living a well tended life... at any age

i wish you knew

Late last year someone shared this post on Facebook.

And it was like someone punched me in the throat each time I read (and re-read) it.

See, this year I am the parent of “that kid”. Who has teachers who are as loving and compassionate as the writer of the piece clearly is too.

And though I’m always, eternally conscious of the struggles we are experiencing, seeing it in writing – from the perspective of a total stranger – reached me in a totally new and very powerful way:

“I can’t tell you that his asthma medication makes him agitated.”

(“Asthma medication” most likely meaning prednisone. “Agitated” most likely meaning violent).

And other things too:

“I can’t tell you that I meet with his parents EVERY week, and that both of them usually cry at those meetings.”

“I can’t tell you that I have been meticulously tracking her aggressive incidents for 3 months, and that she has dropped from 5 incidents a day, to 5 incidents a week.”

“I can’t tell you that the school secretary has agreed that I can send him to the office to “help” when I can tell he needs a change of scenery.”

When you come across something that so completely taps into what you yourself are experiencing at that very moment, it is both devastating and enlightening at the same time.

And yet it has taken me many months to share it. It felt too raw, too painful, to put out there. And so I waited, assuming the “right time” would come – and here it is.

noah

We have seen astounding improvement in Noah – in every way imaginable. And we have no reason to believe that it will not continue. And yet we cannot seem to crack the code that will keep him from having violent outbursts at school. Is it the prednisone (even though he is on a drastically reduced dosage, and we continue to wean him off it entirely)? Is it now simply his “go-to” behavior, brought on by the prednisone? Is it a chemical imbalance from having multiple seizures last year? Is it a psychological disorder? We have a formal neuro-psych evaluation scheduled soon, that will hopefully provide answers to these difficult questions.

Of course, we are utterly consumed with this, and worried that he will not be able to stay in a regular school setting. That he will never have any friends. That he will never be “normal”. That our friendly, funny, happy, sunny boy will be overwhelmed by the darker behaviors, until that is all that remains. That he will be isolated, restrained, angry and left behind. Left out. Left alone.

I go to school events and birthday parties (when we’re invited), wondering what the other parents have been told by their kids – what they’ve heard on the playground – what they must think of us as parents. Because of course none of them know about Noah’s condition. Because, as the writer points out, “I can’t share personal or family information.”

Even though we’ve made it clear that we have no problem with anyone knowing about Noah’s epilepsy. But we get it.

So I’m sharing it here – for all of the parents in Noah’s school – and for all of the parents who are doing their best to support their child – “that kid” – through a horrendous time. A time made all the more stressful when it is being played out in such an open and public arena as school.

These are the things I wish you knew:

I wish you knew that if Noah laid a finger on your child, we make him write  – and hand deliver – an apology note the next day.

I wish you knew that we have Noah signed up for nine – yes, nine – different activities over the course of the week, to teach him social and physical skills that he missed out on over the 3 years that his epilepsy went undiagnosed. Because we know he’s going to “get there”, and we want him to be well-equipped and ready when he does.

I wish you knew that every day I get a phone call – at my request – from Noah’s teacher, to give me a recap of his day (for better or worse), so that we can celebrate the achievements, and – more importantly – address any outbursts with the appropriate consequences. So at around 2:15 each day I go into a sort of paralysis – staring at the phone and simply waiting for it to buzz.  I can’t write, work, eat or do anything other than wait – with a knot in my stomach and a lump in my throat.

I wish you knew how hard it was to see this little boy bound onto the bus each day, promising to “be a good boy, Mommy” – knowing that so much of his behavior is beyond his ability to manage at this point. My heart breaks over this.

I wish you knew how much – how very, very much – it means to us when you call or write and ask about Noah/insist on a play date/make me go out for lunchdinnerdrinks to talk about things. Mike and I feel utterly isolated so much of the time, and your outreach (in the midst of your own busy lives) is truly priceless.

If Noah’s classmate is your first or only child, I wish you knew that parenting is a marathon – not a sprint – and before you cast aspersions, please please know that you: a) never have the whole story – regardless of what you “think” you may know, and b) you have a long way to go before you can even think about saying “job well done”. And that if and when your child does trip up and fail, it will be no more a reflection on you as a “bad parent”, as his successes and achievements brand you as a “good one”. We are ALL doing the best we can and I live for the day when we parents are all just a bit kinder to one another, knowing that truth.

