Please pray for Rhett

You know, it’s funny, all day long I’ve been thinking about this whole “Autism Awareness” storm that’s swept its way through the news media and blogs lately. I’ve been pondering what I think of it and what it all really means in my life. Today, I had some really wonderful thoughts about different kinds of awareness, connections made, and lessons learned as we travel along in our journey with Nik. I’ll share those thoughts with you in another post.

Tonight, I want to shine a light on a very special family —again. I first introduced many of my readers to Rhett and his family not too long ago in this post. The struggle is not over; in fact, it seems to be deepening. Please read this post for more details.

Now, I know that Pam and Andy are incredibly strong and their Faith carries them through so much. But folks, everyone needs love and support in times of trouble and I would say this is one of those times.

Please, reach out and let them know you are still thinking of them, praying for them —especially for Rhett, sending out “good juju” vibes or whatever it might look like for you to lend a helping hand and an open heart.

Because, really, in the end all that matters is that we are aware of one another as human beings; the color of our skin, the politics or religion in our minds and hearts, the diagnoses our children or other loved ones share —none of it matters. It’s the connections we make, the lessons we teach one another about love, compassion, dignity, respect, and hope.

Spread the word.

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All Manner of Healing

Lots to say today with no way to write what I really want to about Nik, his communication devices, health, life, and a host of other things. I fell down some stairs yesterday and injured my left wrist and shoulder. I’m typing one-handed (actually two-fingered) on an ergonomic keyboard while wearing a splint and sling; it’s sloooow going, folks! Until I am back at full speed, I want to point you to some other posts and people.

First off, check out these posts about Autism: the Musical which will premiere on HBO on March 25th. And spread the word!

Then…

If you don’t already know the Bird Flock, please check out Rhett’s Journey. I originally found this blog through Jennifer at Pinwheels. I stayed because I fell in love with Rhett and his inspiring, loving family. But folks, this isn’t just a plug for someone else’s blog about their adorable child.

The Birds have been through such an incredibly hellish year which has impacted just about every aspect of their lives —and it doesn’t seem to be letting up. Reading between the lines of what was not said in this post —because her other children read it, too, and Pam didn’t want to freak them out— little Rhett is facing some extremely serious surgery this week and has more on the near horizon. The outcomes of these surgeries may well mean his life span could be shortened. Significantly shortened. It’s a scenario no family should ever have to face.

If you believe in miracles and Divine intervention, I implore you to please read about Rhett and then add yours to the many, many voices being lifted up in prayer for Rhett and his family. If you believe in other manners and methods of healing and spirituality, I urge you to add yours to the energy and visioning being sent out to the Universe as well.

Photo courtesy of the BBC

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A Winning Attitude

I’m feelin’ good from my head to my shoes
Know where I’m goin’ and I know what to do
I tidied up my point of view
I got a new attitude

Runnin’ hot, runnin’ cold
I was runnin’ into overload
It was extreme
I took it so high, so low
So low, there was nowhere to go
Like a dream
Somehow the wires uncrossed, the tables were turned
Never knew I had such a lesson to learn

I’m feelin’ good from my head to my shoes
Know where I’m goin’ and I know what to do
I tidied up my point of view
I got a new attitude
I’m in control, my worries are few
‘Cause I’ve got love like I never knew
Ooh, ooh, ooh, ooh, ooh
I got a new attitude

New Attitude ~ S. Robinson, J. Gilutin, B. Hull

You know, there are days when everything seems to be going the wrong way and you just want to crawl into bed and hide under the covers but you can’t. So, what do you do? You buck up, fake it ’til you make it, cowboy up, put on your big girl panties…or any other little phrase that comes to mind. You change your attitude so you can make it through the day, right?

Because, really, what other choice is there? Okay, yeah, if you’re single or childless you might be able to get away with a day or two —maybe even a whole week if you’re super lucky —of self-indulgence, escapism, vacation from the rest of the world. Not so for most people and it goes double for the mothers of children with any kind of special needs be they physical, emotional, intellectual. It matters not if you are frazzled to the Nth degree; breaks are few and far between.

That’s why it is so important for us to support one another; to reach out that hand in the darkness for another to hold when they feel like they are slipping away from themselves or life is spinning out of control. To celebrate the little every day victories —and especially the BIG ones! To lend an ear, a shoulder, an understanding heart. Humor to lighten the burden; laughter is healing and cleansing. Positive reinforcement when the reserves are low.

