Why Families Need a "Village of Support" for Epilepsy
Mr. Evans,
My son picked up your book the other day and asked me to tell him what it was
about. I had not had the chance to read it completely yet, but I spoke to you
while purchasing the book at the expo in California. After telling him what I
knew about the book, he said, "oh mama, that's a book about me." My
son is 8. His name is Keithan. He's had seizures since 1 1/2. He was finally
diagnosed at age 4 after countless er drs, first responders, pediatricians,
nurses, etc. had told me "he's fine. There's no need to call an ambulance
or come to the ER. He doesn't need to see a specialist." I was torn. For
nearly 3 years, my mother's instinct told me one thing, and the professionals
told me something else. I was a young mother struggling to go to college and
work as I could. You see, I couldn't afford daycare at the time, and anyone in
my family that was willing to keep him for little or no money was scared he'd
have a seizure so they either found an excuse to keep from hurting my feelings
or were just totally honest. It hurt but I did appreciate the fact that I had
people that cared enough to not be over confident in their ability to care for
him and just be honest with me. When he was finally sent to a neurologist, I
just knew that I would get the answers I'd prayed for all that time. As I left
the office, I looked back at his little self in my rearview and cried the whole
1 hour drive home. He asked me what was wrong and I couldn't say anything to
him. I should have asked someone to go with me, but with what all the
professionals had told me before, I guess a small part of me wanted to believe
them. So, I took him by myself. When we got home, I went to my parents and told
them the news. My 70yr old father broke down in tears apologizing. You see, my
dad has epilepsy as well. He fought for our country and has faced many
challenges that many men would crumble under...but knowing what his grandson
was facing brought him to tears. My heart broke all over again. I did not blame
my dad and it hurt me to know that he blamed himself. I told them how all the
way home I wanted to stop at the hospital and pediatrician and beg them to tell
me why they lied. Why didn't they tell the possibilities? Why did they give me
false hope? These are people you should trust. I will never forget the paramedic
that told me I didn't have to call them...I looked down at my child lying limp
in my arms, not breathing normally. I kindly told him he could either drive my
child to the er or get out of my way so I could. These are all flashbacks that
went through my mind as the news sunk in years later. At that point I made up
my mind that no person that came in contact with my child would not know about
his condition. I also knew that the battle would be hard at times but
regardless, I would promote awareness. I immediately began researching. True,
I'd seen my dad have seizures for years. But it was different watching it take
over my child's body. He started medication and the changes to our lives began.
The preschool teacher would call, "do you care to come get Keithan? He's
having a hard time staying awake." I'd get to the school and she'd be
holding him like her own child. He had a seizure at a local splash pad..the
lifeguard ran up to us and looked at him laying on the ground not
moving.."he shouldn't have been horse playing!" His great grandmother
not so kindly told the lifeguard what was happening and that he'd just stopped
seizing. His entire attitude changed. My baby was less than a foot from a drain
that was full of standing water. It's only by God's grace that he didn't land
in the puddle. It could've been much worse. We went through a few
hospitalizations, medicine changes, tests, bloodwork...everything eventually
leveled out and the seizures didn't come as frequently. He started "big
school" and that was a different struggle. Some of the higher ups didn't
want to give him the plans he needed to succeed but I fought. Everything
leveled out again.. I was just learning the roller coaster of epilepsy. I found
out I was pregnant soon after my son was diagnosed. The first thing I asked the
dr was about the chances of this baby having epilepsy...that's another thing
I've leaned about epilepsy. There a very few "solid" answers. And as
a mother, that's the one thing I wanted most other than to take the battle from
my child and fight it myself. My youngest son, Carlin, was born in November.
