Starting Over... with Brave New Hope

http://flyhighgabe.blogspot.com/

"...tell me the story about how the sun loved the moon so much, he died every night to let her breathe"

- credits to the one who wrote this quote

Starting over...

Yes. I've finally found the courage to start over.

Will open and share my new blog soon.

Follow me in my journey... 

Brave New Hope

This is a Late Post ... i wrote this blog last May 25, 2014 but for some reason, I failed to publish it. I saw it a few days back saved as a draft and my initial reaction was to not publish or post it anymore. It seemed so untimely... so inappropriate ... so irrelevant...  and so unreal.

Fast forward to present - I've decided to visit my blog site again just to see if there's still traffic to it. And yes, it still has visitors every now and then. It's not much but still, it's nice to know that some people had been on my site. And then I decided to finally post this May 25, 2014 blog after all (I wrote it while I was in our laundry station around 11am or around noon time perhaps). I don't exactly know what for... but then again, for whatever it's worth or for everything it's worth. Anything that's about Gabriel shouldn't be put to waste; anything about him must be made relevant and worthwhile. Gabriel is my Angel. For these reasons and more, I'm sharing this. It is the last blog I've written about my journey with Gabriel when he was still mine. 

------------ May 25, 2014 

Finally! After 2 months and 19 days, 2 surgery residents, 2 orthopedic surgeons, splinting and casting, several x-rays and 4 consultations (among others); Gabriel's long-leg cast was finally removed. I can't help but look back at the journey through this chapter in our angel's life and mine, as a mother. 

Another trial has been conquered. 

Another difficult chapter has been closed. 

After his cast removal, we went home - full of anticipation that happy days are here again. 

Then came a shocking surprise.

... a seizure attack, followed by another and another...and another... i can't keep track of everything anymore. We were shocked and dead-worried for Gabriel's fragile leg which is not yet completely healed. 

Through it all, I was just there, doing my role as a mother and making sure he's comfortable. And, protecting that precious leg which is still stiff, sore, swollen, and flaky-dry.

What now? 

I accepted the challenge and did what I had to do. I spent these difficult days taking care of our precious angel - administering his medicines, feeding him, watching over him, comforting him and trying my best to be strong in what seems to be like a shocking "finale" of this chapter. 

(It was indeed a shocking twist to what seemed like a good ending to a difficult chapter.) Bring it on!

And then I decided to do something which I hadn't done in quite a long time. I prayed.

But I won't elaborate on that. Moving on...

I don't know what went wrong but everything seems to be okay now. Finally. A lot of speculations, doubts and fears clouded my mind. But those weren't important anymore. Even the  Stress. Pressure. Tension. Exhaustion. Just like what my husband and I always do... just move on; and expect for brighter days ahead regardless of how bad we feel and how hurt we are. 

We have no other choice but to be hopeful. If not for hope, what else is there to hold on to? Nothing much.

And as for me, I'm doing my best to be strong. I don't want to break down and act like a desperate weakling. That won't help. I just need to be positive and to be strong - at all cost. I tried to hold on to that last ray of hope... and it worked. The storm has passed and happy days are here again.

And I wondered. Why can't things that are good just stay?

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. 

Burned Out! - How to Cope Up with the Growing Pressure a.k.a. Bitch-Mode

Reality check. I'm not getting any younger. In fact, I can already see and feel the signs of aging. 

Caring for a child with special needs becomes more and more challenging as the years go by. Gabriel's getting bigger and heavier just as I'm getting older. 

Perhaps this is one of the dilemmas of being a mom to a special child. It does not get easier over time. Instead, it gets more and more difficult. I have to be strong...not only for today but more importantly, for the days to come.

Five years ago, it was still very easy for me to carry Gabriel around. Transferring him was easy-peasy. However, as the years pass, I begin to ask myself; am I getting old and weak? Or, Gabriel just got bigger and heavier?

