Friday, October 29, 2010

Some for 21: Confessions

October is almost over and I haven't done a ton of the "Some for 21" posts that I started earlier this month, but today I want to combine a few thoughts into one post. I was inspired by a post I recently read at another great blog, and I want to tell you some of the things that I have thought over the past four months or am dealing with now. They're not all easy to put into writing, but I hope that they will be helpful if you or someone you know is going through the adjustment of a Down's diagnosis.

Confession #1: Sometimes I don't want to talk about Roo's diagnosis because I can't help you process it yet. One of the hardest parts of talking to others about our struggles is dealing with their emotions, especially when you're first breaking the news to friends or family. I would often feel like I was taking on the role of counselor to help others through my hard time, and it was more than I could take. So I would sometimes avoid phone calls, get-togethers, etc, so that I didn't have to have those one-on-one "sessions." It's easier now, but I still try to make a quick exit from conversations where I feel like I have turned into the therapist for someone who is trying to figure out how to help their friend (ME!) deal with her son's diagnosis.

Confession #2: I'm getting a little bit fed up with the platitudes. I tend to be a pretty laidback person in many respects. Since Roo's diagnosis, I have met several moms of Down's kids who are more easily offended by words than I am—in fact, some of them are probably upset that I just used the term "Down's kids." But those things don't tend to bother me. Many of them get very upset over society's casual use of the "r" word (ie, "That's so r*****ed! I can't believe you did that!") and I totally get it—I really do. Please don't hear me say that it's no big deal, because I completely understand that words can be so hurtful and that this one in particular can be downright painful to hear. But I can't say that it really gets under my skin that much. But the things that people say to try to make it all better… those are starting to wear a little thin. Again, I understand the need people feel to say something, to try to make us feel better, to try to make themselves feel better, and I kept trying to let it go—like water off a duck's back, right? But you can only let so much roll off your back before you get soaked. I'm soaked. I'm alllllllll filled up and weighed down with platitudes, and I can't take many more. If one. more. person. feels the need to tell me that Roo is such a sweet baby AND THEN FOLLOW IT UP WITH "those kids are always so happy", I'm going to punch them. At least then they'll know that the mamas aren't always so happy.

Confession #3: I am tired. I am incredibly thankful for the therapies that are available to Roo, and our therapists are great. It has truly been a very interesting learning experience to find out the growth/developmental benefits of so many of the things that we naturally do with babies. (Bouncing them on your knee, for example, strengthens their core muscles and is actually good for their nervous system. Who knew???) But I'm tired of them. I'm tired of having to put so much thought and effort into things that come naturally for many babies. I'm tired of wondering when he's going to be able to sit up. I'm tired of feeling guilty every time I set him on the floor because he can only lay there. And I feel incredibly guilty because I know that it's not about me, it's about what is best for my child. And don't get me wrong—I do it all anyway—but I'm just… over it. But you know what? Every single time I start to think I don't want to do it anymore, I look at that sweet sweet sweet little face, and my heart completely melts and I am happy to do anything for him.

Confession #4: I am nervous about the future. Sometimes I think that my "acceptance" of Roo's Down syndrome is really just masked denial—that I just don't think about it a lot of the time because he really doesn't look much different from any other baby, especially when you take into account that he's so small. But that's not always going to be the case. Someday he's going to look different, talk different, act different. What if I have a hard time accepting that? And what will I do when others have a hard time accepting that?—because I know that day is coming, the day when he is rejected or looked down on or picked on because of his Down's. To be honest, though, every time I start to get nervous about my future with Roo, I realize that I am equally nervous about the future with the other kids, too. The specifics might be different—What will Lamb be like as a teenager? Will Monkey disown me by the time he gets to high school? Will the kids move far away? Will we have a good relationship with them? Am I completely screwing them up?—but the nerves are the same. Each child, each relationship, is unique, special needs or not.

Confession #5: Sometimes I'm still sad. But when I grieve, I am grieving for Roo and the hardships that he will face, not because of Roo. And when I struggle inside myself, it is that Mommy Guilt that most moms know all too well, the guilt of wondering if I am making the right choices for Roo—not guilt over struggling to love my child. I am completely, totally, wholeheartedly in love with this sweet baby boy. How could I not be?

Confession #6: I'm realizing that life goes on. The last few months have been hard, but hard things happen. Roo has Down syndrome—that's our hard thing right now. Other friends of mine are dealing with divorce, with cancer, with loss of jobs, with hard adoptions. Life is hard. But you keep moving forward. Life—even our life right here in this house, even Roo's life—does not revolve around Down syndrome. And that's good, because that would be a very small and sad existence indeed. But life is about more than a diagnosis. It is trips to the park and hearing about Lamb's days at school and visiting Nana & Papa and family movie nights and getting to know each other and growing and laughing and crying and so many other things. And it's about taking all of the good and bad and all that we're learning and using it to serve God and others. And we're getting there, we really are.

