The day after we received the test results, we made an appointment with a dear friend of ours who happens to be the pastor that married us. I reached out to her the previous day feeling completely overwhelmed and alone. Until this point we had not told anyone that Stephan has Down syndrome, let alone that we had been waiting to receive this news for almost a week now
“You are going to go through the 5 stages of grief, cause if you think about it, you are in mourning for the dream of having a normal life with a normal child. And that’s okay.”
It was the biggest relief to hear this coming from someone else. I had been feeling so guilty for being disappointed at this result, who the hell do I think I am? I asked for a child and God provided, how dare I be so ungrateful. So I allowed myself to go through each stage in my own time.
Stage one: Denial.
Oh this stage hit me hard from the moment my body decided we are going to have this baby now. I was in denial about being in labour for the first 4 hours until the doctors confirmed it.
André and I were both in denial from the first moment the Paediatrician told us of the possibility of having a child with Down syndrome. We did not see the physical signs the Doctors where pointing out. We kept telling each other we don’t see it, as if to reassure each other. We kept saying how calm we feel about everything and that has to be God’s way of telling us everything was going to be okay. (And it was)
Stage Two: Anger.
We both felt rage at some point. Why is God putting us through this? It took us 5 years to fall pregnant successfully. In which we had one lost pregnancy. Haven’t we been through enough? Hadn’t we been praying hard enough? What could we have done to deserve this?
Stage 3: Bargaining.
Next, we vowed everything we had and more, and begged God to heal Stephan in some way. To miraculously cure him of Down syndrome. To have the Doctors tell us there was a horrible mistake and Stephan was completely fine. We would dedicate every hour of our time, we would give up drinking and smoking and swearing. We would live completely sin free if he could spare our little boy of this diagnosis.
Stage 4: Depression.
Random outbursts and breakdowns. Some at 3am when I was expressing milk to take to Stephan in NICU, some when André went to the shop for groceries. I couldn’t let him see how broken I am, how much the news scared me and how I had been blaming myself in some way for what went wrong. This is supposed to be the happiest time of our lives, and we have been hit with this news and we don’t know what to do next!
Stage 5: Acceptance.
This stage came and went. It still does to be honest. We have accepted that this is the family God has blessed us with and we are extremely excited to bring Stephan home. But sometimes thinking about schools and his future, I find myself back at Step 4 and having to work towards acceptance again.
But let me tell you, the only way to get to step 5 is by telling. The moment I shared the news with friends and family I broke the barrier of denial, I no longer felt anger, I stopped bargaining with God and started thanking Him, I decided to take this journey on one day at a time.
I accepted my boy and this journey for what it is: a little ExtraOrdinary.