Dancing on Shifting Ground – Part I

My six year old has been home sick and my sweet Aspie kiddo (who just entered high school) ran into homework challenges studying for a quiz. That trumps the blog challenge. I will still hit 30 in 30 – but right now – I know where my priorities lie. I also know that I am tired. So tired that I am in a fog. So tired that just the thought of the load of laundry in the dryer and the sink full of dishes and the bills that need to be written – make my heart race with anxiety. I want to do nothing in this moment, because I have been doing everything all day. It’s 10:30, for God’s sake. One should be doing nothing at this hour – except for writing. This is a good hour for writing – or reading. I think I just talked myself out of the laundry and dishes.

Black or white – love them or me? Where is the grey? Hmmm. The grey gets lost in motherhood – I think. No – I know. The kids don’t have a choice of being sick or not – or needing help reading the funky-ass scanned copy of a text book on the monitor – because that would be hard to study from – even if he wasn’t dyslexic – but he is – and you know what? It’s my job to help him. Period. It’s my job to hold the tissue for my 6 year old and find him something for his chapped lips and make sure he drinks water – oh and to snuggle with him under a blanket as much as I can when he asks – so I can hold his head and let him cool his hot little hands on my cool skin. Yep. That’s my job. I wear many hats – but the number 1 – most important hat is my Mom Hat. I’m trying to visualize what said Mom hat would look like. Hmmm.

What I am beginning to realize is that this thing that I do – this mothering. This Momming. This is way more than my job. It is actually one of my passions. It is actually my greatest passion. I just happen to be doing it at 48. And my mothering needs to be a little (okay – a lot) more hands on than many mothers of freshmen in high school – and it’s just going to be that way for awhile. I came to a realization today that This is It. And that is that. And it’s okay. As maddening as it is at times – and believe me – it’s downright – Mother Flippin’ maddening at times –BUT as maddening as it can be – it’s super flippin’ awesome that the powers that be hooked me up with these two. And that reason is – I happen to be best for this particular job.  In other words – sure I need self-love breaks – but this gig I’ve got?  It’s awesome.  These kids.  They’re awesome.  I can not imagine my life with out them.

Up until right now – today – I have found myself saddened by my decreasing passion for gardening, hiking, cooking and health. These were all true passions – just last year.  Oh – I still love these things – but I’m not driven to do them right now – and so – I have found myself wondering if there isn’t something wrong with me. Am I depressed? Am I slipping away? Am I just getting old?

The answer is no – to all of these things.

A HUGE switch was flipped today.


Helping our Teachers Help our Aspies

Dear Mom –

Well – I faltered. I couldn’t type late into the night last night. I passed out hard after 6 short nights. That is that. The natural consequence is that I type 2 entries today. One this morning. One tonight.

Yeah. The natural consequence in getting back on track is me trying to type and think while B (he’s 6) talks incessantly across the table from me. When he is not talking – he is making sound effects. The whole while – he moves back and forth from one end of the table to the other.  In this way – he is not much different than his 14 year old brother.  What is different?  He has been transcribing Lego catalogues off-and-on for 7 or 8 months now. He has 3 sheets of paper front and back (so 6 pages total) taped together to make a long horizontal scroll. These pages are covered (20-25 sets per page) with every set he can find in the catalogues we have around the house. He calls it – get this – his “Christmas List.” This morning – he taped on a 4th sheet. My job is to dictate as he writes them. He hasn’t had this list out to work on in over a week. He sees me open the computer to type and immediately pulls out the list instead of turning on cartoons. It’s a game. I won’t offer cartoons – although I SO desperately want to. I’m to live in the moment, right? Appreciate this precious time of life, right? Yeah, yeah. I get all of that. But let’s get real – Right now? Right now I just want him to go turn on some Rescue Bots. Yep.

As I was typing that – he looked at me and asked if he could turn on some Rescue Bots. Guilt – like he read my mind – or at least my vibe. No winning here. I took a time out and snuggled him on the couch – just enough time to watch Blades make a daring rescue.

