Wednesday, January 18, 2012

iHelene and few other little something, somethings ..

First the something, somethings. The high points of the week, or maybe they are the low points of the week but points nonetheless, that have kept me otherwise occupied and distracted.

 First up: Zoey is sick with a nasty little respiratory thingy. And is feeling down right yucky but manages to smile and sign "happy", over and over, again. I think that is totally for my benefit.  She coughs like she has been a smoker all her life, to which we find ourselves, in true Needham fashion, telling her to lay off the nasty habit would you Zoey, each and everytime she goes into a coughing fit. My child who never naps, has just now fallen asleep next to me, as I type. Poor love.

Next, and this one, for those who don't know me, might need more of an explanation, but I just am not in a position to give it right now, so will need to leave it at: I will be going to a gathering on Saturday and will be seeing family members I haven't spoken to in 3 years. Two of which are my very own mother and father. Mentally preparing myself by repeating: "Go slowly. Breathe. Smile." ~Thich Nhat Hanh.

Finally, my heart has been heavy over the on going discussions surrounding a little girl named Amelia, that was denied a kidney transplant based on "mental retardation". And if that was not enough, dialogue continued here at the HuffPost and a most disturbing opinion was voiced by one woman and sadly echoed by others,in one way or another, that, in a nut shell said, that there is a distinction between " a human person and a non-human person." The absurdity of it all I could not even begin to rehash here, but I invite you to visit my dear friend Elizabeth's blog where she and others have done an amazing job of bringing this to the forefront of discussions. Much needed discussions. However, I have to tell you, Elizabeth and I talked yesterday and we wonder, have we truly made progress in educating society about our children and others with disabilities? Are we simply spinning our oh so very tired wheels? Will our children always be viewed as "lesser than"? Their lives  dehumanized based on their capabilities or lack there of? I wonder. But as I wonder I will continue to advocate and fight and speak up, despite the ignorance that still abounds. I know of no other way to be.

But you know, I can offset all the icky feelings brought on by stories such as Amelia's, fairly quickly, by introducing you to Helene. iHelene, is our second recipient of Mission 2. Darling little girl. With a mom who writes with the humor necessary to journey with these children of ours. Humor has saved myself and my family during some of our darkest days and Suzie's mom, she has that humor chip that is essential to retaining our sanity. So please read and stay tuned for upcoming news on Mission 3.


I must have started this blog a half a dozen times, then gone back and erased the few paragraphs I had written.

Evolution of self is a crazy thing. If you are open to it, it can lead you in some wonderful directions in your life. If you are closed to it, if you find yourself bogged down by fear, anger, aggression...well, before I start sounding too much like Yoda, let's just say that you can very easily just miss out on so many lessons Life tries to teach you.

The reason I kept erasing the text was that I kept starting this post with apologies. I kept apologizing for the delay in getting it written, the delay in wrapping up this Mission 2, the delay in getting set to go with the announcement of Mission 3, for the this and the that.

And I realized...I have done that, and continue to do so, quite often, and not just here. I do it on my own space, I do it on other spaces where I might be invited to guest write. I do it a my everyday Life.

I think I am beginning to have an understanding as to the 'Why', but I'll talk about it somewhere else since I don't plan to make this post all about me. I will only say this about this place and this space. It's always been and always will be an Open Book. And it will remain so.

It is a reflection, perhaps, of who Heather and I are and whoever else comes to the table, and I like it that way. It is a perpetual Work in Progress, it is in its infancy, and it has much growing yet to do, because it, like all of us, is evolving too.

But it is Good. It does Good. And I think that I don't need to apologize that I can't give it the time I want every day, or every week, right now. I give it what I can, and when I can I'll give it more.

Because I do love it, and man-oh-MAN does it give back TEN-FOLD.

When I first read Suzie's entry regarding her daughter Helene, I recall some of her statements LEAPING out at me. Reminding me, strikingly, of my son Bennett.