I wish you knew that we work tirelessly with Noah’s neurologist, making sure that we are not missing/overlooking/neglecting anything that might clue us in to changes we could be making, medication we could be adjusting, testing we could be pursuing.

I wish you knew that Noah has a brother and sister – who, though all grown up and mostly out in the world  – adore their little guy, and are as doting on and concerned about him as we are.

I wish you knew how far – how breathtakingly far – Noah has come since his epilepsy diagnosis. In ways that would be so meaningless – so minute – so take-it-for-granted-ordinary – to you, that you wouldn’t even give them a passing glance. Things that he wasn’t doing at all JUST A YEAR AGO:

Standing – still – in a line. Patiently waiting his turn.

Playing a board game/building with Legos/coloring.

Watching a soccer coach assign a drill – and not only paying attention, but actually following through exactly as instructed. Every single week.

Hitting a tee ball or tennis ball. Ice skating. Skateboarding. Swimming. Bouncing a ball. Catching a ball. Dribbling a ball.

Writing his letters.

Drawing a figure.

Sleeping through the night.

On Monday mornings, when you “complain” about the weekend you spent ferrying to endless baseball/soccer/lacrosse practices and games, I wish you knew how envious I was. How I only want to have a “normal” weekend spent doing those things – and that we are working toward having those exact kinds of weekends ourselves, someday soon.

We are fervently committed to the idea that all of the wonderful qualities that comprise our son will be the ones that remain when we are on the other side of this. That the things that make people fall in love with Noah on sight are the true essence of him, and will be there in the end.

sheri and noah

Till then, at least now you know.

Click here for more info on ESES.

And here, for my other posts on our journey  with epilepsy:

Fried (Not a Recipe Post)
End of the Week and Such…
What You See…

And thanks – so much. xo

56 Comments

  1. Sandra Harris on April 15, 2015 at 8:55 am

    Just the biggest hug imaginable from over here on the west coast. Writing this through the tears.

    I don’t know if you believe in fate. Or if I do. But I do know that Noah is lucky that he has two older siblings. You know the drill. You know how much is out of our hands no matter how many books we read or parenting styles we try.

    The Judgy McJudgersons may relive their anxiety a bit by pointing fingers and whispering and excluding but you knowing the reality of the crapshoot of parenting makes you the perfect mom for Noah.

    And I’ve been that Judgy McJudgerson mom if I’m completely honest – not with Noah but on occasion with other parents. Like many things in life, we just should “keep our eyes on our own work”. Like you note, we never have the entire story.

    • sherisilver on April 15, 2015 at 8:58 am

      Love your honesty. And your friendship. And YOU. xoxoxo

  2. Meredith on April 15, 2015 at 8:58 am

    Love you and Noah xoxoxo Always here for you friend

    • sherisilver on April 15, 2015 at 8:59 am

      I know you are. I really, really KNOW that. xo

  3. Leslie on April 15, 2015 at 9:10 am

    I am so sorry that you are going through this. Noah is such a lucky boy to have parents who are so dedicated to helping him. Parenting is really, really hard even without a challenge like this one, and it’s super easy to know exactly how to raise OTHER people’s children when you don’t have a clue what their lives are really like. Thank you for sharing. I’m praying for your family.

    • sherisilver on April 15, 2015 at 9:32 am

      Thank you Leslie – I so appreciate this. xoxoxo

  4. Stephanie on April 15, 2015 at 9:14 am

    So sorry for the struggle but happy for the success he’s made! Happy to have a playdate if you are ever looking for one!

    • sherisilver on April 15, 2015 at 9:32 am

      Thanks Stephanie – we’d LOVE a playdate! 🙂

  5. Elizabeth on April 15, 2015 at 9:22 am

    Hear hear, Sheri. Thanks for sharing this story. We’re all cheering for Noah, and the best possible outcome. In the meantime, this is a great reminder that we NEVER know the whole story about anyone and should therefore be kind and compassionate whenever possible. Sending love!

