8 months.
8 glorious months.
8 glorious delicious months.
8 glorious deliciously free months!
8 glorious deliciously seizure free months!
GONE.
Just like that.
Well...not really just like that.
And that's my point entirely.
See...this post has stewed & swirled in my heart for a LONG time. But just as I would start to put words to my heart thoughts (which isn't as easy as it may seem). I'd click delete. Believe it or not...I don't enjoy being disliked. Or making waves. I'm ultra susceptible to soul conflict, you know. I've heard moving to the Nebraskan wilderness is a potential cure? Someday perhaps...
::sigh::
But then again...maybe you can take the uptight New England girl from Upthebootville...but you can't take the...well you know the rest!
Here's the thing.
Even though Trevor was labelled lucky four injections into our first round of Acthar.
My heart could never really come to terms with that. Being lucky. I always always felt haunted. Hunted. Stalked. Baited breath...waiting for the other shoe to drop.
I spent every one of those 8 glorious deliciously seizure free months with my stomach in knots.
I've heard it said that some people. The lucky people. Move on after Infantile Spasms. Never to be heard from again.
I have a hard time wrapping my heart around that. Probably because I never did. Of course...hind-sight being 20/20 clears up the fact that I have a right to my knots. Because even 100s of thousands of dollars of Acthar is NOT a cure. Right, Questcor? In fact...we have now spent more months fighting the seizure monster than we did running from it. And I imagine if we took a poll of the lucky ones...we'd have enough stomach knots to do a fine job of convincing the world that Infantile Spasms is not something that's here today. Gone tomorrow. Unlike seizure freedom.
Wanna know something else? I think I always had a right to my fears. I think every IS family...even the lucky ones...has the freedom to feel fear knots. Of the unknown ahead.
I think that even though Trevor was (so-called) lucky. For 8 months. I think the fact that we ever had a crash course in Infantile Spasms worked to negate being called lucky.
In fact...I don't think we ever were lucky. (in the seizure-free sense)
It certainly didn't feel lucky pushing the thick-cranky-inducing-blood-pressure-raging hormone into my screaming child's thigh.
Just as it didn't feel lucky having a seizure-free-after-four-injections-of-Acthar EEG reveal that his little brain was still in a storm...even if it was smaller.
And for crying out loud...it doesn't feel freaking lucky NOW when I hold him through clusters all day! And I don't give a flip at how high functioning (God...I hate that label!) Trevor is! He is being...and always was being...ravaged by this beast.
And I think it sucks that I ever tried to convince myself I was lucky. And I think it doubly sucks that I had others telling me I was lucky.
That's right. Sucks.
I mean how do you justify telling someone whose child has had not just seizures. But Infantile Spasm seizures. That they're lucky? That they should shut up and move on already? Just because their child only had 600 seizures before striking the lucky jack-pot. For what would be a measly 8 months. Like somehow 600 seizures isn't a big deal? Like somehow being handed a diagnosis of Infantile Spasms is get-over-able! A couple months later?
That's right. Just four short months into our lucky (ticking time-bomb) months. I was told in an email (more than once actually) to move on. To stop sharing my story. Because it was causing pain to others. The un-lucky ones. And how disgustingly dare I continue to rub in my lucky-ness.
Are you freakin' kidding me?! Of course...I say that now.
But...
Oh and how I wish I didn't let it get to me. Hurt me. Guilt me. Torment me. But my silly little guilt-loving heart was torn to pieces. Ravaged. To the point that for awhile I stopped posting in the forums. Even though I had questions. Craved community. And answers. Many times over I thought about making Trevor's blog private. Or shutting it down altogether. For I was already saturated with Survivor's Guilt. I HAVE eyes. I HAVE ears. I HAVE a freakin' heart! I didn't (and STILL don't) need to be reminded that Trevor was (is) amazing. A miracle. Trust me...my heart was already shredded by that fact. Long before the lashing came. And it took courage (for me) to continue to share my story. Honestly. Openly. Seizure free-ly. Moderated comment-ly.
