So I thought it was time to write a little more about my youngest daughter, Heidi.
She is, without a doubt, the reason I am who I am today. From the moment she was born, everything I ever thought I knew was turned around.
I never expected it. I didn’t have any pre-natal testing as I assumed ‘that would never happen to me’…’cause I’m the exception to the rule, right? I already had a typical, healthy daughter, there was no cause for concern as far as I was prepared to think. Plus I had already decided that there was nothing in this world, no amount of crazy testing, that could prepare me for a child with a disability. “I work better under pressure and in the heat of the moment.”
I wonder whether or not I would change things if I could go back in time… Part of me thinks that it would’ve been better to go through the denial and the faux heartbreak during the pregnancy instead of while she was here…the other part wonders whether that would’ve given me a reason to terminate. “Who would want to be born with Down syndrome if given the choice?”
I was rather ignorant. I was also a horrible, horrible human being. I still could be in many ways, but I guess I’ll never know until a couple of years and life-changing experiences have past…
The first thing I realised after they mentioned they “noticed characteristics of Down syndrome” was that I knew ABSOLUTELY NOTHING about the most recognised disability in the world. That’s what it was, ‘the most recognised’…just because I knew what it looked like, I thought I knew everything about it… I didn’t.
I cried because I thought that was the right reaction. I didn’t know whether to be happy or sad or angry or anything. They asked me if I knew anything about Down syndrome. My answer?
“Of course! ……wait….maybe you should tell me what YOU know first?”
All of a sudden I was inundated with masses of information about chromosomes, defects and medical issues that could arise.
“Wait, so they don’t just all look the same?”
Yeah, I was pretty darn stupid.
Heidi was born with a heart defect, called an ASD (atrial septal defect) which was simply put, a hole in her heart. “Quite common amongst people with Down syndrome.” Didn’t know that.
“They can have gastrointestinal issues, thyroid problems, hip defects, lung issues, spinal abnormalities, hypotonia, vision and hearing problems, developmental delay, intellectually disabled…they’re also 20% more likely to have leukemia…etc etc” Didn’t know any of that.
All of a sudden I realised my crying reaction was probably the right one. So I cried some more.
“It’s normal to grieve the loss of your typical baby…”
And then I stopped. ‘I am the exception to the rule. These things may affect everyone else adversely, but I am not everyone else. How dare you assume to know what I am going to do in this situation!’
I shirked everyone. I refused to enter into Early Childhood Intervention Services (ECIS). I refused to go to the “millions of appointments that she’ll need for the rest of her life.” I assumed if I treated my baby like any other baby, then she would be just that.
Around the 12 month mark was when I decided to give in. When I realised that ‘treating her like a normal baby’ wasn’t working. She wasn’t sitting up on her own, she wasn’t eating food, she wasn’t doing things that every other child was at that age.
So I went to ECIS. I agreed to start Physio, Occupational, Hydro & Speech/Feeding Therapies. I made an appointment with her Paediatrician. I finally accepted that she had Down syndrome and no amount of ‘normal treatment’ was going to change that. And we are all the better for it.
Apparently, I’m not alone. Without realising it I was ‘just like everyone else’ by refusing to accept her diagnosis. Denial being one of the stages of grief.
I struggle with that sometimes.
“Maybe Heidi would be further along if I’d just accepted the help…”
But, with that, more acceptance. I refuse to regret my past mistakes…as they are just that, mistakes that I cannot change, no matter how much I dwell on them. And through that denial, I enjoyed my newborn baby…just like everyone should.
In accepting that she’s different, I also came back to the conclusion that she is still more alike other children than different.
Sure, there are more things we have to do to get her to achieve milestones like everyone else…but to this day, with the ‘millions of appointments and medical issues’, my typical daughter Hannah has been to the hospital more times than Heidi.
I’m not here to tell anyone that “Heidi is an angel who is happy and smiles all the time” because she’s not. She has an infectious smile, the most beautiful smile in the world to me…but she still cries and gets angry, just like any other child… She throws tantrums and gets into mischief with every chance she gets. (This morning she climbed up the pile of clothes in the laundry to the washing machine, lowered herself into the trough and turned on the taps…augh)
It is difficult. But so is her older sister and any parenting. Parenting is difficult.
She has the characteristics of a person with Down syndrome. She also looks alot like me and her sister. She has blonde hair and blue eyes like Hannah and her hair is straight on top and curly underneath…like my hair.
I had her when I was 22 years old. I’ve had Doctors say “Wow, 22, were you struck by lightning twice as well?” Um no, actually 80% of babies with Down syndrome are born to younger parents…the average age being 26.
She actually likes being alive, even with Down syndrome…funny that.
It’s actually REALLY hard to offend me! Unless you’re going out of your way to be blatantly derogatory towards my family or I, you’ll be pretty hard-pressed to say ‘the wrong thing’. Yes, my daughter has Down syndrome…but once upon a time I didn’t have kids at all, I was just like all of those ‘regular’ people out there…and I remember that. I would much rather people say ‘the wrong thing’ than nothing at all.
Because of Heidi, I have learnt to accept most people who I just couldn’t understand/was afraid of before. I no longer have an issue talking to anyone who looks different or their parents. They are all just people, after all.
Has Down syndrome changed my life? Without a doubt. Would I want a Heidi without Down syndrome? Hell no.