Today I am grateful for the resilience of my youngest child; my baby, my heart, my sweet, sweet boy with the misfiring brain.
I’m grateful he endured this without too much complaint:
And then—because that wasn’t enough excitement—we followed it up with an MRI. Just for kicks.
The reality, of course, is that you have these scary tests and then you sit back to hurry up and wait. It was nice of them to get us in so quickly for testing, but now everyone is off with their families enjoying the holiday and completely unconcerned about the fact that it feels like we haven’t dared to breathe for about a week and a half.
Because about ten days ago—in the wake of yet another heartbreaking round of Monkey-goes-Hulk-on-the-deeply-displeasing-world, during a Very Serious Discussion About Your Behavior Young Man—Monkey had some kind of seizure.
That was new. And completely terrifying.
We don’t have any test results from the doctor, yet, but I do happen to have a cousin who is a radiologist and a very wide smile with which I convinced the MRI tech to give us a disc of images. My cousin gave the standard caveats about not being a specialist in pediatrics, but says he doesn’t see anything. Which was enough for me to exhale, for now.
There could still be something there. There could be nothing there, but the EEG might reveal something worrisome. There could be nothing on the MRI, nothing on the EEG, and then… I’m not sure what comes next. Something is wrong, but so far no one knows what it is.
Nonetheless, I’m grateful that whatever is going on in that little head, Monkey is still Monkey, still my sweet boy, even when it sometimes feels like he is being slowly dismantled by forces we can’t control. As long as I can smooch one of those dimples and get a smile in return, I have much to be grateful for.
Deep breaths in, deep breaths out. Repeat.
Praying for you guys. {{hugs}}
Oh Mir. Hugs.
Oh Mir, poor Monkey. Give him a hug for me.
Oh, Mir, this is so tough. Not much to say but sending positive thoughts your way. At times like this (we are going through our own non-health-related uncertainty), I am pleased for the external reminders to be grateful and thankful, because I certainly need them.
Oh, Mir! I’m SO, so, sorry. Prayers for you, your family,and your sweet, sweet little boy.
I am so sorry this is something you are having to deal with. There really isn’t anything worse in the world, I believe, that fearing for your child. I hope it turns out to be some little nothing that is easily explained, easily treated and never ever happens again.
Puts my piddling problems into perspective. Give him an extra hug from the internets.
Thinking of you all, wishing a happy holiday to you and your family.
Wow, like anyone needs that. Keeping your family in our thoughts and sending great big virtual hugs.
My younger brother had seizures as a child. He was on medication for years. He is now a college student, off medication, and has a driver’s license. I know you’ve got to be scared about this, but it is just another thing and you will all find your way through to a good place.
Prayers for you, Mir.
Keeping you all in my prayers.
Please to have a good Thanksgiving :).
{{{{{{{{MIR}}}}}}}} {{{{{{{MONKEY}}}}}}}}}}}
I’ll be keeping you, Monkey and your whole family in my thoughts and prayers. I’m sorry you have to go through this.
You are all in our thoughts – have a happy Thanksgiving!
Hugs to you… i’ve been there with the seizure MRI/EEG/unknown WTF? thing, thankfully now under control & is supposedly the type that will be outgrown between the ages of 12 & 16. email me if you want the whole long story. Hopefully after 4 years of meds we will be weaning from those next summer (when not in school, just in case).
You’ll be in my thoughts & prayers.
More hugs from snowy, blowy (totally a word I might have made up!) North Dakota.
Oh, Mir. You are in my thoughts as well. Wishing the best for you and Monkey.
I know from personal experience how scary this is. I hope this is a one-time deal, but if it doesn’t turn out to be…let’s talk, maybe I can lend some support. Take it easy this weekend – you’ve all been through the wringer.
I’ve been there – not with my kid, ME! But this was before MRIs, so I just had all the electrodes on my scalp (and up my nose!). I was having what I described as Out of Body experiences – in the middle of dance rehearsal, I’d all of a sudden be watching myself from up in the rafters. Very weird. Turns out the only thing they could find was that I needed glasses. And I never had it happen again.