Everyday I prayed. Age 1 1/2 rolled around and Keithan and I were laying in the
bed with him. Suddenly I felt the bed moving. I jumped up knowing what was
happening..Keithan was having a seizure..only as I jumped up, Keithan jumped up
as well. He was nearly 5, but he was smart. "Mama, bubba is having a
seizure!!" He went crazy. Crying and screaming that I not let his brother
die. Thankfully, Carlin has had normal tests results and hasn't had as much
activity but I will always worry. I have been pretty much a single parent
through all this. But I thank God for every struggle. While reading your book,
I remember trying to work at a job making very low wages..and having to sign a
form acknowledging that taking my kids to the er or dr would not be an excuses
absence and would result in termination. I knew this would not be the job for
me, but kept working until the time came that I had to take one of them to the
dr. My only thought was, "how can they tell me that I will lose my job for
taking care of mum kids?" But I was te one that signed the papers so I
knew I couldn't argue. I just began to work as a substitute teacher and wash
cars or mow lawns for money. My parents helped too. The more research I did,
the more I came across terms like SUDEP. I then came in contact with the Emfit
corporation. I could not afford one of their monitors, but the lady was nice
enough to give me contact information for a group that may be able to help me.
The Danny Did Foundation in Chicago. I left a message and made other plans. I
called my local banker and explained lmy situation. We were to meet the next
day. Thirty minutes before my scheduled meeting with the banker, Tom Stanton
from DDF called my phone. They were going to pay the full cost for a monitor!
God is good! I immediately asked what I could do in return. His only request
was that I raise awareness for epilepsy. His 5yr old nephew died from SUDEP. I
eventually did a bake sale raising $900 to go back to them. That would cover
the cost of one monitor and half of another! So yes, you get what you give.
Only they were gracious enough to give to me before I had the chance to return
the favor. Seeing the support from my tiny town motivated me to organize the first
ever epilepsy walk in our county. Somewhere around 50 people came. I think I
cried the entire time. Especially when I introduced myself and honored the
people with seizures/epilepsy. Three of which were my dad and two boys. My boys
have faced more in their short lives than I have my entire 28 years. I gave
birth to my heroes. They never stop. Even with all the issues that come with
epilepsy besides the seizures. My oldest son has a best friend in school. He
had leukemia. They stick to each other like glue and have since kindergarten. I
did a little class for his classmates and explained about epilepsy. This was
spurred on by the fact my child would come home from school crying because he'd
felt funny during the day and was afraid to have a seizure in front of his
friends. There have been times when I've talked to people about what my kids
face and cry or have a lump in my throat. But when my sons best friend asks me
to give him a "team keithan" purple epilepsy shirt...I know that we
have a village too! This is the same friend that had leukemia. His name is
Trevor and my son has a team Trevor leukemia shirt...the one thing I wish the
world would understand is that epilepsy doesn't just affect you for the
duration of your seizure. It doesn't affect only the person having the seizure.
I have finally found a job that understands my children's illness and my need
to be at their side anytime I'm needed. True, I don't make much money and we
struggle, but I am working and my children are healthy. Many jobs won't keep
you around if you have to miss work like I've had to do at times. I'm just
thankful I found one that finally works with me. Not against me. I've had
mothers or friends tell me they don't know how I do it. This always puzzles me.
I want to ask them just what my other options are in their opinion , but I know
that they only mean the best. I know I have rambled on, but I can relate to a
lot of what your book is about. Epilepsy doesn't get the limelight it needs to
get funding and research. The stigmas that go with epilepsy and the fear of the
uneducated do so much harm. People in general don't even have the first idea as
to what seizure first aid is. My children are my world. I know they're only
loaned to me from The Lord. And I also thank him for givig them to me and
trusting that I can take care of them even with this illness...at times I do
feel overwhelmed but I look at them and see that they don't give up. So why can
I be selfish and give up?! I can't. And I wont. From Stevenson, Alabama, you
have a mother and two little boys who know what epilepsy can do to your world!
Financially, emotionally, physically, and mentally. We are here, but please
know we are now a part of your village. Please don't stop! If you ever come
this way, please let me know. May God bless you. May He help us fight this and
promote awareness until there is a cure! On the inside cover of the book we
purchased, you wrote, "Keithan you are a winner! Remember you have
epilepsy but epilepsy does not have you!" Yes! You're correct. And I plan
to keep your book forever. I will give it to him when he is a little older and
remind him of how far he's come. Thanks to people like you, he will go
far.
Sincerely,
Mollie Campbell
Sent from my iPhone