Well – we all made it through the first week of school. B’s multi-age class is going to be the perfect fit for him. He loves his teacher, and he is comfortable with his other 1st grade aged classmates. B is shy on the front end – always – no matter what the situation. We had no idea who the other same-age students would be – made me nervous – as he will spend the next 3 years with the same group. My worry was for not. I did pray for the best for all concerned on the front end. It seems that is what’s happening.

I try to remain hopeful and positive. It’s easier with B. He is a typical learner – actually a bit excellerated. This is a kid who started organizing his toast cubes at 9 months, wanting homework at the age of 3 ½ – painting still lifes and writing on his own at age 4. We got him a workbook and he blew through it. He started sounding out words and writing phonetically – on his own – no prompting from us. Reading came naturally for him in kindergarten. All of this to say it is much easier to trust the system when you know your child is self-motivated, organized and loves worksheets. This is so much different than my experience with E eight years ago, Mom. I still shake my head when I think about what I went through with E – and what I have continued to go through in his educational experience – with only short reprieves.

I am so happy that E’s first week in high school went well. He is so happy in Drama. This is a class that all of his IEP team in elementary felt he would excel in once in Junior High. He’s exuberant, funny and quite dramatic once he gets to know people. He’s shy and awkward (self-described) when he doesn’t.  I brought this up many times to the Junior High counselor and LRC teachers – all 3 years. I asked specifically if the Drama elective time could NOT overlap LRC classes EVERY year E would be there. I let them know that it wasn’t just for E – that Drama actually helps kids on the spectrum – socially. It also helps with an Aspie’s self-esteem.  I just wanted them to look at the bigger picture – considering there is quite the population of these kids in our community.

From Tony (the Asperger’s guru) Attwood’s book, The Complete Guide to Asperger’s Syndrome:

“Another option to help the adolescent who is sensitive to being publicly identified as having few friends and socially naïve is to adapt Drama classes…

Lianne Holliday Willey, in her book , Pretending to be Normal, describes how she improved her social skills by observation, imitation and acting (Willey 1999). This is an appropriate and effective strategy, especially in stage three of friendship development. The teenager with Asperger’s Syndrome can learn and practice aspects of adolescent interaction such as suitable conversation topics, the art of being a good listener, expressing affection for someone, and when and how much personal information to disclose. Drama activities can teach appropriate body language, facial expressions and tone of voice, and provide an opportunity for the young person with Asperger’s syndrome to act and rehearse reponses to specific situations, such as being teased.” ~Tony Attwood

The other piece for E, in particular, was the social interaction. I wanted him to be part of a group. He does not play team sports. He has no interest in competition – in any way, shape or form. He is in Boyscouts – but even there – clicks form. He’s not in one of them. Over this past year – especially this past summer – he is noticing that he has no one to just hang out with. To watch him come to realize this enough to express it is painful.

So – anyway – the request for Drama – at least one semester of it – fell on deaf ears every year. We were really disappointed. They suggested I have him audition for community productions. I explained that putting a kid with Asperger’s on the stage to audition was completely different than actually having a drama class (of which is not offered in our small community). I got no response. As a matter of fact – with each passing year – I got less and less of a response on anything I emailed or called about. I could go off on a tangent here – but I won’t.

I really am glad we all made it through this first week in such a good way.  B is golden.  E is happy.  I can’t help but hold fear as a back drop, though.  It’s not unfounded.

