Before I get to the meaty stuff; let me introduce you to our family, Konrad (Pappa), Anel (Mamma), Michail (Boeta) and Genevieve (Evie). We are your very average family with one slight difference; we know the power of the extra chromosome!
We are just over 2 years into our journey now but I remember that moment of Evie’s at birth diagnosis like it was yesterday. A scene from a movie but in slow motion. Our paediatrician was not quite able to look me in the eye saying “she has all the major markers for down syndrome”. . . Then a white blur while I think “Surely, they have it all wrong; all these markers can be easily explained by family characteristics. We did all the tests. We aren’t “those people”. God won’t do this to us”.
The next words may offend some but Konrad and decided from the start; if we were going to get through this, honesty would be the first critical step towards acceptance.
During Evie’s first few hours of birth, she had to be revived twice; she was on the brink of death and was in critical condition when she was transferred to another hospital in the early morning hours to a specialist team. In those first few hours of Evie’s life, I thought multiple times (too many times) “ maybe it would be best if she did not survive”. Fear has a powerful way of justifying just about anything; even if it goes against every fibre of your being or your entire belief system.
In that month that Evie was in NICU I spent mornings and afternoons with our (then) 2-year-old son desperately trying to keep his world as “normal”; as “untouched” as possible between making the 80 min journey to and from the hospital to be with Evie for the day. I sat for hours praying; looking at this little girl; totally misshapen by swelling from the opioids she was given to keep her “comfortable”; tubes coming out of every part of her little fragile body. Unable to even hold her.
I was devastated. Konrad simply looked at Genevieve, fighting every second of her day to just stay alive and announced, “She deserves the best we can give her”. For Konrad, his love for her was truly unconditional from the word go.
For me, it was not that easy. I had felt so much shame. I was guilt-ridden trying to find a logical explanation for this biological “abnormality” (I should have taken better care of my body when I was younger. We should have not had children at such a late age). I was at extreme odds with my Creator (for a long time); anger, fear and hopelessness gripped me tightly every hour of the day. All I kept on asking was “Am I ever going to be happy again?”.
As the days passed and Evie got stronger, the pragmatist in me took control and I started to inform myself to prepare us for what was to come. To be honest; most things I read back then either frightened me to death or incited me to levels of anger that were beyond my nature (like those picture-perfect Instagram Moms writing blogs saying, “we would not change him/her even if we could”). But then someone spoke to us about Early Intervention and suddenly there was a glimmer of hope we could grab a hold of.
With the start of our investment in Early Intervention, we became part of an entirely different type of family. Our Down Syndrome family is loving; accepting; caring and wise with experience. It’s unlike anything I have ever known – and I feel privileged to call these moms my sisters.
We have come to realise that the world has, and continues to change its view towards neurodiversity. There are amazing doctors, therapists and teachers who are beyond committed to helping our Littles grow to the best of their abilities and with that come the inclusivity we so desperately crave for our kiddos. Don’t get me wrong; there is still much work to be done to advocate on behalf of our kiddos but at least now they have a fighting chance.
I could write a book about our journey with Evie over the last 2 years. We have been lucky; at the age of two she can walk; she has started talking and is very independent. She has a sassy personality sprinkled with a fantastic sense of humour.
I don’t know what we will face on our journey ahead but here is what I have learnt so far:
Yes, you will be joyful again!
Take care of yourself.
Acknowledge, validate and work through your emotions. Get help if you need help; you also deserve to have a fulfilled life.
It’s a roller-coaster.
You will go through times of great joy and great challenges. One day you will feel like you have conquered Mount Everest and the next you may feel is a complete failure. Just keep on keeping – children with down syndrome work on their own schedules but they DO hit all the milestones eventually (“They make us work for it 
“)
You are not alone.
The Down Syndrome community is a loving; tight-knit community; don’t hold back from joining a support group, We understand your journey and would love to support you and share in your delights and heartaches.
You have the last say.
You know your child best and no one could have more invested in your child’s future than you. Having a big team of therapists to help guide and support you is great, but with a multitude of opinions come a great amount of stress to “make the right choice”. Choose what works for you and your family -never doubt your parental instinct.
Normal.
Over time your understanding of the word “normal” will be redefined. You will realise that children with Down Syndrome are not “special needs” children. All children regardless of their neuro-orientation have exactly the same needs. Every child needs to be loved and cared for, every child needs to be “taught” how to crawl, eat, walk or talk. Yes; children with Down Syndrome process information differently and more slowly and you may need guidance in understanding non-neurotypical development but we are fortunate to have access to the help we need.
Why.
I still cringe when people tell me “God knows who to give the special children to”. I don’t think that that is the case; I think that we live in a “fallen’ and selfish world and sometimes things just happen. What I do believe however is that we will never be forsaken and that God can make any situation work in His honour and for your joy. “Why” doesn’t matter when you know you have His promised daily guidable and protection.
Be proud.
Statistically, it is near impossible for children with down syndrome to survive being born that in itself should tell u something about the fighting spirits our kids have. They have far more courage than we have; work 3 times harder than the average child and are tenacious beyond belief. That should make us proud!
Some people are just ignorant.
Don’t lose your joy over those people who choose to remain narrow-minded and even hateful. It’s their loss. You will get stares (or even worse someone pretending not to look but then quickly looking away) but more often than not children with down syndrome are stealers of hearts. And oh boy that is something amazing to behold.
I would like to end by saying if you asked me two years ago if I would have been able to write a positive piece about my child with Down Syndrome I would probably have gotten up and left the conversation. Yet; here I am sitting on the couch writing this piece while Evie cuddles me. She steals my heart daily. She makes me work harder and have transformed my heart into one of thanks for even the smallest of blessings we receive daily.
All my love
Anel