If you want to instantly find your way to Ben’s heart, bring him a train. My friend Jen must have known this because she came to my house last week with one in hand. “It’s a breakdown train,” she said, in her bubbly way… both of us noting the double meaning as the words spilled out of her mouth.
We had originally planned to go on a walk. I desperately needed some time to myself, some time to finally move my body after weeks of illness (mine and Ben’s) Not to mention packing up an entire house for our move last Sunday… I needed some air.
And then I got the call from the school, the third call that week. Ben has been falling. A lot. Like fall-out-of-his-chair-for-no-apparent-reason-falling. By noon it had happened eight times that day. I called my friend to cancel and to ask her to meet me at my house so I wouldn’t have to be alone. As I said to her on the phone, Please come over because I’m about to lose my sh*t and I’m behind the wheel. “Don’t lose your shit yet!” she warned.
So she arrived with the train in hand and explained to Ben that this is the train that comes in and helps the other train back to the station when it breaks down.
It turns out these falls he was having were actually atonic seizures and they happened up to eight times a day for about a week. (They mercifully stopped last Friday) They are not harmful in and of themselves but his risk for a secondary injury from a fall is high. We had to send him to school with a bicycle helmet which he was delighted to wear. Thank god for three year olds… all of his classmates are jealous that he gets to wear a helmet and they don’t.
A chorus of:
Why does he get to wear it? It’s my turn!
He has to share!
Why isn’t he sharing?!!
This is what the teachers were hearing all day long. They have now instituted Helmet Day on Tuesday in Ben’s honor.
We are in the midst of EEG’s, MRI’s and second opinions, and trying not to panic. We don’t have a definitive diagnosis yet, but we are culling our resources and trying to make choices with the most grace and presence we possibly can.
Smack in the middle of neurology appointments was our move last weekend. (My Mondo Beyondo dream of finding a new home in our neighborhood came true) Help came from so many places. A friend flew in from Los Angeles, another drove from Santa Cruz to pack our things, others watched Ben while we furiously shuttled boxes to and fro. Not to mention the psychic support from people who love us and love Ben.
Our breakdown train is long and hearty. It comes bearing gifts of all kinds–laughter and joy, homemade lentil soup and squash risotto, able hands ready to dive in, generosity beyond beyond, and fierce love at the bottom of all of it. I imagine it like Ben would: a circus train full of animals of all kinds, carnival music and bright colors, ready to swoop in and put us on the track again.
I had a great conversation with Ben this morning that I am sure came from spirit itself.
Ben: Did you put oatmeal in my lunch?
Ben: I don’t like oatmeal.
Me: No oatmeal in your lunch.
Ben: I don’t like pasta too.
Me: I didn’t put that in either.
Ben: I don’t like cheese mama.
Me: Ben, I promise, you will be so happy when you get to school and see what’s in your lunch.
Ben: (pause) But I’m happy now mama! (and then he shouted for extra emphasis) I’m here! I’m happy now!
Straight from the Buddha’s mouth and what I have to keep reminding myself when I get scared about what the future holds: He’s here. He’s happy now.
Ben is a blessing. He is in my prayers (as well as you and your husband). Thank you for sharing everything you posted today. Congrats on the dream coming true too! Much much much love.
More weeping here. Wishing you so much strength as you work through this diagnosis and whatever it may entail for the future. But Ben is an old soul, we have all seen it from his very first images. He knows so much. He is here. He is happy. I’m so glad that so many were able to be there in person to lift you up. Just know there are many more out there wanting nothing but the best for your family.
Having children is the hardest thing… it is the love that just cracks every part of us. Sweet thoughts to you and your family as you fall apart and get put back together over and over.
Wow Andrea. Ben is such a beautiful little boy, in ALL ways! I am sending you good, healing, strong vibes from the east coast. Be well and take care. 🙂
Love, light, joy and healing your way! Xoxoxoxo
Sending a lot of love and light in your direction.
oh ben…such a wise one. 🙂
sending lots of love y’alls way.
I am so touched by this post and am truly thinking of your family and your sweet, sweet boy and sending beautiful, positive thoughts for his good health.