Every single day is filled with challenges and rewards. My everyday revolves around Gabriel's feeding time, medicine time, cleaning/bath time, therapy time, feeding time again, medicine time, TV time, nap time, feeding time, medicine time, cleaning time, bonding time, bed time... with play time somewhere in between. That's my everyday. It has become my routine.

Before I even know it...

Burned out! And so here it goes... my list on how to cope up with the stress and growing pressure of caring for a child with special needs a.k.a Burned Out 101:

1. Change of scenery - a walk in a park will do if it's not possible to travel to the beach

2. Time with friends - coffee time and gossip time

3. Sweet flicks and feel-good movies - with my husband and Gabriel, of course

4. Funny videos - Thank God for YouTube!

5. Punch pillows as hard as I can - I imagine myself punching at all the things that hurt and upset me

6. Stretching - it helps me in conditioning myself whenever I feel sluggish. It also helps relieve the tension in my body.

7. Sleep - because I need to hibernate from time to time

8. Read quotes on Twitter - it doesn't mean much but coming across tweets about women empowerment motivates and inspires me

9. Go to the mall - because I'm still a girl, duh!

10. Online shopping - when all plans of going to the mall fail, feasting on nice things is just a few clicks away

These are what I consider as "my practical vacation list"...or my "me time"...

"Me Times" can do a lot of wonders. It allows me to reboot my system so that I can perform my duties better. It is also a perfect time for me to throw all my cares away and just have fun. 

My "Happy Place" - Boracay!

Vacation or a change in my routine is a very rare opportunity for me because it takes a lot to make it happen. This is also the reason why I cannot forgive anyone who makes me feel bad while on vacation... 

Do that to me once and we're through. I know it sounds bitchy but this is me at 36 (and I do have plans of upgrading that this year because there are just far too many fake people in this world nowadays). And besides, can I help it? I do not sugarcoat. I can be mean if I'm upset. I can be bitchy if I want to even if it's not my style. 

A vacation is all I need. Is that too much to ask?

Read this. I DESERVE A BREAK.

So there you go, vacation is a stress-buster for me (even if it's just lying around inside the room watching a movie or reading tweets) and I guess it just makes sense for me to want it to be really, really stress-free and bitch-free.

Of course it is acceptable to have minor problems here and there. That I can handle. What bothers me is having mean people around. Having to deal with them is like wearing shoes that are too tight - so hard to fit in and it hurts in the end. 

And besides, being stuck in a place with someone you don't really like while on break or in the middle of a "me time"? It sucks.

***Credits to the photo owners and authors of the quotes used in this blog post.

Random Musings Plus 10 Work-From-Home Ideas for Moms, Home Divas and Domestic Goddesses

Fate has given me its verdict and I am hereby sentenced to house arrest. 

Having a special child is an obligation. It is a call of duty that I have to fulfill and I want to perform the job well. 

It is an extremely huge responsibility that goes on and on for 24/7 and does not have much benefits or perks. The job is specifically-designed for moms who are handpicked by a Higher Power for their extraordinary qualities, strength, resilience, patience and out-of-this-world abilities. Moms with special children are unlike any other moms. 

I would like to look at it that way because caring for a special child is more than just a challenging job. It is a humbling and a noble task that is NOT designed for the weak.

Yes, I am a Mom version 2.0 LIMITED EDITION 

One good thing about this special task is that it allows me to explore various fields of interest and avenues for self improvement. It makes me realize that being served with a verdict to be on house arrest can still be rewarding in spite of the limitations. Through it all, I can still be a special supermom plus more... here's how...

1. Web-content and Academic writing. 

Yes, I'm a writer and I earn money from it. Search the internet for various websites that offer web-writing jobs and gigs. Job postings can or may be found in various sites that offer classified ads. Send an email and other requirements (CV, sample articles, etc.). Full time and part time positions are usually available. Never provide personal information such as SSS #, taxpayer's info, bank details, credit card details, etc. Trustworthy sites will not ask for such information. All it takes is for you to prove that you can write. Ideally, PayPal is the safest method to receive your payments.