Deep down...in that place where things are felt strongly. Passionately. I knew. I think I always knew. In that unexplainable way. That our journey was far from over.
But maybe it has nothing to with a sixth sense at all.
I mean...look around people!
It doesn't take long (although it may self-less compassion) to see that more often than not...the luck runs out!
It may be 8 hours in. Perhaps 8 days. 8 months. Or even 8 years!
In fact, when Trevy's IS relapsed. I was contacted by a mom (btw if you're reading this...please email me...) whose son had been seizure free since their first round of ACTH...until he was 10ish. And then BOOM. Seizures. Spasm seizures. After freakin' YEARS! I watched that video clip and bawled my eyes out. Not because he could read. Or was adorable. Or lucky for so long.
I bawled because the monster that is Infantile Spasms is that far reaching. Like a vicious beast always hunting our children.
I bawled because every family deserves to feel deeply...honestly...all the emotions that having a child with THIS diagnosis brings.
And they deserve to share their story. Authentically. Honestly. Joyfully. Seizure free-ly! Even if their luck never does run out!
Those stories not only deserve to be told...they NEED to be told!
I hear from newly diagnosed families all the time...that the stories of hope are so few. So far between.
Maybe those stories are left untold...not because they've moved on. But rather because they haven't. And feel so incredibly sad...and guilty...and fearful of rejection. And it's just easier to be mute.
Maybe?
I don't know. I'm just guessing. Educated guessing.
And promising.
That I will always always have a soft spot for the lucky ones.
Because Trevor's story has (is) encompassed both sides of the spectrum.
And I'm promising the families struggling with Survior's Guilt. You don't have to here. With me. My heart feels joy that you have something to celebrate. Dancing with you is like food for my soul! My heart also understands the fear that you try not to feel. And the guilt that comes with it. And I need you to know that you are NOT rejected!
And I'm promising those waging war against the seizure monster. Day in. Day out. My heart breaks with you. I am in the trenches beside you. We are brothers. Sisters. Family. And I love you in a deep (perhaps slightly creepy) way!
And I'm promising those that may feel outrage over this post. You are not alone. I have felt outraged too.
And lastly...I'm promising myself. Trevor. That if he should have this surgery. And should we be lucky again. I will celebrate his success with everything I have in me. I will try to slay the guilt that loves to plague me.
And if you shouldn't, Darling. And we battle seizures for the rest of your life here...
I am vowing with all my heart that I will wrap you...my always amazing...beautiful...baby boy up in a great big juicy bear hug...
And count my lucky stars!
19 comments:
I have been reading your blog just recently, as I am always looking for other mom's who know the shoes I fill, can relate to the pain of watching their child have endless seizures, and know the type of desperation, as a parent, to want to just "fix" your child when no drug ever seems to work.
The longest period of time we have gone not seeing daily seizures was 8 days, and in those 8 days there were no changes cognitively, except an occasional smile that was not in reaction to anything. I never "felt" too excited, although it was nice to not see my babies body spasm for those 8 days, I knew his brain was still in some sort of chaotic state, that the "BEAST" was just not rearing it's ugly head in that moment in time. The fear remained idle, as daily I would just wait, knowing it wouldn't be long before I would catch my baby having those gawd awful seizures.That day came. On a rare occasion we may go a day where I see no seizures, but that is just it...I probably just don't witness them that day.
Just want you to know your precious son is in my prayers, as well as your entire family.
You can read more about our journey too, if you like, at our Caringbridge site.
Hugs to you super Mom~
Deb
www.caringbridge.org/visit/hudson
Deb- we all know the shoes you walk in. We all know how tough those days (like your yesterday) can be. I once took the wrong kids for a hearing evaluation. Talk about feeling like a messed up mom!
hugs to you AND Danielle today!