Not trying to hijack, just to let you know that it could wind up being something sort of silly. Big hugs and many good thoughts flowing your way.
PS: Monkey deserves something special to celebrate being able to sit totally still long enough for an MRI. I had one on my ankle earlier this fall and my inner thigh started cramping from holding THAT still THAT long!
Oh, and please let Monkey know that there are grown women out here who would LOVE to have his hair! So lovely and shiny!
Scary :( You all shall be in my thoughts and prayers!
I’m sorry you are going through this. I can’t imagine anything worse than worrying about your kids. Prayers and luck your way.
I’m sending the most positive vibes and thoughts your way. What a stressful thing to go through, and during your busiest time of year. You’re hiding it well, if that’s any consolation. Take care of your family!
Oh, Mir. Ouch, life never does come at you with a soupspoon when it can shoulder a shovel, huh?
You will both get through this. Love to you.
(And I suddenly have this GIANT urge to leave work, hop in the car, speed to my son’s school and smooch the top of his head.)
I’ve been wondering what was up. I don’t really know what to say except that I’m sending prayers and big hugs, and if I lived near you I’d bring over a casserole. Isn’t that the ultimate in Southern Comfort? (Or maybe I should just send the bottle of Southern Comfort?)
xoxo
Sorry you’re having to deal with this, on top of everything else! Try to enjoy your holiday!
What a special family. You are truly blessed. Good luck with this next hurdle.
Oh Mir your poor little man Monkey. I really hope he is ok soon. I will say a prayer for that special boy of yours. Best wishes.
Holding my breathe for you, so you don’t have to.
And I obviously meant “breath” not “breathe”.
You know my thoughts are with you. Big hugs.
Totally different context, but I know the fear of the medical unknowns. I had unknown health issues with my younger son many years ago – never did find out the cause, but he’s a happy, healthy 11 yo now. I hope you get good news soon!
Prayers, many prayers, coming your way.
Mir, I am so sorry your family is going through all of this with Monkey.
Remember to BREATHE,
ENJOY your break from school with the kids,
take time OUTSIDE with your family under the SUN
and SMILE :-).
This too shall pass, and you and your family have proven that you all have the strength to handle anything life decides to throw at you.
Good heavens, you have my empathy and sympathy – it’s a hard thing to think something is wrong but not know what, if anything, it is. Blessings to you and your family, and I hope you get good news soon.
So scary, Mir. Good thoughts from me for good results from the specialists. Your love for him is palpable and that has to be a good thing.
If it helps to spread out the worry, consider it done. Hope you feel lifted by the concern and prayers of half the Internet. Have a blessed holiday.
Hugs. Really, many of them.
So sorry for this latest development. My aspie daughter developed seizures at age 6, and outgrew them by age 9. The seizures are frightening–I’ll never forget it, and my heart goes out to you all.
Stay strong.
Great that your cousin didn’t see anything obvious! Just keep breathing and hoping for the best. And terrific job on Monkey’s part tolerating all of that.
Hugs to you and Monkey. Hope you get the results asap. Waiting is hard.
I hope you get a definitive (and positive) answer soon. Keeping you all in my thoughts and prayers. We went through this with my daughter who was then thirteen. The EEG showed a lesion on her brain but the MRI was clean. I learned that there are many causes for “seizure-like” activity. She’s never had another episode (which resulted from a benign fainting disorder,) graduated from college at 21 and is now applying to medical schools.
Mir, you’ve got each other, and the four of you are a heck of a loving family. You’ll get through this, whatever it’s going to or NOT going to be. My thoughts and prayers are with you all.
Shit. That is scary. And that sucks. And I can’t imagine how you are surviving the suffocation of the waiting and not knowing, but if I know anything about you, it is that you will get through it. And you will also get through the part of the not waiting and the actual knowing.
