Saturday, May 7, 2011

SNSS: Driving In the Wrong Direction

What can I possibly say about Adrienne, today's Special Needs Sibling Saturdays guest poster that would adequately communicate the depths of my feelings towards her?

Adrienne holds a very special place in my heart, so much so that I am actually a bit anxious about this intro, wanting to be very, very sure that I "get it right," introduce Adrienne to you properly, so that you will all love her as much as I do (silly me).

As you may have figured out, Adrienne is one of my early, important bloging connections, a bloggy mentor to me. I don't even remember what post brought me to her blog, No Points for Style, because once there, I started to read everything, backwards and forwards.

(I believe it might have been this amazing post about the stigma of mental illness: If the Diagnosis Was Cancer…)

Whatever post it was, it stopped me in my tracks, as did the rest of Adrienne's blog, her life story brimming full of challenges, a heavier load than any one person should have to carry in two lifetimes, let alone one.

Adrienne has four children, the youngest of whom has special needs. Until now, all my SNSS guest bloggers have had children on the autism spectrum, but Adrienne's son Carter's issues run both deeper and wider than that. His challenges are profound, and his care can be all consuming.

And yet, in spite of these heavy weights? Her words take flight, soar; dive deep, tunnel into your soul; expand in your mind, open up universes.

There is so much I want to tell you about Adrienne, I could just go on and on, but I really shouldn't do that because her own words are so beautiful and my yakking away is keeping you from them. And they're right here... so read...


Driving In the Wrong Direction – by Adrienne Jones

I'd like to think that, if I'd known then what I know now, things would be different.

That, though, is an exercise in futility. Like my friend used to tell me, start putting wishes in one hand and shit in the other and see which hand fills up faster.

No doubt about it; regret is poison, but sometimes in the wee hours, I'm drawn to those dangerous thoughts and I spend hours second-guessing everything I've done in the past 8 and 1/2 years.

When Carter was born in 2002, my husband Brian and I already had three children. Jacob and Abbie, 8 and 6 at the time, are my kids from my first marriage. Spencer, who turned 5 the day before Carter was born, is my stepson.

Married just 2 years at the time, Brian and I and our kids had only just begun to feel a little like a family - to define all our new relationships and navigate the complex life of a step-family.

And then I gave birth to 8 pounds, 4 ounces of red-headed, caterwauling, wakeful baby. He was a crisis in footie pajamas. He cried so much (many, many hours at a time) and so vigorously (purple in the face and veins popping out all over his head and neck) that Brian and I rushed him to the ER at least 4 times during his first year because we were convinced that he must be in excruciating pain, perhaps even dying.

Our other kids? At first, I made dinner and we ate it while Carter screamed. Then I started preparing scrambled eggs or sandwiches. Eventually, I sent Brian out for a sack of burgers or gave everyone a bowl of cereal.

At first, they tried very hard to talk to me, pushing through Carter's wall of sound and shouting to be heard. Then, they stopped telling me anything but the essentials. Finally, they gave up altogether.

At first, I was relieved that the kids had their other parents' homes to go to, where they could get the adult attention they needed and enjoy a break from the chaos at our house. Then, they started to spend more and more time at their other homes, and finally, in 2009, Jacob and Abbie moved to their dad's house permanently.

What I didn't know in the beginning - what I couldn't have known - was that life with Carter was never going to calm down. Carter got older and gathered diagnoses like a snowball rolling downhill (an alphabet soup of developmental, social, and emotional issues), and my mental health frayed (and not just around the edges), and just when we would feel like we were at the very end of our endurance, things would suddenly get worse.

By the time I understood that we weren't dealing with a time-limited crisis but a lifetime of disability and that everything about our lives would have to change if we hoped to get Carter to adulthood, my older kids were gone. Their resentments, their feelings of abandonment, their pain, are all too deep for me to be able to repair our relationships in the short-term.

Our relationships won't be repaired until they decide that it's what they want.

Worse than my own pain is the rejection Carter has experienced. He adores, idolizes, and loves his siblings and just as Jacob and Abbie feel rejected and abandoned by me, Carter feels rejected and abandoned by them.

See how complicated things get?

I want to wrap this up with a pretty yellow bow, but I haven't got one. Raising a child with a serious mental illness is sort of like driving a car on the freeway going in the wrong direction - no matter how much I want to do things right, there's no time for anything except keeping everyone alive.


Adrienne, thank you for this beautiful post. I remember when I first read your words about your truncated hopes for Carter, that for you just keeping him alive to become an adult would be a triumph, and how my heart wept for you. 

I knew your story here would be probably more intense, brutal, than many of the others told, but one I, and we all, needed to hear. 

Thank you from the bottom of my heart for opening yourself up once more and bringing your anguish to my table. My respect and admiration for you knows no bounds; I am truly grateful for the gift you have given us with your words.   

And, readers? The difficulty of living with, loving and caring for a child with a severe mental illness? Watching your child dissolve into a self- and other-injuring hallucinatory state? Hearing that your child is deeply disturbed, often psychotic, and will need to be on psychiatric medication for the rest of his life? Are things I can barely fathom. But all this Adrienne has faced, and written about, time and again, so movingly.

When I first discovered Adrienne I believe I spent a few nights up way too late, pouring over her archive, reading post after beautiful post.  There is so much there, so wide, so deep. I've linked to no small number of posts already, but let me just point out a few more, truly near and dear to my heart...

A wrenchingly intense post about how there are no Disposable People... about her deep love for her Beautiful Boy, Carter... about another Disposable Boy, and how society failed him... about her deep love of her oldest son and daughter and the Pain that Runs Through (her) Veins around losing them.

Besides her children, two other important topics for Adrienne are bullying and suicide, because she has greatly suffered from, and been shaped by the occurrence of both in her life. 

I know Adrienne isn't really fearless, that she's actually human sized. But her writing IS fearless, brave and honest and crack-open-your-chest-cavity-and-wrench-your-beating-heart-out real.  

And she also highly values that searing honesty in others, bestowing her "No Points for Style Bad Ass Blogger Award" to folks for bloggish bad-assery.  (In the spirit of full disclosure, I must admit I have been the recipient of said award for my post "O Is for Oxygen.")

But most of all, Adrienne is simply a flat-out amazing writer. She can be lyrical, touching. And on other days? Piss-your-pants funny. So go, read... ANYTHING there. It's all good. Better than good. Wonderful. 
And, if that weren't enough? Adrienne, like quite a number of other SNSS guests (and me, too) can also be found posting monthly at Hopeful Parents.
Finally, you should absolutely follow her on Twitter  and go "like" her on Facebook. Whew!

And did I mention? I love you, Adrienne. Thank you.

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