aysjaysandayches

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October is Down Syndrome Awareness Month…

on October 2, 2012

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.

 

Happy Heidi

 

 

 

Angry Heidi

 

 

Mischievous Heidi

 

 

 

Sad Heidi

 

 

 

Love

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24 responses to “October is Down Syndrome Awareness Month…

  1. Very cute photos. Thanks for sharing.

    You have a very nice blog here. I enjoyed reading your post very much.

  2. It’s been my pleasure to check out your wonderful blog.

    Those pictures are priceless!

  3. Kitt Crescendo says:

    Thanks for sharing. Your post touched my heart.

  4. Leesah Em says:

    Thank you for sharing little Heidi with us and your amazing story. My cousin went through the same sort of process with her son and his yet to be diagnosed birth defects/disease…er…well, they are still not sure what it is that he has and he is now in his mid teens.

    • You’re welcome! I tried to shorten it down as much as possible :) I guess I should be thankful Down syndrome is so easily recognised, Heidi was diagnosed within minutes of her birth! I do not envy the genetics process that I see so many go through…

  5. Ad-libb3d says:

    What a wonderful post. My wife’s sister has Down syndrome. She’s been family for nearly twenty years and it’s been, to say the least, a roller coaster with big highs and big lows, but she’s easily one of the most amazing people I’ve ever met. Your Heidi is a beautiful child. Thanks for sharing.

  6. linneann says:

    I LOVE angry Heidi. LOL! I can’t imagine my Erik without Down’s either. He has taught me so much. He is 18 now. Enjoy the ride!

  7. You have beautiful daughters! Thank you for sharing your story!

  8. notatypicalmom says:

    Your honesty is amazing. What a great gift to share. Thanks.

    • Thankyou! :) This doesn’t have much detail but I might leave that for my book that I’m sure I’ll eventually write :D It only took nearly 4 years but honesty feels good…even though there’s probably many who wouldn’t like it…

  9. Heidi and Hannah are absolutely beautiful. It’s a hugely complex ethical topic far beyond my feeble understanding, but pre-natal testing makes me feel uncomfortable – I hope all the Heidi’s will always have a special place in the world.

    • aysjaysandayches says:

      I think the testing has its place…especially now since it’s alot less invasive. I think ‘all the Heidi’s’ will be fine though, there are alot more lovely people out there than I think most give credit. Thanks for commenting! :)

  10. [...] 1. aysjaysandayches for her post “October is Down Syndrome Awareness Month“ [...]

  11. mamajoyx9 says:

    Wow. Noah and Heidi have different hair, eyes, sizes, etc., but that sad face and that angry face are IDENTICAL!!!!! And as a friend once told me (who has an amazing grown son with Down syndrome), sometimes there is more than one right answer. Your decision to avoid the first year of appointments and prognoses etc. was your right answer. As another mom of a grown child with Down syndrome told me, there is also sometimes no right answer. There are somethings about our children no amount of OT, ST, PT, schooling, training, etc. are going to change.

    Love your writing style. Wish our kiddos could play together.

    Blessings,
    Alyson

    • Oh me too! Thanks so much for the compliment and taking the time to comment! :) I have to keep reminding myself there’s no point dwelling on the “what if’s”…not so much now though :D

  12. bellaverita says:

    Heidi is such a cutie! I feel the same way about my daughter…she really has changed my life, in so many ways. Thanks so much for the like at Bella Verita. Appreciate it!

  13. evaginnell says:

    Oh, your beautiful writing touched my heart – I followed a similar path to you, no pushing and pulling, let him/her reveal who they are first and then we’ll see. Looking forward to connecting more with you – far away on the other end of the world!

  14. Mama_KK says:

    Precious!!! I am right with you sister! One of my favorite things about having a child with Downs is how other’s react to him. I have total strangers gush over our little guy and then share how they had a sibling or friend or Uncle, etc, who also had Downs. I’m so blessed to see him touching people’s lives as I’m sure you experience also!!!

    Thanks for joining us at andonthatfarm.wordpress.com ;)

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