sister.

Same same

Misty said...

Oh Reyna! I don't know which made me cry harder...your beautiful post (AMAZING!!!) or the comments from your mom and your sister!

I am so honored to know you and so grateful to have you on this journey with me. Don't know what I'd do with you!

Lora said...

You said it perfectly... Love you!

:) Tracie said...

It was pointed out to me that we all seem to be in the same kind of funk lately here in D land. Thank goodness these blogs exist to help all of help each other.
24/7/365.......we should tattoo this in unity! Zombie mom's unite!!!

Chin up Reyna....you're awesome at this. :)

Sysy said...

You so "get it". Sometimes I think parents of diabetic children have it harder than their kids. I remember arguing with my dad as a teenager because I was having a hard time with diabetes and felt no one else at home was suffering as much. He broke down stating that he didn't doubt I was suffering a lot but that I didn't understand he had it hard as well. He had two diabetic daughters to worry about (and three others to give attention to). I didn't understand why that would be such a big deal until recently when I had my own kids. My heart weighs very very heavy for all of you parents. I've come to a much nicer place with diabetes where I feel pretty healthy and happy 99% of the time (and I had a lot of 10%+ A1c's growing up). As a result, my parents don't feel as overwhelmed as they used to. I get the feeling with a mom like you, Joe (and Bridget) are going to be happy, healthy, and awesome adults.

donna said...

it is what we all are feeling some of us just don't know how to put it in words...you always do...my heart breaks every day for my beautiful daughter and I worry for her future...when I can't be there...I worry and grieve all the time..it has made me a different person this diagnosis and our family has been changed forever...it is just very sad....I wish it never ever entered our lives....how different we would all be....imagine again sleeping through the night...I can't remember that feeling of waking in the morning and feeling rested...the simplest of things. Thank you Reyna for being the voice for so many.

Anonymous said...

My daughter-in-law sent me to this blog.
I read and re-read it.
I want to get it.
I know the nights are sleepless, but I also know they are not sleepless like a fever that will break. Not like relief that is just around the corner, even though it is, like a minute in the storm that you catch before the next wave hits.
This is how it is.
One little breather at a time.
Learning to take what you can get.
Because this does not break.
My prayer is that you don't let it break you.
I see you brave in the face of a daunting task. The physical, emotional, psychological weight of it must be crushing.
I pray that it does not crush you.
A wise man once asked me: Do you really think that God would put the weight of an elephant onto the back of an ant? {Does this question help?}
Is your strength for this, or because of it, and does it matter?
You can do this, you are doing this
You are all like great waxed wonders flying right smack into the friggen face of the sun and not melting.
I love you all.
I praise you all.
I pray for you all and for your children and, especially, I pray for laughter - A kind of Pancreatic Prance Party you can all virtually attend that gives you relief, that gives you all perspective, that strengthens your strength, and allows you to let the proverbial "Train" to carry the weight of the burden all at the same time.
Like weather vanes, moving in the wind, telling directions, watching, waiting, something, some enormity of love calls you, watches over you, moves through you. Your sub-atomic parenting is sending out waves you do not even know about, waves that are washing against the shores of distant hearts, dancing in the hearts of close ones, beating in the hearts of bolus and needle and scale of un-measurability.
Be blessed in all your blessings.
Take heart in all your heart.
Take measure in all your measurements.
The roses you can allow yourself to smell are there between all the hideous thorns and they will bloom because of you or in spite of you.
God bless
Ganny

sfincham said...

I'm so glad I found you and your blog! Said perfectly! I want to eat it for supper and spit it out every time someone asks me if "Ellie's numbers have evened out yet?". Drained of all everything...sucking it up with a small smile every day! Love you.

Roselady said...

Gosh reyna:
After reading your post, I just wish I could meet you in person and hang out awhile. Sometimes you just need a friend in person with the same problems to hang out with and know that you're not alone! Love you!

sky0138 said...

You are such an awesome human being Reyna. <3

Michelle said...

Perfectly said! And I love Meri's comment: Fake it till you make it...been there done that!
It's definitely the unrelenting care requirements of D that wear us down and burn us out! I just wish people (even some of my extended family) "got it" and I didn't get that feeling that they think I'm just being dramatic...ugh!

Heidi / D-Tales said...

You're reading my mind again. Love you!

Jules said...

I awoke to this post this morning. You inspire. I see that you have an awesome sense of perspective, both short term and long term. You balance yourself with reality and laughter. You are doing a wonderful service to us, the D community, and to your lucky family. Thankyouxx.

Laura @ Houston We Have A Problem! said...

Sweet Reyna - - - as if I was no crying enough from your post I then read the comment from your sweet mom!! This is such a great post --- I feel like it came right out of my heart on to your blog. So many of us feel this way and you put it out there perfectly.

muffinmoon said...

I'm a bit late to the table here and can't really add much other than, yes, it's never, ever ending and hard, hard , hard. BUT how did anyone do it sanely without this fantastic support network we all have in each other? You are a kind, honest, amazing person and I am hugely grateful to have you in my life. We all have these feelings but in all honesty who can sustain them 24/7? Living in the moment with our kids is the best relief. Life must be lived and joy found.
If I ever get to Vermont, I'll be calling in and challenging you to a swearing competition. You'll win, of course, but it'll be fun!
Hugs and love to you.

Sarah said...

Oh goodness, I will definitely be sharing this with others. I admire you and have learned so much from your blog (and am always entertained), and it's so comforting to me when I see that I'm not the only one feeling the way you described here. It always looks like the other Type 1 moms I know are just taking it all in stride like it's no big deal...leaves me wondering if something's wrong with me or I'm weak. We're having some serious burnout issues over here and I so needed to read this and know that I'm not alone in how I feel about D - and all that goes with it. Well said, Reyna. Thanks.

Jonah said...

4 years, 6 months, 5 days ago I was diagnosed with diabetes.

Two and a half years ago, I started on a journey of diagnoses. First I had weight loss and a kidney scare. That really scared me. Then I had polycythemia. Gallstones, which I thought was awful until I was told that we might be postponing necessary surgery because of... Thyrotoxicity with a bunch of incorrect presumptive diagnoses including cancer.
By the time I was diagnosed with neuropathy, I didn't even care.
I've been diagnosed with just as many new things in the year and a half since.

I am way more mellow about blood sugar now. I'm plain old more mellow. I feel like being diagnosed with diabetes made me feel like the other shoe was always about to drop. Then it dropped, or at least gave the appearance of dropping. I got to work out all of my fears and be scared for a while. I cried for a month in fear for my kidneys. I came to terms with the fact that there are some things I don't know and I asked my doctor to not tell me them (such as my current kidney function).

Karen said...

Oh honey, I am sending you a huge hug!!!

The Anderson Chronicle said...

Such a great post! I feel this way so much! All the things I used to do before Diabetes took up half my brain.

Five Bears A-Blogging said...

Thanks for expressing so well for all of us....