'Helene...seemingly flourishes in the confines of a genetic disorder in the family of overgrowth syndromes, while the specific syndrome cannot be pinpointed (probably a mutation of one or more). Helene has Autism, a very limited vocabulary of one-two word phrases...a disregard for many social norms, and unbridled enthusiasm for all things related to sugar.'

'She is clearly creative and funny, with limited avenues for expression. For instance, she recently seemed to find it amusing to watch us find toys she had hidden in food. A small plastic baby found in the simmering tomato sauce, a tiny plush cookie monster upside down in a glass of milk, Dr. Doom staring up at me when I opened up the sour cream.'

I can't explain why, because Bennett does none of those things exactly, but the sense of humor, the ability to HAVE humor, is something that Bennett does not lack, despite his tremendous disabilities. And I just had an...impression, that Helene had a similar disposition.

Humor certainly helps, a lot...and I wish that all of us had more of it in our lives. Especially with our kids. Those of us that is a very special gift. The sound of laughter, especially from a kid, does it get better?

We need to have it as well. Us, the parents I mean.

Suzie certainly does, as this little passage from her e-mail she sent me when they first got the iPad indicates. She was telling me a little about Helene, they had not yet given her the device but were waiting until Christmas. (And again...her description...sounds like she could be writing about Bennett, at least to me.)

'Helene is really beside herself about Christmas, in both good and trying ways. She is a veteran tree-decorator (on and off with those ornaments, again and again), holiday dancer, repetitive Grinch watcher, (Oh, those Whos down in WhoVille, the tall and the small...), cookie tracker and eater, and is exhibiting rather stunning and remarkable self-control over the mailing boxes that are coming in the door. Somehow she is fully aware they are presents, and must wait.'

'On the other hand, she has had an alarming number of tantrums, including the lay-on-the-asphalt variety at the Zoo the other day. The gang of kids and moms in attendance labeled it Helene's version of 'Occupy Zoo' behavior.'

'I sat on a bench and sighed...deeply...'

Sounds like a Mom you would want to hang with, right? I think that you ought to write a blog, Suzie, I really do. And of course, there was this little ditty that I got shortly after the iPad was given to Helene as a Christmas present.

'Helene has been waging a passionate love affair with the iPad. I (somewhat haphazardly) loaded some apps that I thought would be useful for her: a few movies, read along books, and several communication apps that include puzzles, word scramble, etc. She has already become so proficient at the word scramble, I have to research one with harder words.'

'She's been running around the house yelling opposites: Up! Down! Inside! Outside! Open! Shut! And spelling p-e-a-c-o-c-k and w-a-t-e-r-m-e-l-o-n! (Well, honestly, the end of watermelon gets lost, but you get the idea.) Mind you, this is from a girl who has VERY little to say generally.'

'The iPad has been a wonderful boon to her, and by extension, our family, and I've signed myself up for an apps class via an Autism task force so I can better meet her needs. We thank you again for making this possible for us. It has all been, as Helene would exclaim, DE-LICIOUS!'

Indeed it was.


On behalf of:
The Mission: iPossible! Group


Shellie said...

I love hearing about Zoey and your family and am saddened hearing this things like this. The story about Helene though lifted my spirits. My son is an Aspie and I have read a lot of articles and blogs that just make me so thankful about his particular peculiarities. I am thrilled you were able to provide her with a window between her world and our own.

The VW's said...

Hope Miss Zoey is feeling better soon! Respiratory illnesses stink! Gavin is recovering from pneumonia right now, so he feels your pain Zoey.....and I feel yours Heather, because watching our loves cough and feel yucky is so very sad!

I'll be praying that your 'reunion' with family goes as well as it possibly can! Love and Big Hugs!!!

Kristin said...

A reunion. Wow. Praying it is what you need it to be. A new beginning. A closure. An understanding.

Kristen's mom said...

Sorry about Zoey. Hope she is feeling better very soon. I'll be thinking about you on Saturday. I hope it all goes well.

Birdie said...