The thing that terrifies me about E’s happiness is the pattern of the past three years. I feel we were played. No. I don’t just feel we were played. WE WERE PLAYED.  I’m not talking Drama now.  I’m talking assistive tech.  Assistive tech he was trained on in elementary and was taken from him in middle school.  From the beginning – on through to the end of middle school. Here is the pattern. Teacher is nice, conversational, seems to have E’s best interest at heart. E and I happy – excited even. Teacher does not follow through. Sad. Dissappointed. Try to contact. We are ignored. Squeak louder. Response. School promises. Happy. More time passes. You realize there is no follow through. Disappointed. Squeak. Ignored. Squeak louder. Teacher says whatever she needs to. Doesn’t follow through. By then it’s the end of the school year. It’s time for the IEP meeting – they rush you through that. In doing so tell you that the thing that was on the IEP that you have been squeaking about? Well – they just don’t do that. AND – they are rude in doing it. She is no longer Mrs. Nice Guy. You get the feeling you are being looked at as the enemy for being persistent. You walk away thinking they have the right to do that – just say they “don’t do that.” You get info from respectable outside sources (quite by accident) that says they don’t get to just say they “don’t do that.” You bring that to their attention. They act like it was all just a big misunderstanding (because they have been caught) – and the cycle starts again for 7th grade. By 8th grade – as a parent – I was just pissed and expecting people to lie to me, avoid me and do whatever they had to do to skirt around me and the issue and not do whatever it was they didn’t want to do.  Yes, WE WERE PLAYED – and – unfortunately – E PAID THE PRICE.  I could go on. Might late tonight – because you know what? What I have to say is important. What I went through this last year? It’s important and might help another parent out there going through the same thing.

Our kids have rights. Our kids are not “less than.” The information and technology is there – to help our kids succeed in life.  There is a tech budget for our district.  A sizable one.  Special Ed kids have just as much of a right to that technology and a successful future as other kids. For these Aspie and/or dyslexic kids – it’s all there cognitively, and the resources are there for teachers to help them thrive. Do special ed teachers need training – to use the resources that are available to help kids with behavioral challenges and work with their dyslexia/dysgraphia? Yes. Do they need support in getting the training they need? Yes. At times – do we – as parents need to find help with behaviors outside of the school – in order to help our children function better in the classroom and – therefor – help with the teachers’ overall stress level? Yes. It’s not all on the teachers. There has to be a willingness on the parts of all parties involved. Student. Parent. Teacher. School. District.

There needs to be a paradigm shift around this. Eyes need to be opened. Hearts need to be opened. Communication needs to occur. In order to really help these kids – the teachers need to be open-minded to not just helping their “gifted” students. Because you know what? On the flip side of each of these Aspies’ and/or Dyslexics’ learning challenges – lies a gift. That gift – if honed – is what will make them a truly functioning member of society. Ignoring their gift and just pushing them through to graduation by saying that they know what they need to know – when they don’t – is not just dishonest. It’s actually cruel. It’s setting these kids up for a world of future hurt.

More on this subject later.

Dang – but I hope there is a shift this year – that we really are heading into a new era. I do.

I’m doing my part.  E’s doing his part.

I need to breathe and do the laundry.

It’s a hang-the-clothes-on-the-line kind of a day. 75. Sunny.  A nice breeze.

Have a great day sprinkling fairy dust – or lounging on clouds – or whatever it is you do all day.

I love you.




Soul Limber

Dear Mom –

Soul Limber is a phrase from Danielle LaPorte’s The Desire Map – a book that changed things up for me in a big, big way almost 2 years ago.

After finishing a video call with a client tonight – and singing the book and its author’s praises to said client (this was her first time hearing of it) – I pulled my tabbed up, highlighted copy off of the shelf. Tonight is a quote night. I knew I’d find the right quote for where I am in this place in time. And I did. It’s just right.

Take a journey into the things which you are carrying, the known –

Not into the unknown – into what you already know:

Your pleasures, your delights, your despairs, your sorrows.

Take a journey into that, that is all you have.

-Jiddu Krishnamurti

That’s where I am at. I feel I am exploring where I’ve already been – and where I am right now – without judgment or anger. There are lessons every day – but honestly – right here – with you – I just get to write a letter. It’s what you and Grandma craved from me – and what I was able to give you at certain times – not at others. I’d like to think that what I write to you about is all the stuff we would have talked about had you lived longer. We had started walking that path – we got few good years there – but not enough. Not enough to rehash all our stuff and try to lay it to rest. Evidently – that was to be my job in this life. I’m doing a good job.

