Embracing Life & the Child with the Disease

My Community

I am a social person.  I love people.  I love friendship.  I take friendship very seriously.  I strive to surround myself people who feel the same.  Friendship has never been about where you are in life, what you have or what it can do for me.  I value people for who they are inside rather than status or stature.  I want companionship that is real and genuine, through the “thick and thins” of life.    

I had a need inside of me for friendship/community, once the December D dx set in and I grieved for a bit (and it IS a grieving process), to develop a T1D support group, and someone suggested we go online.  Jason and I had read blogs, investigated social networking sites and places like JDRF trying to find where to begin.  Jason decided I needed to start blogging knowing how therapeutic it would be for me, but encouraged me to take it from a positive perspective.  And being as “green” as we are, he thought it would be great to blog the journey, from our beginnings, and describe how we were going to EMBRACE diabetes, because it is now a part of our life, and bring D along for the ride but not let D be the navigator.  So, I started blogging.  And I began faithfully reading other d-blogs too.  Jason started a Facebook group as a way for our FB friends to join and keep up with our journey and a place where others who are where we are could join and connect with us.    

Almost instantly, I connected with Leighann’s blog .  She has a wonderful site that is user-friendly and packed full of great PRACTICAL information for new d-moms that helped me connect with Rachel, who became my first d-mom friend. Rachel encouraged me to get on Twitter and raved about the d-community there. So I did. And there I connected with Lorraine, Emily, more with Leighann and so many others who were interested in me because we shared that common ground . . . D.  But it was on Facebook where I really started connecting.    

You must understand that I have had a wonderful support group dealing with D from my family, on both sides, who have been absolutely amazing.  I have friends who have loved on me, listened to me cry and/or be angry, prayed for me and with me, helped me with recipes, paid special attention to my boys, sent countless Facebook messages and emails and made phone calls . . . and all of that has not stopped . . . it continues because they know that D is not on a time-frame.  It does not sleep.  It is with us 24/7 and will be until there is a cure.  But there is something to be said about . . .   

EMPATHY.  The “I know because I’ve been there.”  More simply put,  the “get it” factor.  And the more I connect, the more I want to connect with mom’s all over the country and in other countries that are where I am or a little further down that D-road and are willing to go through this WITH me and do it TOGETHER.  There is a bond there that is almost instantaneous.    

We celebrate together.  What do we celebrate?  Small victories like:   

  • a “boring” day of good bg readings in range
  • getting up with the same bg as the night before
  • a successful dosage change
  • a swim without a low
  • 133, 101, 97, 112 . . . mealtime and bedtime numbers IN ONE DAY!!! (Ryan’s actual Monday)
  • a birthday party without an uncontrollable high two hours later
  • a successful site change
  • receiving a pump
  • a successful trial CGM
  • the positive attitude of our T1D children (who are ALL heroes, I might add)
  • a good A1c “report card”

We cry and share one another’s burdens:   

  • multiple lows in a single day
  • inexplicable highs
  • when our precious T1D children have weary days dealing with D (because it is ever with them)
  • a stomach virus . . . MUCH more complicated and dangerous for our kiddos
  • an ignorant, often hurtful, comment from someone who knows absolutely nothing about TYPE 1 diabetes, but thinks they do because they are familiar with TYPE 2 diabetes
  • a high A1c  because managing diabetes is just hard
  • the constant struggle with insurance, endos, pharmacies for needed supplies for survival & limited funds
  • when sites get infected
  • when we’re tired of “poking”
  • sleepless nights
  • when that emotional wave hits and we realize, once again, that our child has a disease that needs a cure
  • the scary low, the absent gaze, the seizure

We laugh together  . . . D-style:   

  • “It is quite embarrassing when syringes fall out of my pockets in public.” ~Allison
  • “For all you DexCom users out there. If you were ever wondering if rice works to clear out the water from a submerged receiver, I can say, from experience, that it does indeed.” ~ Lorraine
  • “Would someone please tell me why I have three bags of powered sugar in my pantry?” ~Tina
  • “Had a gluten-free pancake mishap in the kitchen this morning. Not exactly sure what went wrong, but I’m pretty sure these things would bounce….I think I literally reproduced the chemical make up of rubber.” ~ Wendy
  • “Good Friday morning FB friends. The crazy sugar fairy came again last night. Could you pass another cup of coffee please.” ~ Cameran (This one is not necessarily laughable, could just relate to the “sugar fairy” part)

