Wednesday, September 8, 2010

thanks 4 the postive...

A better word then chill is numb…numb that I am starting to re-think who I am…and how I feel…and how I am perceived as a mother of a daughter born with Down Syndrome…it has been a little over a year and a half that I found out that I was going to be a “special” parent…in the beginning it was ok by my inner circle that I was scared and pissed…and over time that has diminished…I have been expected to get with the program, be excited and happy that my Maddie is just so cute…not that she is smart or developing timely…but she is just so cute…I am now expected to be ok with every new medication that she is put on…and relieved that she does not need surgery yet…and why would I ever question doctors and what they prescribe my 15 month old…why am I challenged when I say I am not comfortable with older people with Down Syndrome…why am I questioned when I have reservations about the future…because that very person that is questioning me…has a “normal” child…there biggest worry is if there child is getting good grades…my biggest worry is she giving it her all…because I am not sure the letter grade will matter much…Maddie is more then a cute face…Maddie is more then a doll…she is a toddler, and will soon be a adolescent and an adult…I am told to just go with the flow and look at the positive side of things…so here it is I am so excited that my child will face great health issues for her life…I am so relieved that my child is on 3 different medications for life and possible surgery for the rest of her life…I am so thankful she may never be asked on a date…words can not explain for relieved I am that she may never drive or be independent…I am so happy that she will struggle through school…I am so elated that she will have to work 3 times as hard as a “normal” child to do anything! And I without words that she will be stared at and mocked…Wow I feel so much better about being positive…I never knew that the experts on raising my child were a parent of a “normal” developing child…after this rant does it mean that I love or appreciate my Maddie any less…HELL NO!! I love her and just because I have an opinion about my daughter and I am scared shitless…I will continue to pick my audience more effectively and efficiently…we celebrate "the Maddie" every moment of everyday…because she is ours and weI love her more then we could have imagined…and I would not change her or take away the Down Syndrome…I would just take away the hurt she currently and will endure in the future…oh yeah that is where the “normal” child parent would say our children will have there struggles to…they are just different obstacles…there it is a couple weeks of pent up anger and confusion…smiles

5 comments:

  1. I feel the exact same way as you sometimes. My husband just might freak out if I posted something like this on our blog. It ISNT the same. I have had several people tell me stuff like, "Well, Abbie will have struggles, but so will my kids." Yeah, NOT the same thing. Ugh!

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  2. I feel the need to speak for those with "normal" children- You are right they may never really understand what you or Maddie will go through in life but keep in mind- they love you and are trying their best to relate and say the right things. I know you are venting and I totally get that- just remember those people who make frustrating comments may be- or may have been you at some point with some other situation in like. Does that make sense- I love you and get what you are saying but I really relate to the other side too- just trying to let you know they care and speaking positive into your life. Love ya! (((BIGHUG)))

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  3. I have read this over a few times...I just wanted to leave a comment saying I know how you feel...I do.
    And to be honest nothing annoyed me more than people comparing their worries with their "normal" kids to that of mine with Russell...to have them say "well none of us know what the future holds for our kids" Um, ya SO not the same worries!!! I feel if you dont really know what to say or how to relate...SAY THAT! Do not try to minumize our worries or concerns because honestly that hurts more than some one just saying "I dont know what to say"

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  4. I know this post wasn't easy or fun for you to write, but thank you. Thanks for being honest and transparent. My little guy with Down's is 5 months old, and I was afraid to tell anyone how angry I was when he was diagnosed (which wasn't until he was almost 3 months old). I quickly figured out that people were OK with that, but I am already feeling the pressure to "get over it." Thanks for letting me know that it's OK to be angry and scared whenever the feelings strike. I absolutely adore my son, but I have so many of the same fears you do.

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  5. My daughter has Down Syndrome and honestly I forget that she has it most of the time!! I wouldn't take away her Down Syndrome for the world! It is a part of her. I sure could do without all of the medical issues, but there are so many "normal" children out there that go through the same medical struggles as her. Down Syndrome doesn't define a person. Try to embrace the fact that you have a beautiful, smart, incredible daughter! If you believe she can do the same things as a "normal" child she will amaze you!!

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