I was and still am stunned after reading Elizabeth's blog this afternoon. I can't even come up with words to comprehend how anyone came up with deciding if someone is a "person" or a "human". People are afraid to liken it to Hitler but I am not. It is not even a slippery slope because dear god, if the value of a life is based on this we are already at the bottom of that so-called slippery slope.

Anyway, poor wee Zoey. Brave girl. I hope she feels better soon.

stephanie said...

Saturday... I'll start praying now.

Maybe it'll be a good thing????

Helen is so adorable! Well deserved! Glad she got it!

if you need to scream on Friday, feel free. I know you're always there for my rants. And cute comment you left about the bed for Em! You're right I'm waiting!!! :)

The Annessa Family said...

Praying all goes well and thanks for sharing sweet Helene.


Elizabeth said...

Did you know that Thich Nhat Hahn's mantra "Breathing in I calm myself, breathing out I smile" was something I said over and over during the dark days of infantile spasms and ACTH? Here I am, seventeen years later, still breathing and smiling!

Rochelle said...

So sorry about Zoey, praying she is better soon. You know I am starting praying now about your meeting with family this weekend. Can't wait to hear the outcome (praying it is positive).

Anonymous said...

Heather, please know that your blog has helped me to become so much more aware of a whole world I really hadn't had any exposure to. It makes me think in a much broader spectrum and your blog and others like it, have helped me to become so much more compassionate of others and what they could be going through in their day to day lives. Long story short, keep on reaching out and educating us! Keep on shining Zoey's light out across the world. You are making a difference one person at a time. I'm proud of you - Christy P.

Peter Olson said...

I pray that Zoey gets over that illness, soon.
I also pray that God will continue to give you strength, joy, peace, patience and love as you do his good will. Amen!

I have learned a lot from you. (less ignorance here)
I don't always understand what you are trying to say, but I do trust your heart.

I am a man; you must to talk slowly, repeat yourself, ask me to repeat what you just said, eliminate distractions (turn off TV) and have a lot of pictures for explanation too. Ha! Ha!

Great post! :-)

Dria said...

Heather, I'm usually more of a reader than commentor, but I couldn't help but get sucked into and incensed by the whole HuffPost and Elizabeth's blog discussion. I wound up visiting the other commentors blog and seeing your comment, and just had to post one of my own too. Spent way too much time on it that I don't have, but I just had to speak up over such absolutely unconscionable and naive thinking. Urrggh!!
On a more important note -- hope litte Miss Zoey is feeling better soon!

colleen said...

Have to tell you that I have spent well over 5 years in master's programs and 4 undergraduate years studying children and their health care needs - and have paid large amts. of tuition for it. In the at least 2 years since discovering your blog I have learned more about about each diagnosis Ms. Zoey has faced than I have ever learned in a " paid for" classroom or any job that ever paid me for my services. You have changed the way I think - no small feat.
So although there will always be bloggers and people who voice opinions like the one you describe in your post, do not dwell on them or allow them to take energy from your quest to achieve your goals. My "free" education cancels her out- or at least creates two opposing forces in the universe.
I'll be thinking of you this weekend and sending you extra energy and good thoughts.

Anna said...

oh how I wish I could say what Colleen said. My husband says everyone has an opinion just like they have a part of anatomy..... dont let others take the wind out of your sails. You my friend, are doing a very good thing- or two or three. Love the story from Helens mom! Prayers for the weekend. hugs from Fl.

Anonymous said...

Hope miss Zoey Grace is feeling much better. Good thoughts to you re Saturday with your family. Hope all goes well

And,good choice for the last ipod!


Bea Braun said...

Praying that your family gathering went well and praying that Zoey is feeling better!

Scrappy quilter said...

Hope Zoey, our little princess is feeling better. Hope the reunion goes well Heather. Hugs and love

Team Carter Jay said...

Prayers that Zoey feels better soon!

Melissa said...

Obviously I am terribly behind and trying to play catch up, so you get together with family is long over. I hope it was what you wanted and needed it to be.