Down Syndrome Diagnosis: Dear New ParentPosted: October 31, 2013 Filed under: advocacy, Down syndrome | Tags: Children, Down syndrome, Genetic disorder, hope, Love, Prenatal diagnosis 27 Comments
Dear New Parent,
If you have found this place, you may have just discovered that your baby has Down syndrome. You are likely standing at a fork in the road. Whether your baby has been born yet or not, you’ll need to make choices now, in action or thought, that will change you forever.
I don’t know you, so I will not tell you how you feel or what is right and wrong. I feel compelled to tell you something, however, because I don’t want you to leave this place alone. You are not alone.
What’s done is done. Down syndrome has entered your life and that will never change, no matter what happens down the road. For that, I consider us connected. No matter what the future holds, what twists and turns your life follows, we will always have that in common. You are not alone.
My baby was in my arms when I discovered his Down syndrome. In a flash, all I thought I ever knew fell away. I didn’t know how to continue. No one had written me a script. No one had told me what lay ahead. I thought I stood at the edge of a vast, terrifying wilderness with nothing. I was so wrong.
Instead, it felt more like shedding a skin. I shed old ideas, thoughts, assumptions that I had accepted as truth, only to emerge a truer, clearer self. Shedding that skin was intense and painful for me, yet so necessary in order to reveal the next person I would become. I had no script because I wasn’t meant to have one. I was writing it as I went along and each time I shed a new skin, I add to my narrative. I’ve only been at this for a short time so far; I have a lot of work ahead of me, that I know.
There is light and darkness, hope and fear. Fear grew in the shadows and whispered doubts in my ear, that I was not enough, that I couldn’t do it, that I was not strong. Some doctors and professionals will peddle fear. Don’t buy it. There is no future in holding fear’s hand, only looking back into doubts and worries.
Life isn’t easy. Life can be brutal, shocking, and beautiful. Don’t forget that life was like this before the diagnosis, and will continue to be afterwards. Early on, someone helped me by comparing getting a Down syndrome diagnosis to taking a single, brief glimpse into a crystal ball. Getting a diagnosis gives you that single glimpse, but you can’t hope to know what kind of hope, love, and joy is also swirling around in your family’s future.
I cannot tell you what the future holds, but I can tell you what I do know:
Your baby will be beautiful.
Your baby will be fierce.
Your baby, like every other baby, will bring a light to your heart,
break it apart, and mend it together again.
Light over darkness, and hope greater than fear.
No matter what happens, you are not alone.
I thought I stood at the edge of a vast, terrifying wilderness with nothing. I was so wrong.
Instead, it felt more like shedding a skin. I shed old ideas, thoughts, assumptions that I had accepted as truth, only to emerge a truer, clearer self.
So beautifully put. Thank you, Jisun.
Thank you. <3
Proud to call you a friend. This is really great! Beautiful!
The feeling is mutual, mama!
I feel like I dove into the ocean and drowned, and was reborn as a different mother. It seems there is no way to adequately tell those who end up on that boat that it is ok to jump in, that life is beautiful both here and there. The only place where it is not beautiful is that in-between place you go when you try to reject fate.
That in between, yes. But how does one know, how does one feel certainty in what is supposed to be? I guess everyone has to jump for themselves–how much I wish that perspective could be given away.
Beautiful. Loved this.
Thank you mama. <3
Couldn’t have been said better. I’m so glad I found this blog.
Thank you Lori! I’m glad you found me too, truly! <3
That was very well written, and I really enjoyed reading it. You show a lot of wisdom and strength. In many ways, you remind me of how my mom might have felt when she found out that I had Spinal Muscular Atrophy (SMA).
You, like my mom, have dealt with your situation in a very positive way, and I admire you for it.
Thank you. I really struggle with the language I choose to use when I write about my son and disability, so your words mean a lot to me.
You chose your language very well for this article. You are a very good writer.s
Just found your blog after googling for the Sephora issue and wanted to say hi.
Let me tell you, teenagers can be a pain the @$$. Right now we are dealing with: iPod volume turned up too loud, having to shut down wi-fi over night because she is staying up watching Netflix, arguments over which teen gets the front seat – she should because she is the oldest, how many times she can buy her lunch at the cafeteria each week rather than pack a lunch, how much should she save from her part time after school job and how much can she spend, whether she should pay for her own mani-pedi now that she has a job, what the heck is wrong with Miley Cyrus being naked in a photo, whether she is allowed to slow dance with a boy she likes at the upcoming dance and can she plan a trip to Hollywood to go star spotting. Oh, did I mention that she has down syndrome? Hardly seems relevant, does it :)
PS This is ALL going on right now. She just turned 18. Teenagers are exhausting!
Ha! I’m so glad you commented. There’s always the nunnery. ;)
That would actually be the perfect solution because she does love structure. Problem is, no boys, wi-fi or mani-pedis. She also wants hair extension to look like Beyonce. OK, maybe the nunnery.
Lol! I wanted hair extensions so badly at some point in high school. Then I saw what it takes to actually get them in and I reconsidered!
My son doesn’t have down syndrome, he has Noonan Syndrome. But take out the syndrome details and your recent article on The MIghtly could have been written by moms like me. I struggle to be honest on blogs about my journey because my family members, who love him very much, still don’t get it. They all seem to just assume that because he has “some” typical characteristics he’s just another three year old. They couldn’t be further from the truth. And instead of trying to understand they get tired of hearing about the constant medical issues involved, as if everything should just go away such that he pops into a typical child. It is a journey for sure!
Yes, it is a fine line to walk isn’t it? Acknowledging what feels different but at the same time not overblowing it in a way that ends up stigmatizing. I can only think that continuing to be honest will eventually help people understand. Thank you for visiting! xoxo
This is so beautiful! I loved reading this. My daughter is 4 now. We have been on this amazing road a while. But I will never for get that feeling I had when I got that phone call. It certainly changed my life for ever. Many doctors asked me if I wanted to terminate my pregnancy because of her diagnosis. But I never once doubted to say no. Teach them that just because I was a young single mother did not mean I would give up on my baby. Because that is what she was and still is to me. My baby. And like you say it really did feel like shedding a skin. And the skin that comes after every shedding keeps getting stronger as well as the hope. :)
Thank you! All my best to you and your daughter. xo