Saturday, July 10, 2010


What does it mean to say that I accept that Kimani has Down syndrome, or that I accept her as is? And, is acceptance the same as being “over it”?

First I contemplate the definition of acceptance...

1. the act of taking or receiving something offered.
2. favorable reception; approval; favor.
3. the act of assenting or believing: acceptance of a theory.
4. the fact or state of being accepted or acceptable.

Well, I didn’t abort her or give her away, so I would say number one is a go. Seeing how I adore her, and think she is an interesting and fun child, 2 is good. I knew the second I saw her that she has Down syndrome, and an unnecessary blood test performed by the hospital proved this, so clearly I believe and accept that she has Down syndrome.

Number 4... hmmm.

My husband and I were driving along one day last Fall when I told him that the dentist said Kimani is missing teeth. I was surprised that he was bothered by this. I pointed out that it isn’t like she was missing a ventricle or something, I mean it’s just teeth. You can buy those. And he was quickly assuaged. Missing teeth... acceptable.

beautyBut what about the delays? Our Baby’s First Year calendar is now a first three years notebook. I can handle that. In fact, there is a certain thrill and rush of pride that comes every time she does something new. You know how you feel when your kid scores the winning goal at the soccer game? I feel like that each time she uses a new sign or says a new word, or shows off a new motor skill.

So far so good. Now I will take a deep breath and go one step further.

Eventually time will show that delays are no longer just delays, that there are other things missing... things that cannot be bought. If she is at the top of her class those things may be minor and not so painful. But if she is a typical design, then there will be things... bigger things... things I don’t even want to put into words right now.

Oh, I know there are a lot of years between here and there, and that when it goes day by day it is easier to find these things about her “acceptable”. I have faith that I will always find her to be acceptable to me in the present.

Acceptance... I think I’ve got it covered and can safely say I am there. But am I over it? When she is grown, and she is who she is, and I make peace with that, then I guess I’ll be sure that I’m over it. But for now, I just don’t know.

(Moms of older kids... are you out there? Talk to me.)


Angela said...

Sigh...I feel as if I am regressing and will never quite get ahold of the acceptance thing. And I'm only slightly over two years into this journey. The delays and the unknown future are still so difficult for me to handle. I still feel trapped. :(

Unknown said...

lots to think about...I needed this post...I am looking forward to more comments from parents that have older kiddos born with Down Syndrome...always great..thank you...smiles

S said...

I have been having these exact thoughts. I almost want to say JINX one two three you owe me a coke! I guess as God gives us 9 months to prepare for a birth he gives us a plenty of time here in each stage. I can not express the excitement when Thomas does something new. Its a beautiful thing. I am sure those little things will never stop coming therefore the joy will never go away:) Now you get it times THREE!!! lucky lady!

Anonymous said...

It's funny that you mention that hubby took issue with her teeth. I, too, feel strongly that I've "accepted" Lucy's Ds...except for the fact that I continue to struggle with Lucy's orthotics.

It's not like I think I'm fooling anybody...she clearly *looks* like she has Down syndrome. I think it just makes her that much more beautiful...but for some reason those bulky, decidedly un-girly SMOs make me shudder.

I like to think that it has less with resistant to Ds and more a preoccupation with fashion! Ha!!

L.L. Barkat said...

"Eventually time will show that delays are no longer just delays, that there are other things missing... things that cannot be bought."

This part. It got me.

Melissa said...

Most days I'm in a really good place with acceptance. But then there are those days that I see typical teens and my heart just hurts. I worry about what she will miss and more selfishly what I will miss. I guess that's why we do this one day at a time. Each day she's been in my life I've been charmed and blessed and when I think about it, I don't know why the days to come have to be any different.

Melissa said...

But, that's not to say I still don't worry about the future. :)

Leah Spring said...

