Wednesday, March 18, 2009


Our two-year-old, Lilah, is suddenly growing by leaps and bounds, it seems. Not physically - I mean developmentally. Cognitively, all that. The sentences she is suddenly putting together are amazing. She makes jokes, and gets them. She goes into her closet, pulls out a dress and matching shoes (okay, sometimes they don't match), and puts the ensemble on all by herself. Stuff like that. And even after having witnessed this in the four kids previous to her, Michael and I still marvel at her growing accomplishments.


Today Daisy asked me, "Mommy, when Finn grows up, will he be a mommy or a daddy?" And I really just wanted to cry. Of course I didn't tell Daisy the truth - that Finn will never be either - because what's the point in giving that kind of information to a four-year-old. So instead, I told her, "Girls are mommies, and boys are daddies." And inside I just felt this ache.


Finn is eight months old, and you know what? I think I still haven't made peace with the fact that he has Down syndrome. I don't know if I ever will. There are other parents in the Ds community - lots of you who read this - who say they wouldn't change that about their child. And I have a hard time wrapping my head around that. It's not that I love Finn any less than my other children - the truth is, I love him so much that sometimes it's a physical tightness in my chest and throat. It's not that I think he's inferior, or less than, because he has Ds. What it is, I think, is that I hate . . . HATE . . . the hardships he will face because of his Ds. I hate it that he will never be a father. And then, of course, that thought is always followed by this thought: "But it's probably for the best . . ." And that's true. Why? Because people like him usually can't take full care of themselves, let alone a child. And I hate it. I hate knowing that it's for the best that he will never have children of his own. I hate knowing that when he's two, chances are pretty slim that he'll be doing all the amazing things that Lilah is doing now. My stomach turns over every time I try to envision him in school one day . . . I don't want him stuck in a segregated "special ed" class, but the thought of him being included in regular classes makes me picture throwing him to the wolves. I hate it that people will either stare at him, or pretend not to see him. I hate it that people will snicker behind his back. I hate it that he'll probably never get a driver's license or buy a house, and he certainly won't raise a family. I hate it that I already analyze my other kids and try to figure out which one of them will be best suited to become Finn's caretaker when I'm dead and gone.

It's not all bad, I don't mean to say that. He's brought so much love and joy into our family, and I wouldn't trade him for anything. I love him. But I wish he didn't have Ds. And I just don't understand how a parent makes peace with that.


Hector and Jennifer Varanini Sanchez said...

I always appreciate your honesty. I believe I've felt the same way at times. And then I think about it and I let it go...I let go of the fear, the worry, the disappointment, the unmet expectations, the hope for that perfect child. So it's a letting go for me and then an opening up. Open to what Joaquin has to give in his own unique and special way. I think there was a great sequence in my favorite movie Parenthood. Do you remember it? When Grandma walks in on Gil who is complaining about how complicated his life is. It goes like this....

Grandma: You know, when I was nineteen, Grandpa took me on a roller coaster.

Gil: Oh?

Grandma: Up, down, up, down. Oh, what a ride!

Gil: What a great story. (sarcasm in his voice)

Grandma: I always wanted to go again. You know, it was just so interesting to me that a ride could make me so frightened, so scared, so sick, so excited, and so thrilled all together! Some didn't like it. They went on the merry-go-round. That just goes around. Nothing. I like the roller coaster. You get more out of it.

I love this because at the end of the day (or our lives) it really is all about the ride.

Hugs to you!

Mary said...

Hi... i follow your blog sometimes from the other side of the world .My son was born 3 months ago and diagnosed with DS I feel exactly the same way as you. Like yourself I have other children. 3 older girls and have 1 other son who died 9 years ago. He is a half twin of my 2nd daughter and I thought that I had 'it' all again, when I knew that this child was to be a boy. And yes it kills me inside all of those same things being stared at, what school, (I don't think I could subject him to a main stream school) who is going to take care of him and which of the girls would be best for it. It wasn't what I asked for in life and am trying to reach some type of acceptance within myself with the whole situation. No parent likes anything wrong with their child and sometimes I would like to look in the crystal ball to see what is ahead.
On another note I am much younger than you, By a year and every bit as fabulous. (only joking He! He!)

Lovin Mama said...

