In life we have no control as to what cards we are dealt but we do have control as to how we play our hand.

“You have a decision to make” were the 1st words we heard before even receiving our diagnosis at 12 weeks. There was no explanation at that point as to what we were needing to make a decision about, just that we needed to make one.

The decision the doctor was referring to was whether to terminate, but not once did that even cross my mind. I quickly glanced at my husband, trying to make sense of it all. My brain quickly started scanning my prior knowledge about Down Syndrome, trying to make connections of who I had met, knew, knew of, where could we go? Who would give us positive feedback, information to best support my husband and I moving forward in the pregnancy. This was interrupted by the doctor with “you look like you’re about to lose it”. I stared at him and replied “I’m just trying to process what you’ve just told us”.
“Now, treat this like a business lunch, don’t talk to each other about what you’re thinking or feeling. Order a nice meal, enjoy it and then, after that, each of you let the other know what they are thinking”. I could go on, but I think you get the picture about that doctor. 

We had a divided response from family and friends. For the most part they were amazing and I will be forever grateful for their love and support. However, some found the diagnosis very difficult to come to terms with mostly due to their outdated views of T21 and fought, pleaded and begged us to change our minds (the same people now, who love him with all their heart). Then, there were others who thought that it was their duty to tell us how THEY felt and that if we didn’t agree with them then, we obviously weren’t thinking straight, hadn’t thought things through or weren’t making an informed decision. 

We were told:
“What about your other son, you really need to reconsider for his sake”
“This news is worse than my own baby dying in my arms”
“You’re a %&ing idiot for not terminating”
“I’m so sorry”
“I’ll pray that he doesn’t have ‘it’”
“I don’t think you fully understand what you’re getting yourself into, this will ruin your life and your family”
“I don’t know if I could do it but I think you’re amazing”
“I don’t think you have looked at all the outcomes”
“You are going to have to look after this baby 24/7 for the rest of your life and who is going to look after him when you’re long gone?”
“Wow! Really? Wow! We were in a similar position last year but everything was ‘ok’ our baby was ‘normal’ otherwise, we would have terminated”
“Are you sure?”
“Well you should have considered that this was a possibility due to your age?”
“Why are you the 1 in 10 that isn’t terminating?”
“OMG, that’s so terrible”
“So is it because of religious reasons you’re keeping ‘it’?”
“When did you find out?”
“Did you have an amnio?”
“You’re only looking at the positives! Of course these families are saying positive things, it’s their new ‘norm’, just like it will be your new norm”
“I’m surprised you’re going through with this as I thought you were a perfectionist and I didn’t think you would be able to handle a child with a disability.”
“They are only cute when they are little.”
“You’re such a strong / special / amazing person.”
“You’ll love your baby.”
“‘They are so happy!”
“It will be really tough, stay strong.”
“You’re so blessed. God doesn’t give you more than you can handle.”

I felt as though I had to justify my son’s life, defend him and fight for him not to be judged. The thing is, for anyone one of you out there reading this who has a child…do you not love them unconditionally? Do you not want the best for them? Would you not do anything to protect them? Do you not suffer when they suffer? Do you not rejoice in their laughter and beaming smile? Does your heart not burst with pride for your child? Do you not rush to their defence when there is an injustice? Do you not want to keep them safe? Do you not love your children equally? So why should I be any different? #lovedoesntcountchromosomes 

I googled and searched for Facebook groups at that time, desperate to connect with other families. I called Down Syndrome NSW but they weren’t able to connect me prenatally. Unfortunately, I didn’t come across the ‘T21 Mums Australia’ page then either which would have been such a comfort for me, especially in the middle of the night when I couldn’t sleep and felt as though I couldn’t breathe. I would cry for what felt like hours, my heart felt like it was being ripped out of my chest and my stomach in my throat. I would cry NOT because my baby had Down Syndrome but because of how he was already judged by those closest to us. I agonised over not knowing if my baby would survive the pregnancy, if he would be stillborn (because that apparently is not uncommon with T21 babies), if his heart would be able to cope once he arrived – if he survived (he was diagnosed at 19 weeks with a large AVSD and TOF like restriction on the pulmonary artery). Furthermore, how society would treat him, would he have friends or a girlfriend? Would he be ok long after we were gone? Would our eldest cope? How could I protect him, keep him safe from all the trolls out there?

It’s true what they say “Once your baby arrives you’ll wonder why you worried about the diagnosis so much.” For us, that was definitely the case. After all, he’s a baby! He did spend the first 4 weeks in hospital (NICU and PICU) and had surgery when he was 13 days old, a BT shunt to assist with blood flow. Soon he will need open heart surgery for a full repair on his heart. That scares the hell out of me! Do we know what the future holds for Lincoln? No! Just as we don’t know what it holds for Nate. The only thing I do know with certainty is that we have 2 boys whom we love and cherish dearly.
We feel so much more joy, love and happiness now that our little family of four is complete and as far as decisions go…we all have a decision to make and that is how we communicate, react, respond and treat one another. 

“In life we have no control as to what cards we are dealt but we do have control as to how we play our hand.” 

Stephanie, Lincoln's Mum

Celebrate T21 founder.

Originally posted to the T21 Mums Australia Network Oct 24 2017

photo credit: Barefoot Photography