Being a Mom: Making it Work (for Moms with Epilepsy)

A booklet on “How women with epilepsy are looking after their health, and raising informed kids.”

To my ever dearest Gavin,

Hoping you and I can talk soon to make you understand Mommy’s “condition.”  When you see me having a seizure,  you will simply say, “Mommy, you had a seizure,” complete with a hug and kiss when I wake up.

 

 

This booklet struck my mind, heart, and soul.

This booklet struck my mind, heart, and soul.

 

GAVIN WON’T EAT WHAT WE WON’T EAT!

When I got home last night, our manang, reported to me, “May isa tayong Gerber dyan.  Ayaw kainin ni Gavin.  Sinusuka nya.”  (We have a stock of Gerber that Gavin doesn’t like to eat.  He just spits it out).  Strange, I thought.  Gavin has been eating and liking different Gerber semi-solids:  from fruits (banana, apple, applesauce and apple prune) to vegetables (carrots and squash).I took a look at the bottle of Gerberthat Gavin didn’t like.  It was broccoli.  “Oh no,” I thought.  “Gavin doesn’t like eating vegetables? It’s very healthy,” completely forgetting that he likes carrots and squash. 

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Photo from http://truelight.me/

So this morning, I wanted to see exactly how Gavin reacts to Gerber brocoli.  I first took a sniff of the semi-solid… and, boy, did it really smell like a plant.  I then remembered  Gerber’s very interactive Facebook app that shows how these semi-solids are made from farm to bottle a-la Plants vs. Zombies.  Well, I then thought, must be really natural.

We gave a small amount to Gavin and this time, he didn’t spit it out, thank goodness, but his face was twisted with grimace.  He seemed to be saying, “Enough!” with the way he banged his hand on his stroller.

No, I thought.  He has to learn how to like the taste of broccoli in all its natural glory.  I took a taste of the semi-solid food and, boy again, it sure tasted like a plant.  I fought hard, as in really hard, not to show my disgust as well.  I guess, that’s broccoli in all its natural glory, sans condiments, meat, etc?

I showed Gavin my teaspoon with a small amount of Gerber, and said, “Gavin, look!”  when I swallowed it.  When he saw me taste it, he took a little bit more, still with disgust on his adorable face.  I took another, and this time, made the “yum, yum,” sound.  Gavin took a few more again, his facial expression never changing.   Since I couldn’t take in more, we had to stop feeding him.  When he feeds again later, I will eat with him.

That was when I realized that Gavin will not eat what we, hubby and I, will not eat.  We have to taste and eat his food if he doesn’t like it.  Hopefully, Gavin will take the cue from us. It would be unfair for him if we force him to eat something we will not eat ourselves.  I will not lie and pretend to taste his food (I was soooo tempted to do that earlier).  It’s not enough that I tell him, “but, it’s Lolo’s favourite food and I like that, too!” to make him eat.  If he wants to taste something but I will not taste it, something spicy perhaps, I will encourage him with, “Go ahead.  You may try.”

As I sat down for my own breakfast, I forced myself to eat okra that was also served (my mind was not set on eating vegetables for brekkie).    I was only able to eat a few slices even if it was served with meat and condiments.  If Gavin were to eat those, he will only eat the amount I can take.  If he wants to eat more, better!  But until then, I will to learn to eat and like all kinds of vegetables.  Same to you too, hun!

Meanwhile, I will also try making some home-made baby food.  I will also eat it, too, of course.

Electricity in My Mind

“What do Napoleon Bonaparte,  Leonardo da Vinci, Alexander the Great, and I, Mary Ann Santos, have in common?”

This was my opening line for a public-speaking class back in college.  Before I said this, I flashed this photo (not the exact image) on an overhead projector which at that time, was used with an acetate (oh gosh, this is showing my age). The photo already elicited amused laughter from my classmates, more so when I said my killer opening line.

 

 

 

 

 

 

 

 

 

“We all have epilepsy,” I said.  The class became silent as I continued on with my speech.  I narrated when I was diagnosed, what happens during an attack, and how it has affected my life delivered in a light manner.  I remember ending my speech with something like, “Like these great men, I am living my life with flying colors even if I have epilepsy.”  I saw teary eyes from some girls and soft smiles from a few boys.

