I want to write. I just can’t. Well I can, just not well. It doesn’t feel important or necessary right now and I’m certainly not connected to any kind of creative force because we’re in No-Man’s Land and there is no inspiration here. It’s a liminal, dank place, full of stark shadows and lots of waiting and angst.
My life is so uplifting lately, isn’t it?
Last week my son went in for his routine, no-biggie, 12-month check up. Only he’s not 12 months, he’s 13 months. Something stupid and completely non-important came up at the last-minute before his actual 12-month check-up when he was actually 12 months old–so instead of going to the “routine” appointment, we rescheduled. In doing so, we pushed his no-big-deal-check-up out a month so we could see our primary pediatrician.
So now he’s 13 months old and our baby boy who looks, acts and seems as healthy as any 1-year-old you could imagine… is waiting for a diagnosis. BAM! JUST LIKE THAT! OUTTA NO WHERE! BECAUSE LIFE WAS GETTIN’ A LITTLE TOO EASY FOR ME LATELY SO WHY NOT ADD SOMETHING ELSE TO PILE OF SHIT! HM? HM? HM!????!!!
Slight correction: Except for the daily needle pokes and blood draws, my son is oblivious to the waiting. WE are waiting for a diagnosis. And by waiting, I mean trying to ignore the whole thing so we don’t bust wide open into a million pieces of what if’s and worst-case scenarios.
I can’t share what’s wrong with him because no one knows. Our doctor calls him “The Mystery Patient” like we’re on some episode of Mystery Diagnosis. I’m not going to list all the reasons he’s being tested because I could not hold my shit together if people started giving me helpful suggestions like, “it could be this chronic condition”…and… “maybe it’s this terrifying syndrome”…or…”hey, that sounds like XYZ terminal disease!”
No, I’m not going there.
For now, we’re just clock-watching, phone-answering and sleep-walking through the impossibly long gauntlet that is waiting to know what’s wrong with your child. It’s every bit as horrifying as it sounds. Everyday is another test, another guess, another appointment with a specialist. We’re exhausted in every way but mostly from trying to ignore our internal dread, which as it turns out, takes quite a lot of energy.
This week was supposed to be all about my daughter and her first week at gymnastics, dance and preschool. Instead, all those things have been eclipsed by our very own, real-life episode of shitty reality TV. However, all those thing are still going on so it’s been busier than usual and mostly I feel like this…
Part of that meltdown, is holding back a tidal wave of Worst Mother Ever Syndrome. GOD why didn’t I just take him to his appointment a month ago?!? Why wasn’t I more concerned that he’s been wearing the same size clothes for 7 months? Why in the world would I think my son’s slow-motion blinking was his unique way of communicating with me?!? I’M SUCH AN IDIOT!? WHY DIDN’T I SEE?!? WHY DIDN’T I KNOW?!?
See what I mean? A tsunami of guilt just under the surface.
Until then… until I’m allowed to freak-out and break down or (hopefully) fall on my knees awash in grace and gratitude or maybe just reconcile a new reality… here is my perfectly perfect little man. He’s oblivious and adorable and seemingly healthy in every way… Please God. Please let it be every way.
Sorry for all the shitty writing.
Oh Shannon I’m so sorry to hear of what your young son and your family are going through. Sending love, comfort and praying for a positive outcome. xo
Shannon, I can’t say I know what you’re feeling. I’m not in your head. I can only share with you that I’ve had to do something very similar. I completely relate to not wanting a thousand suggestions about what it could be while you wait. I’ve tried sharing with you here what we went through but I just keep deleting it. I just wanted to say ultimately, I’m sending you the biggest mental hug I can. I hope everything works out for you.
Rachel, I’m so sorry your comments haven’t been showing up. I don’t delete anything, not even the “bad” ones. I will have to look through the history and see if I can find any I haven’t approved?? Again, I’m so sorry. Please know that I haven’t purposefully deleted your comments. Thank you for your well wishes.
Shannon, I am so sorry you have to go through this. You and your family are in my thoughts. Sending you ((good vibes)).
God grant me the serenity
to accept the things I cannot change;
courage to change the things I can;
and wisdom to know the difference.
Although I do not know your exact pain Shannon, I do know the utterly hopeless feeling, as a parent, of not being able to do anything but wait.
I hope you will get an answer soon and that it’s one you want to hear…if it is not, the above prayer has always helped me in times of emotional challenge to keep perspective knowing there is so little we (parents/human beings) actually control.
I’m keeping positive thoughts about your beautiful son in my heart and sending you and your family love.
First of all, stop beating yourself up. Right now. Be kind to yourself. You are the VERY BEST MOTHER that your children could ever hope for, and they need you now and will love you eternally. There is no love or compassion in guilt. So stop. Every time you begin to feel guilty or self-reproach, go give your kids a big sloppy kiss and a bear hug. You are a great mother, and I don’t even know you. It is so easy to see how great you are through your incredible writing.
And the next thing: you are a truly amazing writer. AMAZING. go look in the mirror and say “I am an amazing writer. I evoke real emotion in my readers. People read what I have to say and think for days about what I write.” Then go hugs your kids again.
I do not know what kind of other crap is going on in your life. But I will pray to all of the higher forces in the world that life gets easier for you, gives you some room to breathe, and allows you an extraordinary moment (especially for moms) of knowing in your bones that all is ok, and all will be ok, and maybe even thrilling. You deserve to smile. And I am being selfish because I want you to keep reading your f’ing unbelievably good material.
Your son is adorable beyond words. I hope hope hope that all is ok. He is so lucky to have you as his mom. It looks in the photo like he knows that.
Remember to drink your fluids
and know that you have a lot of us in your corner.
DD, you are officially my favorite commenter. Thank you.
Best wishes for little man, you and all of yours.
Hold you head high and please stop beating yourself up. We all love our children beyond words and the guilt that we endure will eat us up if we let it. Hug and kiss your children like you always do. I will pray for your family and what is meant to be. You are a wonderful writer and through that we get those feelings out. I do not know you personally but always enjoy reading what you write. <3 to your family~
It’s easy to beat ourselves up, but mothers don’t know everything. You love your son and that is what he needs. Take care, I hope things get better soon.
Hi Shannon – My friend Elizabeth Grant sent me to your blog, having the sense that I would click with your writing. Click I do indeed, even if the first words of yours I’ve read come at this difficult time for you and your family. I’m sending you every good wish – for good news and for it to come soon.
Hi Shannon – My friend Elizabeth Thomas sent me to your blog, having the sense that I would click with your writing. Click I do indeed, even if the first words of yours I’ve read come at this difficult time for you and your family. I’m sending you every good wish – for good news and for it to come soon.
Thank you Kristen. I have already been to your blog… and lurked. Welcome to mine. Today I spent the entire morning at Seattle Children’s Hospital and spoke to at least six doctors. We are no closer to an answer, but the reality of the situation feels less daunting. I’m still hoping for a “welp, looks like we made a mistake, all this fuss over nothing” statement, but that is yet to come. As of now, more testing, more waiting–and when it comes to your kids, waiting is brutal.
I can’t even imagine, Shannon. I’ll be holding you in my thoughts and heart.
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