The not having a family thing is what I have the hardest time with. I just keep telling myself her definition of a happy fulfilled life will be different from mine. Will it bother her when her sisters become mother's and she doesn't? She was nursing her baby doll the other day and it was so sweet and then I had a twinge of sadness. I bet they'll be the best aunts and uncles:)

Wendy P said...

Lisa - beautifully honest post. I think I'll blog an answer to this one later this evening.

I did want to say though, to you and to Mary, that at least for me, some things did get easier as Kira turned from a baby into a toddler. Right now, your kids are small and still showing you their emerging personalities. So, although lots of it remains hard, some parts do get easier.

Wendy P said...

Me again - I answered on my blog. I'm not sure if it will help how you're feeling, but thank you for letting me have a little bit of catharsis,

Bethany said...

I think it is a hard thing to try to wrap your head around when you are still sort of on the beginning of this trail we have landed on. I agree that perspective changes as our kiddos get older.

I do understand all of what you are saying. But ... even despite all of those things, won't it all be okay just as long as he is happy? In this day and age, I expect a lot more of our kids to find love. Even if Finn were a typical child, maybe he wouldn't want kids. It is hard to not put societal expectations on our kids, but I really do think it all goes back to one thing ... if they are happy, then why do all those other things matter?

Wendy P said...

And...oh,'s me again.

Anyway, No, it doesn't seem like you're consumed by it. I know what you mean about the Daddy comment.

I was explaining our middle names to Jackson the other day. Kira has the same middle name as her father, and her grandfather. And then I thought, "But I guess this is where that ends.". It's those times that just sneak up on you. I love that you wrote about it. It really helped me to clarify my feelings.

Jeanette said...

I have these feelings as well. One of the first crying moments for me was thnking about Sydney not having a prom or a wedding. Maybe this is denial on my part, but I really do not let myself think about it. I do my best to focus on the nearer future. These are the things that no one wants to admit that we think, but we do.

Chrystal said...

I understand what you mean. The first year was really hard on my. Now, I see many more better days. Really, I do.

I don't get sad about my daughter (maybe) not becomming a mother. And I actually think that she WILL get her driver's license (not that I'm offering to be her instructor!), but, in all of that, I still would take the extra chromosome away in a heartbeat. I realize that Ds has opened my eyes in a way that might not have occured otherwise, but I would forego that if it meant my daughter would be treated just like any other child.

She's starting to walk and when I picked her up from daycare today, another family was there to see how excited the staff was to tell me about her recent accomplishments. Part of me was sad because their son is only a week or two older than my daughter and he's been walking for almost a year.

So, yeah, I'd take it away.

Chrystal said...

I felt like I had more to say about this topic too, so I just posted a response.

Great minds, Wendy.

Lacia said...

Like others have said, the feeling does fade away as they get older. My daughter is 4 1/2, and while I still have days where all I see is DS, and it's all I think about, I am finding there are MORE days where I just see her as Kaia, perfect the way she is. Days where I know that I no more know what her future holds than I do for my other 2 kids. I want her to be happy with herself and with her life. I want her to reach her full potential, whatever that may be. Same things I want from my other 2 kids. Sure, she will not be a rocket scientist, but you know what, chances are neither will either of my sons. Who's to say that my boys will end up going to college, or doing anything overly acedemic. Life has no guarentees.

Kaia starting school was a real HUGE stressor for me. I stressed over it for well over a year before she started. She is attending a fully-inclusive Jr. Kindergarten class (we're in Canada) and I worried about how the kids would accept her, how the adults would treat her, and would she be able to adapt to that environment. She is having a WONDERFUL year. She absolutely lights up when we talk about school, when were are on our way to school she is ecstatic. She may not be doing what everyone else is doing, but she is learning, and she is HAPPY. What more can I ask for? If society didn't put this pressure on us for kids to be perfect (ALL kids), then none of us would have any issues or anxieties about DS.

TUC said...

You might never be able to make peace with all the things you listed that you hate, yet you will love this person with all your heart. I agree with you.

Anonymous said...