The pay isn't that much but it's so much better than waiting for the trees to give you money. Web-writing gives you something to do and allows you to earn something extra. It's ideal for those who are passionate about writing but have limited experience. I started out with web-writing, then later on applied as an online academic writer and researcher.

Academic writing is a different story. It offers a more rewarding writing experience. It also offers better/higher income. However, it also requires higher writing, researching and academic skills. If you are familiar with various citations (MLA, APA, Harvard, Oxford, etc.), this could be an exciting venture. The more projects you complete, the higher your profit. To start working and to view the details and specs of all available projects, you need to gain access to the company's platform first by signing in with your assigned Username and Password. You need to complete and pass their English proficiency exam and essay test prior to acquiring these log in details.

Payment is usually sent via PayPal. 

Do not be deceived by sites that offer "too-good-to-be-true" online ventures like "earn $$$ while sitting at home". Most of them would ask you to pay for a sign up fee to gain access to their site. Based on experience, any site that asks for a sign up fee for access is just bogus. Legit sites offer opportunities without membership or access fees. Also, trustworthy sites would never ask for personal information particularly your bank and credit details.

2. Start up a small business

Unleash your entrepreneurship and marketing skills by starting up your own business. Busy and full-time moms should think of a business that they can easily control and manage even while caring for their child. Maximize your resources... use the internet, be creative and explore new things. It also helps to develop your skills and to widen your network. There are two options; home-based and internet-based business. 

I know someone who is good with baking. She experimented with various new treats and came up with her own version of "red velvet crinkles with cream cheese frosting/filling" and at present, she's making money out of selling it online on Instagram. She has innovated new products also such as oreo-filled cookies and graham snacks. She bakes her products at home, takes orders online or via SMS, and sends them out through courier service. She also does meet ups in her area.

3. Sell stuff on eBay and other legit online selling sites.

Your trash may be a goldmine for others. Gather up things that are functional yet may not be useful in your household anymore such as your child's old stroller, high chair, toys, slightly used clothes, slightly used shoes (we know how kids tend to easily outgrow their stuff), gadgets, bags, kitchen utensils and cookwares, and the list can go on and on.

You also have the option to develop your own products such as charm bracelets, beaded bracelets, other types of accessories, creative items, etc. Find out what area you're good at, develop it and make money out of it. 

If you, more or less, know what items to sell, then you're good to go. Remember, it helps to sell quality and functional items that are up-to-date and essential. Look for suppliers who can offer you great deals. Shop for items that you think will sell online. Be resourceful because there's a lot you can do with your extra time and energy. Increase your feedback score as an online seller (eBay) and gather up testimonials from satisfied clients (if you're selling on Facebook, Instagram or other sites) to maximize your online credibility.

4. Expand your network to sell various products and services

If you intend to develop your own products, you might as well expand your network to increase your chances of having rewarding sales. You may also build your own website that features your products. Advertise your website everywhere and ask friends/family to promote or share it on various social networking sites.

5. Create innovative products that can be used as party and event giveaways

Items such as liquid hand soaps, organic bar soaps, shower creams, hand gels, essential oils and loot bags are nice party giveaways to guests. All it takes is the skill to make them and proper marketing scheme. Find a supplier of raw materials that offer seminars on how to develop these products, come up with your own unique packaging and take orders for various events.

Personalized items are, in general, very appealing. If you have a wide network of family and friends, you can offer different kinds of products that have a personalized touch. 

6. Join a marketing team that allows its members to work from home

Multi-Level Marketing (MLM) can be a rewarding venture if you're good in sales and marketing and if you have a wide network. If you possess that irresistible charm and charisma, and you have that extraordinary ability to convince people to buy products, MLM may be a rewarding venture for you. 

Over the years, a lot of negative news, views and comments surround MLM companies. However, it is not entirely true that MLM is plain bogus and impractical. In fact, there are credible companies out there that use MLM to generate sales and profit which have maintained their credibility over the years. Do your research and discover the rewards of MLM. This is perhaps one of the best ways to earn money from home; and it is likewise a worthwhile venture for moms who are excellent in sales and marketing. 