And we share burdensome life changes:   

  • 3AM bg checks
  • constant carb counting
  • figuring carb to insulin ratios
  • quarterly endocrinologist appointments (or every other month for some)
  • loss of spontaneity . . . having to plan for every meal, every snack, every bite and every activity
  • the ever present back pack, bag or carry-along that holds all of D’s necessities
  • new purse items:  juice box, candy (i.e. skittles, starbursts, lifesavers), tube of gel cake icing & glucameter

And the lists go on . . .   

D-Mom’s are my biggest cheerleaders and encouragers when it comes to D, and I know there always there, at the computer, waiting to help, support, discuss, cry, laugh and (((hug))) whenever there is a need.  All I know is that I am so blessed to have taken the time and the energy to connect.  It has been a blessing . . . a true God-send . . . a survival technique.   

But not only that . . . without seeing these women face to face, we have found a way to connect heart to heart for a lifetime!   

Here are some of my D-Mom Friends (not ALL of them)

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Comments on: "My Community" (9)

  1. You’re making me cry as I read this.

    Though we know a few families locally, it’s not like I am going to call or e-mail them at all hours. But it’s so easy to hop on Facebook or Twitter and find a sympathetic ear, answers, or even laughs when you need them…even at 2 am!

    The support of others who “get it” is invaluable. I feel like the knowledge and advice of other parents who are in the trenches is priceless.

    I know I have personally learned so much from all of you. I just wish I had found all of you sooner than I did!

    Hugs and lots of kisses,
    Leighann

    • Oh, Leighann, I so wanted you to read this and know that it came straight from my heart. Your blog is not only good, it has the potential to be life-changing. I so appreciate it and you taking the time as I see you are busy with other blogs and such.

      Hugs back at ‘cha!
      Amy

      • Betty Schudy said:

        Amy
        As I read your story of how life has changed since dx for your family, it is very telling of how strong and courageous you are and so very important for others to learn from you.

        You are truly a beacon to many who are searching frantically for an answer.

  2. Thanks so much for the shout out! I have only been online with D-Moms for a little while but I have already made some life long friendships! I’m not sure why I didn’t think of it earlier. Sometimes I think it would have helped to have more people early one, but It really took six months for it to sink in for me so I guess I came at the right time. 🙂 Thanks so much for your friendship Amy! (((hugs)))

  3. Kim Green said:

    Thank you so much for including me in on this one and it is SO TRUE!!! I would be so lost without my T1 Facebook moms… my “sisterhood”! lol

    Love, Kim

  4. **WIPING TEARS**

    Thanks ALOT…sniff…sniff….

    It means so much when I find a connection with another mother. I stayed inside a shell for a LONG time after Addy’s dx. A LONG TIME….I didn’t know how to reach out or who to reach out too.

    I dealt with anger at a level that seemed completely foreign to me….depression….

    Oh, but what a blessing it is to have crossed paths with you!!!!!!!

    What a beautiful picture collage you made.

    Thank you for including me in this heartfelt message.

    I haven’t figured out Twitter yet. I’ve tried unsuccessfully. I just can’t seem to get the hang of it….but then I’m so busy on FB and trying to keep up my blog….not sure if that isn’t God’s way of saying NO MORE!!!!

  5. Lorraine said:

    Huge smiles. 🙂

  6. Hi Amy-

    Your blog really touched me. Our son was diagnosed in Feb of 2010 and it has been quite a journey. I am heart broke he has this disease, yet I am so grateful to have met an amazing group of families. I have never felt more welcomed and received so much help. Many d-families have made this experience so much easier. Thank you for your post.

    April

  7. Our oldest son was recently diagnosed in April. It has been a life changing event and I have also felt the loneliness factor that comes with it. In an attempt to have a place to go to connect with other T1 moms, I created a group on FB entitled, Joining Together As Mothers of Children With Type 1 Diabetes (pretty sure that’s right). 😉 Please feel free to join ~ the more the better. Your post was GREAT! Thank you.

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