XOXO
Oh no. That must have been so scary for everybody. Sending lots of prayers and good thoughts your way!
I’ll be keeping you and your family in my prayers. I know how stressful not knowing can be. Enjoy your Thanksgiving as much as you can without too much worry — can’t do anything with the unknown except keep going forward and finding things in life to laugh about as much as possible until you know more. :D
Oh my word. That is so scary. Big prayers going out for Monkey and the rest of the family!
I’m hesitant to mention this, but just in case you might need to know it here you go: My MIL had a seizure disorder in her frontal lobes that manifested as behavior only. She did the Hulk thing when she had the seizures, and mostly didn’t remember them. She said that there were two kinds of EEGs at the time, a short and a long one. The short didn’t show anything, but the 2 hour one with the leads up her nose did.
Hope you find out results soon!
Sending all positive thoughts and prayers your way –
Oh, Mir. Poor Monkey boy. I’m thankful that he has you.
what a weight to have – wishing you answers and that they may be easily fixable
Hi Mir and Otto-I am a retired R.N. and have heard of this happening with kid’s of Monkey’s age. In the cases I knew, the child was put on Dilantin for a few years and never had another seizure. One boy is now attending law school and was diagnosed with Autism as a child. My best to y’all,
((((hugs)))))) I hope it comes back as nothing. When i was a child I had seizures, never an explanation other than a diagnosis of childhood seizures, but went thru the eeg’s(hated pulling the glue out of my hair afterwards!!) I finally outgrew them. As I got older I was more aware of not feeling good and having a pretty good idea that one was going to happen.
I’m sorry Mir. I gathered something was happening out of the ordinary, but did not expect this! I am sure you are terrified, and I am praying the peace of Christ will see you through this.
Oh Mir, that’s so scary. I’ll be sending good thoughts your way and hoping that the seizure was a one time only event. Hugs to you all.
It is the scariest thing isn’t it? My son had a seizure at about 7 months old, no temp, so it wasn’t febrile convulsions. Just a seizure out of nowhere. Terrifying.
Breathe Mir. xx
So sorry to hear this. Hang in there, Mir. Sending love and good thoughts to your whole family.
Oh Mir, so many hugs. May you all have a peaceful and enjoyable Thanksgiving.
Oh my. I wish you good results and some moments of relaxation over the holiday when you can actually forget.
i am such a lurker- sorry about that- but I have been praying/sending good vibes xo
Hoping your family has a nice Thanksgiving, and wishing all the best.
I’m so sorry you’re all having to go through this. Hugs and crossed fingers and positive thoughts from here.
Although I’ve been reading your blog(s) for years and years and years, I don’t think I’ve ever commented until now. And wouldn’t you know it? I have no idea what to say. That happens with a gut-punch, I suppose.
You inspire me, Mir. As do your parents, your husband, your children and your friends. Please, may you find inspiration in all of us as well.
Courage.
prays to you and your family.
My middle baby had an EEG when she was still a baby because of some funky head bob thing she had going on…they decided it was just undeveloped neck muscles but it was miserable going through the test. You’ll be in my thoughts and I hope it’s something simple and workable.
Have a great Thanksgiving!
Big hugs are flying south to you on a turkey wing. I hope the not knowing ends soon.
Oh Mir, I can only imagine what that kind of waiting is like. I’m lousy at patience, and it seems like I get lousier when my mama heart is concerned. I hope you get speedy, reassuring, helpful results soon.
Oh, honey. (dang, I just went all southern on y’all and my entire southern cred is two stays of four months each in Texas!)
I had to do that when I was about 12 and I remember the fascination of the whole thing almost, ALMOST making up for the fuss, bother and general irritation. I do hope the little professor in Monkey found some consolation in that too!
Hoping for a real answer really soon
oh, mir. sending you hugs and deep breaths and the health faeries with their endless supply of chicken noodle soup and bandages for all that ails.
Oh, lord. Nothing worse than one of your kids needing tests. Sending good thoughts your way and hoping the results are good ones.
