Embracing Life & the Child with the Disease

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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Comments on: "To MY D-OC" (13)

  1. I wholeheartedly agree. Balance is key…whatever balance means to you.

    I can’t live “there” either.

    XOXO

  2. This was beautifully written. You have touched on what we all have felt at some point in time. Thank you for expressing the things that I have not yet been able to put into words myself. <>

  3. WOW…and I am thinking of “going there” too today. I still haven’t written my post … I am such a “blogcrastinator”

    Anyway, I agree. I am a very upbeat person and was sad when “D” entered our lives. I could hardly operate the computer at that point in time…I did find “Shot In The Dark”…but was unable to comment b/c I didn’t know how to make a “profile”. I gave up.

    Then I came back to the DOC a couple of years later, unbeknownst to me…there was a whole world of D Mamas out there. I would have been happy to know, in the beginning, that it was OK for me to be grieving…I thought something was wrong with me…when at 1 year, I was still struggling.

    I think a blog is a place where some people totally vent and/or perhaps are seeking support and so the “negativity” comes out there…same for FB…they may need love and support and acceptance…not to be stifled by the “ostrich” of “positivity”, so to speak.

    Your message is strong and sound…DO NOT LIVE THERE (if you are able). I did live there for a year…it sucked. LOVE YOU.

  4. We all go through seasons. I have to admit, when I am having a really hard time, I can’t read certain posts. I only sink deeper when I do. For my sanity, I either stay away or gravitate towards certain blogs.

    On the other hand… when I am in a good place, I feel it is important for me to offer my support and love. Just like others have done for me.

    I love this community. If you need a break they welcome you with open arms when you come “home”. When you triumph, they are here to cheer with you. In the words of a Ninja… it is “awesomsauce”.

    There is ALWAYS someone who is the same.

    WONDERFUL post Amy… I couldn’t have said it any better myself. (((HUGS)))

  5. hey dearie 🙂 always good to read your thoughts which show us your heart. wish we were closer to have visits! love you friend.

  6. We well put.
    It’s important for the DOC to be a place where people can be honest with what they are dealing with find support. Where we can lift people up when they are down and can find the same when we are down.
    Totally agree that we shouldn’t get stuck in a place of negativity. Her’es to ‘getting it out’ so we can move on!!

  7. Not being a d-mom, but a d-grandmom, I would NEVER insinuate that I know what you d-mom’s are going through! But I have a few comments from the side of the mother of a d-mom! First of all, I am so proud of your words in this blog! When Ryan was diagnosed, I could not tell you “it is manageable, that life isn’t that bad”…because I had no idea what your life (or Ryan’s) was going to be from that moment on. But in the year-plus of his dx, I have watched you and Jason meet so many good people that live what you live and “go the course” with you that can be empathetic and supportive with knowledge that helps you get through the rough and worrisome! But my mom-heart has pride and hope in the fact that I know how YOU have reacted and dealt with this life-changing disease your son has been given. I know that as Ryan growns into a strong young man, he will be able to read every word you have blogged and will understand why he “embraces” his diabetes as a well-adjusted PERSON, who happens to have diabetes! I am so proud and thankful for the brave, hopeful and supportive d-mom you want to be to others…and are! My arms of support will always be wrapped around you and will NEVER leave you. In you and Ryan…”my cup runneth over!” With eternal love and support, Mom

  8. Well said… I try very hard to live my life in the middle of this crazy teeter-totter, but I also know I will have my up days and my down days. All you can do is be okay with that, not beat yourself up for feeling that way, and hopefully find your way back to the middle again.

  9. From a person with diabetes, I think the balance is so important. If you show Ryan too much that you hate diabetes, he could interpret it as you hating part of him. Diabetes totally sucks but it sounds like you are doing a GREAT job with your son!

  10. don’t live there…great words to live by.

  11. Very well said, Amy. You’ve got it absolutely right: balance is key. There is a lot of negative, but it’s how we respond and focus on those situations to turn the negatives into positives. That means full, happy, success lives despite diabetes. And that is what the DOC has helped me gain, a sense of community and strength that I really didn’t know I needed or was missing until I found it. So, here’s to a balanced D-Life to you all on that end!

  12. Great post!

    Blogging about life with D isn’t like other types of blogs. Take a recipe blog, for example — you can’t tweak it to suit your needs. You can’t add cinnamon instead of nutmeg and eliminate the salt altogether. This is the author’s experience and no one else gets to write that journey.

    In 3 years of blogging, I really can’t think of one person who found themselves in a rut they absolutely could NOT pull themselves out of. I’ve seen lots of ups and downs with these people. I choose to believe they’re kind, loving, tenderhearted individuals who give and receive support freely…and not out to intimidate, instill fear, or bring others down.

  13. Denise Arnashus said:

    So well said Amy, I have found strength in the d-community but I have also been guilty of avoidance due to the exhausting emotional explanations regarding my sons diabetes. All the questions that drudge up so much & the people asking them don’t care about us but have so many useless solutions to offer. Balance is so important, & so is positive mental attitude. If there is anything I have done right is teach my son that he can do anything. There will be certain steps we need to take to get you there, we love you believe in you.

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