A Sweet Romance

OK, this story is two months old but I just read it and found it very inspiring.

I'm particularly impressed with the parents, who could have said "no" each step of the way, but instead they helped to make the "impossible," possible. 

Comments

[Alexandra Foley]

Wow. I am teary from that story. I read a beautiful book about a woman carrying a downs child called Expecting Adam. Since then I find myself so interested in and attracted to children I see with downs. Clearly it is no picnic to have (or have a child with) downs. But stories like these remind us of just how beautiful their lives can be and how much they can teach us. And it humbles me to be reminded that human life is always a gift.

[wendy]

That is one of my favorite books too, actually! Esp. the descriptions of grad. student life at Harvard.

[ellen]

Honestly, the issue I directly go to in my mind, when I hear of Downs couples marrying, is the subject of children. I am glad that the gal in this story made a decision that will truly prevent all possibility of conception.

Ellen

[Elin]

It is indeed a sweet story. However, I have mixed feelings about a number of things. Firstly, I am not a fan of marriages between members of different religions. I think it can only work if neither partner takes their religion particularly seriously.

Secondly, we have to acknowledge the incredible amount of support that must be in place for this couple to have even a semblance of a normal life. In this couple's case it appears that they have that, and that is terrific. But if other people with developmental disabilities decide to get married, are there necessarily going to be these support systems in place? Who is going to ensure that for them? Do we require families to provide the additional support required? If they are not able or willing to do so, do we provide adequate supports through our publicly funded social services?

Thirdly, I have to agree with Ellen on the subject of children. Again, in this case, the woman herself understands that children would be too much of a responsibility, and has taken steps to prevent that. But ironically, a person whose developmental disability is more severe may not have the ability to realize that child-rearing is too much for them. The responsibility for whatever children may ensue thus devolves, again, on the families, or on society at large. What do we do then?

The story of this particular couple is not just a shining example of the love between the two young people with Down's syndrome, but also the determination, sacrifice and support of their families, friends, workplaces, etc. It is important not to lose sight of that. I also think that we should be cautious about extrapolating this example into a general carte blanche for all people with developmental disabilities to marry, without looking at the wider ramifications of such a step. On a case-by-case basis, it may work well - more power to all involved! - but I'm not sure if we can generalize from this one instance.

[Rebecca]

I, like the previous reader, must demur at this enthusiastic description of marriage between people of different religions. I am a Catholic married to a Protestant, and believe me, this is difficult enough -- I can't imagine what the challenge would be if we were of different religions entirely. Those who gloss over the differences do no favors for the couple. I also wonder if anyone else was uncomfortable about the bride's surgery.

[wendy]

Thanks for your comments. It's always interesting to see how different people take away different things from the same article.

Well, I am certainly no fan of intermarriage and in fact have written articles against it, but I have to say--with all due respect to my gentle readers--that I just don't see this as the salient issue here.

We live in a society in which between 80-90% of Downs babies are aborted and never even given a chance to live. This is largely because of a medical profession that presents an extremely negative picture to expectant parents and encourages them to abort when Down Syndrome is diagnosed.

"It could just be hanging off of you, drooling," warned one physician to a mother in the ultrasound room, "contorting her face into a saggy, expressionless imitation of what a child [with Downs] might look like." (W. Post)

To me this story is about how much we are capable of, not just the children but the parents who helped make it all possible (from the decision not to abort and everything that followed).

And even if one is opposed to intermarriage there are other competing (Biblical) values, such as "it is not good for man to be alone."

From the article it sounded like these were the only two individuals with Down Syndrome who had the emotional maturity and capability to marry, and who were within a particular age bracket, and who happened to love and want to take care of each other. It's easy to talk about ideal marriage criteria when we have so many people to choose from, but in a society that aborts 80-90% of Down's babies, they do not have that luxury.

[Rebecca]

Okay, you have a point. I know parents who stuck their mentally handicapped kids in "adult homes" and then don't take seriously their frustrated desire to live like other people. It's heartbreaking. I wish these two young people the best.

[Elin]

Wendy, I was not at all intending my comments to disparage the value of people with Down's Syndrome (or other developmental disabilities) and the gifts they bring. I am utterly opposed to aborting a child because it has a disability, developmental or otherwise, and I am truly glad for this young couple.

