The SUM of all our parts
I was talking to sweetstuff about her feelings regarding wearing her
pump again. She had some complaints about it being in the way when she sleeps
and being so bulky (I think she needs to see some of the first generation pumps
that pwd wore back in the day).
She still has concerns about other students seeing the pump and asking
questions or just simply looking at her funny. It’s interesting she doesn’t
mind talking about diabetes, what she has to do to manage diabetes, and
teaching others about diabetes, but she doesn’t like people she doesn’t know
knowing that she has diabetes.
She isn’t shy about performing her award winning copyrighted song
(proud mamma has to brag sometimes) in front of a crowd of strangers or the
entire grade school she attended and even asks to come with me when I present
the Kids Walk to Cure Diabetes to other schools – just so she can perform, but
hates strangers looking at her funny when she tests her blood sugar and hates
how visible the pump is.
So it was during this conversation with her that I explained that no one
is just one thing. We are a SUM of all our parts. Diabetes is part of who she
is. It doesn’t have to define her but will always be a part of who she is. Even
after there is a cure – having HAD diabetes will still be a part of who she is.
I explained that her experiences both good and bad are a part of her.
How she is smart, funny, witty, pretty, stubborn, sarcastic, sassy and loving
and how all those things are a part of her. How the fact that she is the oldest
of three kids and the only girl is a part of her. How she is half Lebanese is a
part of who she is. Her passion for art, music, theatre, and animals are all a
part of her. She is the SUM of all her parts.
I invited her to own her diabetes. To be an advocate. To educate others.
To love who she is with all her parts – she doesn’t have to love diabetes but
to understand it plays a role in who she is.
She seemed better after our tête-à-tête but I know she will still
struggle with it. Maybe not again today, or even tomorrow but again. I will
hopefully always be able to talk her through a difficult time but as she grows
I hope she finds the same support I find in knowing other pwd. There should be
a tween twitter – she would like that so much.
I hope she finds that support, too! I feel like she'll just "grow into her diabetes", like I did. For several years I sort of hid my diabetes from strangers. I just didn't like bringing it up to people I didn't know. Now I'm an adult and I want to shout it from the mountaintop lol! I can now say I embrace my diabetes and want to help educate others. I think your sweetie will get to that place someday. :)
ReplyDeleteThanks for the comment Kristina. I hope you are right and she will "grow" into it. Being a sixth grader is hard by inteslf and having something that makes you different isn't easy.
ReplyDeleteA week from now she will be performing a song she wrote about diabetes at a JDRF conference. she isn't the least bit nervous and thankful for the opportunity to perform and share her song. She hopes that one day she will be able to share it with many others. She just doesn't like sharing it with kids at her school - stupid mean girls are not always nice to my dear daughter. Cheers friend.
Christina,
ReplyDeleteI don't have diabetes, but THIS: "It’s interesting she doesn’t mind talking about diabetes, what she has to do to manage diabetes, and teaching others about diabetes, but she doesn’t like people she doesn’t know knowing that she has diabetes." resonated with me SO much.
I was diagnosed with asthma when I was sixteen (I'm twenty now). I am totally fine answering questions, and I LOVE advocating and connecting with people. I'm fine with the management stuff as long as nobody is paying attention, but unless it's absolutely necessary, I don't want anybody SEEING what I have to do to stay healthy. It's totally crazy, but it seems like a lot of us who have chronic diseases have the same perception--we're cool with advocating and educating, and explaining, but we don't want anybody to see us potentially in an off moment and struggling.
It's a tough balance, but if I know anything about PWDs, it is that they are AWESOME. Sweetstuff WILL figure it out, and figure out better what her approach to the whole thing is in time. And the only way to figure it out . . . is to keep rolling on the journey.
Thank you for sharing your struggles too. I can't imagine how it must feel to wonder if others that see a person with a medical condition see the person as broken. At least that what my daughter worries about. She doesn't believe she is broken and doesn't want pity or sympathy. I think she doesn't mind answering questions because if the person asks then they don't pity her, unlike those that stare and them give her the aww poor puppy face. If I can be half the person my daughter is I will be happy. She saw Kerri Sixuntilme wearing her pump on her front pocket yesterday and so today she wore it there rather than trying to cover it with a tshirt. Kerri S. is ambers hero. Thanks again for sharing and commenting. I'm so new at this it's nice to know I reached someone.
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