Embracing Life & the Child with the Disease

Archive for the ‘D-Blog Week 2011’ Category

To MY D-OC

It’s the last day of blog week and it’s a little bittersweet.  I LOVE reading different perspectives and have met so many new people and it’s exciting.  But my brain is tired with all the writing and emotions.  I might not blog for a week!  But here’s today’s prompt:

What have you learned from other blogs – either this week or since finding the D-OC?  What has your experience of blogging the DBlog Week topics with other participants been like?  What has finding the D-OC done for you?  So buckle up . . . it’s a long one . . .

Ryan was dx’d in December of 2009.  We have lived with d for one year, four months and four weeks exactly. 

When Ryan was diagnosed, we were devastated.  It knocked the wind out of us.  We were expecting some type of emotional issues/illness because of the drastic change in his personality (Click Symptoms for more of an explanation).  But to be dx’d with a DISEASE that had NO CURE that he WOULD NOT GROW OUT OF and was, is and forever will be HIGH MAINTENANCE for EVERY BITE, EVERY ACTIVITY, EVERY EVENT, EVER MOMENT of his life was and still is DAUNTING.

We spent a few weeks adjusting, grieving, learning, grieving, breathing, counting . . . did I say grieving?  And for those of you who do not live with d, you may be wondering . . . why grief?  We grieve the life, the carefree life, that will no longer be.  We grieve that Ryan will no longer have yearly doctor’s appointments . . . he has a minimum of four a year and that’s just to the endo (it doesn’t include a yearly pediatrician well visit, a yearly eye visit, a bi-yearly dental visit and any sick visits in-between).   We grieve that every meal has to be carb counted, sugar has to be tested and insulin has to be given — and that’s not just for every meal.  Carbs have to be counted for every bite, every drink and insulin has to be given.  We grieve that we poke his finger about 10 times a day (we are trying to cut back on this by about twice a day).  We grieve that he has to wear a mechanism on his body 24/7 to not just keep him healthy but keep him alive.  We grieve that even though Ryan does do and eat everything that any other kid does, and I fight for that everyday, it DOES require more work, sometimes MUCH MORE WORK.

And the list could go on and on.  Grief.  It is a process.  It is a long process for D-rents (parents of Type 1 Diabetic children).  It has gotten better.  We are living life well and happy and full.  But there are days.  Sometimes ones that follow other days.  Sometimes days in a row where that grief sets in, the frustration reaches a peak, when exhaustion with the details and lack of sleep knock me on my bottom.  Some days are just hard with d.  And it wins. 

But several weeks into d, I began searching for people.  Real life people who live with this same disease.  People who are further down the road to connect with.  And I slowly found the D-OC. 

Because I was looking for someone to say life isn’t all bad . . . This is manageable . . . It will all be okay, any negative word, phrase, blog, story was hard for me.  I did not want to read those stories then.  I hated them.  That heavy blanket that covered us with the work of the disease was now being soaked by negativity online.  And I just didn’t get it.  I just couldn’t read it.  I didn’t want to connect. 

And Jason told me to start a blog.  A blog focused on the positive of life . . . not the positive of the disease.  In all truth, I still don’t see any positive in the disease itself.  I see positive in the people and in their stories  who live with d and in Ryan.

So I set out to write about our life with d.  To write our journey from the beginning.  To write for therapy for me.  To keep me focused.  To help me vent.  To help me work through some grief and see there is life beyond d, always WITH d, mind you, but it didn’t/doesn’t have to be the center focal point of our life as a family . . . or for Ryan as the person with diabetes. 

And we chose EMBRACE DIABETES. Here and here is why we chose the name. 

I’ve been blogging for over a year.  And I still stand by those early posts of why we chose the name.  But a year into the game, I understand the “negativity” better. 