Oh Andrea. My heart goes out to you and your husband and son, and to your fabulous friends and loved ones who hold you three tenderly, supportively. You will weather this storm.
There is no question who the superheroes of this story are. This journey is heartbreaking, joyous, inspiring… LIFE. Just put one foot in front of the other and feel the grass through your toes. Much light and good juju.
We are sending you light and love, from afar. Lifting you all up in our thoughts….
Andrea – your strength has brought me to tears, it’s incredible and inspiring. Love & blessings to you & your family.
Your conversation with Ben brought tears to my eyes. I hope the coming days bring more peace. Sending thoughts for physical health your way.
Straight from spirit indeed. From the mouths of babes, they say, and not without good reason.
I’m pouring my love into the engine of your breakdown train, since long distance fuel is the best I can do from here.
Wow. I love it when they say what you need to hear! And it is so cool that they are going to have helmet day at Ben’s school. There is much love and wisdom around you. Sending you healing thoughts.
Thanks for sharing. Motherhood presents all sorts of challenges. One of my three kids has a chronic illness but an amazing spirit. Listening to our kids can teach us so much. Yeaaa for helmet day!
Prayers for Ben. All the way through.
And YAY for moving… So happy for the three of you. 🙂
It’s funny when I read your post I remember the concept of ‘dismantlement’ that you introduced to us in MB…
I’m happy he’s here too!
Oh my goodness. I wish I were in SF to help you move, spend with Senor Ben or just give you a hug. Andrea, I would move for mountains for you. You have helped me grow beyond my comfort zone, you have aided me in opening my heart, you have sheltered me with your kind words and those expansive blue eyes, you have made me believe in the possibility of hope when cynicism would have been easier to embrace, you have guided me to authenticity. I adore you and I am here for you.
Love to Ben oxox
I send prayers from my home to yours.
Andrea,sending you love and prayers.Ben is beautiful.
oh goodness, grace, peace and healing to all of you… and many, many non-oatmeal, non-pasta, non-cheese lunches for days to come…
My thoughts are with you, I know how scary it can be. Our 5 year old daughter was diagnosed with epilepsy last october. She started having seizures suddenly and I know how scary it is, and how emotionally draining…not only the seizures, but the eeg’s and the mri’s too. Sending you lots of positive energy and hoping everything will be ok:)
Dear, sweet, wonderful Andrea …
my heart is with you and your husband and Super Ben. I have been wearing my superhero necklace for the past three days … can’t take it off… and I had no idea why … I am sending you all the positive and healing energy I have and all the superhero powers you put into your beautiful necklaces.
I know it doesn’t necessarily help, but I am willing to carry the worry for a little while so that you can enjoy the moment. I am so glad you have such a fantastic support system! Congrats on the new place!
Just know you three are in my heart and in my thoughts.
This post just sent chills down my body! What a profound comment by such and insightful little man!
I had been trying to honor your making a clearing by giving space–not clicking on your page in hopes that I would find something new and inspiriting. I avoided it so that you somehow didn’t feel pressure to move through the clearing too fast. I was delighted to see a new post!
Thank you for letting those of us who find inspiration in your words, life, and spirit be part of those people who help support the breakdown train! We send our fierce love from miles and miles away, from strangers you’ve never met but so kindly share your life with!If we can’t physically dive in and help, thank you for letting us help in spirit!
Oh what a difficult situation for you all. I wanted to informally offer help in the following sense. My hubby is a neuroradiologist here in Houston (reads MRIs and CTs of brain and spine), and if you wanted him to take a look at the films, let me know.
Dear Andrea and readers,
You really must check out my blog. I hope you like it.
and I am sure you West Coasters are going to love this one too: http://petuniafacedgirl.blogspot.com/“>http://petuniafacedgirl.blogspot.com/”>http://petuniafacedgirl.blogspot.com/
Precious Ben. I love that there is now Helmet Day at his school. What an awesome place. Praying peace of mind and heart for you as you strap on your own helmet…
Shanti Shanti Shanti
Dear Andrea, and dear Ben and Matt,
I will be keeping you all in my thoughts while you make your transition into the new home and wait to find out what’s going on with your little one.
