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Monday, January 13, 2014

How can I help?

Every so often I get emails from extended family members of newly diagnosed kids. Sisters, uncles, grandparents, and sometimes even friends. Their stories are all different, but in every email I get the same question; how do I help the parents? What can I do?

When Elise was diagnosed, we didn't have any help.  It was awful.  People who we thought were friends and our support system were nowhere to be found.  Over 5 years later it still hurts and I fight major feelings of bitterness towards these people.

So to the ones who care enough to ask, here is my two cents on what you can do to help your friends or family maintain their sanity.

Go See Them
Our 5 days in the hospital were pure misery.  They had Elise in one of the metal cages, er cribs, which she hated, so she spent a lot of time sleeping on us on the sofa.  The room was tiny and the only time the playroom was open seemed to be when Elise was napping.  We ended up eating the food we ordered off the hospital menu for Elise (all they had was grown-up food, with a few selections of baby food).  We were overwhelmed, tired, hungry, sad, and lonely.  Seriously... if they are still in the hospital, go see them.  And for the love of all that is holy, BRING FOOD!

Educate Yourself
This is a good place to start.  This link also has some great info.
Fred and I had to attend classes at the hospital a few weeks after Elise was released.  Unfortunately, we had to attend separately so one of us could be home to look after Elise.  As I sat there alone, I kept thinking how great it would be if someone had come with me.

If you're crazy enough, learn to count carbs... I had a friend whose friend's daughter was diagnosed.  She wanted to bring dinner to her friend, complete with carb counts, to make it as easy as possible.  I helped her out and thought how amazing it was that she wanted to help in that way.

Tell Them 
You know what the most UNhelpful thing you can say to someone going through a crisis?  "Let me know what I can do to help".  I bet you're wondering what is so awful about that, and I'll tell you; it puts the burden on them and takes it off of you.  

Chances are, your friends/family are so overwhelmed, scared, and tired, they don't know what they need.  The best thing for you to do is tell them how you are going to help; bring a meal, offer to tidy house for when they get home from the hospital, do some laundry, walk their dog, make grocery store runs. Don't ask; tell. 

One of the best things a friend did for us when Lucas came over a month early, was to tell me that she was going to stay with me at the hospital.  My Mom couldn't get here for a few days, and Fred needed to be home with Elise; leaving me all alone at the hospital, recuperating from a c-section and with a newborn in the NICU.  I was so scared and overwhelmed, if someone had asked me what they could do, I wouldn't have known how to answer that question. She was a life saver and I am so thankful for her.

Don't Forget
After the initial crisis is over, a lot of times people move on and forget that anything happened.  Your life may have moved on, but for the months (and even up to a year) following diagnosis, your friend/family may be struggling.  Check in on them from time to time to make sure they're doing okay.

Don't Ask Stupid Questions/Say Stupid Things
They don't need to know about your aunt who lost her leg because of diabetes, or a friend who went blind. See this video for further clarification. 

Listen
You may not 100% understand what they are going through, but your friend/family need someone to talk to; especially if they're not part of the DOC (Diabetes Online Community)  or some other support group.  Be there to lend a sympathetic ear.  Even better, encourage them to find a support group.  There's nothing better than being around people who "get it".

Of course this list isn't exhaustive and may not be pertinent to every situation, but the fact that you're here, reading this blog post tells me you're already a good egg. 

On behalf of every parent of a T1, thank you.

8 comments:

  1. Fabulously Wonderful!
    Shaking my head in agreement the whole time!!!

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  2. SO true about the "let me know if there's anything I can do" line. I know they mean it with a good heart, and would do anything for you if you asked, but I'M not going to ASK. True to just say, hey, I want to bring you supper, is tonight Ok? Or, by all means, when they want to talk about how difficult it is to count , bolus and recheck and correct...try your best not to let your eyes glaze over because you don't understand and you don't want to. They are learning, too. And it helps to talk about it. Listen and learn. You'll know how to help them better if you do.

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  3. "Don't ask, TELL! "

    SO very important for sure! No one likes to ask for help, and at a time like a medical diagnosis every little "normal" part of life (like making dinner) seems overwhelming!

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  4. WOW! Agree!

    I loved how my friend Catherine would listen to me worry post-diagnosis. It was summer. We were watching our kids swim at a hot outdoor pool. I was very worried all of the time. She'd ask lots of questions and say encouraging things like "holy shit" and "that fucking sucks." It made me happy. I love her.

    This post inspired me to write to a friend whose spouse died about a month ago to say "I would like to bring you lunch on Wednesday." I usually feel like it's too forward to say a specific thing like that, instead choosing to tiptoe around the person who, I assume, I will be bothering with my delicious soups and salads. Thanks for making me see the light.

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  5. Such a great post that is going to help so many! Your such a blessing to me and those that will find this in their time of need. xoxo
    ...the metal cage er crib brought back so many memories as well as the playroom, no babie food and in our case no pacifers to be found in a children's hospital no less!

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  6. dude this helped ME for the next time i hear about a dx. thank you!

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