I get that sometimes you just have to have a place to vent, be heard and be understood.  I get that sometimes there is no way to find the positive in something so negative and the only option is to get through it. When you are faced with a night of seizures, glucagon and a 911 call or strep throat that produces lows that cause lethargy (or worse) in your children and ketones that can cause organ damage that lands you in the hospital or a sleepless night of feeding lows or chasing highs or your child’s playmates running to you for help because your son is face down in the wood chips on the playground who’s hurt himself falling off a slide and is ALSO low enough to need a glucagon intervention or a second child’s diagnosis or a third or – fill in your story here – it’s hard to be positive.  Or how about when you lose friends over Type 1 diabetes.  Some of you think, I would never de-friend someone for this diagnosis.  But it’s happened.  It’s happened to us.  Slowly but surely, they stop calling for you to come over, they stop asking to have play dates, they stop meeting you for dinners . . . for whatever d-related reason . . . they just stop.  Or what about the party issues or exclusions because school or church didn’t know what to do but didn’t bother to ask, so they didn’t do anything and your child was left out, left alone. 

There are lots of things to deal with and overcome.  It is a constant battle.  It is exhausting at best. 

And I don’t mind and am not critical or condescending or view you as wrong for blogging, posting on facebook or sharing in a group about the hardships of diabetes.  I hurt with you.  RIGHT ALONG WITH YOU. 

I.GET.IT.

So blog away, type until your fingers fall off, share until your heart is content. 

But I caution you.  Don’t LIVE there.  I say that most sincerely, with my heart completely in it, standing right next to you, feeling your pain, with my arms wrapped around you, holding you up in support.  Just don’t LIVE there.  Don’t let the grief win.  Don’t let the disease win the war.  We’re going to lose some battles.  But win the war.  Get mad at d.  And then get even!  Grieve for a few days, then open the curtains again and let the sunshine in. 

I want people to know that this disease needs a cure. 

I want people to know that life is hard living with d.

I want people to understand that sometimes I lock myself in my bathroom and have a good, loud cry. 

I want people to understand that sometimes the darkness is so thick it’s hard to not get swallowed up in the “foreverness” of the disease (until there is a cure).     

But I can’t live there.  I can’t do it for me, for my family, but most importantly for my T1 Ryan.

And I write this too long post (as of this moment, it’s 1144 characters) to say this. 

I am CHOOSING TO LIVE as positive as I can considering the negativity of the disease.  I am going to fail at this from time to time.  It really isn’t all glitter and unicorns.  And I hate that my child has this disease.  But as much as I can, as often as I can, you will read positive from me.  I will live with a smile as often as I can, sometimes in spite of it all. 

But I will not be condescending with you who have to vent, who are discouraged, who are scared, who feel alone other than our online friends.  And I will encourage you to use the negative to make you stronger, better – not bitter.  Suppressing these emotions are toxic.  But living there can be toxic as well, and I will encourage you also to blog, share, write and revel in your victories and battles won.  Celebrate your life and/or your child any and every opportunity you can.  It will make all the difference. 

Focus on encouragement when you can.  Encourage those who are down and struggling.  Accept encouragement offered from a fellow d-momma or PWD.  And when you encourage, choose your words carefully and be sure to be sensitive to what the other person is feeling even if you don’t understand, especially if you don’t understand.

Diabetes is about balance.  Balancing carbs, protein, fiber, exercise, sleep, anxiety (yes, anxiety affects blood sugar for you non-d people who are reading), excitement, sleep and stress . . . along with anything else that might be going on physically. 

And so is viewing the positives and negatives of life with the disease. 

To say it’s ALL NEGATIVE kills the dreams of our children, steals the joy in our life and gives them limitations. It’s not where I want to live nor is it what I want Ryan’s present and future to be. 

To say it is or we should be ALL POSITIVE is not only living in a fantastical unicorn world that does not exist, but also sets expectations so high and unrealistic that we are bound to not be able to achieve them, misinterprets the disease and does nothing for advocacy and the advancement in progress towards improvements in care and steps toward a cure.   And quite frankly, it is a lie. 

Things to Ponder:   If we were perfect people, there would be no such thing as grace and mercy.  If we did not make mistakes, we would never know the power of forgiveness.  If we were all the same, we would have no need for one another.  

I know life is hard.  D is hard.  And the task is ever before us.  But let me also share something I heard John Maxwell say today, “If you have problems, you are a candidate for a MIRACLE.”  And ladies and gentleman, I believe in miracles (and angel too, but that’s another post).  In spite of it all, there is HOPE.   

So I want to encourage you today.  Find your balance.  No one can find it for you.   It’s unique to you.  And what you find as balance may not be perfect or right for anyone else but you.  AND THAT’S OK. 