A friend used to send me a line from Julian of Norwich when I was scared, so I’ll send it on to you: “All will be well, and all will be well, and all manner of things will be well.”
And I’m also sending you a word: “elne,” which is pronounced “EL-nuh” and means “Strength, courage (also, in Old English, zeal); in theology, strength vouchsafed, comfort, grace.” Strength vouchsafed to you. May you feel elning (comfort and grace) these days.
(And be sure to check your inbox at Mondo Beyondo, if you haven’t already.)
Sending lots of healing thoughts and love your way. I’m glad you have such a great support system–I love that you ask for the help! Hoping and praying for you and Ben…
The way you face your life continues to amaze and move and inspire me even after reading your blog all these years now. I’m saying an extra prayer tonight for you and your family Andrea. Hang in there.
The wisdom of children…its what we are always looking to rediscover in ourselves. They do crack us open in so many ways. Sorry about the breakdown train. I have certainly taken my share of rides on it.
Congrats on the new place, and I send you healing thoughts and hugs for Ben (and yourself)
The wisdom of children…it’s what we are always looking to rediscover in ourselves. They do crack us open in so many ways. Sorry about the breakdown train. I have certainly taken my share of rides on it.
Congrats on the new place, and I send you healing thoughts and hugs for Ben (and yourself)
I love that there is Helmet Day.
Congratulations on your dream coming true!
Sending you so much love and light and healing wishes.
you don’t know me; but I feel you have allowed us to know you just a little – my heart expands to carry you and your family.
oh andrea, i am so right there with you. my sweet girl is heading in for surgery on tuesday and i am digging deep to be brave and be here now… tears started rolling when i read what ben exclaimed! i think i will print it out and stick it on my computer!
yay for the big beautiful souls inside those tiny bodies!
sending love, healing, and laughter.
It’s not the first time your wisdom, your trials, your joys have brought a flood of tears to my eyes. Your blog is truly a manifestation of grace, and all things good in us human “beans”. Thanks for giving us the opportunity to grow, and learn to open our hearts to a perfect stranger, to each other, to ourselves.
Wishing you and your family strength, comfort and love for the tough days. And thanks for letting us enjoy the magic that is Ben – he totally rocks! 🙂
may i ask, how in the hell are you able to offer us mondo’ers all that you do when you are in the midst of this? you are nothing short of awesome and amazing and though it is scary right now, just know we are all here, holding prayers for ben close and frequent.
i needs to get me one of those breakdown trains though…something about the name just sounds so right.
I’ve been hearing a renewed strength in your words lately. What a gift you are, not just for your family and your close ones, but to all of us your readers. Thank you for sharing your path and for transmitting your strength to us.
Hoping and praying for the best for Ben.
Hugs across the world from Melbourne.
Am thinking of you.
Is sweet Ben, illness life threatening?
Let’s start a prayer group.
You’ll find God to be a great comfort, you will see.
my new mantra… I’m here! I’m happy now!
Thank you Ben.
Big love and support to you and your gang Andrea. Ellie x
you have the most gorgeous little boy in the world, and my thoughts, my love and prayers are with and your family and i so hope that he falling is nothing serious.
sending love & light your way!
healing yummy thoughts going straight to ben.
with 2 boys i understand the breakdown train…
congrats on your new home!
from a distance i am holding a space of support and calm for you and ben and matt as you pass through this part of the journey…
ben seems so beautiful and clear.
Beautiful post. I can only imagine how scary this time is for all of you. Take a moment to breathe and feel all the love and energy coming your way. Be well,
you are an inspiration at your highest of highs and lowest of lows. my life is truly better having found your blog some five years ago. from your posts it is obvious that ben is a special little dude and as i read your words my eyes filled with tears. sending you peace, strength and nothing but the most positive of vibes to ben. he will be okay. he has to be.
oh, that got me teary!
Andrea, I don’t know what to say, as nothing can take away the stomach lurking fear you must be feeling at the moment, but I am thinking of, and hoping for the very best for you all.
And having read all the comments here, the grace, positivity and love that you have inspired in us all for so long is being reflected back to you on an awesome scale.
