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.