I Love Gabriel Because...

...he's my angel

...he's everything I am

...he makes me feel loved, needed and important

...his love is pure

...he changed me

...he is my own...

i love Gabriel because... I don't need to have a reason to love him.
I just do. 

there are countless reasons why I love Gabriel. I can go on and on and still won't find everything I've thought of, said and written enough to describe how I feel for him. 

I love him from the depths of my heart.

I love him beyond words, beyond feelings and beyond everything else. 

Gabriel is my special child...and my only child. He has given me a unique and extraordinary experience called special motherhood. It is unlike any other - because it is special. Unique. Noteworthy. Challenging. 

Gabriel is the only person in this world who can change me. He is also the only one capable of making me discover the length of patience I never knew I had. 

Gabriel can make me feel everything - 

love and hate, 

hope and despair, 

calmness and anger, 

anticipation and disappointment, 

strength and exhaustion, 

excitement and discouragement... 

...the list goes on...

It's amazing how much feelings and emotions a person is capable of. 

Having a special child requires strength - a great amount of it. It is something that I'm trying to develop within me. It can sometimes be distracting to endure the stares, the questions and the odd looks on people's faces every time they see a special child. 

Going out can be very challenging and it really does require a great deal of courage and strength, both physically and emotionally. 

Yes, I do have questions. It happens a lot. Up to now, I'm still asking "why?" ... there are countless questions that need to be answered and for someone like me, just "letting it be" seems to be not enough. 

At this point, I'm no longer asking for comfort. 
I just want Gabriel to be accepted and to be loved.

I also want to be understood and to be around people who are kind and sincere.

I am trying my best to be strong. And honestly, I'm quite amazed at how far I've already gone. 

What "Special" Means

Constant Reminders... (for whatever they're worth)

Credits to photo owners & authors of these quotes.

Not All Angels Have Wings... Some Have Wheelchairs

Every time I see a special child, something in my mind pushes me to approach the child and just say "hi" and if I can, to meet the parents. I'm always drawn to them for a lot of reasons. Maybe it's my therapy - my own way of helping myself see that I am not alone and that there are other moms out there who are with me in this journey.

Joyce 

Some time in 2009, during one of our visits to the neurologist, I met Joyce. She was 13 years old at that time. She has cerebral palsy. Sitting on a wheelchair and accompanied by her family, she was also there for her regular visit to the neurologist. From her involuntary movements and slight muscular spasticity, I can tell that she has athetoid CP. Since we were seated in the same corner of the reception area, I made the move to talk to them. Being a certified "ma-chika", it wasn't hard for me at all to ask about Joyce and to introduce Gabriel to them as well. I was so certain that they would oblige because they all looked so warm and pleasant. 

Joyce's family is so supportive of her and I can see that she is well taken care of. They even teach her how to walk even with maximum support while waiting for their turn to walk into the clinic. Every shaky and uncoordinated step that Joyce made brought smiles to their faces, it's as if something is telling them that nothing is impossible. I can also remember what her father told me which made me cry so much right in front of them. "They were entrusted to us because God knows that we will take good care of them. They are not supposed to be in the hands of bad and neglectful parents". 

And then I cried... in front of them. I just couldn't help it.

Another Grand-Slam dramatic performance by me in front of people I just met.

I hate myself for being such a cry-mama.

Yohan

I met Yohan about 3 years ago. He is the only son of my husband's friend from work. He was 2 or 3 years old when I first met him. His dad brought him to our house so he can meet our Gabriel. Yohan has the face of an angel. His smiles were so contagious, such a happy baby. Yohan, just like Joyce, has cerebral palsy. The only difference is that Yohan, in my impression, seems to have Cerebral Palsy Spastic Quadriplegia. 

Yohan is such a cute little boy who smiles a lot. He also loves the outdoors and hates sitting in a stroller. He was tube-fed and was also on anti-seizure medications. Talking to his parents is much like "comparing notes" on how to properly administer medications - things like that. Conversations go around on topics such as how we're handling doctor's advice concerning seizure control and how to prevent secondary complications. 

Aside from his big smile and innocent look, there is one thing I remember so well about Yohan...

As if on cue, Yohan cries every time this song is sung to him; "Always keep a little pray'r in your pocket, and you're sure to see the light. Soon there'll be joy and happiness, and your little world will be brighter... Don't cry little one..." 

It's as if he understands and feels the sadness of the song.


