The Wacher’s and the Robert’s go way back. Both Sam and Bruce were at junior school with my husband and his siblings and they are entrenched in our local community.
Sam and Bruce, I don’t think you quite know what an inspiration you have been to our little family.
We have been able to witness first hand the deep seated love that you have for your little Eva Bug and as your family has grown in strength (and female numbers – watch out Bruce!), you truly have set an incredible example for us and so many others in our community to follow and learn from.
Enjoy reading Sam and Bruce’s journey – it is honest, humble and filled with a whole heap of humor and love.
Who makes up your family?
Bruce (dad), Sam (mom), and our three precious girls; Eva-Mae (aka Eva Bug/Buggy almost 6yrs old), Noelle (almost 4yrs old) and Scotty (almost 2 months old).
Tell us about your diagnosis journey – how, when, where?
On 7 March 2012 at 15 weeks pregnant we received our amnio results confirming Down Syndrome. (We’d had a few soft markers at our previous scan – a thick nuchal fold and iffy blood test results – and were referred to a foetal specialist.) These results also confirmed we were having a little girl.
I had desperately wanted a little girl.
I was devastated.
I didn’t cry.
I spoke to very few people.
We received limited counsel from a few close friends. We had a decision to make – whether to terminate our baby girl or not. I said no one should be asked to make that decision, that it was playing God. How could anyone make a decision to kill their baby girl or let her live?
We considered termination.
I couldn’t sleep, couldn’t eat, couldn’t even pray. I had heart palpitations and I was nauseous for the first time in my pregnancy. My husband was worried about my mental health. It was that bad. I guess I went into survival mode. I look back on this time and it’s very blurry. Shock and trauma will do that, I guess.
Then came the day.
I woke up and said to my husband; ‘I can’t do it’. ‘I can’t abort our baby girl.’
We cried. Hard. Tasting the reality. We clung to each other. Then he left to meet up with some friends. In my heart the decision was made, but I knew I needed him to say he was with me. That we’d raise our baby girl together. That he had my back. And hers.
Oh the tears of joy and utter relief that streamed down my cheeks when I received this sms a while later : ‘Let’s do this together. We will be okay. I love you!’ He phoned a second later and we spoke. I have never loved him more than in that moment. I love that he smsed me first. I now have a ‘hard copy’ of that moment. I have also never felt peace like that before in all my (then) 32 years of living. You know you hear about that peace that ‘surpasses all understanding’? Well, it was that kinda peace. (Philippians 4 vs 7:And the peace of God, which surpasses all understanding, will guard your hearts and your minds in Christ Jesus.)
This could have broken us. But it didn’t. Instead we have become stronger, closer, we’re on the same team, and I feel so loved and looked after by this incredible man. I’m proud of him. I’m proud to call him my husband (and he was to become an amazing father).
With the decision made. I knew it was right. The peace settled around me. I could once again eat, sleep and pray (albeit limited words). Heart palpitations and nausea gone. Ahhh peace…And anticipation….I started to get excited again…
Which moments do you find tough?
Eva lived with heart failure for the first 10 months of her life. She drank and ate so well, but struggled to gain weight as her heart condition caused her to burn so many calories. She caught any germ that came her way and it always went straight to her chest. For a long time we couldn’t go anywhere without her nebuliser and three times she was rushed to hospital barely breathing. Through it all she remained an absolute delight, fighting through and always remaining happy.
We always knew that she would be behind her peers, but her heart set her back even more. At 10 months old she finally reached the goal weight of 6kgs and the heart surgeon agreed to operate. We flew to Cape Town and were blessed with the incredible Dr Susan Vosloo who trained under Dr Chris Barnard! As well as the best anaesthetist on the planet, Dr Leish Horak. The operation was terrifying, but extremely successful.
Eva turned a huge corner after that and has not looked back since! Our 2015 check up with the cardiologist put us at ease when he said Eva is in perfect health and we would never have to worry about her heart again!
Which moments do you find euphoric?
Watching her take her first steps and eventually start walking and then running! And watching her making huge strides in her communication – first with Makaton signs and then verbally – the BEST!! Being able to communicate takes away so much of Eva Bug’s frustration – and it’s an incredible thing for the entire family. I still get proud (and surprised) every time she speaks.
What would you like to tell your pre-mom of a child born with DS self?
You will be filled with an unfathomable love for your child, no matter what the diagnosis. Love overrides all. And you will be surrounded by therapists, a community and church that backs you and lifts you up when times get tough. You’ve got this!
What would you like the world to know/understand about your child?
If you take the time to give Eva Bug the time of day, she will warm to you in an instant! If you have an injury, she will nurse you, if you look sad she will smother you in hugs, if you let her, she will become a teacher and take you through her entire school morning routine. She is worth investing in!
What advice would you give to a family who has just received a diagnosis?
Everyone has to go on their own journey, but I guess I’d say congratulations, don’t panic, research, and there is always another diagnosis out there that makes you grateful for Down syndrome. It’s a roller coaster ride of emotion from the get go, but you will experience a love like no other – embrace the journey! I found an old blog of mine describing what I’d been through in 22 weeks of pregnancy. This is what it had to say;
In 22 weeks I have:
* Almost popped with the excitement of being pregnant
* Been crushed by devastating amnio results confirming Trisomy 21: Down Syndrome
* Considered abortion
* Been totally anti-abortion
* Stated that ‘I can’t have a child with Down Syndrome!’
* Felt completely humbled & privileged that I get to raise a daughter with Down Syndrome
* Rejoiced that it’s a girl!
* Wanted to punch my husband so hard
* Loved my husband so much
* Met the most incredible little princesses with DS and their wonderful mums
* Rolled on the floor with laughter
* Cried so hard
* Been held so tight
* Prayed for a miscarriage
* Been terrified of losing my baby girl
* Faced fears
* Felt contagious joy
* Been hugged so hard by those with no words
* Felt love like never before
* Received more messages than when it’s my birthday
* Been prayed for – hard
* Learned to love my baby girl. Fiercely. And defend her.
* Asked God a lot of questions.
* Realised I’m at peace without the answers.
* Been contacted by strangers
* Made new friends.
* Read blogs and books I would never normally read.
* Been inspired.
* Named my baby girl
If you could change one thing in the world to ensure an easier life for your child what would it be?