what you see….

May 16th, 2014
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A sweet friend sent me a note recently, asking after Noah. She responded to MY response with this:

“I’m so sorry. I’m always hoping that your life is as pretty as your pictures. I suppose it’s just wishful thinking on my part, but deep down I know that it’s probably not. Hugs.”

It got me thinking about blogging, and about social media in general (let’s face it, you may not blog but you’re probably on Facebook. Or Instagram. Or Pinterest.).

About how – on the “face” of things – our lives can be presented however we like. For me and my blog it’s further complicated by the fact that I write about aesthetically pleasing things – gardens, cakes, crafts – with “pretty pictures” to accompany.

But I can’t imagine that anyone would think that my posts in some way gauge what’s happening for me in real life. I was discussing this over lunch with another blogger/friend who surmised that, in fact, my work might be a welcome diversion from the struggles.

And she was right. For the most part, the four sites (including my own, how did THAT happen?) that I write for allow me – even briefly – to immerse myself in beautiful, delicious, fragrant things.

Things I can control.

Things that have a definitive outcome.

In short, the exact opposite of what we’re going through with Noah right now.

Seizure disorder is – to put it mildly – a very challenging problem to “fix”. The first medication – which seemed to be working so well – suddenly stopped. Noah’s seizure activity is not the typical kind that we envision (limbs shaking, eyes rolling back in the head) when we think of such a thing. It’s more, as the doctor describes it, a “constant electrical storm in his brain”.

noah

So on the surface he is a sweet, charming, friendly and engaged boy. He’s bright, conversant and articulate – unusual for a child with the level of brain activity his EEG’s reveal (and why his condition went undiagnosed for so long).

But we can’t seem to get the meds “just right”. And there are side effects. And mood swings. And behavioral issues. And we need to “hang in” while we wind down one medication and ramp up the new one.

And he’s five. Which is great, because we discovered this while he is still so very young. But it layers on an additional challenge as he can’t really partner with us. We don’t know what or how he’s feeling inside – either physically OR emotionally. So we have to do the work for him – watching, monitoring, taking note of everything on the chance that it’s something pertinent.

While we’re in the thick of this phase of the process it feels like no two days are alike. And there is no predictability either. Will it be a good day at school? Or will I get a call at some point telling me to come get him – because he’s too tired – or too irritable  – to finish out the day?

It’s draining. And scary.

And it’s completely out of our control.

So while I’m grateful for the diversion of my work, I sometimes feel a bit disingenuous – know what I mean? Like, is it misleading to post about clogs and doughnuts, when I was falling apart just an hour prior?

But at the end of the day, this is my job – and just like anyone else, I’m responsible for it regardless of what’s going on personally. My job just happens to be more “visible” than most. And judging by the many notes I’ve received (some from complete strangers), it is clear that many of you sense what lies beneath the surface.

And for that I am supremely thankful.

We WILL get there. I know it. We have a wonderful, accessible doctor, and I have every confidence (most of the time, anyway) that we will be on the other side of this at some point.

Till then just know that I truly appreciate every kind note, text and call, and your amazing support of the work I’m doing here.

Hugs. xo

36 Responses to “what you see….”

  • Very touching post, Sheri. Thanks for sharing – I think many will empathize that life isn’t always how it appears in social media. Noah sounds like an amazing boy (doesn’t hurt that he’s as cute as they come) and I, along with your many fans/friends, am sending good karma and warm, positive thoughts your way. xo

  • Sending love Sheri, thinking of you always. xo

  • Yes, always thinking of you over here too.

    Perhaps some people live that perfect, charmed life – I actually believe that some people do (they are few though). However, most of us are dealing with something – chronic illness, you with Noah or some other kid-related issue, financial struggles, aging parents, etc.

    It’s another time for an “and” rather than an “either/or” – this part is pretty and shiny and bright AND this part of my life is a challenge/stressful/scary.

