Yesterday back in Texas (I miss Texas) a close and wonderful friend spoke to many about Autism. She has a son with autism and is his greatest advocate – actually she is an amazing advocate for all those with Autism. She shared a portion of her speech on Facebook. She ended her speech with a favorite quote of hers by Clara Claiborn Park,
“So, then: this experience we did not choose, which we would have given anything to avoid, has made us different, has made us better. Through it we have learned the lesson that no one studies willingly, the hard, slow lesson of Sophocles and Shakespeare – that one grows by suffering…. If today I were given the choice, to accept the experience with everything it entails, or to refuse the bitter largesse, I would have to stretch out my hands – because out of it has come, for all of us, an unimagined life. And I will not change the last word of the story. It is still love.”
What precipitated this type of ending – this: (the last bit of her speech prior to the quote by Clara)
“Just recently, my youngest son asked me, “Mom, do you think Autism is good?” This is the second time that I have been asked this question by someone close to me. The other was a couple of years ago by my niece, who was exactly the same age my son is now. And I always catch my breath, like I’ve been kicked in the stomach. Tears well up in my eyes and I want to yell angrily, “I HATE AUTISM!!!” But, in the moment of searching for diplomatic words, I look at these children, and I see their kind, complimenting eyes. They are really looking at me with admiration – they only see LOVE. They see me lovingly dealing with my son, they see me excitedly talking to others about this terrible disorder and they see me taking on school issues with a passion, so to them, I LOVE AUTISM. Well, I love my son, and I guess it is possible, that may mean that I love Autism, but only because I can’t separate the two.”
Why am I sharing all this about Autism on my blog about Diabetes? Because Vicki (@vicki2cool) has an amazing way with words and an incredible understanding off how having a child with special needs (physical or cognitive) changes everything. I am inspired by her strength and dedication for advocacy. But there is another reason I share these particular words.
Shortly after Sweetstuff was diagnosed with Type 1 (which was 2 years after Sugarboy was dxd) she shared her hatred for Diabetes out loud at dinner.
Sugarboy’s reaction was heartbreaking. He screamed at her “Don’t you say diabetes sucks!”
See Sugarboy has only ever known diabetes. He doesn’t recall a life without diabetes. To him, diabetes was so much a part of who he was that when she said it “sucks” he took it very personal.
He turned to me expectant that I would yell at Sweetstuff, tell her to take it back, tell her she was wrong. I panicked. I didn’t know what to say. Diabetes does suck. But here sitting a foot away was my 5-year-old son so very conflicted. Surely he didn’t like diabetes? Moments passed – felt like time stopped and the walls were closing in on me – each of my three kids still staring at me – waiting. Waiting for what mom would say because they know (think) ‘mom is never wrong’. I seriously considered pretending the comments were never made and just yelling – “desert time – who wants brownies”?
It was likely just seconds that had passed. Sugarboy sat teary eyed picking at his rice. Sweetstuff, also teary eyed stared at me. Middles, likely wanting to get as far away from the Diabetes drama as he could asked to leave the table to use the restroom.
I swallowed hard and said something like (because this was 3 years ago and a day I don’t like remembering) “Diabetes is hard and hopefully is the worst thing that will happen to you in your lives and while it is a part of each of you it is not who you are. Some days diabetes will be harder than others. Some days you will hate diabetes more than anything else and other days it will just be what it is. Diabetes does ‘suck’ but it doesn’t mean that you ‘suck’ – you are stronger than diabetes – both of you.” I may have said more but I know I said these things even if not exactly as written.
No one seemed hungry after that. No one had done homework and I thought briefly about announcing a ‘no homework’ day but thought better of it (picturing repeats of the argument in hopes of another no homework day) thus, I invited them all to get started on homework. The rest of the evening was uneventful as I remember it.
Since that day I have often thought of how my kids are strong. They are fighters – I’m a fighter. Which came first – we were always fighters and therefore can deal with diabetes or did diabetes bring out the warriors in us.
Since diabetes joined our lives I have met some of the most amazing people I’ve ever known. I would not have met them otherwise. Is that enough to not ‘hate’ diabetes – No. I hate diabetes and it will always suck. Would I give diabetes back if I could or would I like Clara says “stretch out my hands…”?
You might be expecting an answer – however I am unable to give one. I do not have diabetes – it is not mine to give back or ask for a do-over. Like so many other things we play the “what if” game with – I am not sure I would be willing to give up all that we have gained, all of who we have become for a do-over – instead I ask that we work towards a cure – join a “former pwd” group. Having had a hand at ending the crazy that is diabetes.
It all comes down to the fact that Diabetes is not who my kids are – it is what they have. And I am thankful that my dear son can now separate the two and recognizes that just because diabetes sucks – it doesn’t mean that he sucks.