I just sometimes think we all (myself included) need to be reminded we are all on the same side.

I love you D-OC, bloggers, facebookers, secret groupers, lurkers, and the rest.  We’re in this together!  (((HUGS))) XO XO

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A Picture(s) Says it ALL

Diabetes in a few pictures . . . NOT the whole picture . . . just some of this d-momma’s favs.  Some of the GOOD (not the bad and the ugly . . . they exist, but just not today).  Enjoy!!

An Awesome Thing

D-Blog Prompt Today:  Awesome Things.  Today let’s put a twist on that topic and focus on the good things diabetes has brought us.  What awesome thing have you (or your child) done BECAUSE of diabetes?  After all, like my blog header says (Karen’s blog), life with diabetes isn’t all bad!

Well, Ryan is only six.  And we have only been on this d-journey for almost 16 months.  We are a simple family centering our life around family and church.  Ryan hasn’t found his nitch in sports yet (although he is excited about basketball this fall).  He hasn’t won a medal of honor or found a cure for diabetes . . . yet!  So our biggest accomplishments are in the dailies. 

His courage always amazes me.  He seldom ever complains about d — about cleaning his room, YES!  But really seldom about d.  From day #4 of the D-Blogging, Caleb said he disliked changing his pod.  And if I remember right, it was his #1 dislike (Sorry, Caleb and Lo if I’m not recalling correctly, too lazy to go check just yet).  And that is typically the only thing he ever complains about and that’s not even always.  And I think the lack of complaining and lack of unhappiness related to d is a great accomplishment.  I know it probably won’t always be that way.  He, one day, might get old enough to be negative about d.  And we’ll cross that bridge when we get there.  But for now, he still remembers what it was like to be insulin – deficient and have those severe highs and lows, I’m sure, and just feel plain horrible.  And he is somewhat grateful for the dx.  Because now he feels better.

But speaking of awesome things . . . I witnessed one today.

Today was the 1st grade field trip to the arboretum and botanical Gardens and I felt like I needed to go to be with Ryan because the nurse doesn’t go along on the trips.  But I had the privilege of having a little trio of a group that I took care of for the day, or at least part of it.  But before I took my trio and went on our way, we ate lunch.  At a picnic table full of the boys in his class, we did what we always do and checked his sugar.  I was leaning over him helping him to get it done quickly.  And then my eyes looked up to the stares of about eight little boys, watching while chewing.  It all of a sudden dawned on me that they don’t see this.  He’s always in the nurses office when he checks his sugar.  So, I started telling them what was going on.  “His body doesn’t make insulin that changes food into energy.  So we take his sugar so we know how much insulin to give him.”  That was the simplest, quickest way to say something.  Kinda right . . . right?  Much too complicated for 1st graders hearing for the first time.  Not a whole lot was said but just little boys stuff.  Absolutely nothing offensive, often UNLIKE adults. 

But after lunch, we walked all over that garden area.  These three little boys talked about flowers in a way I thought amusing and at times hilarious!  “Are those marigolds?”  One would run ahead and look at the little sign sticking up.  “YES!  They are!!!”  And they would hi-five so proud of themselves!  LOL.  You could tell the teacher had already been teaching and reviewing what they would be seeing on the field trip.  But we walked and ran and played . . . they had a Texas pioneer days exhibit. They ran from little house to little house and romped in the courtyard for quite some time.  I was concerned about Ryan’s sugar with him playing so hard, but he just kept saying, “Mom, I’m good.”  So, I trusted him.  He actually knows his body pretty well.

On the walk back to the picnic tables where we were to meet up and head back to school, Ryan said, “Mom, I think I’m going low.”  I was ready to stop right there and flip open that back pack, but he said he could wait until he got to the picnic table. 

The Amazing Thing starts here.

When we reached the table. Ryan pulled out his PDM bag and began to take his sugar. 

One of the boys said, “Are you going to get that number again?”

Ryan smiled and repeated what the boy said almost laughingly at how he said it and replied, “Yep, I’m going to take my sugar, I think it’s low.” 

Another voice said, “What should the number be?” 

Ryan, “Between 80-150”

“What happens if it’s not at least 80?”

“Today, I’ll get a some candy” (said through giggles).  There were lots of ooo’s and ahh’s and hoots and hollers.

