In the Memory Keeper's Daughter, the scene in which Caroline brings Phoebe to the institution, then also leaves with her, was particularly chilling to me. Though it's just ten pages or so (it begins on p 21), it haunted me. I think, in part, it's because it made me so sad.

It also made me think of change--social change, and changes in people's attitudes. We have come a long way, and we still have a long way to go.

What changes are you hoping/envisioning in our world with regards to children and people with Down syndrome?

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Jennifer Graf Groneberg

That part stuck with me too, and made me so sad to think how many with DS were put in a place like that I just hope that we continue to move upward when it comes to how those with DS are treated - I'm new to this world and most of my experiences have been positive ones, but I know that there are still many problems.

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Melissa ~
mom to Dominic and Delphine (DS, AV Canal repair 6/07)
http://bananamigraine.blogspot.com

For me, I think it's great that the stereotype of people with DS is a positive one, a happy one, but I'd like to get beyond that, to where people realize and understand our kids are unique, and like other kids more than not. I think it begins with education, education, and more education.

Avery is just three, so we are relatively new to this world, too. But I am already growing tired of people saying, "THEY are such happy children." (My emphasis on the they. I also don't like the way our kids are all lumped together as "they".)

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Jennifer Graf Groneberg

I wept at the institution part too. But I wasn't thinking how far we have come in year 2006, but how far we have to go.

There are still institutions like this around the world for people with disabilities. Some group home situations are like this for our kids when they are adults.

And while we don't institutionalize babies with Down syndrome in North America, we DO terminate them before birth. Tell me how this is progress.

Wow, Suz, well said.

jennifer gg, I'm with you on the use of "they." It drives me crazy. About 9 of 10 positive remarks I hear about Thomas begin with "they."

I was so impressed with Caroline's courage in that scene. I think the institution works well as a representation of all the negativity that society creates for those who are different, and Caroline's decision is an example for all of us to follow--that we won't leave our children "there." We can provide a better life than that for our children. There are other options, other ways to live this reality, that are far removed from the dark, stinky halls of institutional thinking.

I was touched by the grocery store scene that followed. Isn't that how we all felt at first--completely disoriented, bewildered--even if we knew we loved our child and would do our best for them? And isn't that the state of being that often follows big decisions? A moment of clarity, and then the shock that comes when we find ourselves having to actually live the reality.

_________________
Kathryn Lynard Soper
Mother of Thomas (DS) 10/2005
Sam - 2003
Matt - 2001
Christine - 1999
Andrew - 1997
Ben - 1994
Elizabeth - 1993

Author of The Year My Son and I Were Born: A Story of Down Syndrome, Motherhood, and Self-Discovery



Editor of GIFTS and GIFTS 2

About the grocery store scene:

This was very real. I remember after my first husband left, going grocery shopping and being totally paralyzed by the amount of choices there were in store. I would wander around for an hour, unable to choose amongst the multitude of choices.

I think this is a sign of shock associated with stress. Kim Edwards described it well.

Yes. In fact, during the times that I have suffered from depression, I can't go grocery shopping without bordering on panic. My husband has to do it.

I had a similar experience after T was born, trying to make dentist appointments over the phone for my kids. The poor receptionist was trying to be patient... I just couldn't process the whole task of choosing a day and time. I stared at my calendar and all the little squares just overwhelmed me. It was the weirdest experience. But now I understand that I was grieving.

_________________
Kathryn Lynard Soper
Mother of Thomas (DS) 10/2005
Sam - 2003
Matt - 2001
Christine - 1999
Andrew - 1997
Ben - 1994
Elizabeth - 1993

Author of The Year My Son and I Were Born: A Story of Down Syndrome, Motherhood, and Self-Discovery



Editor of GIFTS and GIFTS 2

The first four months of Polly's life are a blur to me. I like to call this summer winding down, "the summer of fuzz". I really identified with the grocery scene as well. Actually, I kind of felt that way today at the store! Guess I am some what still in the grieving process.

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Gillian
wife to Sergei and mom to Elaina (, Zoya (6) and Polina (2 1/2 DS)
http://lintofpocket.wordpress.com/

I remember going to Walmart a few days after Cameron was born, we had to buy smaller preemie clothes for him. It was like being in a complete daze. I felt like I was hovering above just taking everyone in, like a strange dream. I don't remember having ever felt like that before. I think the grocery store part was an excellent description of the way I, and probably many others felt days or weeks after the diagnosis.

