6 Lies I Told Myself About My Newborn's Down Syndrome Diagnosis
As mothers, we can often carry guilt and lies about ourselves. There is absolutely nothing new there. It is as real as the air we breathe and yet just as easily to dismiss.
We tried for so long to conceive our precious baby girl. I knew the truth about disabilities because of all my background in special education. I knew accommodations and modifications and early intervention. But more than that, I knew the love I could expect. I had personally comforted many mothers who previously had experienced the very same thoughts and feelings I had. All of these reassuring experiences came before Charlotte’s birth, and yet, I still found myself vulnerable to the trappings of these lies:
1. She’s a mistake.
The Mayo Clinic defines Down syndrome being “caused by a mistake in cell division.” Please know the information on the Mayo Clinic’s site is 100 percent clinically true and in no way intended, I’m sure, to cause pain to anyone. However, in my hurting heart, as I sent information about the diagnosis to loved ones, all I read was the word “mistake.”
The truth: Your baby is not a mistake. Your baby is a beautiful creation. If I had to compare my odds (one out of 700) I consider myself fortunate to have drawn my baby’s lucky numbers!
2. I did something wrong.
“Was I out in the heat too long?” “I knew I shouldn’t have eaten that lunch meat.” “I was too negative.” “I was so stressed out.” “Maybe if I had exercised more…” “Maybe if I hadn’t exercised as much…” I seriously beat myself up internally in the beginning over every single detail of my pregnancy. And I never led anyone on to that, which probably caused some pretty serious high blood pressure issues (but that’s another blog for another day). If I had a dime for all the time energy and amount of stress I spent over blaming myself for my daughter’s diagnosis… well, as Josh says, “I’d be making money in a weird way.”
The truth: There is only one thing to do. Love that beautiful baby you have been blessed with! I believe they are perfectly created. Seriously. Think about how deep that is. Perfectly created. Not moderately. Not, “Eh, he’s OK.” Perfect.
3. People pity her, or (almost) worse, me.
When we received the official confirmation that Charlotte Grace did indeed have Down syndrome, the first thought that popped into my mind was, “How will they treat her?” “They” meaning everyone we knew and loved. Would they love her the same? Would they be there for her the way they are for the others? How will they react when she does ____? How will they react when she doesn’t ____? Will they see me differently now, too? It was the most gut-wrenching of it all. I knew I would love her. I knew Josh and Aubrie would love her. But some foreign and strange part of me wasn’t convinced they would love her.
The truth: Yes. They do definitely love her. They don’t always have the right words. They don’t always know just how to react or questions to ask, or even if today is a good day for them to ask them. But they definitely, definitely do love her (and us). And that is all that matters.
4. People are avoiding us.
After the emotional roller-coaster of the birth of baby “Charlie,” there was a lull, a period after the announcement of her diagnosis that felt like a lack of communication by many family members and friends. We had chosen to send out an email. In the email we said we understood if people didn’t quite know what to say and that it was OK. Though I had an expectation (albeit, a silent one) that people would come out of the woodworks to show us support (and many, many did). However, I expected every man, woman and child to be at our doorstep and crawling through our windows to take over midnight feedings and diaper changes and bring in a massage therapist and a maid. But that did not happen. What was I thinking, right!?
The truth: It took me some time to understand, but I had not thought that others may have to go through the same grieving process that I did. We are so good at manufacturing an idea of the journey our lives should take that we often don’t realize we do it for other’s lives, too. When the lives of those closest to us don’t turn out how we envision… we grieve for them and sometimes that looks like silence.
5. I need to stop working.
This one was particularly difficult for me. Upon the delivery of Charlie’s diagnosis, I knew in my heart 100 percent I needed to quit my job. As an elementary school teacher smack-dab in the middle of a school year, I also knew in my heart 100 percent I needed to to return to work ASAP. Luckily, I was very fortunate to work for a school with wonderful (read: amazing), caring (read: loving), and flexible (read: generous) administration. They worked with me so I could teach two days a week and could be home with my girly to do therapy the other days. This was an enormous help and a true blessing for our family. However, I never could quite shake the burden on my heart that I needed to be with my girl all the time. I wanted to be with her more than I ever felt the need to be with my older daughter — how’s that for some mom guilt? I always thought Aubrie came out of the gates running, if you know what I’m say’n. Charlotte just “needed me more,” right?
The truth: Kids (all kids) are resilient. If you choose to go to work, find a caregiver you can trust to implement the therapy techniques with your little one. If you choose to stay home, love that baby and the workplace will be totally fine without you. Let go of the guilt either way.
6. I can’t be joyful and grieve at the same time.
Oh… this lie. This lie was the biggest of all. It was by far the hardest to overcome. I still struggle with it and probably will for a long time. It’s such a complex range of emotion. In the first group outings with friends and their kids, we would talk about Charlotte and I would immediately start crying. The only way I could articulate my emotions was to say, “Please don’t misinterpret my tears. I am joyful and I love my baby girl.” but I would always be afraid people would think we felt burdened by her. I was scared that others would never understand that we had joy, we were just grieving the life we dreamed for Charlotte. The joy we have for her is insurmountable. She was a gift to us after years of praying and we treasure her deeply. There is absolutely nothing we would change about her and that includes her having Down syndrome. But our plans changed. We planned for her to go to this school, and take these classes. We wanted her to complete Driver’s Ed this way and in this timing. We expected her to have typical dating experiences with the great big teenage years full of girl drama and utter disdain for her parental units. We thought she would grow up and move on to college, have a career and the American Dream… that was our plan.
The truth: Charlotte is our girl. And that means she gets to have her own life story. She gets to make choices and discover her identity. She gets to find her strength and talents and gifts. She gets to determine her faith. She gets to say when, and what, and if this school or that one. She will decide her path, her purpose, and her plan.
I believe this plan — God’s plan — is so much better than the one we could have ever dreamed for her.
A version of this story originally appeared on The Lewis Pride.