I have never been a fan of just “googling” something to get an answer I need. I know that any old dummy can put any old thing on the internet, kind of like what I am doing right now!
But when I had a baby, Google and I became very close.
Hey google, how many ounces of milk do babies need, and how often?
What temperature should a baby’s room be?
I had the baby, why am I still fat?
What the hell is a sleep sack?
Are my boobs supposed to be doing that?
These were all acts of I-need-immediate-answers-to-feel-better desperation.
Before Nicholas came, I was getting my baby advice from lots of different places. My six years of experience babysitting my four beautiful cousins certainly helped a lot. My friend had a two-year-old at the time, and she told me about all of her favorite baby products.
No amount of preparation could have prepared me for a Down syndrome diagnosis. In the six days before we had the genetic results confirmed, I had a lot of time to google things.
I remember feeling so ashamed of myself when I finally googled this:
What do I do if my baby has Down syndrome?
What. Do. I. Do?
That was how I felt. I was all alone on Down syndrome island, and didn’t know where to turn. I knew that I was mourning for some reason, and even though my husband was the only person I felt comfortable talking to at all, I didn’t want to bring it up to him. People mourn in different ways, right? I didn’t want to burden him further. Plus, I knew he was hiding his stress to protect me. I mean, he saw what I went through in that delivery room. He knew I was fragile.
I had some people telling me things like “oh yeah, my third cousins neighbors best friend’s mom’s sister has a baby with Down syndrome.” Nothing was very relatable, but even if it were, I wasn’t comfortable talking about it to someone I wasn’t extremely close with. Not in person at least! I couldn’t keep my tears in if I tried.
This is the main reason why I started this blog. I wanted there to be a safe space for moms to talk about their experiences honestly. I emphasized the word honestly because I wanted to hear someone else say that they went through a dark period of time where they felt lost and sad. I wanted everyone to stop telling me it was okay, and start telling me that the feelings I was having were normal, and that they would go away soon. I needed to see the light at the end of the tunnel.
I guess I wanted more than the search results gave me.
So, I know I can’t compete with google, and I am not claiming to be an expert on anything here, but here are some suggestions for what you can do if you find out your child has Down syndrome.
Let yourself feel all the feelings.
Pretending everything is fine and masking your emotions because you are embarrassed of them won’t help anyone, least of all you. I spent more energy trying to bottle up what I was feeling than I did enjoying my new miracle. It’s okay to be happy, sad, scared, angry, excited, or any other feeling. You are in charge.
Tell the people around you exactly what you need them to do.
My family and friends were amazing about this. They knew I was going through post-partum depression combined with recovering from a traumatic experience. They always said that if I want them to come over they will and if I want them to leave they will and they won’t be offended! Make your wants and needs clear, and don’t sugar coat it. If people want to talk about the Down syndrome with you and you’re not ready, tell them.
Don’t read statistics about Down syndrome and assume your child is going to experience everything you read about.
The first thing that I read was just a random fact page about Down syndrome. I read that the babies can sometimes be underweight and weak. The second thing that I read was a book that I ordered online. On the first page, the mother wrote about her son who needed a feeding tube. I cried my eyes out. That is not what I needed to read at that moment. All the things you read online are possibilities, not facts about your child. Does this kid look like he is weak to you? He is growing like a beast!
Don’t try too hard to be a perfect mom.
Extraordinary babies are given to extraordinary parents. You’ve already won. My son is now 9 months old and has been for days, but I still haven’t taken the fox pillow picture yet. See, not perfect. He will still be 9 months old tomorrow when I attempt the picture. We can’t win them all!
When you finally break down your barrier and start your heavy reading, read things written by other moms first, not medical experts.
Once I figured this out, I was in heaven. I could take my phone and scroll the lives of families all over the country in the middle of the night while I fed Nicholas. It was like I was going on a road trip every three hours, and meeting all new people. The amazing thing that I have found about the Down syndrome community is that most people are willing to share their story, because they want what we all want, for their child’s life to make a positive impact on other people.
Pick your confidant, and unload on them.
Whoever you feel is in with you, a husband, wife, boyfriend, girlfriend, friend, relative, whoever. For me, it was my husband. The ability to be so open and honest about this whole experience with each other has brought us so much closer. I had known him for six years when Nicholas was born, but somehow, I feel like I finally know him. We made ourselves best friends, but Nicholas made us family. My google search told me that this experience could break us up. Take that, internet.
Remember to take frequent breaks to just breathe. Your entire life just changed. You still have to take care of yourself. Use these moments to think about what you need, and how you can make sure you get those things. I accidentally went a whole day without eating when Nicholas was a newborn. In order to take care of your baby you have to take care of yourself!
What do you do if you find out your child has Down syndrome? That’s completely up to you. Don’t you forget it.