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Alek (10), Cameron (3) DS, Rylee (born 7/18/09)

Great points, everyone. And Suz, touche. Perhaps we haven't made as much progress as I'd like to hope; we've only just become more polarized. For the babies that are born, there are more services and a growing understanding; for other babies, there is not even a birthday.

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Jennifer Graf Groneberg

This book hits too close to the reality of today. We have made no advancements forward as a society, when 90% are terminated. How can we begin to convince people that this is acceptable, when we have such an incredible termination rate. I felt like this story parralled todays termnation story. And for that I was grateful, cuz we need to look at this. And the sorted affairs, alcoholism, and the walls that went up, those are the same responses we all get from those we know that terminate. So for me, this was a part that made me realize that we can move the child out of the institution, but we have a VERY long way to go before we can honestly say we have come so far. What is the difference between terminating, and throwing your child away. Both people spend years justifying, and both don't ever take the down syndrome away. It is with you forever. So, I loved that the author brought this to a realistic head for that time period. I am hoping that those who read it, who have made it a number one seller, will see the parrallel between the termination rate and the institution rate. I thank the author, as I think she did a beautiful job making us make this connection.

The grocery store scene left me with a lot of memories, as it seems to have you guys, too. Ciarra was in the NICU for 9 days after her birth, due to the heart defect she had and tachypnia. I had left her long enough to go get some groceries and go home to see the other kids. Kristin was 9, Jesse was 2, Alex was 1. Alex had had a rough week, Dad was trying to juggle his needs and the others, and mine, and be at the hospital, plus work. Chaos. We were dead center in a project that had ripped the entire front wall off our house, to build an addition, for a room for Ciarra and Kristin, plus new living room. HUGE project. Poor Jim. I was going home to give him a break, I hated leaving her there but everyone needed me. Anyway, I walked into the grocery store nearest the hospital, which is HUGE. In retrospect I should have gone to the local one I always used. I felt so weird, out of place, confused, absolutely befuddled. My mind was not there, and I was trying to find the right foods, the familiar foods, and I swear they were hidden. I kept thinking I wanted my boys to have their favorite cookies, cause I couldnt be there and they NEEDED their cookies. What could I buy for them to replace me for a few days? What could I buy that Jim could whip up quick with two toddlers on his hip? I was terrified, felt like I had the weight of the world on my shoulders. I wasnt scared of DS really, I was scared of change. I was scared I would do something wrong, forget something important. I wanted to buy SOMETHING that would make Ciarras life easier, something I could do to help, something to connect me until she stopped being the NICUs baby and started being MINE. I finally settled on Playtex bottles. I bought the starter kit, then one of every other kind of bottle there, bags, different nipples, then bibs. I spent about 200 dollars just on bottles that day. But I felt like I was reclaiming my child, that I knew what to do, Playtex bottles were how I fed my others, and that would be how I fed her, too. Oddly, it helped me take her back and make her MINE. But I remember clearly walking through the aisles pushing the cart, frantically searching, knowing everyone NEEDED me and there was no time to cry, and yet tears rolling down my face. I was so scared I wouldnt be a good enough mom to any of them. Thats my groceery store memory. Isnt it funny something so small would first of all be known to a writer, and second of all be SO important to all of us?

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Michelle, Mom of KJnC
Kristin age 21
Jesse age 14
Ciarra age 11 (with DS)

Boy, cierrasmom, I wish you had submitted that story to Gifts! Very powerful. You should write it up for Gifts II. We're trying to branch out from mom stories so we will only be including a limited number--so I can't promise you anything--but I think you should submit it anyway. You convey that panic and irrational thinking, as well as the determination to do SOMETHING, so well.

_________________
Kathryn Lynard Soper
Mother of Thomas (DS) 10/2005
Sam - 2003
Matt - 2001
Christine - 1999
Andrew - 1997
Ben - 1994
Elizabeth - 1993

Author of The Year My Son and I Were Born: A Story of Down Syndrome, Motherhood, and Self-Discovery



Editor of GIFTS and GIFTS 2

Aside from one incident, I have never had my girls discriminated against. I actually find it to be the opposite. People go out of their way to talk to them and smile at them. They go out of their way to include the girls in activities, etc. Maybe I'm naive and maybe God has just protected me from the negativity and discrimination.

I do get irritated when people just STARE at the girls with blank looks. Take the time to smile at them. Say hello or approach us, but do NOT stare at my children!

_________________
CJ
Mom to:
B (10/96)
E (06/04: DS)
? (EDD: 11/10)







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