I guess I jumped too quickly to my concern that not all people with such disabilities are in such a position, and it does a disservice to such individuals to assume that stories like this are the "norm". Some may be able to pursue a more or less "normal" life, with appropriate supports; with others it would be next to impossible. And the fact that a person has adult sexual desires is in itself not enough. Every case is different. And sometimes assuming that people CAN live a relatively "normal" life does more harm than good.

I say this as one who has both a close relative and an in-law with developmental disabilities. In my large, close-knit extended family, the cousin next to me in age has a moderate-to-severe developmental disability (not Down's, and much more severe than that suffered by the protagonists in this story). She is loving and winsome and has a wicked sense of humour, and she enriches our lives in many ways. Unfortunately she is not and never will be capable of living on her own (much less with a spouse or child), any more than a six-year old would be. She lived at home until 35, but recently, as her parents got into their 70's, and particularly as her father came down with a progressive degenerate disease, which left him severely handicapped as well, my aunt was no longer able to take care of her. She now lives in a group home for other developmentally disabled adults. She has not, Rebecca, been "stuck there" - she enjoys living with other people her age and she gets out to work (at a sheltered workshop) and to visit her family (and be visited by them) every bit as much as her non-disabled sibilings. Given that she cannot live on her own, and that her parents' age and ill-health make it impossible for them to continue taking care of her, this really has been the best option. Sooner than later they will die - and she will still need pretty much constant care and supervision. How else to provide it?

On the other hand, my husband's uncle suffers from a relatively mild developmental disability, and the biggest handicap is that his family has always been in denial about it. (In fact, my husband didn't even twig to it until I pointed it out; shortly afterward he met my cousin and realized that I was right). They have expected him to behave like a non-disabled person and have become angry and resentful of him when he has shown, time and again, that he is not capable of exercising that level of responsibility. He is almost completely ostracized from the family because he is an "embarrassment" - not included in family events/celebrations, rarely visited, etc. I compare this with the close relationship my cousin enjoys with our family and can't help but wonder if my husband's family just ACCEPTED that he was not "normal", if they might be more open to what he really is, and all he has to offer.

[ellen]

I am certainly not for abortion. The only exception I can dream of is in the case of a life/death decision which involves the mother. In other words, when one of the two will inevitably die.

I must say that I was just taken away by Elins articulation in her initial post. She so *concisely* covered my own concerns and feelings. Fabulous, fabulous post.

Let's take a minute to digest the suggestion that there are things in life that we are not, across the board, entitled to. *We do not all come into this world on an even playing field.* It may be unfortunate, sad, and seemingly tragic (without our knowing Gods reasoning in its entirety), but it is a fact of life, in the end, to be handled with both practically and love (including the Bibles "AGAPE" love: a love which takes into account anothers best interest..).

(Note: I, myself, have a type of handicap which has, in the end, persuaded my husband and I that having children would not be a wise idea. It is a loss, but bolsters the greater good for our lives.)

Many (at the least) Downs couples who would wed without assistance and supports in place probably could not handle the typical responsiblities of married life by themselves. So, what do we do? What about entitlement?

Well, ideally, parents and individuals, out of personal motives of goodwill, would seek to assist such couples in achieving their dream of marriage....if feasible. This is a wonderful thing and a credit to humankind if done in a caring, autonomous way (that is, not by a socialistic government).

Or, maybe we should let the cards fall where they may, regardless. Perhaps we should forcibly remove babies from homes in which they never had a chance of being cared for properly. They would be babies born to Downs couples out of their entitlement to a "normal" life. Is this a plan?

I certainly don't have all the answers here. I know that. I CAN say for sure, though, that there are enough variables to consider in Downs marriages that I'm not ready to jump into a wide ring of approval and applause.

That said, I am sincerely happy for the blessed Bride and Groom who are the subject of this particular post.

[Rebecca]

This is to Elin: You said nothing with which I disagree. I want only to point out that there is a difference between putting an adult in a good home because it is necessary, which is the case for your cousin, and putting one in a home when he doesn't really need to be, just because he needs some extra help and his family doesn't want to provide it. There are also great differences in quality between different homes. I also write from experience, and you are correct in stating that all cases cannot be treated the same. How very, very much I agree with you, too, that it isn't necessarily kind to try to treat everyone as "normal."

[Rebecca]

You know, my mind just keeps wrestling with this one. Here Wendy just wanted to share a touching story, and it's brought on a flood of mixed feelings in some of us, colored by varying personal experiences. I surely wish I knew how people with mental limitations should be treated. With love, yes, but how best to love them? I wish I knew because this is a burning issue in my own family, and it hurts.