So, yes, letters, you and Grandma loved to have me write letters. Difference is – this time it’s just as much for me as it is for you. It’s for us. I feel really good about it. I’m telling my story – and in some ways rewriting OUR story. That’s already been happening for quite a few years – in my head and heart. There were things that needed to be rewritten in order for me to feel worthy of many things that I hadn’t felt worthy of for so long – well, no, make that EVER. Yeah. And honestly – I still struggle – but at least now I know where it comes from – and I don’t think of myself as a whiney baby for having had hurt feelings and buried pain over things. I have come to a place of deep self-compassion and self-love. I can be very hard on myself – but not the way I used to be. These days – deep down – I have an admiration for myself that I never would have thought possible – I never would have contemplated. This – in a messy house. This – without a full time job. I admire myself for who I am – not what I do. It’s been a long time coming.

I have learned and changed so much in the last 18 years – and yet – there is much of me that is exactly the same – this includes where I came from. The difference is – now I’ve explored it. I’ve explored that known. I’ve explored it fearlessly. I’ve gone deeper than some people wanted me to. I’ve surfaced with answers and feelings that at times I thought might kill me – or at least pieces of me. Setting those answers down after a time of exploration – and moving beyond them – well – those are some of my greatest accomplishments in this life.

Doing that work – taking that scary journey into the known? That’s made my soul shine that much brighter.

I answered one of DLP’s writing prompts a couple years back. I think it may actually have been, “What do you trust?” Or “I trust______.” The answer came fast and furious. I flipped a piece of scratch paper over – and scrawled:

I trust my story.   Past.

I trust my path. Present.

I trust my journey.   Future.

What was awesome to me in that moment of scrawling was that I truly meant it.

I still do.

I will continue to.

All things for a reason.

Nothing is random.

I love you, Mom.

I must sleep now.

Hugging you. As I typed it – I felt it.

So glad you started hugging me in the few years before you died.

So glad you kissed me cheek – because now I remember what it feels like.

I can’t imagine not.

I know you’re here – but I’d dig a visit.

Meet me in my dreams?




Like a River

Dear Mom –

Kahlil Gibran, Mary Frye and Carly Simon accompanied me to your Memorial. I read on death – and not death. The Carly Simon CD was one of the CDs still in your 5 disc changer. Ron was helping me with the house and turned it on and hit random. Like a River came on and he knew he needed to put it on a tape for me – which he did – and he gave me the tape and told me not to listen to it alone. Kat rode with me, and we listened on the way. Neither of us had heard it before, and it took us… So much of it rang true. Your brother was the messenger – pressing the button – knowing what to do – and bringing the song to me. That was 18 years ago today. The service was beautiful. It was a gorgeous sunny day – much like today. No. Just like today.

I need to tell you more – to get it out – to tell of the day of – and the month that followed. I will. My head is swimming with all of it right now. The timing, the necklace, Circle of Stones, the dragonfly and heart rock – the sweat lodge with Jakie, my drive and tattoo. There is so much story there. I know you know much of it already. Still. I want to tell you about it. I want you to hear it from me. I want to own my story.

But for now I’ll leave you with what I read at your service and listened to that day. I am again – just so tired. I will sleep tonight. I can’t pull up all my stories tonight. Sleep is the key. Tomorrow.


From Kahlil Gibran’s The Prophet:

Then Almitra spoke, saying, “We would ask now of Death.”       And he said:

You would know the secret of death.       But how shall you find it unless you seek it in the heart of life?       The owl whose night-bound eyes are blind unto the day cannot unveil the mystery of light.       If you would indeed behold the spirit of death, open your heart wide unto the body of life.       For life and death are one, even as the river and the sea are one.


In the depth of your hopes and desires lies your silent knowledge of the beyond;       And like seeds dreaming beneath the snow your heart dreams of spring.       Trust the dreams, for in them is hidden the gate to eternity.