“What happens if it’s more than 150?”

“I’ll push a button and get more insulin.”

Then Ryan looks at me and says, “I’m guessing it’s 72.”  We do play that game a lot, but I think today, he did it for the boys learning around him.

Beep – 70.  The hooting began again, impressed he guessed so closely.  I was equally impressed, as I often at at this game, but not surprised.

A voice from the side said, “You get CANDY!!!”

Two Starbursts it was.  And then he sat and waited 10 minutes. 

As he began to wipe his finger with the alcohol swab and begin the process again, a boy said, “Are you going to check your number again.”

“Yep!”  And here they all came, drawn like a magnet, to see Ryan’s number again.

“Then I’m guessing 120.”  One of the boys in my group called out.

Then the number game began.  About four or five numbers swirled around Ryan, all guesses of his “number.”  Ryan giggled.  I guessed 93.  He guessed 100.  We usually do the winner is the closest without going over, “Price Is Right” style.

Beep – 99.  So on a typical day at home, I would win, but Ryan changed the rules today and yelled out, “I WON!”  And I didn’t question because was in front of his buddies and wanted to look good . . . and he IS GOOD!!

Then they all ran off to play, except for Ryan who was putting his stuff away.  Another momma asked me about Ryan, what he had, when we found out, etc.  I started to explain, but then Ryan cut in and started answering questions, showed her his pod and said it really wasn’t a “big deal, really.”  She was dumbfounded.  She really was great.  Asked great questions and avoided the stupid ones and trying to fix it.  Just listened to this amazing little boy talk very grown up and matter-of-fact about his disease. 

And then he ran off and joined his buddies.

Amazing, really, don’t you think?

A-maz-ing.

Bubblicious Isn’t Free

D-Bloopers is the prompt for today’s D-Blog week post, but my mind isn’t working.  I know we have had many bloopers, but right now, I’m blank.  So, I’ll just share a little story the d-world will completely “get.”

At the check-out at Target, the boys are always begging for candy, gum or the small items they tempt us with like batteries, travel-size antibacterial gel, mini Nerf guns, etc.  All things that we fight with out kids about while piling the never-ending mound of groceries and household items on the belt. 

The boys are gum chewers.  They love gum.  And they don’t swallow it, never have, except for a short-lived bout with Aaron (always my problem child). 

But one day we were in the line and I’m doing my mom-ly duty of unloading my cart while keeping one eye on three boys.  They were eyeing the gum.  One of them (can’t remember if it was E or Ry) picked up pink pack of Bubblicious gum.  What kid doesn’t love Bubblicious, right?  And here’s how the conversation went:

6g carbs per piece

“Mom, Can we have this?” holding up the irradescent pink shiny pack.

“How much?”  (Of course, I was asking carbs per piece and the boys knew exactly what I was asking too.)

“Six.”

“Nope, that’s too much.  Pick another one.  Find one that’s free.”  (Of course, I meant a “free” food = less than 5g carb.)

1g carb per piece

Someone picked up a Trident sugar-free pink pack.

Holding it up proudly, “Mom!  This one is free!” 

“Ok, that’s fine then.” And motioned for them to throw it on the belt.

Then — I just happened to turn to the stare I was feeling.  It was the cashier who had momentarily stopped  scanning.  I know that poor little girl was not thinking free carbs.  And I’m sure it was an awkward moment for her thinking how am I going to tell this crazy lady she has to pay $1.39 for that pack of gum, that indeed, was NOT COST FREE. 

My mean streak did not even bother to explain.  Just smiled and kept doing what I was doing, unloading my cart, watching my boys . . . and giggling. 

And if you’d like to read another check-out at Target story I blogged about months ago, click here.  We live two min from Target. 🙂  Happy D-Blog week reading!!!

From The Lederer5

 
I want to preface this letter with who I am.  I am a d-momma relatively new to this d-life.  I struggle with d from time to time both emotionally and physically with Ryan.  I embrace the life that d demands us to live.  I really do, it was the life chosen for us for whatever reason and we will not just get by and “make the best of it.”  We will thrive, be happy and live full.  And I live in a house of boys where all of life is about a battle, whether that’s light sabres, swords, guns or hand to hand combat, it’s all about the battle or the war.  And lots of days, d is a battle for us still.  Mind you, not a miserable fight.  But a battle for balance in all things.  And this is the perspective I have on my good days that I’m striving to have every day.  So here goes . . .

