Sunflowers and Seizures
This whole year has been a challenge, but just the past week
has been a whole different struggle. I was told by a friend that I've become desensitized
to Sage’s seizures, and to be honest, I have. If you were to see your baby
struggle through seizures so often, multiple times a day, I'm sure you would become
desensitized as well. It's definitely not that I don't care, I would not be
able to emotionally or mentally handle it if I let myself “feel" It all
every time she had a seizure. Most people won't truly understand what that
means, only those who have been in a similar situation. So for those who have
been lucky enough to not experience seeing your child have hundreds, (more
realistically thousands for Sage), of
seizures, I will try to put that feeling into words.
So before I get into the FEELINGS of what it is like, I feel
I need to explain what types of seizures there are. Seizures come in so many
forms, they may look slightly different for each person, and can cause
different affects for each person as well. When the majority of people think of
seizures, they think of what is portrayed in movies. The falling to the floor, convulsing,
and basically unconscious. That is a type of seizure, but there are so many
other types.
Sage first started by presenting with Infantile Spasms, which
can be mistaken for an exaggerated startle reflex, but are really a very
dangerous type of seizure. If not treated quickly, they can cause serious brain
damage. THEY ARE A MEDICAL EMERGENCY. If anyone thinks their child is having IS
get them to a pediatric ER immediately!
She then presented with: Tonic (whole body tightening), Tonic-Clonic
(whole body tightening with jerks), Focal (named for the it being focalized in
a part of the brain, usually affecting one side of the body), Atonic Head Drop
(whole body losing muscle tone and going limp), and her most prevalent ones now
are Myoclonic (quick jerks/tonic movements. For Sage they usually come in
clusters).
When I watch Sage have seizures and don’t compartmentalize, it
is like someone punches you in the stomach, you feel helpless, angry,
overwhelmed, and you feel every single pain you imagine your child to be feeling.
You fear the damage that it may be doing to your beautiful baby, the future it
is stealing away, you know that this moment will end, but another will be right
around the corner and the extra fear and anxiety of waiting to see the next one
happen is awful. You know there is nothing in your power to help it, you have
to wait for the seizure wave to end, loving and comforting your aching baby the
whole time. You aren’t allowed to fall apart because they need you more, they
need to know you are there with them through it all, and you are their safe
place.
I asked parents on some Facebook groups specific to Sage’s
diagnosis (Infantile Spasms, PVNH, and Aicardi) : “I'm trying to put into words
what we as parents go through when our children have seizures and why we have
to compartmentalize so we can function. How we feel, emotionally, mentally,
physically, and how we mourn for our kids. How we feel in the aftermath and how
it can affect us long-term.”
These are some of the responses I got:
INFANTILE SPASMS
“The best way to describe is feeling so alone. Even with a
support system the loneliness is overpowering. Watching every single movement
they make, hoping and praying it’s just a “normal” baby movement, sleepless
nights worrying about their development and how they will progress. Crying,
wondering if the seizures will stop and if they caused damage. Waiting for answers
on why it’s happening, MRIs, genetic testing and just waiting weeks on end for
an answer. Then getting an answer and dealing with that and what that can mean
for development and any additional symptoms (if not idiopathic). Blaming
yourself for them going through this, begging for it all to stop, for your
child to just be healthy like other kids.
-
Kerry Bautistia
PVNH
“I have been asked this before and the only way I can
describe is - that we feel so frustrated that there is nothing in this world
that can help /resolve the seizures, the guilt you feel that they have to
endure such a horrible unforgiving experience usually multiple times a day. You
wish you could have the seizures instead of them, but being a main care giver
who would look after them when you are incapable. It’s a case of living day by
day if you have plans you always have to have an alternative “in case “ it’s a
really bad day and you have to let down friends /family if you had arranged
something (although they do understand you still feel sad ).It’s a case of
putting the blinkers on and going into auto drive as the seizures are a daily
part of our lives and you still have other children who need you .Sometimes you
want to run away and just cry about how life is for you all as a family but
mostly for our child who suffers .But
the realization is that it’s not going to help anyone or change anything
this is how life is and for as long as we are here we have to make the most of
the situation and not let it grind us down . Xx
-Beckie Davy
“Explaining seizures to other people is super hard! It’s our
“normal”. There are 2 things I usually like to share when people ask me:
First – On the one hand, seizures are OUR hard stuff. I
don’t know anyone else who has to sit on the floor of their hallway before
school holding their kiddo while they have a seizure while also waiting for the
school bus to arrive. Or see anyone else who has to sit on the floor at Walmart
when she has a seizure because they don’t have a buggy a 14-year-old can sit
in. Or who can’t let their kid walk around the house on their own because it’s
unsafe if she falls because of a seizure.