Love and hugs to you all… but especially big ones for The Enchanting Ben!
I love how even as parents are scared out of their minds, kids just continue to beam their light.
Helmet day! What an awesome preschool!
When my son wore oxygen, it was all the rage of the toddler set: built in plastic toy!
I hope things come into focus soon, and remember: your son holds the light.
Good vibes are coming your way from the midwest too. Thank you so much for sharing your experiences online. I am moved by how you share your life’s stories in such a beautiful way.
Oh Andrea, this brought tears to my eyes. Ben, sweet, sweet Ben – and sweet, sweet you. Ben is such a wise soul, that last conversation you shared, wow. Sending love and light your way.
Andrea, Big Hug and Squeeze. You are brave! You are brave! You are brave! And Ben…he’s leading the way on the brave train!
Oh god, indeed.
Thinking of you, Ben, Matt.
Lighting a Mary right now.
Hi! My heart goes out to you and yours.
And boy when they say “out of the mouth of babes” what a spirit moment between you and your son. Thanks for all you do to make Mondo Beyondo what it is!
aww, teary and grateful. xxxxx
Wow, just wow. Big hugs to all of you.
Oh, Andrea. Thank you for sharing. You’ve got love coming from Minnesota.
thinking of you and the family – love to you sweet one!
let me know if you ever need anything, we’re only 10 min away!
A stunning post. The story’s getting interesting….
That was such a lovely post! I am amazed at (and inspired by) your ability to be inspirational in the midst of anxiety, illness, and general chaos. I’m so happy for you that you have such a supportive community (literal and virtual) and such a resiliant son. Sending prayers for a swift, accurate, and manageable diagnosis for Ben and for continued strength and support for you all.
in incredibly moving post andrea… thank you for sharing…
and do take care….xxo, kim
Sending you all white light and love…
Kim, the housecleaner
such a sweet and beautiful boy. keeping all of you in my thoughts, prayers and kindest of wishes. You are amazing.
oh andrea:: i am totally thinking of you guys and sending love! here’s to some healthy times ahead!
My thoughts are with you. I know a little of what you are going through. I had a couple year period where my daughter was sick on and off and they didn’t know what was wrong with her. It was very scary but we came through it and she is fine now. I know that will happen for you and Ben too. My love to the both of you…
Good thoughts for you and your family. I hope this stressful time ends in the most positive way very soon.
you are wonderful.
I’m so sorry to hear about all of this.
And I’m so glad that you are surrounded by love.
In your new MB dream house
and with a son who gets how GREAT IT IS TO BE HERE RIGHT NOW!
Thank goodness for breakdown trains, and thank goodness for the purity of spirit.
Wishing you all much more love and support and healing…
Those photos of your son are just beautiful. He’s so cute. I hope his health improves and that it’s nothing serious.
Sending hope and continued strength.
Yeah baby! “I’m here! I’m happy now!” IS mondo beyondo! xo
Helmet Day: I love it! Thank goodness for the creative-minded folks in the world.
You know, I was just thinking about how fortunate children really are. They are sharp, yes. Intuitive, definitely. But they somehow GET it, that enjoying life is about being in the moment. Often when I look at your photographs of Ben I smile at the fact that he plays his guitar, walks through the park, and bathes with total abandonment. As if to say, Is there another way to do these things?
Life has a peculiar way of showing us just how strong we are. That you are able to find the words for your experiences tells me there is a fighter in you with a fixed flexed muscle. Do you know what I mean? And while it is perfectly okay to be angry, fearful, exhausted, sad, and on the verge of breaking down completely, you always press on. Because you have to. I admire that strength in you.
And your little superhero will forever stay in my heart and prayers.
I hold you and your beautiful Ben in my prayers. I can see his sweet spirit sparkle through those amazing eyes of his. Sending loving hugs your way.
You’ve gathered an amazing group of people around you. It would seem that most of them have left a comment for you, or held your hand, or made you dinner, or offered to help in some extraordinary way. I really don’t have much to add to that but I’ll be thinking of you and sending good thoughts.
