The day the emergency room doctor said “You are lucky your child is so healthy” was the day that pushed me over the edge.
Was I making this all up? Was it all in my head? Is he really a ‘well’ child and I am just making a big deal of nothing? I started having panic attacks. I could no longer talk or think about his health without plunging into confusion and despair.
Our dear son had challenges from the day he was born. While his milestones were reached on time, there was so much that wasn’t quite right.
We went to so many different specialists, so many doctor visits, and so many emergency room visits. We only ever got through the acute phases because everyone dealt with their part and didn’t discuss his general care.
He had reflux as a baby, asthma, eczema, and allergies. He never slept, had constant ear infections, and recurrent chest infections. Even with bacterial pneumonia, he never got fevers. He had a complete inability to EVER sit still. He hated going to school and then he started collapsing at school.
I was in a permanent state of confusion and hypervigilance because of how much had been missed over time. How many serious ear infections had gone undiagnosed for too long. We were sent home from hospital again and again, only to return with a child who was even sicker, and then be asked “Why didn’t you come in earlier?” Specialists and ED doctors mocked our GP’s treatments (by the way, our GP was right time and time again).
This has been my life for the past 8 years.
I felt lost most of the time. Confused. Like I was failing constantly as a mother. How do I help him? When am I over-reacting? When am I not reacting soon enough?
I seem to get it wrong every single time.
It turns out I wasn’t over-reacting (most of the time). It turns out he has lots of issues. All it took were multiple professionals who were willing to go the extra step and were willing to talk to each other.
It began to turn around when we started seeing the right paediatrician. Who every time we go, asks about every one of his issues. Who is willing to listen, who will talk to our GP, who reads reports thoroughly from other specialists, who won’t overload us.
It also took seeing a psychologist through a university clinic. They not only helped us with his anxiety about school, but they said there is no use dealing with this if we don’t deal with why he has it. So, he had psychometric tests and we discovered he is extremely bright but probably has Attention Deficit Hyperactivity Disorder (ADHD) and Specific Learning Disability (SLD). The conflict of being so capable but unable caused massive stress.
It also took the right teacher who was willing to walk the journey despite the endless questionnaires and reports.
It has taken countless tests, tears, frustration, doctor visits, therapy visits (occupational therapist, speech therapist, psychologist, physiotherapist), medications, sacrifice and hope.
My little boy will continue to face challenges as he struggles with all the diagnoses and health issues of asthma, ear problems, eczema, allergies, ADHD, SLD and possible epilepsy, but we finally know.
We know that his life is not as simple as others.
We know that he has some mountains to climb and so do we.
We know that we love this kid just as he is.
We know that with help he can overcome.
We know it won’t always be this hard.
We know that tomorrow is a new day.
We know that sometimes doctors are wrong and we have to advocate for our kids regardless of how stupid and paranoid we seem.
We know he is worth it.
A big thank you to another incredible mum and friend for sharing your story. Despite the heartache, the struggles, and the setbacks, you and your family have persevered. Though your journey may be filled with many bumps, twists and turns, please know that your voice has been heard. You are capable. You are strong. You are not alone.
Also, another thank you to talented artist Kim Neil for use of her painting 'Different is Interesting'. To see more of Kim's stunning artwork, visit her website Kim Neil Gallery or follow her Facebook page
NOTE: If you feel like your concerns are being dismissed, take the time to find the right doctor for you and your family. In this story, anonymous writes that her 'GP was right time and time again' and it wasn't until she found the right paediatrician that things started to turn around. Please know that a doctor's job is not just to diagnose and treat, but to listen and advocate, especially in times of uncertainty.