    • sherisilver on April 15, 2015 at 9:31 am

      Aw thanks so so much my friend. Feeling the love and so appreciative of YOU! xo

  6. natalie on April 15, 2015 at 9:23 am

    Have you looked into putting him on a ketogenic diet with your doctors? As a fellow epileptic I can attest to how much it helps and have met countless people it has cured of their epilepsy. It can be done in tandem with medication and while it’s sometimes difficult, the results, for me, were well worth it.

    • sherisilver on April 15, 2015 at 9:31 am

      Thanks for reaching out Natalie. We have discussed this with our doc. Noah’s epilepsy is actually in remission – thanks to the prednisone. We hope it stays that way, of course, and are now dealing with the ancillary side effects of the medication. I so appreciate your taking the time to write. Best to you!

  7. Jen on April 15, 2015 at 9:36 am

    Oh man. I wish I could just say, “forget the judgers” but it’s your boy. How can you not take that kind of thing personally? It is personal.

    I love what you wrote here:

    …And that if and when your child does trip up and fail, it will be no more a reflection on you as a “bad parent”, as his successes and achievements brand you as a “good one”.

    Because, truer words were never spoken.

    Sending you lots of love. And also, high fives to Noah for all the progress he’s made.

    xo

    • sherisilver on April 15, 2015 at 9:52 am

      Thanks friend. Having grown 2 kids from beginning to end you DO get some perspective – that my 27-year-old-new-mom self wishes she had had. Thanks for being there for me. Love you. xo

  8. Sara on April 15, 2015 at 9:40 am

    the truth is beautiful! very very brave <3

  9. Sue Geelan on April 15, 2015 at 9:43 am

    Even though I’m crying from reading this beautiful and courageous piece, my heart is also cheering for Noah and you all for the amazing accomplishments he has made over the last year and for the accomplishments to come. You and Mike are such terrific parents and I’m in awe of your strength throughout these agonizing times. You are not alone and are so very loved, Sheri.

    • sherisilver on April 15, 2015 at 9:50 am

      I know that Sue – and am beyond grateful for friends like you. Thank you – for the cheering, especially. xoxo

  10. Liz on April 15, 2015 at 10:29 am

    Sheri, That was very brave of you to share. Thank you. May you find strength and peace and may your post bring the same to others. Big hugs.

  11. sherisilver on April 15, 2015 at 11:10 am

    Thank you Liz – you are the nicest. xo

  12. Linda on April 15, 2015 at 12:53 pm

    You know his Linda loves him!! He
    can come play with this crew anytime.
    He is so lucky to have the family you
    all are. Sending hugs!!

    • sherisilver on April 15, 2015 at 1:01 pm

      He sure does know! What would we have done without you????

  13. Jill Parrella on April 15, 2015 at 1:14 pm

    Oh my friend. I have such empathy and understanding for all of you. I can only imagine, from where I stand, how heart wrenching it is for you every day. You are a brave woman and the best mom Noah could have to guide him through this challenge he is faced with.

    I can’t wait to see you soon and give you the biggest hug my friend!

    Know you are loved – and so is that little man! xo

    • sherisilver on April 15, 2015 at 1:19 pm

      Thanks so much Jill – you’ve been THE BEST through all of this and I am so grateful to call you friend. Can’t wait for that hug – so soon! 🙂

  14. Miss Night on April 15, 2015 at 2:00 pm

    I am so deeply honoured to have inspired this. I am so glad that Noah has had amazing educators; please know that they celebrate his progress (even the nearly-imperceptible baby steps) right alongside you. Thank you for being brave and honest. When my own post went viral, I learned that none of us — parents, teachers, specialists — ever speak for just ourselves. Our experiences resonate and make “the village” (the one we desperately need to collectively raise kind, smart, strong, resilient children — stronger, better, more compassionate. Continue to tell your story, and Noah’s. All of “THOSE” kids, and their families and teachers, need you, too.

    • sherisilver on April 15, 2015 at 2:35 pm

      Thank you for this. And yes, with every daily call his teacher makes a point of celebrating Noah’s successes – even on a “bad” day. And we are so grateful for that. I SO appreciate your taking the time to write!