Andrea, so sorry that things have been tough… you get through all challenges in life with so much grace and determination.
Ben is adorable, seriously stunning… a perfect reminder.
I hope things are on the improve every day.
Thinking of you often.
He’s so beautiful. Here’s to Helmet Day and to good news.
You are so strong and so very feisty, no wonder your son can turn to you with a beaming face and say ‘I’m here! I’m happy now!’ I don’t know you, obviously, but by the sounds of things Ben just ‘gets’ joie de vivre in a way that many people, sadly, never experience. What a wonderful soul. And what a great team you guys make.
My warmest, strongest thoughts are with you.
You’re so courageous and full of beautiful strength. Ben sounds charming and sweet. My prayers are going out to you and your family.
here and happy.
simple and wonderful.
beautiful photos of ben!
Thinking great big good thoughts for Ben and your family.
I am sending lots of good healthy wishes for you and your Ben (I have a Ben too). He is so beautiful! And so are you. Please keep us updated so our prayers can be, too. “I’m here, I’m happy now” just made my whole day.
p.s. When you accepted my FB friend request, you didn’t fit in any of my previous categories. So I put you in “Family”. 🙂
they are our wise teeny teachers, our children. and ben seems very wise. sending you all strength, joy, and support. warmly, s
On the last rainy day, Scarlett chose a wide-brimmed floppy hat and told me, “It’s a Ben hat.” It took me some time to figure out what she meant, but I realized that’s Ben’s jaunty style had caught her eye and she was glad to be able to emulate his signature floppy-hat look for the playground.
I hope you have not moved too far away. Send me the update!
A longtime reader, sending you so much hope and good thoughts. I’m impressed by the courage you have and share.
Love love love to you and your family.
Just thinking about you and your sweet boy. I hope all is well. Love and light to you all!
I am an often reader never commenter, but I was really moved by this post, Andrea.
Lots of blessings and thoughts and hope, and a big hurrah for teachers who institute helmet day.
holding you all in my heart.
Let there be helmets and healing.
Let there be new house happiness.
Let there be many more mondo beyondo dream realizations.
Let there be peace.
And as for breakdown trains – it is often true that when there are breakdowns we see most clearly and abundantly the love that can flow from others, from ourselves, and out onto our world.
Thanks for sharing yet another tale of divine love and grace and power and goodness and joy and friendship and children.
I’m here now. And I’m happy.
Such power in those words.
Mucho love and light to you and your family.
I’m happy to hear that your Mondo Beyondo from last year’s inaugural course came true! That’s a biggie.
And I think I may need to stick, “I’m here! I’m happy now!” on my bathroom mirror and fridge. Just. Too. Good.
Lovely photos and the circus train image is a great one. They say this is what life looks like when it’s working. I uttered a little “Hmpf” to myself even as I typed. 😉
Thanks for another super post, even in the middle of it all.
Thank you for your bravery in sharing your stories. Your grace and your honesty has been an anchor for me during my own hard times. Know that my heart and prayers go out to Ben, and your family.
Thank heavens for wise little boys, friends who are able to show up (like really show up on all levels), and dreams that come true. You are all strong and brave beyond measure, full of grace and wisdom. It’s all you need.
I check in a few times a day for an update, and every time i see the words ‘break down train’ at the top of the page my heart sinks a little. my family is going through a heavy confusing overwhelming time right now too…feels like being tossed in the sea. i’m sending you and your family big love and healing light.
Oh, Andrea. I am crying crying crying. You have such a beautiful way with words and your lovely little man makes my heart swell. Good thoughts to you. So many. I hope you feel them all.
I’m all choked up right now.
I started reading your blog back when you were just pregnant with Ben. I was having problems getting pregnant, and a friend suggested I read your blog for comfort. I have enjoyed seeing all of the cute pictures of him, and knowing the stress and pain of infertility had a happy ending (it did for me too!) Now I recently revisited, and am sad to hear you are struggling. I just want to thank you for sharing your struggles as well as your joy. Your thoughts and perspective are powerful healers — to more than just yourself. My daughter and I just sent Ben some good healing vibes. We will continue to do so.
I LOVE HIM!