So what is this so-called “epilepsy” that these great men and I have?  WebMD explains it as “Epilepsy is a disorder of the brain’s electrical system. Abnormal electrical impulses cause brief changes in movement, behavior, sensation, or awareness. These interruptions, known as seizures, may last from a few seconds to a few minutes. People who have had two or more seizures are considered to have epilepsy.”  There are different types of seizures, and in my case, it is the generalized tonic clonic seizure.  These “usually begin with a stiffening of the arms and legs, following by jerking motions. The convulsions last up to 3 minutes, after which the person may be tired and confused. This type of seizure involves abnormal electrical activity involving both sides of the brain.”  I am not sure if all patients who have this type of seizure are unconscious because I am during mine.

I had my first seizure when I was 16 years old.  It was night time and we were already asleep when my mother felt some movement on my side of the bed.  Imagine her great shock when she saw me unconscious and convulsing.   She asked help from our neighbors to bring me to the hospital.    I woke up while we were in the cab without knowing what was happening, but I found myself crying.  My mom soothed me but I quickly fell back to sleep.

I am epileptic for over 19 years now and I have been under medication ever since.  My family and I have been through a phase of asking “why” or “why me” (my epilepsy was diagnosed with no known cause or  idiopathic generalized). I have been through a number of neurologists, undertook more tests (EEG, MRI and lab tests), and had unmanaged seizures at the start.  It has been very depressing at times but I continued on.  When my seizures were managed, meaning I had lesser convulsions for a number of months (the longest I had seizure free was 5 years), everything went back to normal, with just daily medications and regular check-ups with my neurologist.

In spite of my epilepsy, I finished my studies, worked in local and multi-national companies, attended strenuous gym activities and was able to party all night long.  Now, I have even passed another milestone:  I got pregnant and bore a healthy baby boy with my “condition.”  I was able to exclusively breastfeed him for two-and-a half months and mixed feed him until he was 6 months old. With that, I am making a great mark in my own history like those great men.

I am not aware of any local communities for epileptics.  I just recently found out about Team Epilepsy, a global community brought together to help raise awareness and advance medicine for epilepsy. Though they are not present yet in the Philippines, I was encouraged to be part of the “team” “by sharing their posts and by telling your friends and family about us and our fight against epilepsy.”  I hope through my blog, I can be more active in the team, and also reach out to local communities.”

Next scheduled posts:

Fighting the Stigma

Finding Mr. Right Doctor

Pregnancy and Breastfeeding with Epilepsy

Decoding Today’s Rockstars

Want to be rich and famous like Bill Gates and Mark Z., or be cool like a rockstar or basketball player just with your keyboard and creativity?  Then be a computer programmer!

What?   Rich and famous like Bill Gates and Mark Z, it is understandable, but cool like a rockstar or a basketball player with computer programming???

Yep, computer programming is what the video, entitled “What They Don’t Teach in School,” with a caption “Learn about a new “superpower” that isn’t being taught in 90% of US schools”  is talking about.  It had Bill Gates and Mark Z talk about how simple they started out with computer programming.  “Playing tic-tac-toe,” or wanting “to make something fun for myself and for my sisters.”  Chris Bosh, of the Miami Heat basketball team, was also into computer programming in high school.  will.i.am is learning how to do computer programming which is now called “coding.”  The videos even show coders’ offices look like a playground, where they have a music studio, laundry, chef and can also play table tennis.

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The video is produced by Code.org, “a non-profit foundation dedicated to growing computer programming education.”  Code.org “believe computer programming should be part of the core curriculum in education, alongside other science, technology, engineering, and mathematics (STEM) courses, such as biology, physics, chemistry and algebra.” Some schools in New York will already get a “comprehensive computer science and software engineering curriculum” as  Mayor Michael Bloomberg, who is also learning how to code, has announced.

