I
grew up in the seventies and early eighties where the examples of
motherhood were depicted in shows like The Brady Bunch. All of the
families problems were solved in thirty minutes. Carol Brady was
never tired or sick and was able to raise six children without ever
raising her voice. I regarded my Mom as being just like Carol and
knew when I had my own children that I would follow in the footsteps
of these perfect women. It wasn't until I had my first son that I
realized what I thought was the reality of motherhood was actually a
fantasy. Along with the learning curve of being a young first time
mother, I also would find myself battling a never ending chronic
illness.
I
grew up with a mom who never stopped. She was always doing something.
From the time her feet hit the floor in morning until those same feet
went under the covers at night, she was in motion. I have been told
the story of how when I was just two days old my Mom was right back
at the elementary school (with me in tow) that my two older siblings
attended. She was in charge of the entire spring fair that was taking
place just three days later. My Dad worked out of town Monday through
Friday my entire childhood so I watched my Mom take care of the three
of us all by herself. She seemed unstoppable. I can count the number
of times that she was sick in bed on three fingers. Growing up I was
under the distinct impression that moms were always busy doing mom
things and they were never sick or injured. There was the time when
my Mom's thumb was crushed in a car door. Before going to the
emergency room, she made sure each of her children were taken care of
with our homework done and dinner served. Then and only then did she
finally go and have her finger looked at. I had no idea this incident
had ever taken place until I was in high school. I guess my Mom
learned the art of never stopping from her Mom. For example, I will
share the fact that my Grandmother was still taking care of my ailing
Grandfather while she herself had broken ribs from her fragile bones
giving up. The bar had been set pretty high for me in terms of being
a caretaker to all but myself.
I
was just twenty years only when I had my first son. The delivery was
insanely difficult. I went home from the hospital with a newborn,
twenty stitches and a catheter. With all of the endless dedication
that I had experienced with my own mother, I plunged deep into being
a first time mom. Even stitches and bag used for urine collection
strapped to my leg couldn't keep me from staying busy taking care of
this precious baby. At that point in my life, it was the single
hardest thing I had ever had to do. I was not prepared for what it
really took to ensure the health and happiness of another tiny human
being. I had grown up witnessing my Mom seamlessly take care of me
and my two siblings by herself. She made it look so easy. I never saw
her cry, be angry (maybe once with me because I was so sassy) or seem
overwhelmed. I told myself to soldier on and stay busy.
Imagine
to my utter dismay when my first son was just two years old, I found
myself very ill and unable to preform the most basic mommy
activities. I spent an entire month unable to leave my bed. My family
doctor claimed that I had contracted a very nasty stomach virus and
would just have to ride the storm of horrible symptoms out until it
passed. My husband and I owned our own business at the time and he
would have to leave me at home alone with a very mobile toddler for
up to twelve hours at a time. I remember putting my son Ian in bed
with me and running the same ghastly video tape (this was back in
1997) that had clowns in it over and over again because it would make
him stay still. That memory is seared into my memory because I
remember thinking that the situation I was in (having to put my baby
in a playpen every five minutes so I could race to the bathroom) had
never happened to my Mom. Or...at least if it did happen, she never
told me and I certainly don't remember anything this horrible
happening to her. If it wasn't enough that I was so ill I was also
berating myself for not being strong enough to overcome a simple
stomach virus. I wasn't able to move and stay busy with my mommy
responsibilities. I should have gone to the emergency room but that
would mean that I had something more than just a stomach bug and the
ER visit alone would take me away from my job as a mother. I never
got over that nasty stomach virus. That simple stomach bug lingered
and morphed into a chronic illness. I developed daily aches and
pains. Every time I ate, I would feel bloated and nauseous. I also
suffered from debilitating migraines. I learned to cope with my
ailments but knew that what I was experiencing was not normal. I had
been seen by several different doctors and none could figure out why
I was still feeling so ill. I felt hopeless and trapped in a body
that was wasn't working right but I couldn't let that show on the
outside. I had to be strong for those around me even though I was
slowly falling apart on the inside. No one knew the extinct of my
illness, not even my husband. I didn't want those closest to me to
think I was losing my mind so I kept my illness to myself.
