Thursday, September 1, 2011

The Stuff They Don't Tell You: A Guest Post

 Today  I have a guest post from Tracy Brokmeier, MOM of the Diabetes Dude!  Tracy wrote this incredibly inspiring piece on facebook... and I just knew that I wanted to share it with all  of you.  Because it is just so incredibly true!  

Thanks, Tracy, for letting me post your words here!  You, my friend, are awesome! 

The stuff they don't tell you.

October 3, 2007, D Day.

Not THE D Day, but OUR D Day.

The day Diabetes decided to come into our lives and change everything.


I'm not going to fully go through Noah's diagnosis story, because many have already read it, and if you haven't, I refer you to his website, www.thediabetesdude.com .  To summarize, we went through a long battle for months with his pediatrician about what was wrong with him.  They kept telling us he was fine or diagnosing him with something else, but the latest diagnosis and treatment never seemed to rid him of his symptoms and he eventually wound up in DKA at Children's Hospital of Boston where he was finally diagnosed with Diabetes.

When your a freshly diagnosed D parent, in the hospital with your little one, your head is completely spinning.  The nurses and doctors have so much to teach you in so little time.  You leave there with lots of information, stacks of paperwork, many of which you will never have the chance to go through, and something just short of a Rolodex of new numbers and contacts to add to your address book when you get home.

However, there is also the stuff they don't tell you.

Yup, you left the hospital without very important D info, I guarantee it and I will stick my tongue out at you here.  :p

The stuff they didn't tell you is just as important as the stuff they do tell you, only you have to find it out on your own.

For me, the stuff they didn't tell me was the huge change that Diabetes would make on my family.

They didn't tell me that I was going to go home with my D child and have endless sleepless nights, not just because of highs and lows, but because of the emotional strain it puts on a parent.  I constantly find myself waking up in a panic thinking "what was his number before he went to bed and was it enough for the night".

They don't tell you that you may one day wake up to find you've slept in a little and you completely freak out as you run to your child's room, tripping over their toys, just to be sure that they too just wanted to "sleep in".

They don't tell you about the days when you will feel generally sad for your child because they had to miss out on a sleepover because you aren't comfortable with leaving D up to another family.  Not that you don't trust them, you just wouldn't want to have to give that huge responsibility to anyone else.  Let's face it, D sucks, but it's your life so you deal with it.

They also don't tell you that D will effect your other children in a way you may never know.  That the littlest ones in your family will also learn to count carbs and weigh and measure food, not because they have to, but just out of habit because they too want to help their older brother or sister.

They don't tell you the emotional stuff that D has on a sibling either.  The fact that the siblings want to do anything they can to help the kiddo with D, but are also torn because they somehow wish that one day, their life could just be, well, "normal" again.

They don't tell you that D is going to steal the lime light, almost always, the recitals, the concerts, the important moments at school, the holidays, the vacations, and the birthday celebrations, not just of the kiddos with D but the rest of the family too.

They don't tell you about the strain that D puts on a marriage, between the financial stuff that goes with D and the emotional stuff.  Not being able to have time for just the two of you, because somehow D always seems to make it's way into the conversation.

They don't tell you that you are going to forget telephone numbers and dates and other important information because D wants to take over your mind with carb counts, blood sugar readings, and appointments.

 The most important thing, to me anyway, that they don't tell you, that every D family should know, is that you need support.

Not just support from family, but the support of another D friend, or better yet, a D family.  I can't begin to explain the feeling of knowing that someone else "just gets it".  I truly love the fact that every member of my family has been able to find a friend that "just gets it".

My D kiddo has friends with D so they both know what each other is going through.  I don't have D so I could never really know exactly what he goes through, but it warms my heart to know that he has someone he can talk to who does.

My other kiddos have been able to find a friend in a D sibling who understands those days of just wanting a little normalcy without D stealing their moment.

I love the fact my husband and I have been able to find other D parents that we feel comfortable enough to talk to at any time.  I love that with them, I know I can talk about pretty much anything from regular kids being kids stuff to D stuff, to parents of D stuff.  They have my back.

Everyone deserves to have that D friend, their counterpart of another family, that will understand it.  I love my friends without D but I love my D families even more.  It's a bond that nobody will ever understand unless they too have to endure their own D Day.

So to close, I would like to say that today, I punched D in the face and kicked him in the groin, not literally of course, but I feel like I beat him, at least for today because I found out stuff about D that they didn't tell me.

  I won today D, so there!


Home Team: 1 Diabetes: 0


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10 comments:

  1. Tearing up. What a wonderful post by Tracy. The words rang so true for me as well. xo

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  2. What...are you in my head or something?!?!?

    I know we all feel like this, and even though I'm a stalker more than a poster these days...I sure do appreciate everyone being out there! So, thank you for posting even when I don't and thank you for being honest and raw and for this great guest post!

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  3. I am going to have to give my mom a call and tell her "thank you" after reading this post.

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  4. What a great post and oh so true.. Thank you for sharing this.

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  5. Def tearing up over here. It's so true. They don't tell you all those things. We should make a new diagnosis book to help those new-d's and let them know what's in store for them!

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  6. This post is so refreshingly honest. I truly felt that I was reading my own personal thoughts. So, my daughter was diagnosed 15 months ago and I haven't slept even one night through the night since then. I am beyond exhausted. Can someone who has been doing this dance for longer than me advise? Is this what I'm in for until she goes to college (in 10 years)? And then what? Who will check her in the middle of the night then?

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  7. Beautifully written...I think these are every D-mom's thoughts. Thank you for expressing them so well. I know someone with a newly diagnosed D-child and I asked my husband if I should mention to her that when they tell you in the hospital that you only have to check your D-child at 2am for the next week...they are so lying!! We haven't had a full nights sleep in almost 3 years...our D-day is 10-2-08. But, I decided not to tell her because I think she needs that hope to cope through this first week or two.

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  8. Right on target! The greatest blessings after my daughter's dx was the support of the d-mama who lives across the street and the fact that her son, my son's best friend, is support for my girl. They text each other and share their T1 experiences. D-mama and son even brought a care package of juice boxes, 15 g. treats, etc. when they learned of Kate's dx. I still can't believe that two kids on the same block could be dx'd with T1...but God must have had a plan when he led us to this house.

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  9. My daughter has been dxd 2months now. After 2wks in hell I started searching online to see if there were others with kids who had Type1. Let me just say oh wow I was so shocked there's a whole community. Yep soo much is left out at diagnosis. I'm so glad I found the DOC because without all your guys information I don't think I could've made it through these 2 months.

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  10. Yup, you've nailed it. And I'm tearing up. I hate that feeling of sleeping in and wondering. And asking the question of 'do I test? Is he sleeping or is it a coma? Checking for that rise and fall of his chest.
    We do what we do cos it needs to be done.
    But we do it. Every. Single. Day.
    Thanks for sharing. And for making it okay :)

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