Tuesday, June 18, 2013

Testy testy...

The person i was 4 years ago is not who i am today...not even a hint of her really is in me...before i was delusional with a flighty personality...it was cute when i was young...or i thought it was...i never saw myself growing up or changing...who i was served me well...i got what i needed and used it...but then a ultra sound happened...and that day i died...in the beginning i thought this was the worst thing possible...me having to look at reality and not through my fairytale glasses...i struggled for a long time...probably to long...but the end result is not half bad....i am no longer ignorant...or selfish...and i could careless about people who continue to think my child is not equal...to them i will continue to fight and annoy,,,and hopefully one day make a difference...in my small world...

so why the dramatics...because in the beginning of this long journey...i had a different opinion about the test..

The test...if you have a child with Down syndrome you know the test I am referring to...if you don't...let me enlighten you...it is a blood test that tells you early on if you are having a child with extra chromosomes...we opted out of this test...not on a moral stance but on a I am invincible stance...I am not sure what I thought about the test before I had the no bubble ultra sound...but I know what I think of the test today...I think it is trying to eliminate a child like Maddie...maybe not to others but to me it is personal...Down syndrome is the only abnormality they test for prenatally and encourage to abort...or kill...which ever makes you sleep better at night...so me and Chad go rounds about this test...we argue...I research...I present why not...he presents why yes...it is just good family discussions and we always agree to disagree...the other night in one of round robin discussions...he said I would have wanted to know at 8 weeks pregnant if Maddie was going to be born with Down syndrome...this through me off the ledge...again...why...because for 4 months straight I cried myself to sleep...because my beautiful pregnancy was cut short...for 4 months I did not know the answer if my Maddie was goings to live or die...not because of Down syndrome...but her other health issues that came along with the extra chromosome...because for 4 months all I did was obsess over everything...because of the early diagnosis I had to begin the process of what if and knowing I have no power to change anything...I stopped loving my baby...I did...it was harsh and it was frustrating...the only reason for me the test was a good thing...was that we delivered in a hospital that could "fix" her when she was born...there was no separation from her...I knew what to expect in regards to surgeries and possible complications with her heart and esophagus...but on my heart and emotional side I wish I would have known at birth...so I could hold her and know that she was perfect...I know I would have still been heart broken...but I truly live in a dream like state...I like fairy tales and if I can prolong any happy ending I will...so if I could have waited and not been forced to make a decision on whether to kill my child or not...I think I would have been better off...when we found out everything health wise with Maddie we discussed a do not resuscitate on her...that is to something while pregnant I did not want to discuss...but we had to...or we thought we did...because if I was holding her and that issue came up...I would tell them to fight for her and if they could not "fix" her i would find someone who could...because holding Maddie is like holding perfection...

My life today is better then before we had Maddie in it...I would have told you 4 years ago that was not possible and hated you for trying to change my mind...but today as I watch her grow and learn and be a very productive member of our society I know that Maddie does have a place in this world...


  1. Interesting post. I don't like the idea there is a test out there specifically for Ds. It feels as though our kids are being weeded out. But I suppose if people are getting correct info on Ds with the test so that they can make informed decisions and prepare for their child, I guess that's a good thing. It's such a hot topic. Lot's to think about!

  2. Kamdyn's diagnosis was post-natal, and I had a hard time for a while after she was born. Since I have no way of knowing, it's hard to know if it would have been easier for me if I had known while pregnant. I know I would have kept her no matter what. I'm pregnant now, and I didn't do amnio or anything like that, but I did a quad screen for the first time, and I had an in depth sonogram done with a geneticist. I just wanted to have a heads up if there was so e kind of health issue.

  3. This is a great post Kim, honest, brave and I got such a good understanding of the position you were put in when you found out Mads had Ds before she was born. I don't know how I feel about the test...a sad kind of inevitability I think I know what it might mean, owns I ask myself will our kids be the last of a generation!

  4. If you guys hadn't known about her health issues before birth is there a chance it wouldn't have been caught and she would've died without the repairs being done asap? I don't know how life-threatening her conditions (fistula, etc) were?

    I totally understand though...what person wants their happy pregnancy to be full of stress, fear, worry, and lots of decisions to be made....that's tough. And you don't have to answer this but was there ever a moment when you were like "oh shit, we're having a son....not sure I'm ready for this" (while pregnant with Max)?