Thursday, September 11, 2008


Today is one of those days where I'm sort of inside my own head. Some things going on in there:

It's been said to me more times than I can count, by more people than I can keep track of, that Finn, as a special needs child, and more specifically as a child with Down syndrome, will bring us immeasurable joy; that special babies are given to special parents; and that if anyone can handle all the challenges down the road, "It's you, Lisa."

All of these statements leave me scratching my head.

If having a special needs child - a DS child - is an experience so laden with joy (and I'm not denying it - I really don't know; I haven't been doing this long enough to cast a verdict yet . . . Finn brings us joy because he's our child and we love him, but I would say the same about all of our children), then how come the rate of voluntary pregnancy termination in cases of prenatally diagnosed DS is somewhere between 80 - 90%? And I'm not making judgments there - I have my own feelings about abortion. My point is that the vast majority of people apparently would choose NOT to have a child with Down syndrome, despite all the supposed joys the experience is supposed to bring.

I wonder, if these same people who have told me this - the ones who don't have a special needs child themselves - if given a choice, would they choose to have a special needs child?

And here's something else to ponder (for myself): would I have chosen to have a child with DS? I don't mean if I had chosen to have the prenatal screenings while I was pregnant (I chose not to), and found out I was carrying a baby with DS, would I have terminated - that's not what I mean. I wouldn't have terminated, but I'm glad I didn't know before he was born. What I mean is this: When I was longing so much for another baby after Lilah was born, what if the powers that be had said to me, "Okay, Lisa, here's the deal: you can have another baby, but it will have to be a special needs baby, a baby with Down syndrome. Or you can choose not to have another baby. What do you say?" What would I have said? I really, really don't know. The yearning for another baby was incredibly strong within me, but I don't know if I would have said "Okay, let's do it" to a deal like that.

And I can't help but think that all the people who say these things to me are secretly saying to themselves "Thank goodness it's not me! Thank goodness my baby/child is healthy and normal!" And while this makes me sad - and in a strange way makes me feel like a misfit among my friends these days - I can't deny that I would be secretly saying the same things if the tables were turned.

As for being some sort of special parent (was I special before I had the "special" baby or is that title given out only after one has a "special" child?), or being so well able to handle the challenges ahead with Finn, I'm most assuredly not. I'm short on patience and tolerance, I'm anal retentive, I probably expect too much from my kids in many areas (it boggles my mind that a 3-almost-4-year old doesn't understand that coloring on the walls isn't cool - I'm told this is typical behavior for that age, however.) Michael and I joke sometimes about the therapy fund we have for when our kids are all grown up and realize how much we screwed them up. And I'm supposed to be qualified to raise a child who needs extra patience, extra tolerance?

Sometimes I just feel scared.


Angie said...

I know there is nothing I can say (defintaley nothing I can do being on the other side of the world) to comfort you Lisa. I agree, I understand and you were 'special' before you had Finn I can assure you. ((((HUGS))))

Anonymous said...

I have 2 kids and I love them equally, with zero standard of error, even tho they are different. No question. In my musing moments of comparison of the two, that still holds true. The joys and worries and stress while I raised them, different for each--are now irrelevant to my enduring love for them both. I hurt inside, when I know that one or both are hurting or struggling, but the love is a constant and its depth enriches me throughout my life, even when entangled with their pain and mine. I recognize that neither of my kids have DS, but that you do have one. Still, I betcha a dollar your love is equal for all 6, that it will endure for all time, and that your love for them all, and the ensuing richness-- will trump the stress of life that lies ahead.

As for taking the "deal", as a dad to be? I'd have to think that one over, and wonder why it would be offered. It seems an unfair deal on the surface.


Cleo said...

Finn was born with Ds, he may have some health/cognitive challenges and he will overcome them too, because Finn is bigger/much more than Ds. Finn is someone who loves, accepts and respects you unconditionally, he always will. Finn is here to teach you about strength, determination, courage, patience and tolerance. Finn is here to teach about what is really important in life. Finn is here to teach to be a better person. Lisa, when I see a child or adult with Ds, all I can see is their beauty and If given the choice, I will choose to have a child with Ds.

Carole said...

I have been following Finn's story, and many of your posts made me cry. I am the mother of three children, one of them is autistic. I have heard the 'special mom' comment too. I never felt like I was so special to begin with. I always thought I was a mom doing the best she could :) Each of my kids teached me something new, but my autistic son brought me to places I never thought I would go. It is a gift to have him in my life, and I wouldn't have it any other way. I learned to appreciate the small sucesses, the amazing sound of a word that he finally can speak. I have learned to appreciate to effort more than the end results, I have learned to take my time and enjoy each and every moment. I don't think I could have learned all that if my kid didn't have special needs. So, yes, I really think it is a gift that was given to my family. Somedays are harder than I can say, but I still wouldn't change a thing about him.

You are doing a wonderful job with Finn, and he is a beautiful baby.

rickismom said...

Look, most of what people say to you are to "comfort" you... to be sure to stop you before you say something negative that they can't deal with. This is not a conscious thing, but it is there. The first time my best friend (best friend, for crying out loasd!) gave me the "special people" line,after Ricki's birth, I looked her in the eye:
"We all have our own failings, and usually try our best that others shouldn't see those lacks. Each of us knows that he is a normal person. If YOU can convince yourself that I got this child (with Down s)because I am "special", then YOU feel that you don't have to worry.
Well, I hate to tell you, but it happens to plain old regular folks like me."
However, the experience of raising a child with special needs will usually give the parents a chance to grow.

Jodi said...

You know my thoughts about being "chosen" for this parenting path and I'm not sure how I would answer your question about choosing it if given the choice. I don't think you have to be a perfect parent to be the best mom for Finn though. Unlimited patience won't prepare him for the world anyway - love, understanding, and a safe place to fall is what you offer and all he needs. I don't think you have to be "special" to do this.

doulamom said...

We're all scared to be trusted with our kids!

Chrystal said...

Wow, great post! I wish I could speed read right now and catch up on all you've had to say because it's so real and it's so raw and I can truly appreciate how you feel.

I like what rickismom said...if folks convince themselves that we're "special" then they somehow feel that this can't happen in their own lives. Special my behind.
I posted about this recently.

Jen said...

I found your blog through Pinwheels. I was interested in it because I love, love, love the name Finn. I wanted it for one of our boys, but it doesn't go well with our last name. Your son is beautiful.

I have identified with everything you've written here. The first months can be so hard. Take it from someone who has been through it (my son with DS is 2), it really, really does get easier. There are still days where the DS slaps me in the face, just when I least expect it, but more often than not, we're just going about our lives. One foot in front of the other.

I look forward to reading more!

Tara dS said...

Hi Lisa,

I just recently found your blog and I'm reading about your journey with great interest. I know this is a very old post, and I'm sure you probably know this by now.... but on this particular post, no one addressed your question about whether people would choose a special needs child. The answer is yes! Lots of people choose to adopt children with Ds. There are adoption agencies dedicated to the placement of families with children who have Ds... And families that wait for years to be able to finally bring their children home. I'm looking forward to seeing how things go with your lovely family, but I have to read blogs chronologically - I just can't bring myself to skip ahead. So it will be a while, I guess. I hope all is well with you.