TulipMom recently hosted her very own little bloggy bling-fest and graciously bestowed a bevy of awards. I won in a category I didn’t even know existed! (And there I was on the red carpet in my curlers for goodness sake!) She thinks I’ve got a winning attitude! I am humbled and honored; I will confess I work hard at it and don’t always succeed. (Those would be the lengthy blog silences you might see from time to time…)

I really want to share this with every single one of my readers, commenters, blogging pals, etcetera. Each one of you lifts me up when I need it, cheers with me when it’s warranted, and makes me laugh, think, love, and feel more deeply than I have in a very long time. But there are two women I’d like to honor who touch my life in very different ways.

On the surface, one might think these two are polar opposites. They come from different worlds and yet, in their hearts, they are so alike. Their humor, their insights, their shared struggles and wisdom always leave me wanting more and always, always, always leave me wishing I could be their neighbor. That would be a bit of a stretch though; one lives on the west coast and the other in the West —with a capital W. Both struggle, I am sure, like the rest of us and yet they find ways to see the good, to hold onto the hope, and to share the laughter. I love them and I don’t even know them.

Without further ado (because, really, get me on a roll and I think I can’t shut up! Too much caffeine…), please join in me in a giant round of applause for:

Like A Shark and Pinwheels!

Okay, the show’s over…everybody move along to those sights now!

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One Good Read

I know there is no such thing as true objectivity; our individual upbringing, choices, and circumstances forms who we are and how we interpret things. My experience of a shared event will not be the same as that of anyone else. For this I am grateful.

I just finished reading Tom Groneberg’s One Good Horse. I wish I could tell you I thought it was a “rousing read” or some equally snappy, sound-bitey quote. I can’t. I loved it. And I hated it for some of the thoughts and feelings it evoked in me.

The notes on the inside cover of the book says, “At its heart, One Good Horse is about the power of hope, the simple story of a horse and the way people connect with nature and with each other across generations.” Not entirely so for me. That is not to say that the book is not about any of those things; it absolutely is —and so very much more.

Perhaps it is my perspective as a mother of a child with multiple special needs which makes me see this book as something so much deeper and richer than just the “simple story of a horse.” As I read Tom’s story, knowing full well how some of it turns out, I saw the storyline about the horse as simple a metaphor for his struggle to regain his own footing in the wake of several job disappointments and the birth of his two youngest sons. To me Tom was Blue, the colt, perhaps feeling a bit tattered and slightly abused or neglected by life until this thing called family —specifically in the form of an expanding family with exceptional needs and circumstances —claim him as theirs. As Tom takes baby steps with the care and nurturing of Blue, so too does he take the same baby steps in accepting the yoke of fatherhood in a different and unexpected way than he ever envisioned for himself.

But the story Tom tells, interwoven with that of an old cowboy named Teddy “Blue”, evoked such powerful, sometimes visceral responses for me. I am still sorting it out, trying to untangle the threads which are mine and yet not mine. Tom’s words gave me much to think about in terms of my own husband. The feelings of failure, the fears and hopes, the need to feel like a hero somewhere in his own life and for his family —did my husband feel those things upon the birth of our special child, the loss of his job, our move back east? Does he feel them still as he struggles to balance the load of work and school and family? Does he feel, as Tom expressed so poignantly, the worry that his family doesn’t get enough of him?

The fact that I “know” Tom through the writings of his wife, Jennifer, and that I know his boys the same way made it even more difficult for me to read his recounting of the day —and the way— the twins were born. His account of learning of Avery’s diagnosis of Down Syndrome and his efforts to learn what to do for his son —all of it made me sob with grief. Not for Avery —for Tom. And for my husband. In those moments I could see the vulnerable uncertainty he must feel as he watches his son going through the challenges of living in this world and wondering what he can do to ease the way, to teach him what he will need to know. Discovering the lessons to be learned from his son along the way.

As I read, I could see the faces of the Graf Groneberg family as if I were watching a movie. Imagining the beautiful smiling image I have of Jennifer (from the gorgeous photo on her blog) contorted with grief and fear was unnerving and disturbing. Though I know how things turned out, in the moment of my reading it was as if I were watching —through a thick hazy window —a dear friend struggle and not knowing what to say or do, not being able to reach through to comfort her. It gave me pause to wonder if that is what it felt like for many of my old friends —the ones long gone since shortly after Nik was born. Did they, too, feel the helpless grief, the burning ache of tears in their throats as they watched from the sidelines, uncertain what to say or do? Did they feel unable to reach me and in their own grief turn away from the pain of not being able to fix it?