I'm 14 years into the walk. I can honestly say my level of TRUE acceptance waxes and wanes. I have accepted the fact that Angela talks more than any 14 year old I've ever known. Well, maybe not. I think her brother talked just as much when he was 14.(he's 21 now) So see, she's not so different there. I have not accepted the fact she does not get invited the the same outings her typical peers do, and that I do have to make an effort to keep her involved in the same things. She IS involved in the same things, she is VERY active in social activities outside of school, but they are arranged by adults, and they involve a lot more effort on my part than they did for my other kids...and more supervision. It bothers me. I am NOT accepting of the fact that because Angela's behavior when she was younger (and even as recent as 6 months ago) was so very difficult to manage, that even other parents of teens with DS leave her out of activities. I am accepting of the fact that Angela sleeps very little. I am accepting of the fact Angela is different from her peers. I am NOT accepting of how she is treated by other teens because THEY don't get it, and even teenage cousins who leave her out and their parents don't see it as anything other than "they're just being kids" so if something is going to be said to them it's going to have to be by me. I am NOT accepting of the fact that I am the one who always has to take on the role, why can't they step up to the plate for her once in awhile? And bringing up the topic of girls and girl only issues, I am NOT accepting of the fact my kid can't just use a tampon like other girls her age so she doesn't have to miss her swim practice like the other girls on her team. She either has to miss practice or have "dry land" practice (which is miserable) The other girls can use a tampon and not give it another thought, but I can't even imagine trying to teach her to use a tampon. So no, I am NOT accepting of that difference! (and if you want the details how we're dealing with that, you'll have to email me. LOL)

TUC said...


Thank you for your POV. I'll be writing that email in about 10 or so years... be on the lookout for it :-)

MaggieMae said...

First - why can't you teach your daughter to use a tampon??? Like pottying, I'm thinking it might take a it longer but there's no medical reason why you couldn't try or it wouldn't work... Is there? I have sons with DS so I don't have to face that challenge but there'll be others I'm sure!

As for acceptance, I have 5-year-old identical twin boys with DS and I have always accepted them, their brown hair, green eyes, their DS and the potential limitations it may or may not bring. I have a "typical" cousin who, at 37, had a mental break-down. He's got limitations now and cannot live independently. His mom accepted his limitations before but is having a hard time now. I heard about a mom whose son was in a car accident and became a quadriplegic. She was very accepting before and is angry as all heck now... especially at other mothers of children with special needs. Every one's path is different. There are no guarantees in life especially when you have children. No one is typical. No life is predictable. What my children or I may or may not achieve in their lives or what abilities any of us might lose in the future is completely unknown. I have no choice but to accept that. Moving on and living our lives in the moment and to the best of my and their ability w/o worrying about what may or may not happen in the future... THAT'S the greater challenge.

But yes, I also have a hard time accepting all those ignorant people who exclude our children for "differences" they perceive in our children with special needs despite the fact that they are so much more the same than different. My only recourse is to correct their erroneous thinking with every encounter and hope they "get it". Some day!

Anonymous said...

I'm with Maggie Mae. Acceptance for me is more about other people accepting Kayli than it is is my own acceptance. Yes, I am struck at times about how hard it can be (to be a parent) and sometimes when the shadows fall a certain way I notice abruptly her features as identified as DS, and I wish many times that she didn't have to go thru heart surgery (but it could've been any kid). I guess for me I would say TUC, that it is more of a process of stages of understanding myself in re: to differences that is what we call acceptance.
I suspect that, as in all 'isms, there is a core "normalism" that we all struggle with, a bias that homogeneity is the way its supposed to be and then when we "bump" up against this part of us we feel jarred? I definitely feel those from time to time.
Great post TUC....
Just my thoughts right now.

TUC said...

Leah, if you are going to answer MaggieMae's question... you probably ought to do it via email :-)~

MaggieMae, you hit it exactly... accept and move on, but I am trying to figure out if real acceptance means I don't ever hurt about it anymore... or is that more like "over it".

Courtney, the teeth we do have are... well let's just say I think she has some T-Rex blood in her.

rickismom said...