Pico

Pico is an 11-year old boy my husband and I recently met in a mall. We were walking along a toy store when we saw this young boy sitting on his wheelchair, complete with head support. His soft features were somewhat similar to that of Gabriel's - wide eyes, cute nose, black hair, long limbs. Perhaps that was what drew us to him. We saw Gabriel in him. 

There was also something really special about Pico - his charm? charisma? I can't explain. The sight of him was enough to make my heart melt. He looked so calm and gentle and fragile, he looked like an angel and I just wanted to hug him. 

Our intention was to simply ask about his mobility chair since we knew that eventually, Gabriel might need a similar product. We ended up having quite a long conversation with his parents who entertained our questions and shared snippets of Pico's daily routine with us. Pico's parents were so insightful and generous enough to give us advise. They even shared some personal details to us... they never treated us as strangers. 

Their advise was; we should not be afraid to have another child. In fact, we should start thinking about having one. 

So,they actually encouraged us to have another child. (Honestly, at this point, I'm not brave enough to decide on that)

Pico is their eldest. At some point, they also had second thoughts about having another child because of Pico's condition. Then finally came the decision to have that second child. It took them 9 years. So aside from Pico, they have another 2-year old son, running around the mall and is perfectly healthy and normal. Pico and his brother are 9 years apart. The way I see them, they are such an inspiring family and I can feel that they are good people, too.

I just wish I have the same courage.

Easier said than done...

Like my Gabriel, Joyce, Yohan and Pico are also fighters, blessings and angels rolled into one. They are special... and their ability to love is boundless. Each of them had been gifted with a heart that is so pure - incapable of inflicting negativity in this world.

Looking through their eyes, there is nothing but pure innocence and genuine love. And even though, I have a handful of questions and a pocket full of thoughts addressed to God, life goes on for us and our little angel. We will take care of him.

I know it's cliche but I'll write it anyway. "I love you, Gabriel...to the moon and back, a million times over, and more".

My Battlefield and Fragments of Thoughts

In my efforts to care for and protect my Gabriel, hospitals have become my battlefields. Every time a doctor gives us a particular input, diagnosis, prognosis, medical opinion or advice, I've made it a point to do my own research. Not that I know better than them, but it's more of like my own way of doing something to make sure that I'm always part of everything. Stage mother? "Pakyalamera"? Close. But not quite. After all, what kind of parent would not want to have the safest and gentlest management for their sick child? It's the least I could do to help my son feel better. After all, I'm the one who's beside him day in and day out. 

Yes, doctors offer their expertise; but I offer my whole life.

Doctors examine him for a few minutes; but I look after him 7 days a week, 24 hours a day.

At some point, a doctor recommended NGT tube for my son. And then "this and that" happened. To cut the long battle short, I didn't allow it to happen and insisted that I can feed him by mouth. Fast forward to present, oh yes, I feed him by mouth, he gets to enjoy his occasional dose of ice cream, hot fudge sundae, fruit shakes and mashed potatoes. He can taste his food and I get to enjoy the simple happiness of seeing and knowing that my son can experience the joy of eating - a taste of normalcy in the midst of his delicate condition.

I don't want to think of what might have been if I had allowed the doctors to put that NGT on him. I'm just thankful it didn't happen. I'm thankful I said "no"

Nasogastric Intubation

I know that doctors know best and I have high respect towards them. I have faith in Filipino doctors. Probably there are a few out there who never heard of the word "compassion" ...but who cares about them. I'm just glad that I found good ones for my son. 

Here's what I believe in... every patient deserves attention - paying or non-paying - because the last time I heard, doctors are under oath to care for the sick. 

For moms out there with special children, what we are going through is difficult. Indeed, frustrating at some point, but it's comforting to know that we are not helpless. We can do something to make a difference in a special child's life. 

It's not easy to listen to doctor's explanations about certain conditions, the prognoses and their medical managements. But don't be afraid to ask. It's even fine to disagree as long as it does not put the child's life at risk.  Don't just accept it. Do something. 

Never lose the inclination to get to know the depths and details of your child's condition. I know it's frustrating and heartbreaking to know the truth - every bit of it, but it's much better than being clueless about what to expect. 

Acceptance does not really happen. The pain does not go away either. And it doesn't get easier over time. We just get used to it. 

Time will pass but the questions will remain. There is no such thing as plain acceptance. At least, none for me.

"Getting used to it." It's a sign that we become stronger and more tolerant over time, and at some point, we realize that our hearts just grow. We discover that length of patience we never knew we're capable of giving. We become more and more capable of loving our child regardless of what he or she is. We become more capable of loving unconditionally.

I, for instance, wake up every day discovering and feeling that I love Gabriel even more than the day before.