But coding is more than being cool, hip, rich, famous as the video further explains.  Computer programming or coding can do a lot of great things.  It teaches you how to think as the great Steve Jobs explained.  With computer programming, you just start with a simple idea, just add a little something to it, and share it with a press of a button.  A simple software “is really about humanity,” and you if want to change the world, “computer programming is an empowering skill to learn.”

The long video ends with Drew Houston, founder of Dropbox saying that computer programming is “the closet thing we have to a super power,” and will.i.am simply shrugging, “Great coders are today’s rockstars.  That’s it.”

Indeed, we can do a lot of good things with technology.  I’m eager to learn how to code myself from free website tutorials.  I also can’t wait for my little boy to become a coder, share his idea with millions of people, and become cool as a rockstar.

Watch full video here http://www.youtube.com/watch?v=dU1xS07N-FA

Learn more about Code.org or try a sample coding at http://www.code.org.

Maps and Baby G on Umagang Kay Ganda

Last January 24, I sent a Direct Message to the Official Fan Page of ABS-CBN’s Umagang Kay Ganda.

Hi, UKG peeps!

Just wanted to share with you my fondness on your show and why.

I gave birth last July 6 to my first baby. His name is Gavin. Being a newborn and since I was also breastfeeding, I quickly forgot to sleep. I would wake up very drowsy to breastfeed him and for me not to fall asleep, I would turn on the TV and press 10, our Channel for ABS-CBN. Our breastfeeding starts at 4 or 5 so I would really catch the start of your show.

This is a major one for me because when my son wasn’t born yet, I would wake up at 8am. If I wake up at 6am, I immediately go to sleep. But with my Gavin, it was not possible since he possessed my time. When he falls asleep, I had a difficult time going back to sleep. I wasn’t supposed to fall asleep and be alert while nursing him so how could I sleep again? I just end up watching your show, the FULL show.

Just wanted to let you know that whenever I recall my the hard core breastfeeding days with my Gavin, UKG will be part of my memory. For me, it was truly an Umagang Kay Ganda.

“Basta’t tayo’y magkasama, laging may umagang kay ganda…”

Thank you from the bottom of my heart.

PS. Picture shows me cradling my Gavin after breastfeeding.

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And to my surprise, I got the following message the next day:

“This is so heartwarming, kapamilya! Thank you for making us part of your mornings as well as Baby Gavin’s life! We’ll print this out and share this with the staff! They’ll be thrilled to know about this!”

“This is our little gift to you and Gavin.”

It was a photo of the UKG cast except, Ka Tonying, gathered together for a photo showing my letter to them and greeting us with “We love you, Maps and Gavin!”

UKG

Why are you moving in? Why not get married?

This post first appeared in Ana Santos’ website, SexandSensibilities.com last September 2011.  Edited by Ana.  http://bit.ly/Yh7CvJ

Why are you moving in? Why not get married?

By Mary Ann Santos

Last February, my partner and I decided to affirm our commitment to each by moving in together.  We uprooted ourselves from our respective parents’ homes and quietly started our life together without the usual fanfare of a wedding ceremony.

In a country where there are only two reasons acceptable for living together (one being a fast approaching due date), a childless couple like us choosing to live under one roof raised a lot of eyebrows and elicited a lot of comments and unsolicited advice.

My close circle of friends would tell me, “Get married na, we haven’t been to a wedding for the longest time!”  Uhm, I’m not going to get married for you.  I am going to get married according our plans.

“Buti pumayag ang parents mo,” is another common reaction. After witnessing several marriages crumble in the family, my parents figured out that getting married does not cement “forever” in a relationship.

From the doubtful, I would hear, “Is that an easy way out?”  Nope, not at all. We consider this as the start of our life together.

The horny ones would insinuate with a knowing look, “Wow, so now, you’ll have a lot of sexytime together.”   It’s funny that married couples get to have a lot of this so-called “sexytime”, too, but I hardly hear this kind of comment when couples announce their engagement.