This is a post I wrote about acceptance in the early years:
Today Ricki is almost 16 years old. I see acceptance as a balancing act: Loving her as she is on one hand, and helping her be what she can be on the other. And occaisionally Ricki does not cooperate with the later, and I have to deal with her teenage shenanigens just as I would with my other teens. And there is still at times, a twinge of hurt over the things that she isn't. I don't think that this ever goes away completely. But that twinge is so overshadowed by all that she IS, that I can deal with it.
My discomfort with what she can not do is less about things that I don't like, and more about worries for her ability to function independently, and safely, in the real world around her. And I need to balance that fear with her own need for not having me looking over her shoulder every minute.

FBF Rothkopf said...

Well, as you know from my own recent postings, acceptance for me also waxes and wanes - for ALL my kids, not just Sofia.

Specifically about DS, yeah, sometimes there are specifics - how the heck do I potty train her, how do I get her to stop grabbing things from other kids - that get tougher because of the extra chromosome. But those things would be tough anyway.

Hubby is of course more critical and less...I don't know if "accepting" is the correct phrase. Less resigned. Less acc... oh, I guess accepting IS what I mean... He's the one who is impatient with her progress. But he's also impatient with her brothers' progress. He's just impatient in general.

I get frustrated with all my kids, and pissed off sometimes when I think about the extra challenges they face. But I'm still so thankful for all the GOOD things, some of which I might never have noticed were it not for the challenges.

(And thanks for the vacation idea - we went to PA when Sofia was a baby and loved it, so it's definitely something to reconsider).

the Jeffr said...

Hmm. Good thoughts. That's an issue I struggle with myself. Only time will tell for both of us, I guess.

Cindy said...

We have a favorite saying around here- my older two children (10,7) like to use it the most with their 5 year old brother with Down syndrome, Johnny. It's "That's just life with Johnny! That's just our Johnny!!!" It's especially useful in the more frustrating moments but it goes a long way in helping us all be more accepting of him. He's our boy, our son, our brother- he is himself and we love him although he might do some things differently, slower, etc., that's just him- that's our Johnny. :)

DownTownDan said...

I have now had two years to accept Ozzie. For a long time it was very overwhelming and frightening and difficult. But at some point I fell deeply in love with him, and I accepted the fact that he needs me. He has only two people in this world who truly, unconditionally love him like no one else ever will - me and Dina. And he has a big sister who loves him more than anything in the world. So Ozzie has just three people he can truly count on, always (I'm not counting grandparents here). He needs each of us to accept him and be there for him. We can't waste time obsessing over what he is not - he needs us to accept him and love him, and he needs us now. And so, naturally, Dina and I have moved past a lot of the worrying and the "what ifs," and we've got on with the business of living life.

I think I'm finally okay with Ozzie's diagnosis. I accept it. I mean, I accepted it from day one - there's no way to undo Down syndrome - but I mean that's it's really okay with me now. When I walk into a store with Ozzie, I don't look around to spot people who are staring at him. It's not even a thought. I used to be hyperaware of that sort of behavior, mostly because I am a very private person and dislike being the center of attention, especially when I am just trying to shop anonymously. That was one of the aspects of his diagnosis that was the most difficult to accept - the fact that we are now one step removed from "regular" folks. "We" are now "them." Just coming to terms with that fact was life-changing, because I hate being shoved into a category that I never asked to belong to. But I came to terms with it, and I accept it. It's just part of the business of belonging to a species of social animals. Our family will forever be just unusual enough to catch and hold people's attention. It's nothing personal.

I often think about how unique Ozzie is, and what an interesting life we will share as a family. He will hopefully help us all retain an innocent and sometimes even childlike view of life. A healthy and positive and fun and magical and poetic perspective that many people lose rather early in life and never experience again. I can't wait to experience life from Ozzie's perspective.

The only thing that still hurts is the thought of Ozzie not being accepted by others. That's a bitter fruit, and I fear that in a few years I'll be biting from it every day. It terrifies me, and it breaks my heart. But I'm hoping that through internet groups and local organizations, I can help give Ozzie a full and rich and happy social life.

Post a Comment

Go ahead, say it.