Your fear of death is but the trembling of the shepherd when he stands before the king whose hand is to be laid upon him in honour.       Is the shepherd not joyful beneath his trembling, that he shall wear the mark of the king?       Yet is he not more mindful of his trembling?


For what is it to die but to stand naked in the wind and to melt into the sun?       And what is to cease breathing, but to free the breath from its restless tides, that it may rise and expand and seek God unencumbered?


Only when you drink from the river of silence shall you indeed sing.       And when you have reached the mountain top, then you shall begin to climb.       And when the earth shall claim your limbs, then shall you truly dance.


Do Not Stand at my Grave and Weep  ~Mary Frye

Do not stand at my grave and weep I am not there; I do not sleep. I am a thousand winds that blow, I am the diamond glints on snow, I am the sun on ripened grain, I am the gentle autumn rain. When you awaken in the morning’s hush I am the swift uplifting rush Of quiet birds in circled flight. I am the soft stars that shine at night. Do not stand at my grave and cry, I am not there; I did not die.

“Like A River”  ~Carly Simon

Dear mother the struggle is over now And your house is up for sale We divided your railway watches Amongst the four of us I fought over the pearls With the other girls But it was all a metaphor For what was wrong with us As the room is emptying out Your face so young comes into view And on the back porch is a well-worn step And a pool of light you can walk into I’ll wait no more for you like a daughter, That part of our life together is over But I will wait for you, forever Like a river… Can you clear up the mystery of the Sphinx? Do you know any more about God? Are you dancing with Benjamin Franklin On the face of the moon? Have you reconciled with Dad? Does the rain still make you sad? Last night I swear I could feel you Moving through my room And I thought you touched my feet I so wanted it to be true In my theater there is a stage And a footlight you can always step into… I’ll wait no more for you like a daughter, That part of our life together is over But I will wait for you, forever Like a river… In the river I know I will find the key And your voice will rise like the spray In the moment of knowing The tide will wash away my doubt ‘Cause you’re already home Making it nice for when I come home Like the way I find my bed turned down Coming in from a late night out. Please keep reminding me Of what in my soul I know is true Come in my boat, there’s a seat beside me And two or three stars we can gaze into… I’ll wait no more for you like a daughter, That part of our life together is over But I will wait for you forever Like a river… I’ll never leave, always just a dream away A star that’s always watching Never turn away We’ll never leave, always just a thought away A candle always burning Never turn away The moon will hide, the tree will bend I’m right beside you I’ll never turn away

I know that song by heart. It ALWAYS brings tears.

I don’t feel your presence the way I used to – for the most part.

But Mom, lately, I do.

I think your soul is here with me in this.

With each letter – I feel stronger. I’m not really sure what that means – not even sure that I could describe it. It’s just a feeling.

“Come in my boat, there’s a seat beside me And two or three stars we can gaze into…”

All love.






Dear Mom –

I’ve got to keep it short tonight.  I’ve been up until 1 AM the last two nights, and it doesn’t suit me.  Especially not these days.  The 5:30 rise is killing me.  I couldn’t do it this morning,  Slept ’til 6:15 and rushed around doing first day of school activities and soccer and a coalition meeting unshowered with one of those funky pulled back hairdos with the glasses on top of my head to hide (yeah right) my nappy hair.  Thank god for blush and mascara but, man, I need some beauty rest and a shower something fierce.  I’m sure you understand.

The boys both had amazing days.  Amazing.  Loved their classes, their teachers.  So flippin’ happy.  That makes me happy, too.  Do wish I’d had more downtime with them this afternoon and evening.  I am setting the intention to be fully present with each boy as they arrive home tomorrow.  I will be rested – and clean – and welcome them with yummy snacks.  Oh – I shouldn’t get ahead of myself.  All they need is me.  Well – I like yummy snacks, too.  That settles it.  Yummy snacks there will be.

