Wednesday, March 24, 2010

"it"

I would like to back up… to a time when I thought people should just get over it…over anything and everything…I just could not be bothered with what I thought was “weak” people…but now I am one of those people that just cannot get over it…and I am not sure I am ready to get over it…”it” is Down Syndrome…I realize I have lost friendships…I have alienated family members…because my coping skills for this diagnosis…these skills are frankly not there…today I had a person say you look sooo tired…tired I said…yeah I just did not put on makeup…she said no tired and with her hands gestured a long face…I simply stated that Chad was gone for a few days and I was just gearing up for the long days ahead…but really I am tired of “it”…then within minutes another person asked the how are you doing? question…I am not a fan of this question…I realize this person wanted the “its great” answer! but really I am not ok…I am here in a shell…I have good days and happy days…but then I seem to come back to this…”it” has taken its toll on me…should I be over “it”…maybe but I have only had 365+ days to come to this…I have only had a short amount of time to process everything…when your child is born and in the NICU…you just want her to live and thrive…”it” was not important in the hospital…her esophagus and heart was…now that her health issues are there…but not a everyday issue…I have time to ponder the Down Syndrome…as people come in and out of my home with there “normal” children they want to say things like…look she is “normal”…or see she is like every other baby…yes I suppose she is…but I do not dwell on the perfect ness of her now…I dwell on the scariness of the future…I do not want her to get sick and have to stay in the hospital…I do not want her to get made fun of…I realize there child may be made fun of…but there child can lose weight or get another haircut…my child will be made fun of and have a stigma…because she is who she is...I just wish people with “normal” lives would realize that I once had that…and now I do not…and I will never again…because for my life I will have to worry about my child and health care…no exceptions…and never again will I have the fairy tale of my child growing up and making true friends, going to a dance with a boy, graduating on time, going to college, falling in and out of love, getting married, having sex, driving a car, sneaking out of the house, living on her own completely…because with her there will always be a plan and a lot of people helping out with that plan…so am I over “it” F*#$ NO! do I celebrate my Maddie…F#*@ YES! sorry about the f word ☺ it makes me smile!

6 comments:

  1. I hear you. Loud and clear. I love your raw honesty. : )

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  2. Thank you for your honesty and I think everyone has their own timetable for getting over "it", so don't rush yourself because of others who think you should be in a different place than where you are. We didn't have to endure the NICU and many other health problems with Emily so we were able to process the DS diagnosis rather quickly...still have those days, but for the most part I love my new life with DS. And you are right, most people ask how you are...but you know you can't really answer honestly because they would run if you did...Our daughters are close in age so if you ever want to chat you can always find me on my blog http://livinglifewithes.blogspot.com or livinglifewithes@yahoo.com.

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  3. You're not alone. I have a friend I met at the NDSC convention last summer who took longer than a year to get over "it". I'll be seeing her this Friday as she's in town with her family. Her daughter is now 18 months old and it was a long, painful journey for her. Another mom I know in Oregon took well over a year, too. I also have a blogging friend who is still not completely over it and her son is 3. Just wanted you to know... it's something we all deal with differently. You're not alone at all. I find the best friends to talk to are those walking the walk. My (before Ds) friends don't really understand.

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  4. I wonder what over "it" really means? That there is no more fear? No more worry about teasing or our children being left out? No more sorrow about the cognitive delays? Not caring anymore that she may not ever have a husband and family, or no longer fearing that she may get taken advantage of? That you don't hurt like hell when cruel people say horrible things?

    I'm not over those "its". I'll never be over those "its". You might never be over those "its". And I believe that's a good thing, a normal part of being a parent. But at some point you may have to make yourself stop dwelling on these "its", and let life come each day in its own time and way. Baby steps.

    And if in time you can't stop thinking about those other "its", you may need to talk to your dr because you just might have the PP Blues.

    If somewhere deep inside you are comparing yourself to other moms who you believe are over it, or got over it in a jiffy... don't do that to yourself. I don't believe there is a mom out there that doesn't feel a twang after hearing the IFSP reports. (And even the one putting on big shows can't "say it" without tearing up, so I don't believe she's over "it" in the way you are describing, no matter the claims.)

    You are handling this all in a very normal way. I think that over "it" means that you accept, value, and love her as she is. You are already doing that.

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  5. Thank you for posting that. When Samantha was born, one of the first things I said after hearing her diagnosis was "How can I protect her?" This question lives with me every day. She is my only child, and will remain as such, so I have so many things to worry about with her. Our "normal" and "okay" are very different from the general public, and in all honesty, that's "okay!"

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  6. I can relate to what Becca wrote. Gabe is my only child, and I can say that "getting over it" is still something I deal with -- and he'll be five years old next month.

    Kimberly, I found "the diagnosis" to fall away after a while, but I stumble when I face new situations. For instance when Gabriel started mainstream school past September -- I was scared. The trick was focusing on Gabriel and NOT everyone else. So far, so good, although we have bumps, but who doesn't?

    Really look at Maddox. I mean really look at her. Even if she didn't have Down syndrome, she would have impacted your life when she joined your family. Sometimes, when I am feeling really overwhelmed because my life is SO not what I had thought it was going to be, I think this about Gabe. No matter that he has Down syndrome, my life would have changed anyway. Does this make sense?

    Anyway, I love your blog, I think you're a REAL mother dealing with some hard stuff. And I get that. I really really do.

    Hugs! Tight ones!

    PS Check your blog email. I've added you to my blog, okay?

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