6. Develop your own household cleaning chemicals

Housewife? Stay-at-home mom? Mommy-caregiver? 

NO! Domestic Goddess is more like it... and it can be more than that. 

If you know a company that sells raw materials for household chemicals, create your own line of housecleaning aids such as dish-washing gels, liquid detergent, and fabric conditioner/softener. Attend their seminar or ask for a one-on-one orientation. Inquire about natural and organic ingredients. Create your own products that will suit your needs and come up with a catchy brand name and tagline. 

You can use the products you have developed right in your own home (this can save you money from buying advertised / commercial brands); or sell them. The internet is an excellent medium to spread the word. 

Some companies can pre-mix the products for you. All you have to do is to repackage them and then add in your label... (and there you go, you've got your own line of liquid household products). 

7. Write Blogs and Sign up for Affiliate Programs

Ideally, this is for serious bloggers who want to make money out of blogging. Bloggers usually enroll in various affiliate marketing programs to maximize the opportunities that go with their online presence and to make money out of their blog site.

This first step is to develop a worthwhile blog site that targets a particular audience. Increase the traffic by posting the URL or link to the blog in various websites. Promote the blog site to generate a steady stream of visitors.  

Affiliate programs are marketing schemes specifically-designed by different companies to promote their services and products. When you choose to become a member which in most instances is free of charge, you are authorized by the company to create links to be posted within your blog site to promote their website, services or products. Each time a sales is generated through the links you have created, you enjoy the rewards of affiliate marketing because you actually receive a portion of the sales profit.

8. Organize a Garage Sale

A fun and profitable venture that will open your world to lots of new acquaintances and instant friends. If you have high tolerance for sorts of people (especially hagglers), this is something you can do on your spare time. Weekends are ideal for garage sales. Some items you can sell are old furniture, household items, appliances, clothes, shoes, bags, home decors, magazines, books, and even gadgets. 

9. Conduct a Bake Sale

Gather up your friends and organize a bake sale right in your garage or community center. If you can, try to get to know the events in your parish and neighborhood and arrange for a booth where you can sell your products. You can sell home-baked goodies such as muffins, cupcakes, cookies and other pastries. It is also a great way to promote your products and probably get future orders and referrals. 

Think of a unique and catchy brand name for your products and an attractive logo to create an impression. Make sure to come up with something that can attract attention and trigger brand recall among your customers. Another practical idea is to bake the goodies right in the comfort of your own home and hire someone who can sell and market them for you - with a commission or salary, of course.

It's all about having a nice and classy presentation. You'll never know your potential as a baker until you give it a brave shot.

10. Sell your talents by offering tutorials at home

If you are an expert in a particular field, you can make money at home by teaching. For example, if you are good at playing the piano, you can conduct piano lessons at home. If you have exceptional talent in math, science or other subjects, you can offer tutorials. You can name your price and get paid by the hour. 

There are many other things you can do at home that guarantees profit and success. It's not all about wearing corporate suits and high heels all the time. Some moms are capable of making money in their aprons and slippers - plus they get to spend more time with their family especially if they happen to have a child with special needs. 

The whole idea is to sell your abilities.

If you're good in writing, sell your words.
If you're good in baking, sell your pastries.
If you're good in sales, sell your products.
If you're creative, innovate.
If you're sociable, make connections.

The possibilities are endless for those who are willing to work for a living. We often hear about people who are having trouble "making ends meet"... it's true, the demands of everyday life can be too much to handle. But everything is workable.

More importantly, do the math. If you're earning 10, don't spend 20. 

Live within your means, work with what you have, maximize your potentials, and make use of your time wisely.

Don't forget to rest and give yourself a break. As a mom, I always remind myself to give the best of me to my dear ones and not what's left of me. Therefore, rest is also essential.