When
Ian was about four years old, I went on a vegetarian diet. I felt
better eating this way but I was always starving. Just feeling that
little bit of relief felt like a miracle and I was willing to ignore
the constant burning feeling of hunger. About a year into the
vegetarian diet my symptoms both mental and physical stabilized
enough that my husband and I decided that Ian needed a sibling. I got
pregnant very, very quickly. During this second pregnancy, I felt the
best I had in five years. I could eat anything I wanted which
included meat and so I went off the vegetarian diet. Maybe I had
turned the corner with this strange illness that had plagued me for
years. My body seemed to know exactly what it needed to provide for
this baby growing inside of me. My second birthing experience was
nothing like the first. I delivered Luca without one single
complication. He was perfect and I was beyond excited to have this
baby boy complete our family. I went home with Luca the day after his
birth and I felt so good that just two days after he was born, we
hosted a birthday party at our house for my Dad. Little did I know
that just a few short weeks later my world would come to a crashing
halt when once again my health would take a turn for the worse again.
All of my previous symptoms came back but this time they showed no
mercy. I lost the forty-seven pounds I had gained during my pregnancy
in just three weeks. The experts say that the healthy way to lose the
“baby weight” is to give your body the same amount of time it
took to put the weight on (in my case eight and a half months). I
knew that taking care of a newborn and a five year old all while
being so ill was going to be difficult. What I didn't know was the
amount of stress I put on myself trying to mask the pain I was in
constantly from everyone, especially my boys was ultimately making my
illness even worse. I had already been to countless doctors trying to
find out what was wrong with me. When a doctor looks at you and tells
you that there is nothing that he can find that would explain the
chronic symptoms you have been having (at this point for four years)
you start to believe that it is in your head. I knew I wasn't
imagining the bloating, nausea, body aches and migraines. I knew that
I was going to have to be the one that finds the answers to my own
health problems. It turned out to be a much longer and difficult road
than I would have ever imagined.
Days,
months and years passed. I found myself trying harder and harder to
hide my chronic pain. Mom's aren’t supposed to be sick...at least
my Mom wasn't. Mom's are supposed to be active and participate in
every single detail of their children's lives, not be stuck in the
bathroom or having to lay in a dark room for hours at a time. I was
really good about hiding how awful I felt from my boys while they
were young but as they got older, it got increasing hard to come up
with plausible excuses why we would have to leave somewhere fun
because I wasn't feeling good or, why I couldn't leave the house at
all. I was going to have to admit to them that I was defective. There
is nothing more shattering to a mother's soul than realizing that she
is never going to be the mommy she always wanted to be. It was time
to level with my boys and tell them the truth. Up and until I had
this conversation with them, I had never let myself get upset or cry
about my continued health challenges in their presence. It was of the
utmost importance that I not allow them to see me at my weakest
moments. I wanted to appear strong both mentally and physically for
them because that is what I grew up thinking moms were supposed to
do.
My
boys were nine and fifteen when I finally couldn't hide anymore. I
sat them down one at a time because the age difference (six years)
and explained to each one what was really going on. For Luca, the
youngest, I told him “Mommy was sick and didn't know why”. My
stomach seems to be upset all the time and I need to eat a special
diet (gluten free) to see if it helps. I can't eat the same foods
everybody else does but that's okay. I sometimes have headaches that
take a long time for them to go away and that's why I can't get out
of bed sometimes. Even when I don't feel good, I still love you to
pieces. Me being sick has nothing to you and is in no way your fault.
Then I started to cry. Not a big ugly cry but a soft trickle of tears
running down my cheeks. Luca looked at me and said “I know you
don't feel good sometimes but then you feel better and you always
take care of me no matter what...so it's okay”. Much to my
surprise, Luca already knew that I was sometimes
sick
(even though in reality I was sick almost everyday). I realized that
I had not hidden my chronic illness from him as well as I had
thought. When I heard the simple reassuring words “it's okay”
from my young son a small portion of my “mommy guilt” ridden
heart healed.