For now I’m just going to type up some Mark Nepo quotes from The Book of Awakening.  You would have loved Mark Nepo.  He’s friends with Oprah.  Yep.  Do you remember how she was going to retire the show the year you died?  Well – she gave it another 10 years.  Now she has her own network and has awesome guests for a show called Super Soul Sunday.  People dis her, but she is still the bomb in my book.  Always seeking.  Always serving.  The Book of Awakening is one of her all time favorites.  I’ve owned it for 5 years now.  It’s a daily reader, but since I’ve read everything in it – I just jump around sometimes.  Tonight I flipped back to near my birthday and found some of the text I underlined.  I feel change is in the air.  I feel myself being carried in the right direction.  I’m following my heart, but I touch down and use serious footwork once the path is before me.  I trust, regardless.  It becomes easier all the time.  There’s no need to freak and search and push.  No need.  All is as it should be – and it’s working out the best for all concerned.  Yep.

“Of magic doors there is this, you do not see them even as you are passing through.” ~Anonymous

“Often as we are being transformed, we cannot tell what is happening.  For while in the midst of staying afloat, it is next to impossible to see the ocean we are being carried into.”  ~ Mark Nepo

Letting go and drifting off.

Just heard your voice in my head, “Hey, Suz.”

Good night, Mom.

More tomorrow.




My Aspie Boy Hits High School ~ Be Still my Beating Heart

Dear Mom –

So – today is challenging. It’s 10:20 at night, and I just got B down for bed. Thank goodness elementary doesn’t start until 9:05. We squeezed the last little bit of daylight out of back-to-school-eve. Yep. Oh. It’s fine. It is what it is. Tomorrow is the first day of school. I’m sure this letter won’t be long. My brain is a jumble. Feeling tired and emotional. My baby is going into 1st grade. My oldest hits high school.

What?!?! I know! E is starting high school. When did that happen? I swear he was just snuggling me in bed yesterday – 2 ½ years old – talking about the school bus stop (his phrase for school bus) and minding his manners (channeling you), curling up in a mesh laundry bag on the kitchen floor while I was making dinner – and pressing his face up against that bag ‘til that face was good and flat – then calmly explaining to me (through the bag and pressed lips) that “this is what it was like in your belly – it felt just like this.” Yeah. Freaked me out, he did. Wasn’t the first time or the last. There is something about that one.

On another subject, E informed me today that he has not spoken to nor texted with his Dad in months. E was initiating for a while. He stopped. I think he is giving up. It breaks my heart to watch him do this. I know that pain all too well. You know – I pushed their relationship for years. E was in therapy once a week for 2 ½ years – for transition issues related to his anxiety and sleep issues. He’s an aspie and the transitions were just stacking up for him. He was overwhelmed with change – J & my marriage, a move, new school and baby. He was happy but not. We did parent sessions once a month with his therapist. His Dad showed up on the front end, but pretty soon it was just me and J showing up. His therapist helped us understand that there may come a time where we might just have to help E grieve the loss rather than try to hold the relationship together for them. That was hard on me. I had a hard time letting go. They had done so many years of every other weekend and longer visits in the winter and summer. I was determined that their relationship would not go down the tubes. I brought my own past into it. It wasn’t mine to carry, though. I had to learn to separate them out. All these years, I have never uttered one mean word to E about his Dad. These days, though, the conversation is opening up. My piece is reassuring E that what is going on with his Dad has NOTHING to do with him – not his issues – not anything he did wrong. He was so quick to turn it on himself on the front end – as kids do. I will continue to support him in knowing that parents are supposed to act like parents. Kids shouldn’t have to remind their parents to parent. Nope.

So, yeah. Aspergers, dyslexia and severe dysgraphia are already on E’s plate. Add in a dose of absent blood father… Ugh. E is amazing – a trooper. He has his moments – but damn, don’t we all? And who wouldn’t? We just keep on keepin’ on.