Confession #7: I'm not being very productive right now. My kids are all asleep in bed (Lamb is home from school with a fever.), the van is full of stuff from Wal-Mart, the dishes need to be done, my to-do basket on my desk is full… and I'm blogging. It looks like it's time for me to get to work.


Patti said...

Amen to all your thoughts as well:)
Seriously, Katy- your little guy is SO ADORABLE, he takes my breath away. How do you get anything done???
I absolutely hate when people say "those kids are always happy, etc." So lame. AND if I were ever to use the word in public (I shamefully adimit I still do at home...only directed at inanimate objects, I promise!!)..i would say "That is so retarded!" to those kind of comments. Like our babies are zombies or something!! If I posted this on my blog I would kill my readship, so hopefully you get my weird sense of humor;)
Let's have a virtual pity party together, want to???Lol
hugs to you today !!

erin said...

Love you, friend (have you noticed I'm a broken record these days?). Thanks for your transparency.

Wren said...

Great post! My mother in laws favorite thing to say when talking about Sutter is "he's so neat"...what the hell does that mean...neat?! Then again, she was also the same person who asked me when they would re-test him to see if "the down's" went away....somehow this woman has a maters degree in English!

He's a cute baby and it looks like he's doing great!!!

Anonymous said...

I am so impressed with your blog and the time you take to do it, this will be so wonderful for you to look back and remembering your daily struggles, and feelings... Wish I had the drive to do it:)
I have a couple thoughts (which I know you would love to hear:p) I am one of those mothers who are horribly offended by "down's kids" & "retard"... I see my son as a beautiful, perfect precious life, not a downs kids.. I think it would be the equivalent to people asking: "how's that down's kid Joey doing?" I am guessing that its all a process of your journey & I don't want you to feel bad I am just explaining the other side which I'm sure you understand. I think using the "r" word at home or not taking offense will change when your baby comes home in tears after being called that. I share so many of the same feelings & thoughts as you and enjoy reading yours... Keep them coming!

Mar said...

Sending you lots of love & care, Katy.

The "r" word REALLY bothered me growing up and early in adulthood because my oldest younger brother was often called that (in a derogatory way) growing up - he wasn't "R" nor is his adult life impaired in any way by his diagnosis early in life (Cerebral Palsy) - in fact to the best of my knowledge nobody but family knows.

Lamb & Monkey will likely run into that as they get older - and as their mom it's going to be up to you to figure out what to do when they do. To this day I still haven't told my parents that the reason that, as a 4th grader, I beat up a classmate was because he made a derogatory "r" comment about my little brother (then a kindergarten student). I never beat anyone up again for making a comment like that, and I don't regret not telling my parents. But I do know that my brother's diagnosis was something that we (DH & I) really worried about when we were pg with our Roo ...

That probably didn't help you feel any better, did it? Sorry. Sometimes reality bites. And some day Lamb is going to be that 4th grader with a Kinder brother ...

<3 ya!
Mar (from my new StudentAccountant blog)

Patti said...

Katy- should I delete my previous comment? I do NOT want to offend anyone in any way. I just have always felt that the spirit behind words should be considered when using them, or elimiating them. My mother says "downs babies" all the time- and she spent her life being a special ed teacher. The fact that she doesn't use people-first language does not in any way mean she doesn't think our kids are people first.
Just as when I say my toilet is retarded because it got clogged for the 10th time that week- in no way do I think my toilet is connected in any way shape or form to any individual...anywhere. It is a word that is describing what my toilet is.
This is just my personal feeling- but we're not going to change the world by eliminating certain words. If it's in people's hearts to hate others who are of lesser capability than themselves- they will find a way to express it. Changing the word does not change the heart. We can spread the word to end the word all we want- unless people get a revelation from God that our children are of value- they will continue to treat them with disrespect. And they don't need a word to do it.
Just my two cents, but I totally understand if you want to delete my comment.

Patti said...

... and I meant eliminate...hit publish too fast.

Katy said...

No, no, no! You do not need to delete your comment at all! I actually wrote a whole apology/clarification post this morning, but then I deleted it because I didn't think it came out right. But in a nutshell, I was trying to say exactly what you said--that some of those things don't bother me because I am able to look past the words and at the person/attitude instead. But I absolutely do not think anyone is WRONG if they are offended by the words, and I'm sure you agree with that too. Words can be very hurtful, but I was just explaining that those particular words--when not used in a HURTFUL WAY--don't bother me. I was just expressing my opinion/struggle, and I so appreciate your point of view. And our shared pity party. :-)

Katy said...

I sooooo did not intend to spark a debate with this post, lol!!!