One thing I've learned through the 7 years that I've been taking care of Gabriel is to become pro-active in his treatments. If the doctor says something, I research about it. I read blogs, online articles and even search for an online forum about the subject. It helps a lot to read what other moms out there have to say about their own experiences in caring for their child with special needs. It makes me feel less alone. These moms whose articles, blogs and comments I read online, empower me and give me hope. 

My son's neurologist may sometimes feel as if I'm always trying to get in the way of her thinking; and may, at times, feel annoyed about the fact that I always ask "why?", and constantly going into the depths of my son's condition to the point of being somewhat demanding. But it's my son's life we're talking about. And I feel that it is perfectly okay to ask and even consult about something I read or observed (especially if it's relevant to my son's case).

She has gotten used to it.

Yes, I'm a "pakyalamera" mom and every check up / hospital visit is a battle for me... I will always have inputs. I will always have questions. And if I don't feel right about the doctor's decision, I will never (ever) have second thoughts about expressing it. I always have to know "why"... I'm not changing that.

*** Some of the images used in this blog post were taken from the internet. Credits to photo owners.

Chronicles of a Grand Slam Best Actress

Being a mom of a special child is a challenging role to play. I have learned to master the art of "dedma" (ignoring the world) and as of now, I'm still trying to learn how to numb my feelings and tame my emotions. Other moms can go on talking about how their child's first day of school was, and I would only listen, smile and pretend that my heart is not breaking over the fact that I cannot share a similar experience. So what if I'm missing on a lot of things as a mom. I'm still a mom - I have a child.

Taken in 2006 - Dubai, UAE

My situation also allowed me to discover the inner strength and patience that I never knew existed in me. My son had been in the Pediatric ICU twice, had been confined in the hospital for God-knows-how-many-times already, had been rushed to the E.R. for God-knows-how-many-times already, had gone through a series of diagnostic tests (and all sorts of tests known and unknown to man) for God-knows-how-many-times already, had too many blood tests, urine tests, drug assays, eye test, ear tests, child psychology test etc., had been operated at 2 months for inguinal hernia, had his leg put on traction and cast when he was 3 y/o due to complete leg fracture, had widespread skin allergies, suffered from 12 (or 14, or even more) seizures in a single day at some point, had asthma attacks, metabolic acidosis, drug-induced hepatitis, dermatitis, asthma, allergic rhinitis, I'm not sure if I missed anything. MRI, CT Scan, X-Rays -I've seen them all. 

At present, his right leg is on cast. I don't know why or how his distal femur got fractured again. Is it because of the recent strong seizure he had that caused strong muscular pull / contraction? This is the second incident already. The first time (4 years ago), he also had a seizure and the next thing we knew, there was a complete fracture with displacement on the distal 3rd of his left femur. So this feels like some sort of "deja vu"... only this time, it's the right thigh that's affected. 

Gabriel's right leg in a cast - 3/1/2014

        

(Left) Gabriel's left leg on weight traction to align his left femur - 2009                 

(Right) Gabriel's left leg in a cast after 2 weeks of leg traction - 2009.       

             All set to go home after 2 weeks of hospital stay due to left distal femoral fracture - 2009                           

The pediatric resident told us that he may have brittle bones. But now I'm quite definite that the strong seizures are what's causing his distal femurs to be fractured. Could be because of the sudden strong pull /contraction of thigh muscles caused by the tonic phase of his generalized seizures. During this phase of his seizure, he is always very stiff. Doctors say that this is unlikely, but how many times have I already proven them wrong with their judgement and opinions? Being the primary caregiver of my son, I know and I feel. That is why it upsets me every time I encounter incompetent doctors (particularly residents) who are only good at talking.

Indeed, raising a special child requires resilience - the circumstances can bend, shake and sway me, but I should not break - not by any means.

Some mothers would drive their kids to school in the morning, or take them out to play in the park. I can only watch my son sleep and wait for him to wake up and hope that he will wake up happy, without a seizure episode (or breakthrough seizure)...every single day. (Because he usually have seizures when he's asleep or about to wake up or upon waking up). No one can imagine the fear and worry I have to endure every single morning, or whenever he sleeps during the day. Gabriel waking up in the morning without a seizure and smiling is a blessing already. It's the closest thing I know to winning big time in the lottery.

Still, regardless of how strong and resilient I've become through the years, there comes a time when I find myself on the verge of breaking down. I would always remind myself that "it will all get better in time." (Konting tiis pa)

Credits to the photo owner & author of this quote

It will all get better in time.