Wow....Well written Danielle! I could feel you anger and hurt at the things that were said to you. And I got angry too. I know that I don't "know" you and Trevy, but to me, it don't matter. When things like that are said to parents of SN children, I get angry along with the parents. Who are these people to tell you how to feel, what to feel, or even when to feel it?
Sending lots of hugs cuz I think it's one of those days when you could use them. Toby, Bristel, & Trevy are so lucky to have you as a Mom. You are a wonderful woman and don't let anyone tell you different!
Adesta- did you see the trouble I stirred up on teh Parent to Parent blog today??
I have just recently started reading your blog. (don't even know how I came across it!). I am keeping your family in my prayers. We too have the seizure monster in our house...My daughter, Hannah, is 9 years old. Her seizures have changed and increased in severity over the years. We only have two medications left to try. A rather daunting feeling that is. We are currently in the process of getting a VNS. I am still having mixed emotions about this. For the last year, we went through the process to see if she could have brain resection. After this LONG process, it was determined she wasn't a candidate. It was an odd blow that my daughter couldn't have brain surgery.
One of the happiest times came this past January when we received our newest family member...Blitzen. Hannah's seizure alert dog. A bigger blessing that I even imagined. He began alerting three days after we came home from training. He, on average, alerts 30 minutes before her seizure begins. He has enabled her to sleep in her own bed again and take a bath on her own. The bond is incredible. He goes everywhere with her; including school. He alerts the teachers too.
I enjoy reading your blog. My prayers are with you. Stay strong....
Her blog if you would like to see it is: 4pawsforhannah.blogspot.com
Marcia K
I love your blog...it's real. It is your (Trevor's) story to be told!
I am always looking for positive stories. I search and search for positive stories of kids with IS symptomatic or otherwise...cause like you said you never really know what the future holds.
I have horrible days full of anxiety waiting for the other shoe to drop and pray to God that it doesn't.
Danielle,
Thanks for the post. Really-it is so true and it brought tears to my eyes. Probably because of a lot of things: guilt and frustration over IS are the top 2.
I check on others blogs and get updates for the yahoo group, but rarely post anymore on any of them. Even Charlie's site. I know people think it is because he is doing so well that I have just moved on, but it is not the reason. I still read blogs of other IS families daily, I do not post any more because I do not know what others will think of me. Sounds silly, right? In fact, I read and check in on blogs as much now as I did from the start.
Thanks for that soul food, you and your family are always in my prayers.
Molli and Charlie
Danielle-
I want to drive to where you are and hug you, and personally thank you for writing this blog. I love ALL of your blogs. Your blogs are real. They tell it like it is. You don't pull punches. You let people know what it is we are dealing with. Because people don't understand what we ARE dealing with. The beast you mentioned that has hold of all of are children. Almost a Freddy Kruger type thing, but it's when they wake is when the problems start. *or in our case in sleep as well* I personally think the lucky ones should be make the stories in to movies, or on a billboard so that the world can see. There is nothing wrong with sharing your happiness and victory (even if brief) against this horrid monster that plagues our children daily. It gives me hope that some day, maybe monkey could be seizure free. And when that day comes (if) I will scream from the roof tops about it. But I will always be scared. I will always wait. I wait now as I get prepared to give my child injections with a needle I rarely even used when I was in the hospital on adults to my 11 month old. But I will do it. And I will hope that maybe, just maybe , we will get lucky for a while, in a few injections we will see a change. And I will be happy. I am always cognizant of the struggles that others, along with myself and Charli face. We are in a fight. Your comment that we are all brothers, sisters , family in the trenches..fighting this war ...really got to me. I cried. I cried through the whole thing, but that touched me. I will celebrate with you any seizure freedom you get for Trevvy, and for any other IS family and child that gets it. I will dance and sing and drink champagne and then I will return to the trenches with my brothers and sisters, and continue to fight for not just my child, but all children with IS.
