Dear 2016 Me,
You are about to go through the hardest labor you can imagine and give birth to your long awaited son. After minutes of silence, you’ll hear crying and exclaim, “My baby! My baby! Oh my God, that’s my baby!” You’ll be on heavy, heavy drugs and the room will spin and the lights will be blurry and voices muffled. An odd atmosphere...through the haze you’ll see weird looks on all the staffs’ faces. Why did they look like that? Could you hold your baby now and could they all leave, please and thank you?
There’ll be an awkward hush...All Down syndrome moms know this hush that falls upon the room. You’ll be allowed to kiss your boy’s cheek and off they’ll leave with your baby?! WHERE WERE THEY TAKING HIM? Why couldn’t you move any part of your body but your mind raced quicker than ever? Were you strapped to the bed???
No, love, you were on heavy drugs, remember? Keep up with me here! You’ll fall asleep in the recovery room and about three hours after you give birth, three women will walk into your room.
The three women will surround your bed and hover over you. You’ll be completely alone with them. The neonatologist will say, “Your son is in the NICU but he isn’t doing well...Unfortunately, we’re certain that he has Down syndrome...It’s OK...You have options.”
You’ll start crying. You can’t even see your baby. You can’t HOLD your baby. Was that hell? You’ll be sure you had died right there and gone to hell because it’ll be pure torture. Hearing that your baby wasn’t going to make it, after waiting years to have him, and not having him or anyone else to cry into...That is hell. You’ve now been through hell but I promise it gets better...After it gets worse. 6 hours after you give birth, you are finally allowed to go to the NICU to see your baby but you can’t hold him. You can touch his foot, though. Now more doctors are surrounding you. All you see is a blurry mist of your mint green gown and a blue fog of scrubs. This time everything is blurry because you’re crying. You’re crying because you were witnessing your own child dying. He’s hooked up to a thousand machines and you can’t even hold him. Oh momma, I’m sorry but that will never not hurt you. It will kill you every time you think of it. The next part is the worst, so brace yourself. “We took an ultrasound of his heart and he has what’s called Atrioventricular Septal Defect, or AVSD.” You’re gonna want to remember that. You ask, “What the hell does that mean?!” As if swearing and raising your voice will make this nightmare hurry up and end already. “It means he has a hole in his heart.”
And there is it. The end of everything. Your world will crash down into your lap and you will cry more tears in those minutes following that diagnosis than you ever have or ever will. You will look at your son through the tears but barely see him because the tears, God they just won’t stop. Your own heart will feel like it too, has a hole. You will wish more than anything that you can trade places with your son, no questions asked. You’ll feel a physically debilitating pain in every cell of your body, as the air is taken from your lungs in order for the tears to flood down your face. You will feel what it’s like to die. But you won’t. And neither will he.
Dear 2016 Me,
Your son beats the damn odds. OVER and OVER and OVER again. He lives. Oh, but he does more than just that. He thrives. You need to push through to see what I’m seeing. Sometimes DOCTORS MAKE MISTAKES, MISJUDGE SITUATIONS AND UNDERESTIMATE BABIES LIKE YOURS. Trust yourself. You’re the greatest mother you’ll ever know. You can do this. Ian can do this. He already has.
Who cares what the people in your past will say when they find out you not only had a baby, almost died in the process, AND Ian has Down syndrome? WHO. CARES. Little do you know, you have just been blessed with an angel. You’ve immediately been accepted into the VIP club known as “moms with a child with Down syndrome.” Or “Gene Rockin’ Moms”
Frankly, you’ll be too busy adoring Ian to even notice Ds until someone brings it up. Ian is the exact reason why your soul urged you to volunteer for NWSRA during high school. You never knew why. But I know why. This happened for a reason. You were made to be this boy’s momma. YOU HAVE WHAT IT TAKES. Don’t you dare be afraid because society says you should be. You’re not “too young to handle this” and Ds is not “hard”. Do not trust people simply because they’re wearing a name tag or a stethoscope. Do your own research. Learn from other moms like you. Trust yourself more! Oh, and prepare to love your boy with the deepest unconditional love you will ever feel. It’s gonna take a lot more than Ds to scare you.
Bio: Megan is a first time mom to her little love bug, Ian, and a fur mom to Lily and Daisy. She loves to volunteer, cook, garden, foster, and spend time with her family. She is vegan for the voiceless, and a believer that every mom who thinks she has the cutest kid in the world is right, including herself. Megan lives with her husband, Mario, Ian, and their pets in Illinois.
This letter is part of DSDN's October Down Syndrome Awareness Month campaign. We asked our members to write a letter to themselves during the time they received the diagnosis. Do you know a parent with a child under the age of 4 who needs connections and support? Let DSDN help and get started here.