One person even concluded that our decision to live together could be attributed to our horoscopes:  I am a Leo, born under the Snake sign, while my partner is an Aquarius, born in the Year of the Monkey.  According to our stars, I was the one making all the decisions, he said, so I should then decide to marry my partner.  The decision to live together isn’t a power play between our moon and our stars, but a mutual choice we made.

And others would simply just say, “Get married na kasi!” because well… come to think of it, I actually don’t know their reasons anymore.

There was also advice that took on the voice of concern, but was nonetheless, unsolicited, “What about your child?” I would be asked. Our child will carry my partner’s last name and we will take care of him or her with our whole heart and soul just like any parent.   

My partner, on his end, was told:   “Just go and marry her.”  Related to that is what has become my most favorite comment, only because I would hear it so often, “You should get married, especially since you’re the girl.” I really don’t consider myself on the losing end; I am with the man I love!

It never seemed to cross people’s minds that ours is a mutual decision to begin a life together.   But unlike other couples who made a similar choice, but marked it with an engagement, we never got any advice on how to stay strong in our relationship or how to weather any storm.

We both have chosen a path less travelled by others, but it is a path that we feel will strengthen our relationship as more than boyfriend-girlfriend.  And when we do tie the knot, it will be again another mutual decision between us and not according to the sun and moon or friends who just want to attend a wedding.  It will simply be yet another step further in our relationship.

Mary Ann (a.k.a Maps) attended an all-girl Catholic school for her elementary and high school education and got her university degree in a school closely associated with an ultra conservative religious organization.   An NBSB member (No Boyfriend Since Birth) until she met her current partner, her concept of marriage is a formal union of souls.  She also believes that this union can be formalized by living together.

My partner and I.  We moved in together on our 2nd year anniversary.

My partner and I. We moved in together on our 2nd year anniversary.

I Want the Worst Thing That Can Happen to Him

“I Want the Worst Thing That Can Happen to Him”

 

When I heard Jessica Bennett utter these words matter-of-factly for the man who slapped her 19-month old son, I said to myself, “She is really a mom.”  In an interview with CNN’s Wolf Blitzer, Jessica was asked if it was enough for her that the man who slapped her son has been fired, charged with assault,  and could get a year in prison sentence if guilty.  “No.  No, its not,” she replied.  When further probed “what do you want,”  Jessica paused, breathed heavily before answering, “I don’t know.  I mean, I just want the worst punishment that he could get.  I want that.”

I cheered for Jessica for being so honest about her feelings.  Her son, Jonah, was slapped by 60-year old Joe Rickey Hundley aboard their flight to Atlanta last February 15.  He also called the boy, “f***king n***r” when Jessica couldn’t soothe Jonah as their plane started to descend.  She wanted the worst punishment for Hundley for physically and emotionally hurt her son.  I would want that, too, if someone treated my son that way.

In the same interview, Jessica also narrated she stood at the back of the plane with Jonah “for a good duration of the flight” after sensing Joe was annoyed with them.  She did not complain, and did not ask for another seat.  She just went back to her seat beside Hundley when the plane was descending.

I could understand Jessica in her decision to stand at the back of the plane.  She was afraid of any commotion Jonah might cause on their flight.  With the way she wanted to be left unnoticed, I am thinking she might be also afraid that people are judging her why she brought her 19-month old son along.

I felt people were judging me, too, when I changed my son’s nappies on a changing table in a mall’s toilet.  Though we are in a country where most people are baby-lovers, I was still afraid of people snickering about the smell of my son’s poop.  I was also wary of women judging me why I bring my son who was then 5-months old in a public place where he can poop anytime.  I wanted us to be left unnoticed.

We, mothers, know we are so quickly judged when our children do something  annoying to other people, and we are weakened by those thoughts. But we should feel empowered because we are taking care of our child that is not exactly a walk-in the-park.  So here’s a toast to mothers who want to protect their child from any kind of abuse but are afraid to be judged.

Jessica with her son, Jonah. Photo from http://www.dailymail.co.uk

Full video can be viewed here

http://writingshares.com/cnn-news-video-interview-with-mom-jessica-bennett-of-boy-who-was-slapped-on-plane-and-called-racial-epithet-by-joe-hundley/