By: Jessica Jordan
When I stop to begin writing about myself I find that as I’m
doing so I get jumbled up in the mix of my own life. In a way it seems like
I’ve spent so much of the past six years living moment to moment, day to day,
and sending up a prayer of thanks at night when the worst didn’t happen. Don’t get
me wrong, I have an amazing husband who serves our country in the military,
three beautiful children and a truly blessed life. I too spent several years
serving in the military, where I met my wonderful husband. At first glance of
my family and I together no one would ever think of us as anything more than a
family of five: three beautiful and happy kids, with my husband and I overseeing
the busy but beautiful chaos life brings as a military family. Like every
family we have our battles, but our biggest battle chose us and reminds us
every day that those beautiful moments are something to be treasured. That’s a
fact I learned all too well six years ago. My oldest daughter Evelyn was only
four at the time. She was a happy and healthy little girl until one day that
all that changed, and my world went upside down when a park day with her and my
son ended in an ambulance ride due to her collapsing and having her first of
many grand maul seizures. A few months later I sat in a doctor’s office and was
told that my daughter had epilepsy. To say I had the wind knocked out of me
would be an understatement. Because of that diagnosis I have focused most of my
energy on supporting her, helping her cope and caring for her in every way I
can. As a mother I always felt it was my job to protect my children, to kiss
away the boo boos and make things all better. This time no amount of kisses and
cuddles could chase away what had taken over my baby girl. Since then I did all
I could to educate myself about her condition and how best to care for her. As
time went on and she began school it became clear how little education and
information was out there. I found myself fighting with schools to constantly
ensure she had the right care and people who knew how to help her should
another seizure come. It took three medication changes and three years to
finally stabilize and control her seizures. I always believed that if I thought
about myself, about how it impacted me, I was being selfish. On top of that I
am a wife and mother to two other wonderful children, all of whom who need me.
It took me a long time to finally stop and truly reflect and see what the last
six years have meant to me.
It wasn’t until I discovered the South Carolina Advocates
for Epilepsy (S.A.F.E.) in 2013 and began talking often with their founder that
I realized I had never truly processed everything that had come over the past
few years. More than that I realized that how I did feel wasn’t wrong and it
didn’t make me a bad mom. This realization allowed me to grow not just as mom
but also as a woman. This acceptance and openness gave me the freedom to push
through hurdles I had put up for myself and finally be able to honestly answer
that mystery question of how I truly feel about it all.
As a mother of a special needs child you are constantly pulled
in many directions. She needed to be supervised more, to be medicated at
certain times and always had some appointment to be at. The demands can wear
anyone thin. Especially when I have other children who need me as well. For a
long time I felt such guilt because as much as I was trying to do and be for my
oldest daughter, it seemed that in some way my other two children weren’t
getting enough of mommy. I would do my best, but no matter what I felt
defeated, like in some way I wasn’t being the mom I should be to at least one
of my children at any given time. I would miss things with my littlest or an
event with my son because the epilepsy had struck again. While over the years I
was able to get my breakthrough, to find my balance in the chaos, there are
still so many mothers out there who I know had to have felt the same way. I
mean, I couldn’t possibly be the only parent of a special needs child feeling
lost in the chaos, never really processing all the life changes but doing their
best to handle them any ways.
Today I can openly do that: robbed. I feel robbed for me, robbed
for my daughter and robbed of all those parts of watching your child grow that
a parent can enjoy. Instead of celebrating milestones, enjoying watching her in
sports or dance class, we had to withdraw her from them because the high
activity triggered seizures. Instead of sleeping through the night I would sit
awake next to her bed praying that she’d be okay and no seizures would come in
her sleep that night. Instead of enjoying that precious first day of school I
found myself running between teachers and nurses and school staff to ensure
everyone knew how to treat her and what hospital to let her be taken to should
something happen. I sat glued to a phone praying she could enjoy school, make friends
and not have a seizure that day. I felt robbed for my son’s sake, knowing that
so many times he witnessed those seizures and cried for his sister. I felt
robbed of the times they could have spent playing together but instead was
spent in hospitals. I felt robbed of the precious moments I missed with my
other children. In all truth I was able to finally admit one huge thing: I
hated epilepsy. I hate what it had done to my child and the way it made her
feel, I hate what it put our family through and I hated that my kids were
robbed of so much time in their own ways. I was always exhausted but pushing
through so I could give more to my children and my family. While that wasn’t a
bad thing, it wasn’t helpful to my own personal health. I quit focusing on
anything that involved me. I realized that in a way I had lost me, lost sight of
my goals and dreams because there simply wasn’t time for it.