Danielle-
You are amazing. You words, inspirational, uplifting, honest, speaking to my soul. You are a phenomenal writer. My wish is that you could take these blogs and write a book. You are truly and inspiration, and I thank you for sharing your innermost thoughts with the cyber worlds You helped me immensely today. I was having a blah day, then I read your blog and I realized that I'm not alone, there are people who get this. People who get me. Who I am NOW. Because I am different now.I'm not the same Karen. I am IS fighting Karen. And not too many people get that. But you do. ANd for that I am thankful. I wish I could hug you. You are an amazing person. And Trevvy is one lucky little boy! All my best to you guys.
Wow Danielle. I could feel the emotions pouring out as I read this post. I am so glad that you let it out. I can't tell you how many times I was told how "lucky" Sophie was when she was having countless seizures on a daily basis because developmentally she was ahead of other challenged kids. Even though she is still months and even years behind in some areas. Even so, how am I suppose to feel lucky just because she is doing better than some other child...is it suppose to make me feel better that another child is suffering??? How morbid is that??? As if we need any added guilt to the guilt we already feel. My hearts breaks for you...that you were treated this way. Because even though Trevor has 8 glorious months of seizure freedom it wasn't like he just snapped out of it and no longer had any other medical or developmental issues to deal with. You had every right to feel the way you did. I know it had to take a lot out of you to write this post. Thank you for sharing.
I'm beyond thankful for your blog and even more so for YOU and your friendship. I wish more of the "lucky" ones would share their stories...to give the rest of us hope that their is a chance even if it it a miniscule chance for kids like connor to beat this thing. We all need to stick together in this battle and not try to tear one another down. none of us asked for this monster to enter our lives. for any family that beats this...I'll cheer for you just as loud as if it was my own child!! Love ya girl!!
no Jen, I didn't. I'll take a look now and see....this ought to be interesting....lol
D, I hope you are feeling a bit better now that this is all out. {hugs}
Wow, I don't know how I missed this one yesterday. THIS is the kind of post that will light a fire!! And I mean that in a good way.
There are SOOOO many emotions that churn when I think about this topic. And I can only imagine being in your position (w/ 8 mos of seizure freedom).
I totally agree with Elaine though. I've been told to feel "lucky" or fortunate because Austin can walk, etc. Like that is the only area in development that matters. Should I also feel "lucky" because I get to count countless seizures a day...while he's walking?? Or, be content that he can't say "mama" because he can walk??
See what I mean? LOTS of emotions here on this subject!
I could go on..but I'll spare you! My point...this is one of the most devastating disorders imaginable that we are dealing with. We see our babies have seizure after seizure. There is no guarantee we can stop them. There is no glimpse into the future. We have no flippin' clue how our stories will play out in the end. It's earth shattering. We are entitled to these emotions. The good with the bad. And if someone doesn't like it. They don't have to read it!!
P.S. I'm glad you posted about this. Maybe whoever made that comment before got a chance to read it.
Thank you thank you thank you for writing this post. I have been told so many times that I should be greatful for what I have with KC (I am) and that I am so lucky (I am) but the pain still resonates. He is delayed (slightly), autistic (very mild), low muscle tone (mild), and he still seizes regularly. Not regular as in Trevor's, not a bunch every day, but we might go a week or two, then they are back, always. His MRI, EEG and PET scans were all abnormal just in the past few months. Yet he is smart as a whip. Cognitivly, he is ahead of the game. So people look past the struggles, and just see that. Which is good, sometimes. I still have these moments when things feel sureal...like is this really happening to my little boy? I have a huge dark place inside of me that I so rarely share anymore because I can feel the virtual stares, the whispers of "but he is doing so well. He looks so normal"
You and I have talked about this before. Like you said, survivors guilt. I'm with you Danielle. I hear you. You have a right to feel what you feel, regardless of anyone else. This is something that simply should not have to be justifyed.
