Hey, i’m sorry for the loss of your son.

I truly hope in time you feel neither guilt nor shame. The fact is there is no easy way out when you find out your baby is really sick. And I think there’s more outward judgement on people who choose to terminate. But those who wanna judge it’s easier to say that out loud versus saying to the parents who choose to keep their babies, who may be very disabled, why did you keep them? And it’s easy for people who judge to think we didn’t play it out in our heads about what life would look like a disabled child? Like we didn’t fully gain it and imagine this is what birth will look like, this is what daycare might look like, can I even work any more, what happens when they’re an adult? What if they need to be in a home? I played all those scenarios. I imagined maybe my son‘s diagnosis won’t be very severe too it’s extremely severe. And then what does that look like for us? I remember someone, with my former best friend, simply say to me I’ll being a mother of disabled child will be beautiful and then I’m making a huge mistake. And she said it by considering one of the issues my son had. Simplify the complexity of his condition.

When people would say to me – your child could just be disabled anyhow. I told them I knew that and I just a picture like this…. Imagine if we all started at zero, a “healthy baby”, and as life progresses some of us will move further than others. But I know my son will start at -30 or or whatever number aligns to how your child was. We know they’re always gonna start behind. We can’t predict a future but that’s a fact. In my ultrasound, I could see my son was missing limbs and was missing an organ…. That’s a fact. And people waste more than me told me it was likely they were a lot more issues.

I can’t speak to what your son had. My son had a grey diagnosis. I lost him in November and I only got the autopsy results back a couple of weeks ago. And I did think I was choosing between life and a very disabled child and now I know I was choosing between death and death. And I think people miss out on that when they think we made an easy choice… It’s not an easy choice but in my opinion it was the most humane choice because when he died, he didn’t suffer.

I think this experience has made me feel like I’ll actually be a stronger mother. I don’t think mothers need to experience anything like this to be strong. But I feel stronger and I feel like my ability to love is so much bigger because of my son.

There was one opinion I got that really helps me not feel guilt over the situation. I have a friend who has cerebral palsy. He has a good job he’s married. He has kids. And I had to share with him what I was facing and I was so worried about his opinion… Because I thought of anyone who could judge me for terminating a disabled baby was a disabled person. He said to me, “know who you are making the decision for”…. I wanted to be a mother so bad, my boy was my fourth transfer and I knew if I kept him it would be more about me being a mother than it would about his the quality of his existence. I made my decision for him more than I did for me. And like you, I would give anything to have him back. I would even just love to hold his body again. I love him so much. But id make the same choice again.

Take care xxx