Thursday, July 16, 2009

Owning it

Life interrupted. That's how it feels when Down syndrome is diagnosed.

I have yet to find a parent who, as Nick expressed in the previous post, hasn't felt like the world fell away at the moment the diagnosis hit. I have yet to find a parent who hasn't felt grief, sadness, anger or fear in that moment--and in the aftershocks that follow, sometimes for years.

It is so normal to have these thoughts and feelings.

But we have to move on. At some point, we have to reach acceptance of ourselves, our children and our circumstances. There is no other choice, unless we want to wrestle with how things are for the rest of our lives.

Challenges force us to reflect and grow. As each day passes, we learn more and more about ourselves, our children, about life. It isn't always the first thing that comes to mind, but each day, each experience moves us further into the process of learning to trust--in ourselves, and in the inherent goodness of the world--and to know our own power and resilience.

Even though challenges are accompanied by discomfort--even pain--they help us develop grit and substance, and help us frame our continually evolving perspective on life. As much as the high points, the lows are inevitable and necessary. It is all part of the journey.

Having a serious health crisis myself just a few years before Bridget was born, I'd already come to terms with acceptance of circumstance. I don't wonder why? any more. I don't think why me? why us? why this? It just is. And I may never have complete answers. I have to be okay with that and move on.

I can't embrace my life--myself today and all of the people I love--if I can't see it as it is and accept it.

Still, there are times when I start to feel sad, overwhelmed or guilty. And I try to consciously recognize that it is me getting in the way of myself. It is me getting in the way of my own happiness.

I know that a person can't be positive or uplifting all the time. It's just not realistic. A person can, however keep an open heart and mind, and be willing to entertain--and embrace--new ideas, new experiences and new feelings. A person can be open to finding a new sense of normal and then finding the good within it.

People will always wonder "what if?": What if I had more children, fewer children, a job, a different job, family in town, family farther away, hadn't married so young, hadn't waited to get married, did more, did less...? Would it have made a difference?

Any time I start to compare Bridget to other kids, or our life to the lives of other families, I remind myself that we all have our issues. As a family, we have (and have had) some pretty big challenges. Trying to make a place in our lives for Down syndrome, especially when it came along as part and parcel of our youngest family member, is certainly not the biggest one.

When I look at Bridget--really look at her--it all falls back into place. Yes, it is still hard to make sense of some of the aspects of living life upside down, but something is so very right about her and who she is. She's so happy, so completely adored. She isn't thinking for a moment, "Gosh, I wish I was someone else".

Sometimes I wish I didn't have the extra layers of responsibility, but I don't wish I was someone else--or somewhere else--either. All of the people I love, what I feel, what I've experienced and learned...that's what makes I plan to own it.


  1. Absolutely beautiful post.

  2. You are an inspiration to us all and a testament to a life lived fully.

  3. Lisa,
    You have brought me to tears once again with your complete honesty. I see so much of myself in what you write and think--we are kindred spirits for sure! I plan to own it too.
    Much love (and maybe even a high five for that one!),

  4. This is such a wonderful post, and applies to everyone -- it's so important to accept things and move along in life instead of questioning and stressing. This is certainly something I need to work on in my own life. Thanks so much for reminding me to step back and put things into perspective :)

  5. What a way to own it! Beautiful post. You are an inspiration.

  6. Lisa, your words really touch me, especially now as my family faces one of the biggest challenges ever. What a beautiful post. Thank you.

  7. I have to say, possibly because of the way I process things, I was not overwhelmed with grief at the time of diagnosis.I did not know ahead of time about it but I did know that it would not matter, I would want any baby. That doesn't make me better than anyone else. That doesn't mean that I do not struggle with anxiety, sadness and the comparison disease periodically and I do the same as you do to keep them at bay. Basically I recognize that life is the same no matter what the package, lots of suffering all around but also lots of joy and the ability to live a full life. All lives are useful in my mind right from the start- I love reading your blog because you are the closest to my own ideas that I've found! Thanks for putting them into words!

  8. We didn't know either, until Bridget arrived, that she had Ds. And that, for us, was the bigger issue. The world--as we thought we knew it--started to recede as we began to process Bridget's diagnosis. We felt like we were all somehow "different".

    It didn't get in the way of us seeing her as a beautiful & amazing little person and I am grateful for that.

    We were concerned, though, about what her diagnosis meant, and how it would affect her and our family. We were sad that we had reservations in telling others about her arrival, since there was unexpected information to share. (People do not know how to react when "new baby news" isn't routine....and generally don't respond with a hearty CONGRATULATIONS, which is all any new parent really wants to hear.)

    So right from the beginning, we thought "normal life" had changed for us. What we didn't realize at the time was that life changes constantly anyway, and that each new addition to the family changes the essence of the group. In the very beginning, we worried about the adjustments we'd be making because of Ds instead of looking forward to all the ways Bridget would add to our family. We just didn't know any better at the time.

    I hope others with a new diagnosis visit here and see that the diagnosis itself has not taken away from our lives, and to see how much Bridget has added.

    We've learned over time that feeling "different" isn't necessarily a bad thing. As a family, we're very open to all sorts of things that may have been harder to process (or not even on our radar) before Bridget's arrival.

    She brings so much to our lives in so many ways, and we're all growing right along with her.

  9. Beautiful, eloquent way to "Own It"!!!

  10. I forgot to say that you do a better job putting things into words!