Thank you for writing this.
Love Karen
I have been reading your blog off and on since our baby girl's recent diagnosis (April 17th). I just cried when I read this post. My husband and I feel like we are where you were...seizure free for over 5 wks now, and we have such mixed emotions. We are so excited and so worried...praying all the time. Trying to enjoy these moments, and not letting our fears get in the way...it isn't easy.
Your words, your emotions, are so real and I felt like you were speaking about what we all feel. Thank you for being the voice of the IS community!
People can say the dumbest and most hurtful things, at times it is unknowingly, plain ignornance, or just mean.
No one gets how hard this is, how difficult it is to keep it together. We should be able to celebrate the seizure free days and support one another. People that haven't been through this should not discount our concerns or fears of them returning. No one should ever think that it is their place to tell us what to feel, how to feel, or when to feel it....these are OUR feelings, and we have a Right to truly FEEL.
These aren't like other seizures, these are Infantile Spasms, such unknown territory by so much of the medical field and general population...these are seizures that can rob a child of so much of their life. Hence, why we all have a right to feel whatever we are feeling, whenever we want to feel it.
Thank you so much for this post! For allowing me to have a better grasp on what is truly mine...My feelings, My thoughts and dreams for my baby girl. You have definitely inspired and encouraged me to have a stronger voice in this fight for my daughter.
You are a wonderful and amazing mom! Sending you the biggest hug!!
When Dawson was dx we searched and searched for something positive to read about Infantile Spasms. There was nothing out there. No good stories,No good outcomes, and no hope for our future. When Dawson became seizure free I wanted to make sure that we were able to put a spot of hope in sombodys life. Even though that hope is only a grain of sand, its still there. Many many times I felt guilty telling our story. Telling how well Dawson was doing, telling how many days he had been seizure free. Thinking about how " Lucky " we were....
The truth is, you are right. None of us are lucky. To bear the burden of seizures, to wonder constantly what the future is going to be like, to live in fear of when the next cluster of seizures will apppear. At 360 days we had all but lost the fear of seizures. Feeling pretty confidant about things and as you well know, the seizure monster reached out and stuck once again.
Your post is dead spot on!! The feelings we all feel are real and unless you have lived it, you cant understand it. Its what joins us all together. The understanding of what each of us is going through.
To those who have success stories... I say TELL IT and TELL IT LOUDLY without guilt!!! There are those out there that need, and are searching for that hope. Celebrate all victories big and small.
To those who are struggling... I say again, TELL IT LOUDLY because there are people out there who understand exactly what your going through.
Thank you friend for bringing this to light.
All I can offer is to continue to pray for Trevor.
And
Give you a hug in person next week. Barbara
So I had grand ideas of responding to each one of you individually...trouble is...I have three kids! Who are constantly needing a ref...a cuddle...a drink...or food! Time is limited!
Thank you everybody for your support...and prayers...love...and heart connect! Each one of you made me smile...cry...and fall a little bit deeper in love. I'm Italian...we love hard core! *wink*
This post was not easy. I knew that I'd get some flack for it. But I also knew that I couldn't live with the elephant in the room forever. And recently many different things have collided until I knew that I had to write it. And I'll never regret pouring my soul out...
Although, Elaine...you are SO right. It took a lot outta me!
Anyway...
Trevy's here...seizing at my knee...so away I go!
XOXOXOXO to all
...danielle
Thanks. You said the unsaid.
Carolyn
Thanks for sharing so much of yourself. I am late checking this (ACTH stole my child and replaced her with a gremlin who screams or nurses all day!) and basically everything I have to say has already been said above by all the wise readers of your blog.
But I also personally want to thank you for being supportive and reaching out to me. Not only do you write a blog that tells it like it is and makes other IS moms feel less crazy and alone in their feelings and experiences, but you also personally support people who are fighting the same war.
Many thanks and hugs!
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