A couple weeks ago, I was reading some chats on pregnancy message boards and there was a decent amount of talk around genetic testing. I went back and looked at some older posts (from earlier chats and birth months) and found SO MANY people who received a positive result for Trisomy 21 and terminated. It made me feel sick to my stomach. I’m not naive to the fact that this happens, but when I read about it so many times, it was like a punch to the gut.
I felt defeated and motivated to do more all at the same time. Where do I go from here?! Maybe off the message boards to avoid seeing these posts entirely? …or maybe not. Maybe I stay.
These messages are really hard for me to read. Not because I don’t think women should have the option to do what is right for them, but because I think so many women make these decisions based on fear, the unknown, and lack of support.
Do I stay in these spaces as an “advocate” of sorts or go and protect my heart?
A Down syndrome diagnosis can certainly be scary, but it doesn’t have to be devastating. I share Jade with the world as much as I can because I think the fear of the unknown is the worst thing. (Plus, it doesn’t help if the diagnosis you receive is dripping with a “doom and gloom” tone.) If you don’t have someone in your life with Down syndrome (and most people don’t!) then you wouldn’t know what to expect and you wouldn’t know how amazing this life can be.
So… I stayed. It was the only choice, really. If I can make a difference to just one scared mama by sharing Jade’s joy and love and light, then it’s worth it. ❤️
I am writing this for you to read on October 19, 2017. Sit tight. You’ll understand.
Congratulations on your new, beautiful baby girl! I am so, so glad that you had her at home, exactly like you wanted. Hold on to that image you have of her fresh new face on your chest the very first time you held her in your arms. In that exact moment, you knew. That moment will stick with you forever and it will always be a very happy memory.
You’re in the hospital now, and there are too many thoughts flying through your hormone-riddled, sleep-deprived brain. Take a deep breath. Jade has Down syndrome, but you already know this. You’re not scared because you shouldn’t be. You’re not sad because you shouldn’t be. People around you are scared and sad and that’s okay. Let them feel whatever they need to feel, but don’t let their thoughts consume yours. YOU know what is right. Listen to your gut.
Don’t Google. Don’t look up other people’s Down syndrome diagnosis stories (you will appreciate those more later anyway).
Just be.
Be with Jade. Be with Peter. Be with Lysee when she comes to visit. Be with your sisters. (Surprise! Christina will be there later today and Lauren will be back in two days. They love you so much). Be with Mom and Dad. (Mom was there yesterday because she’s the best and Dad will surprise you with a visit tomorrow. Again… love.)
The love in that hospital room is palpable and will be from this moment until you leave to finally bring Jade back home in three days.
She is okay– you don’t need to worry. The oxygen is temporary. The feeding tube is temporary. The bottles are temporary. It will always be hard to find a vein, but you soon figure out how to manage that. (Lots of water leading up to the poke and a rule of no more than two tries!)
Now I’d like to give you a glimpse into the future. This is where you need to pay attention.
The Jade I know now is four years old.
She is pure joy. She is warmth and light and happiness all wrapped up in her squishy little body. Her hugs are so full-bodied and genuine that they melt your heart every single time. She is the best snuggler and sometimes snuggles so close that it feels like she is trying to merge her body with yours. It’s a magical feeling.
She is healthy! You don’t need to lose sleep wondering if she’s going to make it– she will. There is no reason to think that she won’t, but those intrusive thoughts are real and hard to handle. Find a therapist and talk it out.
Jade is doing SO well in school!!! Turn off all of your worries about acceptance, inclusion, and having the right support team. You and Peter landed your family is the greatest spot you possibly could. All of your girls are absolutely thriving in school! (By the way, you have another daughter now… Congratulations! She’s awesome.) Jade’s team is amazing and she has had six of the dreamiest teachers you could possibly imagine. You literally cannot even imagine right now how amazing her teachers are. Not only that, but all of her therapists are incredible– they are so knowledgeable, professional, and fun! Some of them become your friends. But most importantly, they all love Jade a lot. They love her and they push her to be the best she can possibly be. They all share your goal of her being independent and included. They work every day to help her meet her potential (which is limitless!)
Jade has brought nothing but positivity to your life. You have met so many amazing people you wouldn’t have met if Jade did not have Down syndrome. And you have found a purpose– advocacy is your jam. You love to shout her worth (and the worth of everyone with Down syndrome). You love to educate about Down syndrome. You thrive on talking about Jade and encouraging people to ask the uncomfortable questions. You answer them with grace. You are still finding your way in the advocacy world, but you have a feeling that big things are coming– and it is so exciting.
So I’ll leave you with this… everything is going to be okay. In fact, it is going to be more than okay. It is going to be wonderful.
Go snuggle that baby girl. Cry if you need to (hormones are crazy!), but don’t dwell on the unknowns and the what-ifs.
Get some sleep and rest assured that this is the life you were meant to live. I have never been more sure of anything.
You have been blessed more than you could possibly imagine.
Star-Eyed Girl 