  15. Cathy on April 15, 2015 at 2:03 pm

    beautifully written. While I can’t offer play dates for Noah anymore I’m always more than happy to have one with you. ❤️. Sending love

    • sherisilver on April 15, 2015 at 2:20 pm

      Thank you Cathy – our play dates mean the world to me! xo

  16. Tiffanie Turner on April 15, 2015 at 2:03 pm

    Sheri,

    You are always brave and authentic here and elsewhere, and even though the subject material was hard, I loved reading this because it was truthful and honest. I feel for you, and I wish all of you the very best deciphering and decoding what is happening with your little man. He has been though a lot, as have you. All the best to you and your family. xoxoxo

    • sherisilver on April 15, 2015 at 2:19 pm

      Thank you so much Tiffanie – I miss you! xoxo

  17. Amy Zerman on April 15, 2015 at 3:05 pm

    Sheri,

    No one can begin to understand our personal struggles even when they know the basic facts. Thanks for articulating the pain, the passion, the struggles and the celebrations of your past year. You have touched me deeply. xoxox

    • sherisilver on April 15, 2015 at 4:35 pm

      Thank you so much Amy – your support of everything I do means so much to me. xo

  18. Kerri on April 15, 2015 at 4:00 pm

    Sheri, although we’ve talked about this, I’m again moved by your raw candor and how eloquently you’ve put your struggle (and successes!) into words. We love all of you and Noah has a big place in our hearts. I know he will keep making strides forward even if it’s still ebbing and flowing. His heart and soul shine bright and that is his essence. XOXO

    • sherisilver on April 15, 2015 at 4:36 pm

      Thanks for always seeing the best in our little guy – he feels it big time, which is always why you get the biggest hugs. We love you too. xo

  19. Lisa cohen on April 15, 2015 at 4:04 pm

    also writing through tears. Such a brave & honest piece. You should feel very proud of the wonderful improvements that Noah has made and how much you are doing for him. I related to so many things you said but mostly keep it inside! I hope You know I’m here for you….

    • sherisilver on April 15, 2015 at 4:39 pm

      Lisa you KNOW I know you are here for me – as you’ve privately shown me countless times over the last year. I hope you know how much I appreciate it, especially in light of your own full plate. Love you. xo

  20. Keira on April 15, 2015 at 4:19 pm

    Sheri, you continue to inspire and amaze me. You are such a beautiful, beautiful person and a mom who inspires me to become a better parent. I’m so grateful that you had the courage to share this. And you did make me cry.

    • sherisilver on April 15, 2015 at 4:38 pm

      Thank you so much Keira – you are someone who I’ve watched and admired as a girl who has grown into a smart, funny, feisty woman. It is SUCH a pleasure to think that I have known you for so, so long – and you inspire me RIGHT BACK. Except for the tennis part. xo

  21. PJ on April 15, 2015 at 5:10 pm

    I try to always write honestly and openly on my blog, but I don’t think I could ever be so brave as to share what you did in this post. All of your fears and worries and concerns. Thank you so much for sharing. xx

    This afternoon I arrived at Levi’s school a few minutes early to watch him on the playground with his classmates. I saw him wrestling with another boy, who then ran over to a picnic table of other kids. Levi waited (hesitated?) and then ran over, too. When he got there, all the kids got up and started running. Where they playing a game of tag? Of good guys/bad guys? Or were they trying to escape Levi himself?

    I’m not sure I’m ever going to stop worrying about Levi’s development. Does he have appropriate social skills? Do his peers like him? Will he have friends?

    Being a parent is hard as shit. It sucks when there are extenuating circumstances making it even harder.

    Wish we lived closer for a playdate!

    • sherisilver on April 15, 2015 at 6:12 pm

      Thanks PJ – the playground “stalk” is one I’m all too familiar with! 🙂 The candor you display on your blog is always inspiring to me. And trust me, this was not easy and took me months to get up the nerve to post. I wish we lived closer too – and now you’re moving away! Love you. xo

  22. Stephanie on April 15, 2015 at 5:21 pm

    Sheri-
    I have been in complete awe of you since the day we met for your creative talents…and these past few years you have blown me away even more with your strength and bravery. I read this with tears streaming down my face for a lot of reasons, empathy, anger, sadness…but the main reason was love–Noah is the sweetest boy in the world, his heart is tremendous-he is always ready with a hug and a smile and to me that is a quality that 90% of the Judgey Mc Judgersons kids lack!
    When Jake was born & in the hospital for so long, our Rabbi told us that babies “pick” their parents before their born-that thought has always stuck with me and gotten me through tough spots…I was meant to be my childrens Mom for some reason, they need me 🙂
    I am always, always here to meet for a drink!!! And we are always up for a play date with that delicious boy!!
    Sending you Tons of love!!!

