Written by Jennifer Lynn
It’s October 1st, 2020. It’s starting to feel like Autumn. It’s a Thursday and you are stuck in the house again because of Covid. It’s also ROCKtober, but you don’t really know what that means yet.
Today is when your journey begins. The day you will remember for the rest of your life. Today you will get a voicemail from a genetic counselor. Because of covid, they call and leave a message instead of have you come to their office for a visit.
Remember a few weeks ago when you had that blood work done, you know, the one you had with all the kiddos. Do you remember the counselor asking you if it was ok to leave a voicemail with your results. You said, “sure that would be just fine, then we don’t have to play phone tag.” No big deal right? Boy, was that the wrong answer to give.
The voicemail is very short and to the point. “Hello Jen, this is ____ calling from the Genetics dept. at Aurora. I’m calling with your test results. I’m sorry to tell you, but your results are showing a 98.7% chance that your baby will have Trisomy 21. All your other tests came back normal. Please give me a call back and we can discuss your Options moving forward. Once again, I am very sorry!” CLICK!!!!! All i heard was I’m sorry……Trisomy 21 ….Options and CLICK!
You call back and he repeats everything again to you. Then he asks you if you would like to confirm the down syndrome with an amniocentesis because the genetic blood test is only 99% accurate. You say yes and set up the appointment as soon as possible. Then he discusses with you your options, over the phone. Heavily emphasising on TERMINATION. All you hear is termination repeated over and over and that you need to have the amnio as soon as possible because your window to terminate the pregnancy is ending soon. Your head is swirling and you can’t hold it together any longer. You tell him you have to go and then call Brian and tell him everything. You tell him that they set up the amnio to get 100% confirmation. You discuss the risks assosiated with the amnio and then something clicks in your brain.
The fog clears for a brief moment and You both realize that no matter what, it doesn’t matter. This baby is yours and God hand picked her (yes, it’s a girl, you were right) just for you. You call back the doctor’s office and the nurse berates you for not doing the amnio, because the only way you will know if your baby has “Downs” is by doing this test. And the doctor (not your regular OB but your Specialist) will need these results to determine your next course of action. You politely decline again with tears welling up and a huge lump in your throat and you say, “it doesn’t matter, whatever the test tells us, it doesn’t matter. This is our baby, no matter what.” The nurse then says “I can’t cancel this appointment until I talk to your doctor. You say “that’s fine but I will not be showing up to that appointment”
That night you will open up your email and find a note from your regular OB. It reads “Jen, I just saw the note from genetics; please reach out to me with any questions. If you would like an earlier appointment with me, I will fit you in whenever. I’m here if you need to talk further.” So of course you call and set that appointment up. When you walk in, the clinic greeters have to call up because Brian is not allowed to come in with you. She calls up, the receptionist says no. Your eyes are filled with tears and there is fear in your voice as you tell the greeter that you are discussing a very sensitive issue about your baby and that Brian needs to be there. She calls again and speaks directly with the doctor who says of course.
When we arrive at the window the receptionsit will inform you that they only allow one person at a time in appointments and Brian will have to wait in the lobby. You’re going to have to explain again that you just recieved some sensitive informaton and would like for him to be there with you. The receptionist huffs off and the nurse comes out and apologises for the receptionist’s crassness, and that she didn’t know. I just want to tell you that the statement “she didn’t know” was a horrible excuse. You never know what’s going on in someone else’s life. Just looking at you was evidence enough that you couldn’t do this alone. Let me just tell you, this wasn’t the first time that your heart shattered because your support system couldn’t be there with you to hold your hand, rub your back or speak for you because you couldn’t find the words or they just wouldn’t come out or just to give you a Kleenex.
As you wait for the doctor to come in, you literally felt like you were in another dimension. Anytime anyone spoke it literally sounded like the teacher from Peanuts. The doctor enters and as soon as she says those words, “I’m sorry,” you literally let go and breakdown. She talks a bit about her daughter who also has a “chromosonal abnormality.” Tells you some pointers on how to keep your sanity with all the appointments. You discuss the decision to not do the amnio and your reasons why. You get home and read your notes from the appointment that day. The Dr. wrote, “Feeling emotional regarding likely Down syndrome for baby. Plan to continue pregnancy, initially desired amniocentesis, no longer desires amnio as definitive diagnosis would not change their family plans. Primary support system comes from Church/faith/family.”
You don’t know how true that last statement is….. “Primary support system comes from CHURCH/FAITH/FAMILY. I know how scared you were in the beginning. But honestly all of it could have been avoided if the words that people chose to speak to you were positive. You see, Down syndrome to the outside world is a scary thing BECAUSE PEOPLE ARE SCARED OF WHAT IS UNKNOWN TO THEM. The phrases, “I’m sorry, termination is probably for the best and it probably happened because of your age” are what put fear into you. But the amazing thing about that last sentence from your OB “Primary support system comes from Church/Faith/Family” is that without those 3 that fear would still be with you.
RIght away when you talked to those close to you, you were filled with so much love and that UNKNOWN slowly washed away. Yes, there was still fear and sadness but not because of those words “Your baby has Down syndrome”, but because you didn’t want your little girl to ever feel pain. The more you talked to your friends and family the more you were able to enjoy the beautiful life that was growing inside you. The amazement came when you realized that out of all the parents in the word, God chose you to bring this little human into the world. He trusted You with her precious life. Your little peanut is a beautiful, amazing gift from God and there is nothing to fear. She is going to change you in ways that you don’t even know. She will teach you to be stronger, happier and she will introduce you to some amazing other humans.
What you don’t realize right now is that the other side, the side when you meet Mylah, (sorry cats out of the bag with her name) it is going to be one of the most beautiful moments you will ever know. All that fear, all those negative thoughts and appointments, all those negative comments from people that you thought cared about you will be gone, because Mylah is here. She will look up at you with her beautiful eyes and her little tuft of hair swaying in the breeze and nothing else will matter.
The way that she smiles with her whole body is going to melt your heart EVERY TIME. Her cute little toes and how they separate like little monkey toes will make you giggle EVERY TIME. Her cute little belly button will make you smile EVERY TIME. Every milestone is going to be that much sweeter knowing how hard she is working to get there. Declan, Ari and Emmy are going to love her so much and protect her every second of everyday and you will have nothing to worry about.
I guess what i’m saying is that it’s not an easy journey. It’s terrifying at times and yes it’s hard. But the other side is truly beautiful and your family, your wonderful friends and your God will be there with you as you embark on this new journey with your amazing little girl. Brian will be an amazing Daddy and don’t forget to ask for help because he really is the greatest. You may not feel like it now but you are going to become such a strong momma and one of Mylah’s biggest cheerleaders. Hang in there because she will be here sooner than you know (Hint: not April fools)and the world you live in will be so much brighter because she is the light you’ve been waiting for.
Love, Hugs and Blessings from one Lucky Momma (You)