    Noah’s a lucky boy…

    • Thank you Sandra – and for all the times you’ve reached out to me. I think that social media has artificially put the “either/or” in place of the “and” – time to take it back, I agree! xoxo

  • Love you, dear friend. Thinking of you and sending you strength. xoxo

  • Hugs to you my friend xoxo

  • Sheri, one of the things I love so much about you and your writing is your authenticity. While your photos and topics are lovely and pretty, I don’t get a sense of “fake” perfect little world, but more of a life lived with an appreciation for beauty and the intention to live it fully – the happy and the difficult times. I’m so sorry Noah is going through this rough period and hope you will find the right medication for him soon. He looks and sounds like such a sweet little boy and he’s so lucky to have you as parents. xoxo

    • Thank you so much Lisa – I so appreciate your reaching out and taking the time to tell me this.As you know all too well,we hit “publish” and then wait. And wonder. I’m so lucky to have met such lovely people like you. xoxoxo

  • Thinking of you and hoping you all have some resolution soon. XO

  • You are a courageous spirit and I’m sure your children take after you. I am glad that you come out from behind the pretty every once in a while and inspire us to be courageous as well. My heart to you Momma.
    Love,
    Shalagh

    • Thank you so much Shalagh – your response to my more personal posts is a big reason why I continue to do so – your support means so much to me. xo

  • Cindy Spencer says:

    Sheri,
    Thank you for that update on Noah. I had been wondering. Your writing is so beautifully genuine I feel like we are having a cup of tea together when I read your blog! I am sorry you are going through this difficulty and I will pray that Noah’s situation resolves very soon. That little guy has so much going for him with a mom like you!
    Love,
    Cindy

  • Leslie Schulte says:

    YOU!

  • Sheri,
    While we have never met I want to say I never get the sense that you are faking a perfect life. I read your blog and I am inspired by a woman that can find the beauty in the everyday life regardless of real life. It is nice for those of us that read your beauty to be let into your struggles as well. We benefit from your outlook on your blog life, and you can benefit from all of our shoulders to lay your troubles on.

    • Wow – thank you so very much for not only all of the wonderful things you said, but for taking the time to write.You expressed all of the things I hope to convey through blogging, and I’m thrilled to know that it comes through – you made my day!

  • Oh, that gorgeous little face of his. 🙂 Sending you warmth and hugs..and amazement that you can create such order and beauty amidst the feelings and situations around you. You are a brave example, friend. xoxo, MJ

  • Kerri Warner says:

    Sheri, thinking of you and love your candor. Noah’s blessed to have an incredible garden of support surrounding him in which to thrive – thanks so much to you and Mike. Love always, Kerri

  • Beautiful post Sheri, thinking of you and Noah. xoxo Jen

  • Thanks for sharing this, Sheri. I’m praying for you and Noah, and would love to talk to you about this some time, as my son also is diagnosed with seizure disorder with “near constant” abnormal electrical brain activity. I’d be interested to compare experiences!

    • Leslie would love to talk – I’ll shoot you an e-mail this week – I remember you mentioning this a while back and then it completely slipped my mind; thanks for reaching out again! xo

  • My dear friend – I am always thinking about you and hoping Noah is doing OK though all the trials and restarts. You know Mark and I are sending support. xoxo

  • This wonderful and personal post should be shard with all of Noah’s teachers. It is important for them to know that you are one of those parents who knows their kid so well. I also think that while it is perfectly fine to keep your “lives” separate, it is so generous of you to share so candidly about your struggles, frustrations and triumphs for other who may be able to relate. I love reading your pieces!

    • Thank you so much Esther – Noah’s wonderful, amazing teacher has been a true partner, in every sense of the word, from Day 1. She calls at night and on the weekend, sends notes and is as “there” as we could possibly ask. Thank you for your kindness, and for reaching out like this. xoxo

  • Kathleen Szur says:

    Sheri,
    This is exactly the kind of post that makes us love your blog. You are so eloquent. How you put into words what you are going through in such a thoughtful way is what connects with us. You are right. It is easy from the outside looking at a blog to think things are perfect. Noah is a lucky boy to have a mother like you!
    Kathleen

    • Kathleen – what a way to end my day – heck, my WEEK! Thank you so much for this – to know that I’ve resonated with you in that way means the WORLD to me. And I can’t thank you enough for taking the time to write! 🙂

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