Finally accepting and grieving what had happened helped open
my eyes to the realization that for many years I never stopped to care for
myself, and that was why I was burning out. With this realization there was
more positive that came out of it than I ever expected. I felt driven and
inspired to really start pursing my goals, to show all of my children that as a
team we were stronger than epilepsy. Most of all I realized it was okay to want
more for myself too, and that didn’t make me a bad mom. My feelings were not
wrong. They were human. I started going to support groups for parents of
special needs kids, and in doing so I was able to finally obtain some peace and
balance. Talking with other parents who felt as I did and were there to support
me through this journey was an incredible inspiration to me. In time I was able
to find ways to ensure each of my children had the love and connection with me
that we both needed while also caring for my daughter as she needed. I quit
trying to take on every task and started to let my husband share that load more
like he had tried to do so many times. As moms we try to take on the weight of
the world, and I’m here to tell you it’s okay to share that load with your
partner or close family. I found that “coming to terms” with the changes didn’t
mean I had to run on steam; it meant that my entire family could flourish.
My husband and I took one very important piece of advice that
I believe every parent, but especially those of special needs children, needs
to know and truly apply: “Take a break. You can’t take care of everyone else if
you don’t take care of yourself!” It’s okay to stop for a second and do for
yourself. Take a warm bath, start a new project, go for a walk, join a gym for
a daily workout, enjoy a cup of coffee and a good book. Most of all throw away the
guilt of it. You’re not only entitled to do so, but you need it. The more you
ignore caring for yourself the more you develop a detriment to your own health.
Depression, anxiety and loneliness are among some of the most common things I
have seen and even experienced myself. Your mental and physical health is
vital, and there are dozens of outlets you can use to help you find support and
balance. From support groups in your community to attending awareness events,
there are ways to get involved and help nourish your soul at the same time.
Social media is an incredible outlet as well. There are hundreds of pages for a
number of different causes all dedicated to helping educate and support. It’s
important to find people dealing with similar situations that you can connect with
as it helps remove the feelings of isolation that so many do not even realize
is underlying so much of themselves.
A key thing I have learned to apply is talking openly and actively
about the battle my child and my family faces. Advocating for our cause has
become an outlet for me and helps me to feel some amount of control with a
condition that is unpredictable. My entire family has taken up doing the same,
and it has given us time as a family and a chance to give support to others
while getting the support ourselves. Being involved with S.A.F.E. in particular
became a turning point for me. The more we did and participated in with them,
the more I felt the urge to get involved in raising awareness for my daughter.
Over time we have taken that motivation to create our company Purple Rose
Candle. Using our knowledge of epilepsy and scent risks we created safe and
family friendly candles designed to help raise awareness for our daughter and
the millions like her. Pursuing and growing our company has helped me as a
mother by giving me my own identity while allowing me to fight for my children.
We make it a family affair all the way from production to selling our products!
These days when people ask how I feel I still say I hate epilepsy, but I can
add to that now and say that it won’t control my family. By opening up and
finding the support I needed so much, I feel like me again. I’m confident in
myself as a mother and owning my life as woman. Life with a special needs child
will always have its challenges. There will always be a bit of chaos and times where
things don’t go as planned. But knowing how to take care of myself, having my
own outlet and keeping that support system in my life I know I can face it all
head on and be strong without being broken by it.
I can give time to my children and enjoy life, teaching them
that they too can take control of their lives no matter what it brings. So I
encourage all of you to take care of yourselves, let yourself have some peace,
open up, seek out support groups and be active in your own life. You’re allowed
to feel angry, upset or any way you want to feel. Never apologize for it.
Jessica Jordan lives in Charleston, SC with her Air Force
husband of 4 years and their three beautiful children. As a couple they have
launched Purple Rose candle, and all natural candle and bath/body product
company focused on scent safety and raising Epilepsy Awareness with a portion
of the proceeds to raise money for Epilepsy awareness. To email Jessica go to:
purplerosecandle@ gmail.com or for more information on Purple Rose Candles go
to www.purplerosecandle.com