So, if you were to ask me what I though of Tom’s book I would have to tell you it was difficult for me. The overall book is so much richer than I ever imagined it would be and yet so painfully raw in parts that I had to put it down and walk away. I cannot say the book has a happy ending —the story is far from being over. But this particular chapter, if you will, left me with a sense of peace and acceptance. And of hope not just for Tom and his family, but for my own. And for the fathers of children like Nik and like Avery who struggle to find their way in the already murky waters of parenthood.

If you haven’t already, read this book.

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Chelsea’s Life Challenge

I stood in the darkness of my kitchen. Evening twilight filtering through the woods behind the house, I wept uncontrollably. I am shaken to my core by the plight of a child I don’t even know. The impact of what I have read pierces through the armor of my daily life. I am hurtled back in time to my early days with Nik. The visceral grip of endless days and nights of fear and panic, uncertainty and inability to control my child’s destiny. I must do something to help, but what?

One hour ago, I met a new family through another blog, Rhett’s Journey. The family is not Rhett’s, though they are a wonderful family, too. No, I met Chelsea and her family for the firs time today. Chelsea is a beautiful little girl, about 1 1/2 years old, with Down Syndrome (Trisomy 21). She is also in the hospital right now facing the fight of her life. For her life. Just last week Chelsea was diagnosed with leukemia and now she is undergoing chemotherapy.

You can read her story here, in her blog written by her mother. You can see a recent video of Chelsea in her healthy glory right here. It’s from their Buddy Walk team and it gives you some wonderful images of a bubbly and smiling little girl who is the light of her mom’s, dad’s, and big brother’s eyes.

Make photo slide shows at www.OneTrueMedia.com

Please say a prayer for Chelsea and her family. Please reach out to help in whatever way you feel compelled. I speak from experience when I tell you that a situation like this feels like the darkest night of the soul and shakes you to your very core. No matter how many friends and family members you have around you, there is never too much love, too much compassion, or an excess of faith or prayer.

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Maytag Mom

Today’s post is from a special guest blogger, Samtra K. Devard. I have the privilege of knowing Samtra through some work we have done (and continue to do) to help make the family voice, perspective, and experience a part of everything we do in our state to educate the service providers, current and future educators, and medical professionals who care for our children with special needs. Samtra has been a tremendous inspiration to not only me but to a large number of parents. She is a passionate advocate for children, including her own three beautiful kids —one of whom has Down Syndrome, and she works tirelessly to create greater opportunities for inclusion for all our children. I am proud to know her and to call her friend.

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Everybody knows the commercials featuring the Maytag repairman. This is the guy who has nothing to fix. Of the millions of washers, dryers and dishwashers that are sold – the guy who was hired to fix any problems that Maytag appliances may have, has nothing to fix.

Surely there is something that he can fix. Yes, only if something is broken!

Just like the Maytag repairman has nothing to fix, Mom’s of children with disabilities have nothing to fix. We are in essence Maytag Moms.

Many of us are given a diagnosis for our kids and a laundry list of all the things that are wrong. We are presented with scenario after scenario of circumstances too bleak to contemplate.

The problems that face children with disabilities and their families sometimes seem endless. And for many who are faced with a problem – the natural tendency is to fix it.

A wise woman whom I love and respect once told me it took her a long time to figure out that her role in her daughter’s life was to NOT to “fix” her daughter, because she wasn’t broken. Once she learned that, she was able to come into acceptance of what is – and find peace with that. To function in a mindset that is about maximizing potential and life chances, rather than fixing the problems of a “broken” child or family situation is so much more meaningful. The Maytag Mom is expending valuable energy trying to fix something that isn’t really broken.

Broken means out of order, not working, damaged, ruined, destroyed, defeated, dejected, crushed, dispirited – without hope.

Our children are anything but broken.

The sooner we stop trying to fix the situation or our children, the sooner we can begin the healing process and begin to function in a positive, less energy draining way.

I have learned I am a Maytag Mom. I having been doing all I can to fix things. Acknowledging this has been so profound for me. It’s taken a lot of soul searching in a short period of time to realize that no matter what – we have some circumstances that just are what they are. Nothing’s broken.

The good news is Maytag Moms are good at what they do and can redirect their energies to things that are about building and growing and uplifting. We can do with our lives what was intended – to live and love to the fullest. Love our children and the joy they bring. Resist any temptation to fear the unknown about what lies ahead. Certainly, what the Moms of children with disabilities face can be different than if our children didn’t have a disability – but guess what there would still be something to deal with; just a different something.

But I believe wholeheartedly that the heart, energy and passion of the Maytag Mom is why God blessed our lives in such a great way. Reminding ourselves of the blessings during times of turmoil all around us becomes the challenge.

Maytag Moms – there is a great future ahead!

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