Wednesday, July 21, 2010

Censored...

is how I feel sometimes…it is how I think sometimes…and it is how I discuss Maddox…I am not a fan of being censored…I remember my dad telling me when I was a teen that I needed to get a class in being assertive with tact…because I had the assertiveness down but NO tact…so over the years I have censored myself…thinking before I speak to people I do not know well…as of late I seem to censor everything that comes out of my mouth…. and to everyone in my circle…I have noticed if I tell my true feeling about Maddie and her delays I am shut down to “she looks good to me”…”maybe she is just being a typical baby”…”she will someday do it”…when people ask how Maddie is doing…the phrase that I dislike intensely…I have learned to say good…she is good for Maddie…because no one wants to hear a sweet cute little girl that is 14 months old cannot clap her hands yet…she claps things just not her hands….they want positive and cute to make themselves feel better….and I get that…with Maddie’s healthcare…the doctors have taken a wait and see approach…SHE IS STILL EATING BABY FOOD! and still NO teeth! and from friends I get the you are over reacting response…I feel censored when I am thinking about the “r” word…I am not a fan of the word…and our family does not use it…but I am failing in making people around me stop…I seem to make excuses for them…about why they said it…and most of the time I do not feel it is towards Maddie…but I know to NOT be a hypocrite I really need to educate people…my expectations for Maddie are very censored…I know I need to be positive and NOT so realistic because it may hinder her development…I feel censored that I am still not comfortable around aging people with Down Syndrome…I will try to raise money for the Buddy Walk….but I still cannot join in…I know I should…but I do not want to cry….and show my insecurities…I am soooo trying to live in the moment and love the moments with Maddie…and I do love the moments with Maddie…I love how she sings, dances, cuddles, blows kisses, clicks her tongue and french kisses me with passion! but my reality is different then most and I cannot seem to censor it….

16 comments:

  1. First, as far as the buddy walk goes- I was surprised because I felt like I would almost have to prep my family and friends about the people we may see but you know, there were more people there supporting others with DS and really so many babies and kids that it wasn't awkward. Second, the reason it is awkward is because it is foreign to us right now, even though we have little one's with DS, it's still a little uncomforable because we don't live that life right now, we're not at that stage and all kids are different so the life others live, won't be the same as yours. But by then we will be used to how our child is or behaves or looks-they will simply be our awesome children and it won't be awkward. So when I see someone that makes me me feel a little uncomforable or sad I try to remember that I'm just not there yet and when I get to that stage I'll be ready and so will you with Maddie. You should go to the buddy walk- I think you will be pleasantly surprised;)

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  2. I agree with Adrienne. Sometimes, getting out of our own head is exactly what the heart needs.

    K, I just want you to know that *I* hear you. I understand how you might feel forced to censor every thing you say and every thing you feel. I can only talk about my own experience, but those first three years after having Gabriel was really tough for me emotionally.

    I'm not saying that I'm 100% okay with having a child with Ds, but I am 100% okay with having my son. Does this make sense? For me, something changed me -- and I think that when I put him in preschool (he was three years old). It was scary because I had to be "out there" in society. Not by myself, in my house, with my son who has Ds, where I could think up all the worse case scenarios.

    Anyway, I have gone on too long as usual, but I just want you to know that you're not alone.

    *hugs*

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  3. Thank you for talking from your heart! It took me a long time to get back into the DS world after Jax brain injury. I still have a hard time when people ask why my 4 year old can't sit up, or even hold his head up. The other one I get a lot is, oh he just has Down syndrome, so he will walk, won't he? Probably not. Its ok to feel those feelings.
    Oh and DS kids get their teeth wayyy late! Jax still only has 7 and he's 4.

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  4. As Lianna said, you are not alone. Even me that I am very positive and proactive with everything related to my son with Trisomy 21, I have my down moments, specially when we have to leave the house because I want people to see my son as what he is, a child, and put the syndrome second.