 

To D from This D-Momma:

When we first became aware of the battle.

You entered our life on December 17, 2009 and changed our lives forever. 

Actually, you showed up long before we realized you were there.  You zapped his energy.  You made him sad and irritable. You made him anxious to be away from me and his daddy because he knew something was wrong. He was lethargic, seldom smiled.  You stole his joy. You made him sick.  So sick, in fact, that we were afraid.  You made doctors believe he had organ damage and they were dumbfounded that you had not succeeded at that.  For a time, you took over his body completely.

On December 17, 2009, the dx came. You were there in his body, and you were there to stay.  And that’s when we became aware of the war we were facing.  But boy, did you choose the wrong family to pick a fight with. 

You chose Ryan, the smartest, most regimented and habitual and literal five-year-old ever who possesses a courage and maturity that some adults can’t muster when faced with a lifelong challenge.  It’s hard to discourage him or trip him up.  He is a tough competitor.  He will not go quietly.

But I wonder how surprised you were to find out that you were not just battling Ryan, a then five-year-old.

Ryan's Daddy

You were also battling Ryan’s Daddy, Jason, who forever researches for new and innovative technology and keeps up with the progress being made toward a cure that will rid you forever along with being a great d-dad always involved in the dailies of Ryan’s care.  Daddy is his provider, from finances to insurance, and his strong protector.

Ryan's Big Brother

And you picked a fight Ethan, his big brother, then 10, who eagerly wanted to learn about you so he could help defeat you.  He wanted to understand how you worked and be an active participant in giving shots, treating lows and working off highs with activity. And when we are not in the safety of our home, he is an avid defender and encourager.

Ryan's Baby Brother

And you also were going to be up against Aaron, then 4, his baby brother who would be very conscious in supporting Ryan in his diet, not eating when Ryan couldn’t, being patient with the early on rigid schedule and always asking if Ryan “had enough carbs for that” and was and still is the constant comic relief when dealing with you made life stressful.  

Ryan's D-Momma

But you also met your match with me.  I am stubborn.  I am determined.  I am a being of structure and order.  I am a fighter.  I am that mother bear who will protect and defend her bear cub to the death.  I am determined that you will NOT steal his childhood.  And I will keep you under healthy control for Ryan without making him feel that you stand out in his life above everything else.

Let me tell  you about the lifelong war you have with the five of us —

You may have entered our life . . . but you will not control it.

You may interrupt our days . . . but you will not mandate our time.

You may beat us down . . . but we will get back up.

You may be able to discourage us . . . but you will not steal our joy.

You may win a battle . . . but you will not win the war. 

You may be with us all the time . . . but you better get use to being dragged along for the ride.

We will go to ballgames and eat cotton candy.  We will go to birthday parties and eat cake and ice cream.  We will go on vacations and swim in the ocean all day.  We will still eat pizza and pasta on a regular basis.  We will Trick ‘r Treat.  We will make sugar cookies with home-made powered sugar icing at Christmas.  We will have candy in our Easter baskets.  We will let him do all other things that little kids do even though it requires a little more work. 

And regarding Ryan . . . You will not stop him.  You will not keep him from fulfilling his dreams.  He will win.  He will succeed.  He will have nothing less.

And nor will I.  Yes, you picked a fight with the wrong boy, with the wrong family.  You may always be a part of him but you will never have him.

If necessary, I will not sleep. I will regularly do sugar checks.  I will figure out problem foods.  I will carry a meter and snacks and juice and icing with me at all times.  I will forever crunch numbers.  I will be vigilant with his activity.  I will educate others so they will know what to do and how to treat him and YOU. 

And he will have a good life.  A happy life.  A full life. 

And we will see it though to the end . . . all five of us . . . Together.

And in the end, we will be better, stronger, because of you . . . in spite of you.

So buckle up and enjoy the ride!

Sincerely,

The Lederer5

The Lederer5

Same-Different, Do I Fit In?

I’m a d-momma , a fairly green one. We’ve only been on this journey about 16 months and almost five pumping with the OmniPod. So I love my d-moms, all of them. The veterans. The piers. And the newbies. They all have their place and purpose in my life. We are same-same. I heart you.