You are very honest and are thinking about it all and that's great! I'm one of those who more easily came to grips with the dx mainly I think because I work with disabled adults and have formed my ideas already about ability and so called dis-ability. I'm not big on measuring lives by doing... that helps me. Inner lives are so much more important and that is what happiness is about for me. My H. is a doer and comes from a family of doers and it was harder for him at first. He was always thinking about what she might not be doing. Well the facts are that people with DS have lives full of doing things that everyone thought they would never do and each generation does a bit more. They drive, work, get married, live on their own (like anyone else, benefit more from close support and community, ski, go to proms etc..I believe that it is critical for the world to have people that are not homogenized, not to come out exactly the same way. It is important for others to interact with those who are not just like them. And certainly I am not in the camp that believes having children or not makes any difference in their quality of life or measure of success. We all have our own lives to live bringing to it our own limitations. I have alot of issues that interfere with many of the so called 'choices' available to me.I guess to me it's a bit like an athletic parent struggling because they have a nerdy son. Too much dreaming/looking ahead/projecting our dreams of a life well lived can certainly get us into trouble and I have my own moments of hating the diagnosis for those reasons but I know better. I agree it helps as they get older and you see how happy they can be just being them and how much others will love them just for being them. We mainstream and it's been great. Do you know any kids that escape getting made fun of? Not me- kids are mean. My daughter just looks at them like they are crazy and then looks for a friend who is nice to her without any worries at age 9. So far the only meanness that she has encountered is from mean kids who are mean to everyone! You are a wonderful mother who will certainly find her way- I'm guessing that your older kids will be showing you the way and isn't your child lucky to have such great siblings! Hugs and hope to you!

Laurie said...

I love all of the responses!! I would have to ditto everything that Bethany said. This is how I make peace with Ds - I try not to let my expectations, fears, whatever, get in the way of Dylan's life. You know, what it all comes down to is happiness. Really, that is what I want most for my kids. The other stuff is small potatoes.

Jen said...

I guess I've got hangups, too, because if someone discovered a cure for DS, I'd be clawing my way to the front of the line. And my kid is about to turn 3. So I'm not sure when or if I'll EVER make peace with it.

Honestly? I think that those people who say that they wouldn't change a thing are either in complete denial or lying through their teeth. I mean, who wants their child to struggle even more than you already have to struggle just to get through life? Not me.

But what do I know? Obviously, I have issues, so take everything I say with a grain of salt.

I have a lot more to say, but perhaps I should write my own post about this. Thanks, as always, for making me think.

Bethany said...

I've been thinking a lot about this and my first response was typed so quick, I have a couple more things I would like to say.

First of all, no ... I'm not in denial and no, I'm not lying through my teeth. I guess if I were I would have never adopted a 2nd child with DS.

My thing is this ... we can't change our kids chromosomes and we can't take away some of the struggles they will have. Do those struggles suck? Yeah, of course they do. But we can't make them go away ... we can only make the best of them that we can.

Back to the societal expectations that parents many times have of their kids. I try to look at it like this: even our typical kids might not do the things many people "expect" of them ... go to college, get married, have kids, have a great career. My husband might want my son to be a baseball player, but what is my son wants to play soccer? I might want grandkids from him some day, but what if he doesn't want any? We never know what is in store for any of our kids, so I try not to ponder what they could have been and take pride in what they ARE. Because as far as I am concerned, our kids with DS will touch hearts in a much deeper way than any of our typical kids.

Finnian and my girls ... and all of our kids with DS ... would be made fun of, talked about, etc just the same even if they were typical. If not more so! Kids are just like that! I know I was talked about as a kid. I know I was made fun of. I agree that a disability tends to sort of leave an open door for these type of things, but then I see the stories of kids with DS in high school who are accepted for who they are and they are loved.

It is about education ... educating our community, our schools, those around us. But first we have to accept our kids for who they are and what they bring ... we can't educate others until we are strong enough to say that all these things are okay.

I hope I make sense here in my rambling. I said it last time and I'll say it again ... you are in a different place just solely on your son's age. I think you will be surprised at where you might be two years from now. ;)

All of this is not to say I don't have my Debbie Downer moments, but in the end ... it is all really okay as long as my girls are happy. And I will do whatever it takes to provide them with that happiness and to make our community be more accepting of them as individuals.

Karly said...

I think I have blogged about this one before, but I basically agree with Jen's comment. The things I love about Kailey that make her "Kailey" are not things I feel are present only because of Ds. So I would be clawing to the front of the line to get rid of Ds if there were a magical fix. To me, it's like saying you wouldn't change your child being in a wheel chair...why not? It doesn't make being in a wheel chair a horrible thing when you say that you would love for your child just to be free to run and not have to worry about barriers.

Laurie said...