Huge Hugs to all of you, such a scary situation. 5 years ago my best friend’s son had a seizure at school. He went on to have a few more as he grew. He has not had one for a couple of years now, but continues to take medication for them. They never found out the cause. Last year his younger sister had a grand mal seizure at the same age that he was when he had his first one. His were not grand mal. She is now on medication for hers, and they have no reason for hers either. They have one more daughter that is now terrified of having one, as she is now the age they others were when they had their first ones. Very scary for all involved, so much worrying and waiting.
I hope you get answers soon and that it is the best answers.
I’m so glad you can exhale. What a scary thing! I wish you big HUGS this Thanksgiving!
I won’t share our story, but we have endured many seizures and many EEGs and mandy MRIs. It is not easy and it is scary. Sugs to you and your family!
What??!? I’m so sorry that Monkey had a seizure. I do know of cases where a seizure turned out to be a one-time thing (or even a several time thing) that passed, never to return. Please keep us posted. Stay strong. Thinking of you and your sweet fam.
((((hugs)))), and hope that you’re able to take heart from the comments of those who have experience with this. And like one commenter already mentioned, kudos to Monkey for getting through an MRI! I’m not sure *I* could sit still for one.
just caught this blog this morning – thinking of you, Mir, and your entire family on this holiday and praying that everything is going to check out a-okay!
Oh Mir… I’ll be thinking of you and sending good energy your way. I can only imagine how hard this is, but just what I can imagine is very uncomfortable. Deep breaths…
I’m thankful for you and your blog and I hope you have a wonderful Thanksgiving. Keep us posted, we’re pulling for you.
We will be thinking of you and yours. Hope the tests show nothing to be concerned about.
Wow! Maybe your family will catch a break this time and it will be a one time thing. That does happen. Prayers and hugs for your family. I can’t even imagine.
Much love to you all.
From one Aspy Mom to another, you are in my prayers, Monkey too :)
Ack Mir, sorry to hear that! Hope you don’t have to wait too long for official results and that they aren’t the annoying vague kind – the good kind only please :) Three weeks or a little less to wait for my son’s scary test results and the last week is a blur that feels like at least a month … Uncertainty is hard so hugs – if that’s not too creepy from an almost stranger ;)
I know this doesn’t help, but my husband is epileptic, and he is fine. He has seizures occasionally, but overall, no real impact to his life. But it is still scary for me to see them. It will get better. And don’t be afraid to ask for a second or more opinion. I too know of several people that had one or more seizures as a child and then nothing when they were older. Prays and thoughts your way.
Oh Mir. The unknowing is so hard. Sososososo hard. Hugs to Monkey, you and the rest of your family.
Jesus Mir. Keep the faith, I’m sure it will turn out to be nothing and hopefully never happen again, but meanwhile I know how hard it is to unclench. (My now 6-yr-old Aspie had seizures as a newborn due to a neonatal stroke… never has had one since, but we do watch and wonder.) Give that boy an extra kiss from me too.
Was this his first seizure? We’re on year 7 of dealing with seizures, adjusting meds, EEG’s (um, WHY was my DS’s son’s head COMPLETELY covered in prongs??, takes an HOUR to put on??). The last 2 years have been completely under control and we are now thinking of trying to wean, but like a previous poster said, want to wait until school’s out. Feel free to email me if you want to talk about it! ((HUGS))
I’m saying prayers for you and your Monkey. I just found your blog and I’m so touched by how honest and from your gut that you write. I’ll be waiting to hear the good news ~ that it’s nothing serious.
I’m thinking of you guys, and hoping all is well with your Monkey. How terrifying that must have been to see, and how scary all these tests are now.
Um…at least now we are all not breathing with you? Gosh, I don’t know what to say, except that your friends are all standing right here behind you, ready to help, whether the news is good, bad, or inconclusive. All these happy thoughts have to influence the balance of Monkey’s fabulous little world, right?