For
Ian, the oldest, I decided to just ask him if he knew that I was
suffering from a chronic illness. I mean, if my nine year old already
knew then it would be an insult to Ian's intelligence to think he
didn't have a clue to my constant battles with my body. He told me
that not only did he know but that he wanted to finish high school
and pick a major in college that would allow him to find a cure for
my undiagnosed illness. The look in his eyes made me me cry and this
time it was a big ol' ugly cry. The look was not of sympathy or pity
but of sheer determination to help his Mom who had been ill for as
long as he could remember. It was at this moment that I realized that
being chronically ill was a subject that was no longer taboo to talk
about. I was going to be honest with them from that moment forward.
Honesty would be a part of my healing. It had been so important to me
that I hide my suffering that I prevented my boys from being part of
my healing. In my quest to be as strong as my Mom and my Grandmother
seemed to be, I had really caused myself to become physically and
mentally weaker from the stress of disguising my health challenges
for so many years.
Three
years after the conversations with my boys, I was finally diagnosed
in June of 2013, with a condition called gastroparesis. The very
short definition is that my stomach does not digest food properly.
Gastroparesis is a side affect of another condition called
dysautonomia. Dysautonomia refers to a disorder of the autonomic
nervous system. Some of the automatic functions of my body are
dysfunctional. As the name implies, the autonomic nervous system
carries out functions without conscious thought. The autonomic
nervous system is responsible for heart rhythm, sweat glands, body
temperature, involuntary muscle movements, digestion and much more.
Although I do not have problems with my heart or muscle movements, I
do have problems with my sweat glands, body temperature and most
troubling my digestion. I have to eat a very specific diet (no wheat,
barley, oats, rye, dairy, eggs, nightshades or shellfish). If I eat
anything that my intestines don't approve of, my body begins to pick
a fight with itself and the result is an autoimmune reaction. I can
feel like I have the flu with body aches and pains, headaches,
stomach distress and total exhaustion. It took seventeen years of
doctor visits, dozens of tests (blood, urine, upper GI, lower GI,
endoscopies, colonoscopies) and sheer determination to finally get an
answer. I am very familiar with the saying “Careful what you wish
for”. I finally got the answers that I had spent almost two decades
searching for. Finding out that my illness can never be cured and
only managed was almost too much to bear. As of this present date
there is no cure for gastroparesis. My whole adult life I have been
in control of everything but my health and now with the certainty
that I will never be able to force my body into curing itself was
devastating. I am a fixer and I cannot fix me.
Here
I am, six months after my diagnosis and still in a state of shock. I
have been told by my therapist that I am going through the “stages
of grief” and must allow myself this time to except my diagnosis.
As I said before, I am a fixer so my brain will not give up on my
body. I am still stuck in the first
stage...denial. No matter what stage of grief I am in, I am still a mom to two
boys. As any mother knows, parenting is a 24/7 job and it waits for
no one whether you have an illness or not. As I sit to write this, I think about my
seventy-six year old mother-in-law. One
day she is decorating her house for the arrival of her children and
grand-babies. The
next day she went to have a routine colonoscopy and was diagnosed
with colon cancer. She had been in pain for months but wanted to get
through Thanksgiving and prepare for Christmas. It was so important
to her that her house was ready for her family that she ignored her
constant discomfort. It doesn't matter how old you are, once a
mother, always a mother.
Now that I know my boys understand why I may not feel
well, the pressure to keep it a secret has almost completely disappeared. They helped me to realize that my illness is a part of me but
it is not who I am. I also learned that I was
not as clever as I thought when it came to hiding my ongoing problems
from them. My boys are smarter and more perceptive than I
gave them credit for. When I was open and honest about my chronic
illness, my children accepted me with loving arms. Part
of the management of my illness is finding ways to keep a positive
outlook every single day. Even when I can't get out of bed until
lunch time, I still feel blessed to have the strength to make it
through another day. On the days I feel good, I try to make the most
of my time. You only get one life and I choose to go to bed praying
that when I wake up, it is going to be a good day. Sometimes my
prayers are answered and sometimes they are not. I may not be Carol Brady but my boys think that I am their perfect mother and that is all I ever
wanted to be.
