Wednesday, December 5, 2012


Maddie came home from school today...takes her coat and shoes off...and turns to me places her hands on her eyes and says boo...tears well up in my eyes and my heart fills with hope...Maddie is a rollarcoaster...of ups and downs...tears of happy and tears of bummed...the other day I was bummed I would not say sad...that is to strong of a word...maybe irritated...we were listening to a Taylor Swift song and it was about teenage stuff...love, break ups, being noticed...and I was just bummed...I want Maddie to fall in love...i want her to have sex...get married...and not have it be an issue of if its for real....or if its her being taken advantage of....I try so hard not to think about this topic...but I do...not often but at times it creeps in...so I was talking about it with chad and of course I was just telling him everything that pisses me off about Down syndrome...and another hard topic came up...of kids nominating kids with Down syndrome for a title...I am not a fan of this...at all...and I told chad that I would not let Maddie accept it...if it ever happened...he tried to argue with me...but I do not want "sympathy" for Maddie...if someone wants to honor Maddie they should and could do it everyday of the year...by sitting with her, helping her, being her friend...asking her to lunch...talking with her on the phone...but wanting to get on the local news for a so called good thing..is just not my style...I know harsh...but I am a firm believer that you can be nice everyday...not just for a college resume...chad said I feel this way because I was the mean girl...but I wasn't I was the I don't notice girl...I was to caught up in me...oh how times have changed...i do not watch any news stories about this topic...i dont like the person that was nice and let the kid win a match...maddie will know and understand if she can or cannot win a game...give people more credit then a curtousy win, title, laugh, or smile...I am choosing inclusion for Maddie because i want her to be the best Maddie she can be...i want her to stand on her own and make her own choices and decisions...i want her to be independent...and part of this is her knowing what she can and cannot do...i also want Maddie to have real friends...ones that ask her to sleep over and go to the mall...friends that talk on the phone and giggle all night...i want her to sneak out of the house and get caught by her best friends mom...i want her to have real friends that love her for her and help her up and stand up for her...I want so much for Maddie and it all stems with her communication issues...I have really had to get honest with myself and her speech...I denied that she was going to have issues...I choose not to worry about this topic...I choose to not read anything on this topic...I did not want to think Maddie could not speak clearly...I just wanted it to go away...yesterday I broke down in the disabilities office...I realized that I was admitting that Maddie has a disability...I really have never admitted this and I have always held out hope that Maddie would be different...that she would not need extra services...even though she has received extra services for years...sometimes I forget...everything about Down syndrome...and Maddie is just Maddie and I love that feeling...I love that time when all is normal...and healthy...that is most days...but sometimes loneliness creeps in...and reality cannot be ignored...I have came a long way in being Maddie's mom...and it makes me so mad when I get bummed...I just want to be ok with "it" all the time...I want to be that person...that strong person that is just thankful...

6 comments:

  1. I so get what you are saying here. To admit Kristen has a disability is hard for me. Although at times I feel like that strong person who is thankful, I still have moments when I am not yet over "it." I often wonder if, me , personally will always struggle in some way. I do not know, I also agree that if Kristen is made prom queen or wins a match, she does it the way every typical does. No special treatment. She will know. What I can say that even at the young age of five, she already has real friends. People do like her for who she is and not because she has a Down syndrome. I feel like this is a shimmer of hope for the future really. It is tough to think about that future at times so I often do not. I am learning to really just enjoy the moment because in a mere five years I am seeing that my fears are often far from the reality! :)

    ReplyDelete
  2. I totally understand your sentiment here. But is anyone okay with anything ALL of the time? I am sure there are times when we feel this way about all of our kids, times when we realize certain things are going to be hard for them. It seems like 'it' would be easier but then would it really be real? Some people seem to do a better job of hiding their or denying their moments than others :)

    ReplyDelete
  3. I have the same thoughts creep in...There have been times I have teared up thinking about how I hope Russell will be able to drive one day, hang out with friends, sneak a beer, have a girlfriend, get married...And the thought that these things may not happen literally crush my heart sometimes. I sooo know how you feel. It can hurt.
    About the other thing...Kids with Ds being nominated for awards or that prom thing you guys do down there in the States...I am on the fence with that...Actually, to be honest, I tend to lean more to the side of I wouldn't mind if people treated Russell extra special, because he is. He wasn't born to be just like them...He will battle and struggle with things his entire life...And along the way people will see his beautiful spirit shine...And so if he makes them feel good, makes them feel like honoring him or giving him some award...I am ok with that. I don't think it's because they feel "sorry" for him or completely out of pity...But more because they see something in him that makes them feel a certain way...I don't know how to explain it and I suppose I am just rambling now! lol
    Great post!! Love the ones that make a person think :)

    ReplyDelete
  4. I'm so not a huge fan of "those" news stories either...I always feel like the kids/town are just trying to get recognition for doing something "special"...no hands out here please! If Sutter earns it great, if not then he doesn't need it.

    Speech is huge for me too. I spent a long time thinking it will just happen one day...after he learns how to walk the speech will come, after he turns 2 the speech will come...well, he run everywhere and is sneaking up on 3 and we have a couple of words! :( Needless to say I'm now pushing all the speech therapy I can get down his throat in hopes that it will help and it is, just slowly!

    ReplyDelete
  5. I understand what you are feeling. My Luke is only 2 1/2 and I usually don't think about the future, but sometimes it all crashes down on me. A good friend told me when Luke was born to remember my idea of "happiness", may not be what he needs. I think of all the things I went through, first loves, proms, college, etc.and want it for him. He may be perfectly happy without any of it, or with lots of it. It's such a hard balance.
    We are reaching that point with the speech, I wish I pushed more, and am finally picking up the slack with extra services. Speech is the first "delay" that I have really cared about so far. It really scares me though.

    ReplyDelete
  6. Ah so with you on this entire post! I hate the stories of people with Ds being prom queen or whatever. It always feels like a backhanded compliment or a cruel joke. Just makes me very uneasy...

    And the teenage stuff...dreading it and sad for it all at the same time. I *hated* high school. Kids are just mean and I don't want Claire to have to deal with crap like that. But I also want her to have the sneaky late night phone conversations with her friends and all that good stuff too!

    ReplyDelete