But as of recent, I am beginning to really learn from and love T1 adults in the DOC and those that are appearing and re-apprearing in my life. They are “same-different” in my book. .  They live, successfully, what I really fear the most . . . the unknown . . . the what-life-will-be-like for Ryan as an adult living with this high maintenance disease. In truth, I do not “know” many of them in the DOC. We do not really talk, mainly just the occasional tweet. Part of that is because I think, what good would I be for them?  They’re the pros.  And I often think of myself as inadequate with them.  My questions, in my mind, would all seem so juvenile in a sense.  Now mind you, NONE of them have made me feel this way.  It’s just in my mind. 

But I cyber-stalk them in a sense.  I read their blogs and seldom EVER comment.  But I learn.  I make mental notes.  It’s like sitting under a mentor and just absorbing like a sponge.  My heart aches for them in the difficult times, but where I stand with that emotion still boggles my mind.  When I hurt for them because I see and feel the difficulty of the disease, it’s not like the empathy I feel for my d-moms.  It’s almost parental.  Like I imagine Ryan there, as an adult, experiencing that struggle, discouragement, hurt, anger, weariness and I want to shoot out parental encouragement and love to them.  But I don’t want to appear condescending.  When in all actuality, I look up to them.  So I do nothing . . . but care. 

There are a few, however, that have impacted my life although I am sure they are not aware.  I am nearly obsessed with reading and learning from T1 adult MEN because that is what Ryan will be.  And often long to connect with them on a richer level just to learn from their life.  I so admire them.  But, again, I’m just a momma of a 6-year-old.  These men have a life, often a wife and sometimes children.  I don’t want to interrupt (or in all honestly and vulnerability, be rejected, because it would hurt my feelings that I wear on my sleeve – LOL, kinda).  But here’s a few nuggets I’ve gotten from T1 bloggers along the way.

Michael of The Diabetics Corner Booth commented and then re-tweeted about reading my blog post when I talked of having coffee with a fellow d-mom and the difference coffee with someone who “got it” makes.  It was encouraging to me to see that a T1er was just reading my thoughts, my life. I loved that he was drinking his own Starbucks as he commented.  Sometimes it’s just that ever so simple connection.  Raising my white chocolate mocha with extra whip cream to you, Michael.  Cheers!

Tony of Blogging Diabetes really gave me a catch phrase that I have referred to so many times when my hope gets discouraged or squelched by negativity.  I was just reading in on a rather heated debate (not bold enough to be a participant) on Twitter about believing a cure is in our future or living in a cynical state that there will NEVER be one.  Tony tweeted, “Hope for a cure. Live like there will never be one.” It hit me like a brick wall.  That’s the ticket!  That’s how I choose to live.  In the positive light of HOPE but teaching Ryan and caring for Ryan as if there will never be one so he is equipped with the knowledge and the tools to live a long and healthy life and do it in such a natural and routine manner that it is not grievous or energy-zapping (as much as you can living with D).  Thank you, Tony, for just sharing that perspective. 

And in recent days, Allison of Lemonade Life gave me some peace in questions that have been swirling around in my head about the high maintenance intense control approach to Ryan’s d-care.  I want so desperately to get back to a place where Ryan isn’t checked two times a night, or even once sometimes (totalling about 10 times a day).  But I felt like a bad mom even thinking such a thought.  I was so encouraged by her life experience in this matter that answered some questions and gave me a lot to ponder as a d-mom, again VERY green, and try to work toward a place that is somewhere in-between.  You are someone I look up to, Allison, because that wasn’t an ever so pleasant conversation but you hung in there, stood your ground in an ever so personal debate.  I know it wasn’t a fierce battle, but you took it all in stride, like a champ and I learned from it!

And these are just three, but I read more and more have impacted my thinking and perspective. 

I applaud you, T1ers, who put your life, your experience out there.  You are so vulnerable, sometimes completely naked in your writings, ranting, etc.  And I appreciate that.  You are making a difference. 

Now if I could just get over my inhabitions and just connect with you, it would be d-perfect!

So I guess I would classify myself in relation to them as a silent support-caring cyber-stalker until I can feel comfortable in my own skin around them.