This essay was published on Huffington Post: From One Parent to Another: 5 Tips on Having a Child with Down syndrome
We are now 6 years into parenting a child with Down syndrome.
For those of you who are new to this blog or just meeting me and my family now, I’ll tell you this: welcoming the presence of Down syndrome into our lives, as expressed by our daughter Moxie, was not easy for us. For myself as a person with a disability, it was particularly difficult, because I was making the choice to bring her into the world, knowing full well that she would be facing discrimination and prejudice, much along the same lines that I have.
We are 6 years into this now, and while much of the initial angst feels silly to me now, we have learned some things that might be useful to other families. Here they are:
1.Your child is always your child first
When I told my beloved late Grandmother that Moxie was going to come with Down syndrome, she paused then said, “oh but she’s your baby, and you’ll love her, honey.”
That was so true, the truest thing I’ve ever heard about this experience. My child with Down syndrome is my child. I will always love her. In my marrow, to my core, she will always be my precious child.
The love that I feel for her is like a lens through which I see her. I think most all parents of children with Down syndrome find a similar lens when they first meet their children, and many are surprised by that.
“This is my child! I love my child! My child is awesome and Down syndrome is not really a big deal – but my beautiful child IS!”
It’s almost as if parents suppose that their child will be so alien, coming with Down syndrome, that they won’t be able to recognize their similarity with their biological offspring.
2. Your child will look more like you than others with Down syndrome
For some reason when I was pregnant with my daughter, I would look at adults with Down syndrome on the street at a litmus for what my daughter would look like, act, behave, be. When you think about it, this is pretty ridiculous.
I mean, a child with Down syndrome only has an extra copy of the 21st chromosome. That is it. Every bit of their DNA is coming from their parents. That means that their eye color, the wave or fullness of their hair, the shape of their face, the curve of their lip – it’s all coming from their genetic makeup – YOU!
The only way that Down syndrome expresses itself physically – and this is not even uniform – is through height, ear shape, eye shape, nose shape, eyebrow length and the inside of their mouth. So if you are expecting a child with Down syndrome and want to know what your child will look like, take a look in the mirror and reflect on your family photos. Your child will be more like Aunt Sally than they will ever be like the guy with Down syndrome on the street.
3. Your child will always have Down syndrome
“My child just happens to have Down syndrome!”, “Down syndrome does not define my child!” and other such declarations met me when I joined the Down syndrome parent community.
As a deaf woman, I know that I do not “happen” to be deaf, and I know indeed that deafness does define a part of who I am. I am Meriah. I am deaf. Part of my identity is very much entwined with the way that I hear (or don’t hear) the world. This is no incidental thing! It affects my every relationship, social interaction, employment. To mitigate this denies both the beauty and struggle that are a part of my life.
My daughter has Down syndrome. It affects every chromosome in her body. She grows, acts, thinks, speaks and processes as a direct result of this, and the world sees the physical manifestations of her extra chromosome and has thoughts on it. She can lean in to what is a part of her – like my deafness is a part of me – and feel pride in what that means to her and to her tribe. Or not. But the fact that it is there is inescapable.
Down syndrome has always existed in the human family. It is not some freakish mutation of a gene. It has a rightful and useful place in the diversity of the human experience.
Pride being more powerful than shame, it makes sense to me to teach my daughter that she has a right to be here. She has contributions to make. Down syndrome can and should define her. Her presence is as necessary to the world as the star shine is.
4. You will change
My brother just died, a victim in a senseless robbery. He died a horrible death, shot multiple times and ravaged by infections. He was in ICU for 3 weeks, first in a medically-induced coma and then in a natural coma, declared brain dead and removed from life support.
That was tragedy.
That was and is almost unspeakable suffering on the part of his children, wife. Of my mother, me, my children, my husband.
When I think of how I wrapped myself in angst after my daughter was found through amniocentesis to be coming with Down syndrome, it almost seems like an affront. Like, how could I have been so upset with a life, an actual living being that was making it’s way into the world through my body? That was not a death. That was – and is – LIFE.
It’s clear with time that the grief that I felt regarding Down syndrome and it’s presence in my child, and that I know other parents feel, is in part to do with fear of the unknown, of prejudice against Down syndrome. “Prejudice” means to “pre-judge”, it is a preconceived opinion that is not based on reason or actual experience. This is real, and it needs to be addressed. We need to help people understand what Down syndrome actually is, so that these preconceived opinions which are not based on reason or actual experience will cease.
But let us remember the difference between grieving a life and grieving change.
Some people also talk about the “death” of expectations, dreams and visions of their children with Down syndrome, when in reality they are only talking about the shift that occurs for all parents. All parents need to align their ideas of what parenting is about, their expectations, dreams and visions of their child, with who their child actually is.
Let me repeat that: ALL parents need to align this, ALL parents will shift from what they thought would be true with what is true.
Parents of children with Down syndrome simply go through that process before other parents do.
5. Be prepared for anything
Riding on the heels of saying that all parents need to align their suppositions on what parenting is about with the reality of who their child actually is, lies another universal truth: you need to be prepared for anything as a parent.
Parenting is a ride, and parenting a child with Down syndrome is no different. Your typically-developing child might have health issues – and your child without Down syndrome might, also. Your child with Down syndrome might be ugly or gorgeous – the same goes with other typically-developing children who are also only working with the DNA you give them. Your child might be talkative or might be speechless; might be paralyzed in a diving accident or might be blinded by an explosion. Your child might be a marathon runner or a soccer player.
My point is that you don’t know. You really Do.Not.Know. You don’t know any of this for your typically developing child, just as you don’t know any of this for your child with Down syndrome. If you leap into the parenting gig with expectations that you are in control and that you can prevent disability or produce a certain child, I hate to say it but you are headed on a short course to a hard fall.
Parenting is partly about playing with the hand you are given, and partly about the choices you make with that hand.
And not all choices are yours, as your child is their own person.
Your child is coming through you, made of components that you gave them, but they are not you. They have their own lives to live, choices to make, dreams to fulfill. They will go places you won’t, not even as Gibran says, “in your dreams” because “they are sons and daughters of life’s longing for itself.” Your job, our job, as parents, is to provide a stable bow to let the arrow of their lives fly.
With or without Down syndrome.
So be prepared for that arrow to fly.
The essays that I wrote (linked below) are testimonies to pieces of those processes for me, and I am sharing them again here in the hope that some part might also resonate with you, might be helpful and allow you to realize that you are not alone.