(This was a reaction I wrote in my FB post. The reaction was about people judging and making unkind remarks, something I have personally experienced, not that the words were spoken to me but to my loved ones. Before I share my reaction, I’d like to include a part of my friend’s post that prompted my response.)
To those who don’t know the whole story.
Until you have walked in our shoes and have felt the pain we feel, keep your cruel comments and opinions to yourself.
Ignorant people can be so cruel!! I’m posting to stop people from mocking and laughing at people for things beyond their control. I have two of these illnesses as do some of my friends. It’s a daily struggle being in pain or feeling sick on the inside while you look fine on the outside, an invisible illness like IBS, Crohn’s, PTSD, Anxiety, Arthritis, Cancer, Heart Disease, Bipolar, Depression, Diabetes, Lupus, Fibromyalgia, MS, AS, ME, , Epilepsy, hereditary angioedema , Migraines, Hashimotos, AUTISM, Borderline personality disorder, M.D.,D.D.D., CFS, Histiocytosis, O.D.D, A.D.H.D, RSD, Rheumatoid Arthritis, PBC,RLS ,COPD etc. Never judge.
Below is my reaction this post. (31 March 2016)
As I read this last night, I couldn’t help but vividly recall what I personally went through last February.
Our little one has been through a lot in her 1st 6 months – having been misdiagnosed with epilepsy on both sides of the brain at just over 2 months. Needless to say, she does not have it. What she had though was bronchiolitis and at just over 2 months, what she went through was something I had not experienced with my firstborn. Confined for 11 days, me on full time work with just the nanny as my other adult to depend on (hubby was back in UK at that time), I was truly and sincerely grateful for church and close friends from school who served as my support system. Without them, I would have succumbed to illness myself from lack of sleep and rest, not to mention the tension, anxiety and confusion in what was causing her illness at that time before being diagnosed.
This time around, out of some concerns, I decided to seek another professional help last February and again, was straightaway given a diagnosis.
As a teacher who taught preschool to Grade 6, I’ve had my share of special needs or developmentally challenged students. I’ve seen and in some ways felt the parents’ anguish and at times, helplessness, especially that of a mother’s. What a mother would do for her child who suffers from some form of illness – I truly understand. What and how a special needs child is like in a class is also heartbreaking and a very humbling experience as well.
As a mother, when I was told about my daughter having ‘Autism Spectrum Disorder with Global Developmental Delay,’ and her skills described as that of a 2.5 year-old, it was nothing short of devastating. It took me a few days to recover from that shock and thoroughly re-evaluate and re-read the doctor’s “observation notes” (which took place for just over 2 hours!) and diagnosis.
The only thing I could remember and think of at that very moment was: “I know now how my parent-mums must have felt when a similar diagnosis was given to her child.” This is how it feels like. That was the only thing I could think of then.
Like any mother-teacher-crusader out there, I did my own research and recalling my experiences with my students, parents and their therapists/doctors, one thing was very certain. This is what made me say to myself: “Wait a minute! Something is NOT right. What the doctor wrote on his notes didn’t describe my daughter at all, if he had really done an honest and thorough observation.” Surely, a 2.5-hour one time session could not warrant such a life-impacting diagnosis! It made me wonder and question how someone could very easily pronounce that a child has a lifetime condition that affects not just the child but the entire family. It’s as if the person was dispensing a cough or colds medicine. But that was beside the point.
And oh foolish me! I was too overwhelmed, shocked and surprised to hear that pronouncement on that day that I didn’t even say anything to refute or even question what the doctor wrote and ‘observed.’ I remember giving him a lot of details about what my daughter could do as opposed to what he expects her to do – drawing stick figures is definitely not within her age yet (she’s not even in Nursery and I don’t understand why she’s expected to have that skill!). Secondly, she can’t be expected to go out of the clinic alone to go to a public toilet for a pee! Goodness me! And yet, that was what the doctor expected of her – at 3 years and 1 month!
Looking back now, what I really loathed about myself then was that I allowed myself to take in all that and did not get the chance to question the basis of that diagnosis. After the initial shock had worn off and after lots of tears and prayers and dialogues with family and a few trusted friends, the ‘haze’ began to clear and I learned precious lessons about myself, God’s goodness, faithfulness and wisdom and yes, about opinions and advice that are first and foremost, GODLY, encouraging, kind and wise. They were like honey to my aching heart and soul back then.
That was a HUGE lesson for me as a parent and a mother.
It was God’s way of telling me straight off because a month before I was supposed to quit my job, I still wasn’t so convinced that quitting was the right decision. Well, that was telling it to my face – that experience!
There was no question about it. My role as a mother and nurturer to my own daughter is more important than my job or earning an income. God will provide. That experience sealed my conviction and my resolve – that quitting my job and focusing on my daughter was the BEST decision I’ve had to make.
As her mother who carried her in my womb for 9 months and delivered her via natural birth WITHOUT any health issues and complications for both of us, I am convinced that Anya does not have the condition. A hard and painful lesson learned indeed. It was like a gentle slap (but a slap nevertheless!) on my face.
What she needed was me, her mother – to give her my full attention, dedication and care at this very significant stage in her life as she prepares for preschool. In the same way that I had my full attention to her kuya (big brother) those many years ago as he first learned his letters, numbers, rhymes & songs, poems and such.
To this day, the only reason I post my daughter’s activities in my FB account is as a validation of what she is NOT according to that ‘diagnosis.’
I pray that all the other mothers out there – whether or not your child/children have special needs/illness, will truly understand that NOTHING (yes, not all the toys and gadgets) comes close and can ever come close to just BEING THERE for our children – I mean physically being there to spend quality time with them and nurturing them especially at their developmental age/stage – pre-literacy and early literacy, and even as they grow older.
If there’s one huge lesson I learned not just from this experience but from my students as well, it is this – one common voice across the ages:
Our kids WANT US – our time, love, attention, care, listening ear, appreciation, affirmation and all those NON-MATERIAL things. (Oh I’ve heard this so many times from a lot of my students!). I’m not saying that having things is not a good thing – the right ones have their uses and advantages BUT they DO NOT come close to BEING THERE with them.
No offense to working mums but as a stay-at-home mom with my daughter now, I NOW TRULY have all the RESPECT and ADMIRATION for Stay-at-home-Mums and also those who home-school their kids, especially those who gave up lucrative and flourishing careers – just so they could nurture their children. I will nor be a stay-at-home mom for long (I wish I could because I am really just learning to embrace and enjoy this wonderful journey with little Anya!) and this is why I am embracing all of this with arms wide open, thankful for each new day we have together and anticipating what each and every adventure and misadventure (oh the neighbor’s Billie goat was one of a kind and a first even for me!) brings us! I remind myself that come July, I will surely surely MISS all this!
Lastly, this reaction to a friend’s post is also my way of saying that yes, though my daughter does not have an illness/developmental delay, I’ve seen, been and am with people who have and yes, until you know the whole story or have WALKED in their shoes, the best thing we can offer is KINDNESS and UNDERSTANDING. So unless we know WHAT IT’S LIKE, it’s best to KEEP our unkind, selfish, inconsiderate thoughts and words to ourselves. Or better yet, get out there and WALK in that person’s shoes first. I agree, NEVER JUDGE. And if I may add, PITYING them is also another thing they DON’T need.
“I praise you because I am fearfully and wonderfully made; your works are wonderful, I know that full well.”