I gave a presentation last week at hubby’s school. The students were bright-eyed and eager, their questions genuine. I talked about Down syndrome and the various changes it has brought to our lives. All the while, Rowenna was her pleasant, perky little self and I think overall the students took away a positive message.
Their teacher asked two questions that I was completely unprepared to answer. She pointed out that I seemed to really accept our life and asked how we came to feel that way. She also asked if we felt like Down syndrome is a blessing in our lives since most parents of kids with special needs seem to believe something along those lines.
In the moment, I stammered out some answer and from the way we were able to move on from the subjects I suppose I gave an adequate response. But a week later, I’m still thinking about those two questions and wondering what the honest answers are.
So to start: do I really accept this life? And if so, how did I get here in 10 months?
This leads me to a long-held belief that there is a huge difference between accepting something and liking something. It also leads me to another of my long-held beliefs – you need to choose your battles and futility is a complete waste of time and emotional energy.
As I have mentioned here on several occasions, I fully accept Rowenna’s diagnosis. For a while that acceptance was a very base-level acceptance: I accepted that she has an extra chromosome in every cell of her body and there was nothing to be done to change it. Then came another level: I accepted that Down syndrome is a part of who she is and our lives would not be what we expected. Right now I’m in a different place of acceptance: I accept that her future is what Rowenna makes it and has pretty much nothing to do with any of the dreams I had for her…and this would have happened no matter how many chromosomes she came with.
That’s what I talked about with the kids, this idea that a Down syndrome diagnosis causes this sort of acceleration of parenting lessons. Eventually I would have learned that kids can get sick or kids have various limitations and strengths. I learned that lesson hard and fast after about 48 hours of motherhood. Eventually I would have realized that my dreams for my baby had nothing to do with my baby and everything to do with me. That’s the lesson I’ve been slowly working on for 10 months, but I’m learning it now instead of in pieces along the way. I’m learning it with a baby in my arms when most parents are still dreaming of PhDs and a gaggle of grandbabies down the road.
But am I ok with the diagnosis? I suppose that depends on what you mean by “ok.” If I could take away Down syndrome, the heart surgery, the limitations, I would. This is a touchy subject in the Down syndrome community but I’m not going to lie about how I feel. Yeah, I would take it away. I don’t think that changes the love I have for my daughter. It just means that like any parent I’d love to remove obstacles if I could. I don’t see Down syndrome as the thing that defines Rowenna. I have full confidence that the combination of hubby and myself would produce a sweet, happy, and curious soul no matter the chromosomes.
Anyways, this teacher felt that I seemed rather at peace with our life. For the most part, I am. It’s all but impossible to look at Rowenna and not feel a little spark of joy. There are moments of sadness from time to time. When I see a friend’s baby practically skipping milestones because she’s developing so quickly I sometimes wistfully wonder if Rowenna may have been the same way. Heck, when I read about another kid with Down syndrome doing something Rowenna can’t yet I get a little wistful. When I see my mom with Rowenna I get a little sad that I may never know what it’s like to be a grandma myself. But these moments are fleeting and day-to-day I love my girl and I do feel peace.
Not much else to feel, really. I refuse to spend my life bitter about Down syndrome. I’d rather just love Rowenna and take the rest as it comes.
As for the other question: do we consider Down syndrome a blessing?
Here’s where I’ll be unpopular again with my fellow members of the Down syndrome community.
We don’t see it as a blessing, nor do we see it as a non-blessing. It just…is. I’m a balanced carrier. There’s a high chance of having a child with Down syndrome every time I’m pregnant. There’s also a high chance of subsequent children having my blue eyes. I don’t see Down syndrome as a blessing any more than I see my child having my eyes or hair or sense of humor a blessing. It just…is.
I will probably write a separate post one day about how I feel this “blessing” language actually segregates the special needs community even further from the rest of the world. In short, there is nothing special about my family. We are just like you. Rowenna is like your children. We just have this Down syndrome thing going on, too, and when people say things like we’re “special people” because of Down syndrome or we’re somehow doing something they could “never” do it serves only to separate us further, to drive a wedge where there need not be one.
But that’s not to say we haven’t seen blessings in our life since Rowenna joined us. We have experienced boundless love and overwhelming support. We have been surrounded by expert doctors and caregivers who treat Rowenna as their own. We have been the recipients of well timed and much appreciated generosity.
Rowenna herself is a blessing, but she would have been a blessing without Down syndrome, too. She would have been a blessing no matter what “package” she came in.
So there’s my stake in the ground. On the journey toward acceptance, on a journey toward being ok. Comfortable where I am right now, happy with my child, looking forward to changes in the future.