There are a handful of other things that stay-at-home moms can do. All it takes is willingness to work humbly and to love what you are doing. 

*** The images/quote used in this blog post are not owned by the author/blogger. Credits to the rightful owners and authors.

Time to let my hair down!

(...or better known as - "Day off ni Inday")

No matter how busy it gets, moms deserve time for themselves, too. I call it "me time". It is usually during this time that I get to enjoy my simple pleasures. They're really not that much since I only have a few hours to spare for myself. However, I try to make the most out of this little time. 

Other moms can probably relate also...after all, regardless of age and all other factors, we deserve some time to let our hair down.

1. Blogging. Which is exactly what I'm doing now. It is a liberating experience and it allows me to share my thoughts and to free my mind. Writing tightens my bolts whenever I'm feeling "all out of my elements." I have quite a lot of blogs scattered around the net but they're all anonymous. There are only a few who can guess it was me who published them. This is what makes this blog special for me. People can tell it is me who's blogging. It gives me the freedom to share snippets of my life and random thoughts with others who might be interested to know what I've been up to. 

2. Foot spa and pedicure. Who wouldn't like that?

3. Shop personal stuff. It's my therapy though I like to believe that I'm a smart shopper.

4. Baking. Never been good at it but at least, I get to play.

5. Hair treatment. My hair's a mess all the time, it's almost always tied in a ponytail. Stress, tension, improper diet, insufficient sleep and poor physical fitness made me suffer from hair fall at some point. Which is why to save my sanity and my crowning glory, I have to seek the help and expertise of a "hair fall rescue squad". Besides, my everyday "sabunot look" always upsets me. 

6. Full body massage. Need I say more?

7. Go out with friends to dine in a restaurant, watch a movie or chat over cups of coffee.

8. Yoga. Basic yoga (warrior, tree, sun salutation, etc.) have a way of calming me. It also helps in improving my mood.

9. Out-of-town trips... which actually happen only once in a blue moon given the fact that I'm the primary caregiver of my son. Well-planned getaway trips allow me to unwind and just be free. It puts my life back in balance. 

10. Going back to my childhood place. I consider it my happy place because it brings back a lot of good memories. It reminds me that I'm still "me" (through it all)... it also gives me the chance to look back at my journey through life. There, I find comfort and peace. Being "home" is much like "just being me all over again" - the "me" that I know so well. It gives me hope. It helps me gather up myself together. It is the most comforting place I know and it is everything that I am.

Setting Myself Free

Keep Calm and Read

Adjusting My Sails

Things do not always turn out the way we want them to.

Plans change. Expectations fail. 

The next thing we know, the wind starts to blow in a different direction. And it takes us to an unexpected place where a difficult situation or a daunting task awaits us.

I found myself in that place. It was unexpected and unplanned. But I have learned to adjust my sails. I have found a way to deal with the changing direction of the wind. 

Long before I had Gabriel, I prayed to God every night to grant me a healthy and good child. How many young women my age would pray for such thing at that time? Some would pray for a stable job, for a good man, or for huge fortune, but I prayed for a child. I guess the reason was because during my teens, I was diagnosed to have hormonal imbalance. I was so afraid about not having a child.

And then I gave birth to Gabriel. I remembered so well the first time I held him. He was so cute and fragile. I remembered so well how I gently traced my finger along his cute cheeks and how he turned towards it. He was hungry. 

I remembered everything so well... the anticipation while waiting for the nurse to bring him in my hospital room. My husband and mom were both there. Both were filled with overwhelming excitement. We all had high hopes for Gabriel and from that day on, I knew that my life already belongs to him.

Taking care of baby Gabriel was filled with sleepless nights. The adjustments were crazy. But we managed. Immunizations. Check ups. Everything that normal parents would do to make sure that their baby is perfectly fine and healthy.

And then came one hospital stay after another. Inguinal hernia operation. Seizures. Infection. Fever. Allergies. Etc. Etc. Etc.

But wait! There's more...