But on the other hand - as a younger sister of 4 older
siblings – all with normal functioning kids – I know they each have their own
“hard stuff” they have to worry about each day that I don’t. Even with my other
normal functioning kiddos – I have just as much worry for them and their own
“hard stuff.” I have lots of friends who
have normal developing kids going through really really hard things – some
medical some not. So, the best way I can relate to other parents is to tell
them we all fear and sorrow for our kiddos exactly the same. We just
unfortunately have to see an outward sign of it every day, multiple times a
day. So, there’s not always as much rest from the stress.
Second – the grieving is ongoing. We love our kiddos so
much!! But we still grieve the loss of the life we thought they would have. And
are sad for the pain or discomfort they have to endure. We don’t just grieve
once – it hits us multiple times and at different stages as they grow up. I
remember some of my closest loved ones all coming to the house after her first
seizure/diagnosis to offer support. But I didn’t need it then – I needed it a
year later when she wasn’t walking. And a few months after that when going to
play dates was hard because she wasn’t meeting any milestones like the other
kids. Or when she had to have surgery, or when she was in the ER because of an
injury from a seizure…or right now as we plan for special needs trusts and what
will happen as she ages into adulthood. So, while we are in love with her and
are settled into our “normal,” every new life chapter has some grieving with
it.
-
Aubrey Eichelberger
“I have to have what I call my emotional breakdown. I will
disappear for 5 mins when it’s all calmed down, sometimes hours later sometimes
whilst it’s actually happening, and I will break down. Seeing your child have a
seizure is horrendous, it really does break you in 2. I look at my child (who’s
5 with other disabilities) when he says I want to be a fireman when I grow up
and I smile and nod knowing deep down he’s never going to have that opportunity
(not really anyway). Getting him to take (horrid tasting) epilepsy meds and
seeing the side effects take effect and constantly wondering if or what’s the
best decision for him. People looking at you like you’re a overprotective/over
bearing mum when you say sorry we can’t be there for that as it will be too
much for him. Constant mum guilt xx
-
Anna Brown
“I always feel like I’m living in a timebomb, when will it
happen? Constant anxiety. My daughter is 11 and started having seizures a year
ago. I appreciate it’s likely to be even more turbulent through the teenage
years. I’m always strong when she has a seizure and afterwards (to her) and
then I break down. My own mental health is suffering and I’m on medication.
-
Lauren Stevens
“I found I went through a long period of mourning for my
daughter. Sorrow for her and myself at her suffering and things we were missing
out on, that led to bitterness at other people not going through it and
enjoying early motherhood. It took around 3-4 years before I felt I had
accepted how life is for us and decided to become braver and stronger, thicker
skinned so to speak, and stop hiding from the world in our home.
-
Kelly Mallion
“Seeing kids having seizures or syncope fainting is horrifying
and that image stays with us for a long time. We have to act normal and be calm
to cope with that situation and take immediate action, but the reality is we
almost sink down and wish we could just erase the whole episode for our kids.
Kids get our support, but we adults hardly get that support
to cope emotionally. Outsiders never know what we kid, parents and family go through,
so we can’t speak and even if we do, they won’t understand as they never see or
experience this.
Glad you brought up this topic. On Sat itself my daughter
had a major syncope but with seizure like event when we had to rush her to hospital
and undergo all the EEG and tests which came normal but I haven’t been sleeping
as I need to keep a watch 24 hours if she faints and hurts herself.
Whenever I close my eyes I see the event and feel worried
for her future.
Lotsa love and care for all parents and patients themselves
going through all this alone or as a family.
May we all find the STRENGTH to face everything .
-
Laxmi Haldipur
AICARDI
“ It’s so hard to explain. You’re powerless watching your
child go through something that may take a few seconds to minutes that won’t
stop without intervention. And that’s hard too because there are risks with
sedation. I always feel like I’m waiting for the other shoe to drop. I’ve
become great at calculating 15 minutes at any time because that’s our threshold
for rescue meds. Hope that helps.
-
Becky Delgado
“ I believe that it’s a trauma response to chronic PTSD. You
see your child having yet another seizure.
You know full well that getting upset will make the situation worse, and
that it will solve nothing. You have to
set your emotions aside completely to deal with the situation, because you need
to be in full control of your faculties to maintain vigilance on your
child. You learn how long your child
will seize for, and if you know that it’s going to be a short one, you worry
less, because you know it will be over soon.
You start to recognize when it will be a long one, and get the rescue
meds ready. But you still can’t be upset
because that won’t help.