Ben is a sweetheart. I love that last photo of him; he looks so grown up! (Three already? I can hardly believe it!)
Breakdown trains are a blessing. I am thankful for mine and for yours.
What a week, what a lot of angst from the universe, and for this I send along many hugs and as you noted, psychic support. That Ben is beautiful, and his skin glows, and he’s bursting with life, and I had some strange things happen physiologically when I was a kid that they never could explain … so therefore I chose to KNOW that your lovely son will be OK. Thank goodness that the school took note and that you are so pro-active.
All the best to the three of you.
Thinking of you, Ben and your hubbie. Know this must be difficult time for you as his mommy. Sending healing and calming thoughts your way xx
Ben is really a beautiful little boy and he will be in our thoughts and prayers, as will you.
in a way it seems so crazy to have such a strong pull on my heart for you and your beautiful Ben, we have never met and yet thru your sharing and words i feel like we are old friends separated only by geography. i am sending all of my powerful thoughts of healing, home and joy your way, you are a miracle Andrea as is your Ben and each day of his bountiful happiness
dani~ inaugural mondo beyondo class alum
my heart goes out to you through this rough time. and prayers for answers soon. be well with your little buddha, friend!
I hope you have good news soon. Much strength to you.
Your family is in my prayers, Andrea. May you truly feel and receive the love around you, especially now, and may you hear good news soon about your beautiful, amazing boy. *hug*
It is always a delight to read your posts and view the accompanying photos. That breakdown train was so perfect for the situation–and the fact that Ben happily wore his helmet to school and now his class is having a helmet day is absolutely awesome. And his words as you packed his lunch–how precious. What an amazing little guy you have!
You and your family are in my thoughts. I hope you find answers and peace and joy in your days as you go about the search. Congrats on your new house!
best post i’ve read in a long, long time. children know so much more than we think they do.
lots of happy thoughts your way!!!
awww. little ben.
just hearing of all this now.
you know i am sending you
all lots of love and healing!!!
so glad you are supported
and loved in such beautiful ways….
you all are always in my thoughts and prayers.
this is one of the most incredible posts I’ve seen. i am very fond of Ben. several years ago when I was at my lowest of lows – i came across your blog. and someTime down the road you brought Ben into all of our lives. thank you for being you. Thank you for Ben. may the winds of change heal him and keep your family moving forward!
from the bottom of my heart and soul, i wish your little ben good health, and happy news at the end of the breakdown train.
my prayers are with you…
Hello Jen, sorry that I’m just now posting a comment but I’ve also been busy with a move and catching up on my google reader. Anyhow, I just wanted to give you some hope with your son’s current atonic seizures…you see over 20 years ago my nephew went through a spell and my sister and husband were scared by all the doctors and tests and the label of “epilepsy”. Ryan is now a full grown, happy, healthy young man. When he was a toddler he went through a spell of grand mal seizures and was hospitalized. For about six months he would have periods of this…then it all disappeared. He was medicated for a time but she had a progressive doctor who also believed in alternative therapies. So my sister opted for a clean diet method as well. She took him off all prepaired baby foods (no preservative or wheat products) and made sure he had olive oil in his diet…apparently it helps with critical brain function as this stage in a fast developing toddlers life. Another thing that can trigger the seizures is “holding their breath”…so we were all on pins and needles and tyring not to make Ryan upset…not crying or temper tantrums…which was hard when it came to food choices…kids want what they want. So she simply didn’t have junk food in the house so that he couldn’t ask for it. Also she didn’t let him watch TV with all the food commercials…lol She was real tired of the kiddo videos…but it was worth it not to have a tantrum. Here is a great slide show on all forms of seizures…it’s a powerpoint slide and looks long but has a lot of info…hope this helps 😀
Sorry for the typo Andrea…was thinking Ben and about your friend Jen…whoops :[
lovely, so so lovely
nice and cute=)
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I hope you took my jest (that one you commented on) in a non-literal manner – it was supposed to be self depricating, not critical of others. The last thing I want to do is hurt someone’s feelings when there are serious issues at hand.
Pertinent issues aside, that is one cute friggin’ kid.
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