CT Scan. MRI. EEG. Metabolic Screening. Electrolyte Testing. Blood Tests. Urine Test. Cerebrospinal Fluid test. Etc. Etc. Etc.  

Fast forward to present... my mind (which, by the way, is always out of tune) sings; "what a journey it has been. but the end is not in sight... but the stars are out tonight. and they're bound to guide my way"

Staring at my Gabriel, I can't believe everything we've been through. That crazy and stressful journey we had was unbelievable... unbearable at some point. 

Before I even had the chance to gather up what's left of me, there... written all over the place and with all its splendor -- TIME TO ADJUST SAILS.

Everything we've planned dissolved into thin air and I realized just how much we've lost and how much we had to give up. 

Now, I finally know what "adjusting sails" meant. By doing so, I had come face-to-face with valuable lessons in life which taught me a lot.

I have learned to change my direction.

I have learned to adjust my standards based on what I have and don't have. 

Gabriel's condition has given me a lot of limitations. It changed me. And yes, my life is no longer mine. But it goes on. and on. and on.

Hindi ko alam kung matatawa ba ako o maiiyak. 

We plan. God laughs. 

Because indeed, sometimes, things do not always turn out the way we want them to. We can go on hoping and praying for an apple without even knowing that an orange is what's meant for us. (Not even lemons). Whatever will be, will be. 

It's called destiny. Fate. Because "what's for you won't pass you by".


P.S. Akala ko noon isang tambling na lang makukuha ko na yung gusto ko. Pero hindi parin pala. 

Parang wi-fi lang ng kapitbahay mo yan eh. Just when you thought naka-connect ka na at nakaka-surf ng libre, they protect it with password. Patay!

Nakakaloka. Pero keri lang.



*** Some images used in this blog were copied from other sources. Credits to photo owners.

What "Special" Means

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

Credits to photo owners & authors of these quotes.

Lemons and Tequila

"When life gives you lemons, bring out the tequila!"

A proverbial line that has been given an amusing twist which, on a more personal note, simply means "to find something good in the negative" or "to make the most out of what you got". After all, lemons aren't that bad. 

It's cliche... but it means a lot. But I'd like to put it this way...

Some people are served with the steak of their choice. If they are lucky enough, it comes with their choice of wine. Some luck, eh? 

(Still, these people will most likely demand for dessert)

Some people are served with an average meal. Not exactly as appealing as the steak but it's not bad at all. It's still a meal.

(After eating, these people will most likely demand for coffee)

And then there are some who will be served with a fast food value meal. Still, not bad. It's still worth something. I know a lot of people who would kill for fast food.

(These people might demand for some french fries to go with their burgers)

And then some will be served with lemons. Lucky if served because sometimes, they are thrown. Bulls eye!



Taking it literally, there's a lot I can do with lemons. Lemonade. Detox water. And yes, lemons do well with my tequila.

Lemons. Sometimes, that's what I get. If it's my lucky day, they're handed to me. But there are also times when they are thrown hard at me and I get hit. Poor lemons? Or, poor me? Either way, lemons aren't really just lemons. There must be some message, lesson or wisdom hidden somewhere. (Or, perhaps... a diamond pushed and buried against its skin. Just a thought.) 

That's life. Sometimes you'll be blessed and sometimes, you'll be tested. It's not fair but that's life.

This personal interpretation of this mighty "proverbial phrase" (which I stuck somewhere in my head) sometimes makes me wonder why people still tend to ask for more even though they already have a lot compared to others.

If I had been served with steak and wine, I wouldn't bother for anything else. Not even dessert. (But of course I might not be able to arrive at that thought if not for these lemons. Indeed, life has its own way of serving wisdom.)

Wisdom. It's not served on a plate. It's not even ready-made. It is earned... from the lemons.

What do I intend to do with my lemons? 

Bring out the tequila and start a party.

Credits to the photo owners

*** Some of the images used in the blog posts are NOT owned by the author. Credits to the photo owners.

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.