I liken it to soldiers at war, or EMTs, or other trauma
related careers. I think it could even
be compared to an abused wife in some ways…..
you learn how to let the trauma of the situation roll past you so that
you can make it to the next moment. The
next hour. The next day. You know you
can’t leave. You know you have to deal
with this whether you want to or not.
Because it’s for someone else that you have to function. Someone else needs you more than you need
yourself, and for your own sanity, you can’t focus on it, or you will lose
yourself completely.
One of my repeated sayings lately, is: Sh*t needs
doing. Whether I have had enough sleep,
sh*t needs doing. Whether I am happy or
sad, sh*t needs doing. Whether my child
has been up screaming since 4am because she needs a seizure to release in her
brain, sh*t needs doing. I don’t have
time to wallow, or feel sorry for myself, or anything else…. Sh*t needs
doing.
2019 was an extremely traumatic year for me, between
Emalie’s needs, my health issues, and extended family. I’ve always been able to compartmentalization
things pretty well, but there was simply far too much happening that year for
me to process it fast enough. I needed
counseling, but that’s a different issue….
It took me a few years to get past that.
I still need counseling, but I’ve managed to compartmentalize it enough
that I can function, because… sh*t needs doing 😉.
-
Shana Liz
“ I feel so sad. My
family gets marginally alarmed, friends get very concerned, strangers freak
out. It all depends on where we are. I go through all the checklists of
possible triggers while comforting her and praying. I plan counter attacks like
as if it’s a real enemy and eradicate every future possibility with actions
proven and then the possibilities that I’ve researched and I’m tired. I feel so
far out there sometimes it’s like a precise to a cliff. Sometimes we just
cuddle and I talk to her or I might sleep with her awhile. My career is on hold
where I am. I no longer have desire to move up the ladder, I just want to spend
time home with her but I can’t battle the bills and the whole world. I know
they’re painful, don’t care what the Dr says. I pray I outlive her but don’t
know what I’ll do without her and vice versa. Sometimes I wish she could be
freed from the bonds but I will never give up. I’m tired but I get up, thank
God for her health and keep going and I tell her she’s brave and powerful and she
beat it again. That’s what seizures are in my house.
-
Sherry Kendall
“ I remember hearing before that seizures for our kids can
be compared to riding a rollercoaster. I feel that is a relatable analogy for
us as parents/family members/caregivers:
The anticipation or fear (or aura for them) of climbing up a
really large hill, then the drop (or release, screaming/crying for them ~
sometimes us too! ~ an occasional smile for us both), then the relief and
ability to reboot and breathe again once it’s over. However, the rollercoaster
is ongoing…never really knowing if or when it’s going to end…which can be just
as scary (for both ~ mostly us) with each scenario. If they/we are lucky they
may have smooth riding for awhile. The calmest part is that we’re by each
other’s side the whole time, riding along this journey together…So neither one
of us is alone. 💟
-
Amanda Morelli
These are real life accounts of what it is like to have a
child who suffers from seizures of all types. This is an aspect of our lives that
is often taboo to talk about, but nonetheless it is very real and ongoing. Not
all of these parents have to deal with daily seizures, every disorder comes with
its own set of complications and outcomes. Sage is just lucky enough to have
all three of these, our beautiful unique unicorn.
In all these moments of trial, watching your child have
seizures, and praying and hoping they stop, it is hard to see the light at the
end of the tunnel. This past weekend I was lucky enough to go to a Sunflower
farm with my girls and get some pretty cute pictures. As we were there, looking
out across the acres of flowers I couldn’t help but feel a sense of awe and peace.
After such a hard few weeks for us, it was a breath of fresh air to have that
feeling, no matter how brief it was. I decided to look up what meanings are
behind sunflowers, and I loved the symbolism I found.
“The
sunflower is seen as a sign of hope and warmth, positivity and strength, strong
bonds and lasting happiness — always looking for the light.”
-
https://colourrepublic.com/blog/what-does-the-sunbelievable-sunflower-symbolize#:~:text=The%20sunflower%20is%20seen%20as,always%20looking%20for%20the%20light.
Living this life, we have to find these moments of “looking
for the light”. The smile after a seizure is the light, when Sage giggles, when
she purposefully swats at us or a toy, and when she is able to communicate even
the smallest of things to us…these are our moments of light.
I have always loved sunflowers, and we actually have some
wild ones growing in our yard, but after finding that meaning of them and
experiencing everything we do, I love them so much more. Sage has some hard
moments, but if we look, we will always find the “sign of hope and light”.
.JPG)
Comments
Post a Comment