I came back here to correct my statement about "small potatoes" (because after thinking about it more, I know that it's more complicated than that...of course it is) and I see that there are a couple of new comments. Again, I must ditto Bethany!! I was going to post a longer more thought out response, but she said it much better than I could have.

Great topic, Lisa.

Tricia said...

Wow. What great responses to this. I am one of those people who said I wouldn't change G if I could. Perhaps that is because I can't possibly fathom a "cure" for DS and so...I don't see the point in thinking about it (although I know where you are coming from). Truthfully though, for me, I think it goes deeper even than that. I can't fathom GEORGIA any other way. I just can't. That said, I think I had a solid year or so (Georgia is about 27 months now) where it was no longer a big deal for me. To be honest though, as time goes least RIGHT NOW, and not to be the fear into you, but I am having a hard time RIGHT NOW with a lot of stuff. I don't doubt it is in part because I now have another child who is modeling what typical kids do and how they develop so I now have a glimpse at how the other half others, I guess I have a whole post to write too.

Thank you for always being honest and a joy (if sometimes difficult emotionally) to read.

The day at a time. said...

My heart breaks for you! I TOTALLY know how you are feeling and a times I feel the same way! I often worry about the future, who is going to take care of him, will he ever go to prom or what about a family. I quickly have to change my thinking and I work every day to think positive. The truth is I have no idea what tomorrow will bring. I put my energy into today and what he can do today! Malachi is also 8 months old and even though he is behind he is still a happy little guy! I will cheer Malachi on EVERY steph of the way, it doesnt matter if he is behind or ahead all that matters is if he trys!!

Michelle said...

You've really started a hot topic here! I'm trying to post my answer, but I keep getting stuck in other peoples posts about this :)

rickismom said...

I agree very much (my daughter is 14 years old. I have posted on this before, almost exactly a year ago:

McKenna said...

I have felt all of those feelings. To think of my baby girl not getting to experience the most amazing thing I have experienced in becoming a mother would send me straight to tears!

Darah is 4 1/2 and I would never ever change her number of chromosomes. No denial or lying here. Yes, it's brought challenges for her and for us, but without that extra chromosome she wouldn't be Darah. I think that the extra chromosome brings a lot of good things FOR OUR CHILDREN. The ability to love unconditionally, resist grudges, and avoid jealousy better than the rest of us is a gift they have that I believe allows them to be happier than others. That being said, Darah is far from "happy all the time!" LOL! She has every emotion I have...but there is definitely a purity to her emotions and I lack that. Extra challenges do not always equate unhappiness. They usually equate more satisfaction, self-fulfillment, and happiness. Darah and Reese will never be lonely. Even now, I am working hard to foster life-long friendships for both of them so they always have a circle around them {a circle rich with 2 and 3 21st chromosomes}.

Darah enjoys her life to the fullest extent. My hubby and my parenting goal for our children is that they grow up to love the Lord and that they are happy. I really believe Darah is going to continue to enjoy her life and hope that when she's older, she will be able to answer this question herself and say that she wouldn't change anything about herself...although if she's like her mama and 9 out of 10 women, she may say she'd love to have thinner thighs. ;)

This is a great blog post and conversation! We're all different people who landed in a smiliar place.

Four Wonders Mommy said...

I am not all that good at "words" but all I can say is "ditto", especially to Bethany and McKenna's words. We have all been there. We have all felt the deep loss of not having the child that attends college, marries, and has children. It's all a loss at the very begining of their lives but it is soooo true about what we invision and what they will become. It's not up to us and I take comfort in knowing that my Molly will not have to deal with the BS that we do. The marriage conflicts, the finanacial troubles, the troubles with kids and well, Life in general. I have made peace with this as my baby is now 2 1/2 years old. The more you encounter adults with DS, you will see how "peaceful and happy" they are. That is, as Bethany said, the most important things that we want for our kids. {{Hugs}} to you..

Angela said...

Oh, Lisa, I totally and fully understand and agree!!!

Michelle said...

I know I'm a little late to the conversation, but there are so many things I 'hate' about this dx too, which doesn't mean I love my daughter any less. When Kayla is struggling with something, some concept, some skill, being able to just do something that comes so easily to other kids, when I can't seem to get through to her - I find myself "hating" that she has to deal w/these struggles and yes, sometimes even wishing she didn't have Ds because I think things wouldn't be so hard for her if she didn't.