Anti-Seizure Medications: A Drug Story

My only son, Gabriel, is on multiple drug therapy to treat his seizure disorder. By stating multiple drug therapy, I'm not talking about just 2 or 3 medications. I'm talking about 4 anti-seizure medications and 2 supplements that he has to take every single day. It's like a meal plan but in this case, i like to call it "Gamot Plan" (Medicine Plan). Here's how this crazy thing goes;

Morning

Phenobarbital 1 tab, Trileptal 5ml & Zonegran 1 tab

PLUS Folart 1 ml and Vitamin B6 (Pyridoxine) 100 mg

Lunch

Phenobarbital 1 1/4 tab , Zonegran 1/2 tab

Before Bedtime

Phenobarbital 2 tabs, Trileptal 6 ml, Rivotril 1/2 tab & 

Zonegran 1 tab

Being the primary caregiver of my little angel, I have to administer all these drugs to him every single day - after his meals. So you can just imagine what a typical day for me is like. It revolves around these drugs because that is what keeps my son alive. If I miss one, you wouldn't want to hear the end of it; because he has to maintain a certain drug level in his blood to keep him stable. 

When he was younger, I bring him to the laboratory every now and then so that the hospital divas can extract blood from him for his drug assay. Drug assay is a laboratory procedure which is primarily done to measure the level of anti-seizure drug that is in his blood - One assay for every anti-seizure drug. Because there is a need to maintain a certain blood drug level, abrupt withdrawal of any anti-seizure drug means trouble - a big one. 

Note: Not all anti-seizure drugs require an assay. Examples of anti-seizure drugs that can be subjected to blood assay are Phenobarbital and Dilantin. 

Gabriel used to take Dilantin years back but it caused him to have toxic liver. His liver function test turned out so bad and he was then diagnosed with Drug-Induced Hepatitis after only a year of taking Dilantin. His daily dose of Dilantin was then gradually tapered down and was replaced with a new anti-seizure drug. That is when I first met our new friend, Zonegran and then later on, Trileptal.


Gabriel has been taking anti-seizure medications since he was 4.5 months. One set of drugs after another... there was always this quest for the most effective drug combination. 

Identifying an anti-seizure drug is just half the battle. The other half is in establishing the right combination, experts call it adjunctive drug therapy. This is where the real challenge lies. 

Establishing an effective drug combination is much like finding a needle in a haystack. I swear it is much easier to convince the Iraqis to sign up a peace agreement with the U.S. than to come up with an anti-seizure drug combination that will work 100% for intractable or hard-to-control seizures. 

Watching my child have seizures every now and then during the course of the day (and night) while waiting for him to respond to the medications or to achieve the right and stable level of drug in his blood is heartbreaking. It's like seeing your own child hanging by a thread...on a cliff. 

His first set of lifeline were Phenobarbital and Tegretol. 

Phenobarbital

Then he was shifted to Phenobarbital, Tegretol and Topamax (?).

After a HUGE HOSPITAL BILL that brought cheers to Makati Medical Center and its doctors...

Then came Phenobarbital, Dilantin and Topamax. (This combination comes with free Drug-Induced Hepatitis, Gum Hyperplasia, and Metabolic Acidosis)

Dilantin

The side effects of these drugs caused us to spend a 2-Week Hospital Arrest at the University of Perpetual Help System - DALTA. The pain, fear and frustrations that my husband and I had to endure are, on the average, as long as the name of the hospital.

Then came Phenobarbital, Dilantin, Topamax and Keppra.

Followed by Phenobarbital and Keppra. MAJOR FAIL!

Then Phenobarbital and Zonegran. (They had a complicated relationship. A third party might spice things up)

Soon enough, it became Phenobarbital, Zonegran and Trileptal. 
(But it still wasn't enough)

And finally, a phenomenal mix of...

                    Phenobarbital, Zonegran, Trileptal and Rivotril.

They come with a back up, of course - Folart and Vitamin B6

(A winning combination - "quite" effective but costs a fortune)

and I'm hoping that this combo will be the last, the finale, the culmination, of this entire drug hullabaloo.

And the award goes to... Phenobarbital. I can't believe in the staying power of this drug through it all. From one hospital trip to another, it has always been there - unmoved, untamed by far more expensive drugs, never changed, never eliminated - not even once. It's the last one standing. 

Pretty soon, I'm positive that you, Magic 4 + 2, will all leave my son (and our pockets) alone, especially you, Phenobarbital. You are a friend that i will never, ever, miss.

Honestly, I can't wait for that day to happen.