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  5. This year will be our first Buddy Walk, and I'm pretty nervous about it too...I try not to worry about it, but I'm afraid it might be hard for me. I guess we'll see in a couple of months!

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  6. i can't bring myself to even say the "r" word, let alone think it. also, i have a hard time saying "special needs". i also trip over it and then end of saying "special health needs". when i was in the grocery store a couple of weeks ago, i saw a mom and an older daughter with DS (she was 40) and i approached her, saying that i also had a daughter who had DS. the mom was so happy and just kept going on and on about how much she enjoyed life with her daughter. she kept saying "you're going to love it!" i was amazed. mostly because the mom said that her daughter had never said a word or made a sound in her life. i couldn't get over the joy that this mom had. it made me think that maybe when we get to that point, we will share a similar perspective as that mom. i hope so.

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  7. I get your post on so very many levels. For me it's all the worries about Parker's health that would just take too long to explain to others.

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  8. I feel censored at times too with family. It's like I can't vent about anything or they think I'm dogging on my son, which is NOT true. As far as the Buddy Walk is concerned, it's not a big deal at all, there are so many different people of all levels and everyone is there for the same thing, to support our Ds community.

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  9. Thanks for sharing and being so open about your feelings. I have those moments too where I feel I need to censor some of the things that I say, especially when I don't want to hear the common response "it's ok, he will do it on his own time".

    P.S. Colin just hit 15 months and still no teeth either!

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  10. I totally get your post too. My daughter is 7 and there are times when I see how much she can do and how close to "typical" she seems in some ways; but this week she is in camp with all "typical" kids, in a group with kids her chronological age and a year younger, and I can clearly see her delays. As for the teeth, I can't remember when she got all of hers, but now she still hasn't lost her first baby tooth.

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  11. I have always appreciated your honesty Kim. Russell is only seven months old so I havent got to that stage yet where I notice differences or delays in things...and honestly I dont know how I will feel when I do get there. Reading how you Moms with older kids who are ahead of me in all this feel at certain times and hearing about things you struggle with now and then, it really helps me, it helps to know I dont have to be OK with everything all the time. So thank you for writing your true feelings and from your heart!

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  12. I appreciate your honesty. You're not alone and certainly aren't the only one struggling with these feelings at 14 months. I certainly wasn't ready to meet other families at our first Buddy Walk and it was pretty awkward for me to be around so many older children with Ds. I just wasn't ready. Fast forward a year and I thoroughly enjoyed our Buddy Walk last year because we'd made some great friends and a fun, supportive group where you can say your real feelings as well as get (or give) encouragement to others. By the way... the photo of Maddie in the side bar is ADORABLE! I love that!

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  13. Thanks for being so honest. We all get strength from each other when we share what we REALLY feel. Just today we had friends over, they have a typically developing baby a month younger then our Jack. They ask how he's doing and I almost feel like I have to paint it in a "pretty" light. I find myself thinking, no one wants to hear how hard it is...for all of us. The REAL parts to this journey. So I censored my response accordingly. Thank you for giving me the courage to be honest next time.

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  14. I can so relate! My spin on it is I always try to be overly positive when someone brings it up, almost like "it's no big deal, why are we talking about it"....it's not that I mind answering questions or helping them try to understand better, I think I'm just afraid that if I'm too honest I'll get that look of pity that I HATE! I try to answer and move on to a new topic without the person realizing I've changed the subject.

    As for the buddy walk, I'm not ready either and I'm not sure when I will be....or if I will ever be....and you know what I think it's okay??? I'll donate $ but I don't feel the need to participate; at least not yet. Maybe it's not the same thing, but I have a friend who survived breast cancer and she donates to the cause, but she's never walked in Race for the Cure. I think you should do whatever makes you most comfortable and not worry what others might think! (I know easier said that done!)

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  15. everything you say is true...it's so cliche to say, but it's truly a journey! My Brooke is still so young and your Maddie is still so young I still haven't quite figured out what's appropriate to say to whom....
    you're doing great!

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