Showing posts with label amniocentesis. Show all posts
Showing posts with label amniocentesis. Show all posts

Friday, October 7, 2011

31 for 21: Sisters Who Love Their Sister

I have said it and wrote it on many occasions-- I am not the greatest of writers, nor am I a reporter. I talked with my husband yesterday about his memories and feelings of when we first received Vada's diagnosis. I asked him questions on his feeling's about that time in our lives. I think that together we did a pretty good job on the video. We where both nervous however, which sounds funny because it was only him and I doing the recording (oh, and little V) but we really wanted it to be truthful as well as helpful to whoever watched it.

The fact is, we grieved and hiding that truth isn't beneficial for anyone.

We received Vada's Down syndrome diagnosis prenatally. I agreed to the amniocentesis, finally, after declining on several different occasions only because at this particular moment that it was being offered to us again, I had just been told about our baby having serious heart and stomach conditions. The words defects, surgery, mental retardation, and death were thrown at me along with subtle suggestion to abort and in a moment of fear and confusion, I agreed to the test. If I were to go back I wouldn't have done the amniocentesis, the results didn't matter prior to knowing and they don't matter now.

I say that the positive Down syndrome results didn't matter but I still grieved. My husband, he grieved as well. Truthfully, when admitting that I grieved, I actually cringe a little inside. Admitting that I was mad and confused and scared about my daughters diagnosis makes me feel ashamed in myself. I know that these feeling are "acceptable" and also I know that many parents who were or are in similar situations have felt a lot of the same emotions that my family and I did. However, I still feel badly that I felt that way, because when I look at Vada, when I am holding her in my arms, when I hear her voice, when I watch her play, interact, talk, sign, eat, sleep, breath... I see perfection. Everything about her, to me, is wonderful and I know that my husband feels the same way that I do. If I could do anything differently about the video that Justin and I did yesterday I would have added all of this into it.

We all have to come to terms with the fact that we are not in control of our lives, not fully anyway. What we want, or think we want isn't always what we are going to get. I never would have asked for a child who has Down syndrome (because I knew nothing about Ds prior to Vada's birth) but now I wouldn't change a thing and as far as V goes, well, I love her beyond any form of measurement, her father loves her more than I think he ever thought he could love another being and our older girls, Jasmine and Kiliegh... they love her too.

Again, I know that I am not a reporter but my girls have humored me in answering some questions about their baby sister Vada, who happens to have Down syndrome... I will say now that Kiliegh said something that I didn't correct her on (and I am sure you'll catch it). I didn't need to correct her, I could tell that she caught it herself and later she fixed her mistake-- we are all learning.  (Don't forget to scroll to the bottom and pause the music before watching the video.)







Saturday, January 29, 2011

Life Is NOT Disposable

Asking me if I would knowingly have another child who has Down syndrome is like a double edged sword. I have a daughter who has down syndrome and I wouldn't change her having Ds because that is a part of her and I love her. I would never and could ever have an abortion. I know myself and I know I would never forgive myself. Plus, that is a choice that I believe is truly, not mine. Maybe if the question was asked differently, then I could answer it more appropriately.

I am hoping that my writing abilities are at the very least semi comprehensible, that way I am able to write this in an understanding way...

Justin and I have a possibility that together we may always create a child who has Ds. We are not certain if it is a fact yet and are in the process of having genetic testing done to find the answers we need. Due to a recent flaw in my method of birth control we have been forced to make a decision and unfortunately, we cant make a educated choice with out knowing if Justin is a carrying parent for the Trisomy21 gene.

I tried to explain to my OBGYN when I was in her office on Friday about Translocation Trisomy21 (which is the type that little V has). Dr. P. didn't get it at first. Her suggestion was this...,

Dr. P. "You know what you could do..?" She said as she was looking at Vada who was sitting ever so sweetly in her car seat. Her big almond eyes staring towards the Doctors like she could understand what she was saying. "You could get an amnio and if the fetus had Trisomy21 then you could just abort until you have one that doesn't have it." I instantly felt my face warm and I wanted to get up and leave. Is it wrong for me to want a good doctor? One that believes in God. She wouldn't have recite scripture to me, in fact that might creep me out. All I want is one that believes life is at conception and is created by God and has a purpose. Am I naive? I liked this Doctor. I haven't had much time with her, but up until this point she did her job for me just fine. Now, though, I don't know if I can go back, but I don't really want to go looking for yet another new doctor.

I took a deep breath (something I am getting really good at doing), and then I explained that the 1 in 4 chance was Justin's chance on being a carrying parent and not an actual ratio for babies that we could "produce" who have Ds. Then, I did it. I added in what I truly felt and while I did it nicely and held my composure, I didn't sugar coat it. I couldn't, Vada was right there and she may not have understood what it was that I was saying, but I was saying it for her. I told the doctor that I knew Vada had Ds before she was born and that the knowledge didn't matter. I love her no matter what. I told the her that for me and for my personal believes, (to me), abortion was murder and something I couldn't live with. After calmly stating my case she shook her head and said "Okay, then you wouldn't really want to do that then." She accepted what I said and respected it to some degree, there really wasn't much of a response other than that.

I'm wondering what I should do. I'm feeling a trend with doctors lately and I am wondering if something is wrong with me. I complain or have complained about doctors a lot since the beginning of my pregnancy. Are my standards too high? Is there no such thing as a doctor with real morals and christian values anymore? Am I wrong for wanting those things? Should I find a new doctor? Or do I just agree to disagree? After all, isn't it wrong to not accept her for her differences? She did hear me, acknowledge me and then drop the subject once I told her my believes. Is that good enough? Its something that I am praying about.

Why is life so disposable to people? I don't understand how anyone could throw that option around so easily and actually live with themselves. I'm sorry, I just cant. No, I wont.

What about those poor women and even girls who are offered this option but are never told the other side? Who is going to help them when they are hurting because of their choice? Or worse, what about the ones who get pregnant over and over and use abortion as a means of birth control. It makes me sick. That visit made me sick and has left a fowl taste in my mouth and a longing to never let Vada go. The realization is setting in that there are people in this world who would not have made the same choice that I made in keeping Vada and those who look at Vada now, in her beautiful baby flesh and don't see her as a real person who has a place in this world and who carries an over abundance of value. Its sad.

So, back to the original question..., Would I knowingly have another child who has Ds? Yes and no. If Justin is a carrying parent then we have decided that he will probably have a hysterectomy since it is a less invasive procedure for him. That decision is not final but it will be something that we will look further into if needed. It's hard to give a definite answer. I love children and I would someday like to have a son or another daughter, but i am not in a place to really begin planning for another addition in our family. With that being said, I would undoubtedly adopt a child who has Ds or even another disability and I would love him or her as my own if we did decide to not have any more biological children.