When we found out about the high probability that our baby would be born with Down’s Syndrome, me and my husband spoke about how we didn’t want people to feel sorry for us. This wasn’t because we “got there” really quickly. I was really not ok with his diagnosis. I was trying so very, very hard to stay positive about meeting this baby. I was trying with every ounce of my strength to accept he wasn’t the baby I thought I was getting. I was grieving. But I still didn’t want any body to feel sorry for us – No pity, no condolences, no sorrow. I really didn’t have the head space to process any one else’s emotions about my baby. I was still having the baby I had grown and loved for eight months, who would be cherished.
My pregnancy overlapped with the pregnancies of six other friends. I would be lying if I said that wasn’t hard. Back then, before I knew Aidan, I did wish that I was getting a baby like them. A baby with the right number of chromosomes, who wouldn’t need surgery when he was born. But not for one second did I begrudge a moment of their happiness. I was still so thrilled about all their bouncing gorgeous babies. I still wanted to hear the updates, I still wanted to see their photos, I still wanted to be treated normally.
There is no right or wrong approach to telling family and friends when you’ve heard that your baby will or does have Down’s Syndrome. Me and my husband approached it differently ourselves. He didn’t tell anyone at first, except maybe a few people he saw day to day. When he did tell them, he told them face to face. I told everyone I spoke to regularly, as it was happening. But I didn’t say it aloud; Whenever I tried to say it, I would start crying and choke on my words. I told everyone over whatsapp or by text. For me, I wanted everyone to know so I could separate out the “bad news” from the birth of my baby but my husband wasn’t ready to talk about it. We each process in our own way, and that is OK.
I think the reaction you get from your friends and family has a big impact on how you process the news. Most reactions we got were positive, and it really helped me to realise that maybe this was not the tragedy I initially thought it was.
Can I interject now to say, I have a really excellent bunch of people around me. My friends and my family really are truly excellent. They were concerned about how we were feeling. They asked was there anything they could do to help. They were still excited to meet our boy. They thought he’d be special and we’d make great parents for him. They still sent pictures of their beautiful little babies. They said everything we didn’t know we needed to hear. They were there for us.
So what do you say to someone who has just found out their baby has an extra chromosome? Well, I don’t know what another mother might want to hear, but here are some of the words that found comforting;
It’s going to be OK. You planted some seeds you thought would be roses, and when they grew they turned out to be tulips. You’re just getting a different type of flower.
Oh Máire, you and Simon are going to be so great. One less unknown at this stage must be something of a relief. You can start planning and getting things ready for him now. Its been such a tough journey for you guys, and him already although he’s not even aware of it! He’s so lucky to have you as parents. I can’t wait to meet him.
Aw Máire, he will be perfect either way so just pleased he’s doing ok!
The poor little munchkin having to go to surgery straight away – like you said you have the best surgeons on hand – he is a strong little tike, we’ve seen by the way he kicks and punches you from inside – he is a fighter. Regarding the high chance of Down’s Syndrome, this doesn’t matter you just need to focus on his recovery and all will fall into place. He is surrounded by so much love, bet little Tom won’t let him out of his sight. It will be so sweet to see them together and nothing else will matter.
Uncertainty is always far worse than knowing. He’s going to be one well loved and lucky little boy with you and your family. The op and NICU stay are going to be really tough, but I cannot wait to meet him once he’s home!
Máire, I appreciate you telling me this news. It must be a very challenging time for you and Simon. Whatever happens, it will be your little boy and you’ll enjoy lovely moments together. Just know you have people around you to support you and your family, and to talk to when times are hard. I’m sure you’ll be a brilliant Mum. Stay strong, sending you lots of love.
And so, to all our friends and family, who have shown us such a tremendous amount of love and support, you really are an excellent bunch of good eggs. We are really lucky to have you in our lives. And to all the beautiful new babies, I am so glad Aidan already has an inbuilt set of friends who will always just know him for who he really is.
Me and The Little Fire 