    • sherisilver on April 15, 2015 at 6:16 pm

      Stephanie I can’t tell you how many times – especially last year – seeing you (especially when you had time for a hug) restored me completely. Even if it was just for the moment. If someone like YOU – with your amazing boys – would be so incredibly loving and devoted to me and my boy, then all was not lost. Seriously, you have no idea how much even just a quick glance at drop off meant to me. It’s been too long – would LOVE to see you! Thanks so much for this. xoxo

  23. sara on April 15, 2015 at 6:54 pm

    Wow. So proud to call you a friend. Noah is a very lucky guy to have you and Mike as parents (and C and C as siblings!) thank you for sharing your journey – always thinking of you and looking forward to our catch up dates. Xoxo

    • sherisilver on April 15, 2015 at 8:08 pm

      Thanks Sara – can’t wait to see you. You know that I count you as one of my go-to’s – and the countless (teary) chats I’ve had with you to prove it. Love you. xo

  24. Tanya on April 15, 2015 at 8:56 pm

    Dear Sheri,

    No one who reads this post could possibly fail to be moved by it. Thank you for sharing something deeply personal that is also truly meaningful for each of us in a much broader way. So many near and far are cheering you on in the victories and ready to support you as you navigate all the uncertainties, too. Your strength and wisdom are inspiring and please know you are not alone – Noah is a lucky little guy!!:-)

    xoxo

    • sherisilver on April 15, 2015 at 9:13 pm

      Thanks SO much Tanya – your lovely and constant support here and IRL mean so much to me – you are truly one of the most genuine, real, down-to-earth ladies I’ve had the pleasure of knowing. xoxo

  25. Melanie Biehle on April 15, 2015 at 9:55 pm

    I love you. You guys are amazing parents and all of you are so lucky to have each other. Thank you for sharing this.

    • sherisilver on April 16, 2015 at 5:23 am

      Lucky to have you too, you know. xoxo

  26. Jennifer Cullen on April 16, 2015 at 9:22 am

    Sheri, what a beautifully written, heartbreakingly honest post. Thank you for sharing all of this. You are lucky that you have each other and that your family is so close. Sending you lots of love and hugs.

    • sherisilver on April 16, 2015 at 11:08 am

      Thanks my friend – can’t wait for a REAL hug – soon! xoxo

  27. Krista on April 16, 2015 at 8:29 pm

    Wow Sheri, wow. Once again you’ve blown me away. Noah is as lucky to have you as you are to have him. I love supporting you and your family and now know to do it more often. Thank you from me and from so many, many others who will be grateful for years to come that you put words to their thoughts and feelings. Love you! xx

    • sherisilver on April 16, 2015 at 8:33 pm

      Thank you Krista – so grateful for YOU. xo

  28. annie diamond on April 17, 2015 at 7:46 am

    Sheri,
    Noah is so lucky to have you as his Mom! Seriously you are the most amazing woman! I think this opened my eyes in many ways. Sheri, you are inspiring… for your honesty, your perseverance in making sure that nothing (and I mean nothing) has been missed. I keep going back and re-reading and then reading all of the comments of your supporting network. I would love to meet for coffee soon. In your neighborhood and even if it’s just for a few minutes. It’s always great to see you. You touch everyone’s lives with your creativity and generosity. Love to you and your family Sheri!
    annie

    • sherisilver on April 17, 2015 at 7:54 am

      Love you too Annie – I’m so happy and grateful that we’ve become friends as I truly cherish you. Let’s make plans to connect soon. Thanks so much for this; it means so, so much to me. xo

  29. Pat Rogers on November 9, 2015 at 8:58 am

    Noah is one of the reasons that I have decided not to hang up my sneakers.. Noah is just good for the soul .
    Coach Pat Rogers

    • sherisilver on November 9, 2015 at 10:39 am

      And when we count our blessings – especially on a “bad” day – YOU are one of them. So grateful for you…….

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