I wish you and Grandma had known about Aspergers and dyslexia with your boys. It’s in the genes, Mom. I know you both knew something was going on with your boys but couldn’t figure it out. Well, I have. There is a lot more information out there these days. The internet and books are a wealth of information. Being an advocate for E takes up a good chunk of my life. It’s exhausting at times, but I am so glad I know. Getting that diagnosis when he was 6 was HUGE, because for a good year and a half (I had been a single Mom for 5 years at that point) before that – things were getting crazy, and I had NO idea what I was dealing with – only that it was getting worse all the time. The behaviors were over-the-top. I was getting pushed into furniture – things were being thrown at my face (like hot wheels). Time outs and taking his trains (currency) didn’t work for shit. I tried spanking once and knew it wasn’t right at all for our situation. Anytime we tried to leave the park it was a HUGE scene that left everyone staring – and me mortified. I was working hard days as a nurse, rushing home to get E from the bus and spending my evening dealing with behavior that was beyond me. I didn’t know where to turn. I was depressed beyond belief. I don’t remember feeling that my recovery was threatened, but I do remember wanting so badly to make the anxiety stop. What was going on with me at that point is a whole other story. One important fact is huge, though. I was lifted from the nursing job from hell – LIFTED – and had more time time at home so was able to pay more attention. Once I was rested I could tell something bigger was going on. Late summer was when the fecal smearing started. That’s when I knew I was in WAY over my head. I had just gotten a laptop – and started googling what I was seeing. Two things came up at that point – sexual abuse and autism. Well – I was in therapy and spoke to my therapist about this. He suggested I get Eli to a therapist – which I did. The rest is history. History that I will go more into detail about sometime in the near future – maybe even tomorrow. Didn’t I say this was going to be a short post. Ha!

Helping my Aspie boy is one of my passions. Being his Mom is one of my superpowers. Minecraft is one of E’s passions. Being an amazing human is one of his superpowers.

We have had some amazing synchronicities occur through the years that have helped us move Eli forward in life in a positive way. Synchronicities that I know do not occur for every family in this situation. Different ones show up each year – but they KEEP showing up year after year. I have come to believe I am a gatherer of information and a messenger – that I can serve the greater good through our experience. I have to maintain a balance (to the best of my ability) between fierce Mama Bear advocacy and letting go. That’s not easy. It’s so hard when you see the potential and are afraid others aren’t looking for the good. It’s painful when you feel others are dismissing your child’s gifts and therefor shutting down possibilities for his future. It’s hard (infuriating at times) when you can see the barriers to education as clear as day – and nobody else can see them – and if they do they are telling you the barriers don’t exist. Yeah. That’s the real challenge – getting others to see that on the flipside of these kids’ “disabilities” lies a gift – or many – that can propel them in life if recognized and honed.

Well – more on this later. I could go on forever. You know I could. But no – I’ve got to post this before midnight to make it 3 letters in 3 days. I’ve got an early morning ahead.

I do love you.

Getting all of this out feels good.

Haven’t seen you for a while. My dreams not good enough for you?

Are you dancing with Thomas Jefferson on the face of the moon? In a good scrabble match with John or Doug? Having a Jack and Coke with Grandma? Walking hand in hand with Grandpa?

God – I miss you all.


Love you much.




On Community ~ Connection ~ The Common Thread

Dear Mom –

Today I find myself thinking of your involvement in chatrooms in the late 90’s – especially the Adenocarcinoma rooms you frequented in the last few months of your life – pages and pages of communication I found printed out after you were gone. I saw it as information you were gathering from people who were in your position – information on your illness.  Reading them was painful. I threw a bunch away at your brother’s prompting. Now I am hoping I held onto a few. Mmm. Actually – no – I don’t need to have them in hand to remember them. They were. You were. I realize now that you were not just gathering information. That was true community for you. I see that online community can be just that. TRUE community. And for some – that’s all the community they’ve got. It started out that way for me.

You’d be AMAZED with the direction things have gone with online community, Mom.  Yep.  That’s what we call it.  Online.  It’s no longer just “the web” – the web you were so intrigued by – the web that you pushed on me.  Laughing. I remember the day my first computer showed up at the door.  You having my brother hook it up –  your forcing me to get an AOL account.  All so foreign.  All YOUR language.  That thing was an unwelcome guest in my studio apartment.  I know you’re having a good laugh over this.  Yeah.  You were a front runner.  You owned one of the first Macs.  Did you know there is one in the Smithsonian now? Yes – all of this online stuff would be SO up your alley.  You would have been a blogger if you’d stuck around a little longer.  No doubt in my mind. There is Facebook.  Friend and foe – more friend these days – to me anyway – because I am finding my Tribe through it. Six years ago I hated the idea of it. You couldn’t even find me if you Googled me (Google – that’s right – you don’t know – it was registered as a domain 10 days after your death – just looked that up). Anyway – 6 years ago I was pretty darned hidden, and I liked it that way (or so I thought).  Now I just don’t care. I AM HERE. I don’t know that you’d be all over Facebook, but you WOULD love checking in on your children, grandchildren, nieces and nephews – pulling up pics at the touch of a screen.  There is some good stuff going on out there in the cyber world (some not-so-good stuff, too) Thing is – being a part of an online community helped bring the strength that enabled me to reach out for community in non-virtual ways. My community is growing all around me – On-and-off-line.

Community saves me from myself.

I am not sure I’ve ever felt my connection and impact within various groups as strongly as I did yesterday. Yeah. It was a new experience. The realization began coming to me while sitting with a dear friend in a café here on the island. I began to realize we’d been building this connection for years. I was completely unaware that we would ever be this close for the first few years we knew one another. We were discussing children with learning differences and how we plan to make a difference for them. We were laying groundwork, and I felt overwhelmed with gratitude for how far I’ve come – how far we have each come – in our journey – and this particular path we both find ourselves on. Over the course of the last few months, we have realized we have far more in common than we ever knew. She’s amazing and I’m amazing and we are AMAZING together. HUGE HEART EMOTICON. After 2 ½ hours of coffee and chatting and strategizing and belly/snort laughing – my husband called with a “gentle” nudge to get my arse home. As the two of us were running out – we saw another woman – who we both know – who is part of another amazing community that I am just getting involved with. That community supports kids in staying clean and (I am hoping) will support kids who find themselves in muddy water. I found myself immediately drawn to them once I figured out what & who they are. I’m jumping in with both feet there. As I looked at her yesterday – and waved and said, “I have GOT to go NOW. No chat. NO chat!” – I laughed. We had just had a short deluge and there were puddles all around. The sun was coming out and we were all smiling, and I could not help but think, “Holy shit. I’m finding my people.” True connection. True community. True tribe. And my heart (((SWELLED))) again.

I went running off to grab my car and get to the grocery. Once there, I zipped around – grabbing the dish soap and produce and grillables – running into some people and stopping long enough to smile big – say “HI – I’m rushing,” and hug them tight. I realized I have had this experience numerous times over the past week. I know and care for people right here, right now.  Again – heart (((((SWELLING))))). Feeling LOVE. Giving LOVE. Yes. That’s where it’s at.

I reach checkout. The line is long. The baskets are all full. Crap. Call the hubs. “I’m in line. It’s long. Turn the oven on to 425. I’ll be there soon.” I check my email. WHAT? All kinds of notifications were coming in. People were reaching out to me over the letter I wrote to you yesterday, Mom. Dawn at She Recovers shared it – and people read it – and it touched them. A bit of my story – our story – touched them. I read Dawn’s comment, and another woman’s who said it brought healing tears – and that was it. My heart popped WIDE OPEN. Wide open. Tears welled up. I got my stuff to the car and sat there and cried.

The words came in repeated waves in my head and heart. I AM NOT ALONE.

The connection, community and common thread of recovery (in all its different forms) is SO strong. The pain, authenticity and vulnerability that is there for each of us is what binds us together. Each of our stories strengthens the bond.

This encourages me to keep sharing. My sharing encourages others to share.   That became so crystal clear yesterday.

So – here I go.

I miss you, but yesterday helped that lump of pain shrink.

I still love you with all of my heart.

Please meet me in my dreams.