14 years ago today my world changed forever.*I* changed forever. I went from a mother whose children were perfect, the smartest, fastest, brightest, future superstars to the mom of a child whose future was far less certain. They laid a baby on my chest who looked at me with her curious almond-shaped eyes and almost begged me to love her, regardless of her differences. And I did.
Wednesday, June 27, 2012
Tuesday, March 20, 2012
Wednesday, March 14, 2012
Monday, March 05, 2012
Friday, February 24, 2012
The house is quiet, the men in my family have fallen asleep in their recliners, watching tv. Kristin is out with friends. Ciarra is asleep in her bed, Ipad, Ipod, remote control, a coloring book, and her ever-present baby blanket close at hand. She is a conglomeration of all things teen, and all things child.
She comes home from school, hurls her backpack and boots into the mudroom, heads to the kitchen for a snack, and then it is straight to her room for some Ipad time, a little Kei$ha, and some drawing or coloring. Middle school is quite exhausting, apparently.
She grabs some dinner, tells me she really really doesnt like it, requests a hotdog with a sweet smile meant to get me to comply, and waits patiently while I make her two, cut up, with ketchup on the side. As she waits, she holds the cat like a baby, tells her she loves her, pours her some food, and reminds me that she has a fieldtrip tomorrow and will need a note. Our lives are so normal sometimes that I forget all the things I worried about way back when.
Down syndrome means something different now then it did when she was small. It just doesnt feel like all that big a deal. On the other hand, my entrance into this very unique club of mothers has left some indelible impressions on my heart. Sometimes, I think I have forgotten the pain and the worry and the huge questions about the future. I do not recall as clearly the days I sat staring at her as she slept, worrying about all the things that might happen, that statistically could happen. And time has allowed me to forget, somewhat, all of the naysayers, the haters, the people who seemed to hang on my every word when she was small, reminding me just how much there was to fear.
2000 Stenberg V Carhart case, the graphic testimony of the Drs, as they described aborting "late term" fetuses shocked me to my core.
WARNING: THE FOLLOWING BLOCK OF QUOTATION IS EXTREMELY DISTURBING, GRAPHIC, AND DIFFICULT TO READ. IT IS THE ACTUAL TESTIMONY OF DRS ARGUING ONE TYPE OF ABORTION OVER ANOTHER. IT IS ALSO VITALLY IMPORTANT THAT THOSE WHO WANT TO STOP THE ANNIHILATION OF CHILDREN WITH DOWN SYNDROME UNDERSTAND EXACTLY WHAT WE ARE UP AGAINST. THERE ARE NO PHOTOGRAPHS, JUST THE WORDS OF THE DRS IN SUPREME COURT TESTIMONY. (IF YOU CHOOSE NOT TO READ, SCROLL DOWN TO THE GREEN CHECKMARK)
Question: Are there times when you don’t remove the fetus intact?
Carhart: Yes, sir.
Question: Can you tell me about that, when that occurs?
Carhart: That occurs when the tissue fragments, or frequently when you rupture the membranes, an arm will spontaneously prolapse through the oz. I think most...statistically the most common presentation, we talk about the forehead or the skull being first. We talked about the feet being first, but I think in probably the great majority of terminations, it’s what they world call a transverse lie, so really you’re looking at a side profile of a curved fetus. When the patient...the uterus is already starting to contract and they are starting to miscarry, when you rupture the waters, usually something prolapses through the uterine, through the cervical os, not always, but very often an extremity will.
Question: What do you do then?
Carhart: My normal course would be to dismember that extremity and then go back and try to take the fetus out either foot or skull first, whatever end I can get to first.
Question: How do you go about dismembering that extremity?
Carhart: Just traction and rotation, grasping the portion that you can get a hold of which would be usually somewhere up the shaft of the exposed portion of the fetus, pulling down on it through the os, using the internal os as your counter-traction and rotating to dismember the shoulder or the hip or whatever it would be. Sometimes you will get one leg and you can’t get the other leg out.
Question: In that situation, are you, when you pull on the arm and remove it, is the fetus still alive?
Question: In that situation, are you, when you pull on the arm and remove it, is the fetus still alive?
Question: Do you consider an arm, for example, to be a substantial portion of the fetus?
Carhart: In the way I read it, I think if I lost my arm, that would be a substantial loss to me. I think I would have to interpret it that way.
Question: And then what happens next after you remove the arm? You then try to remove the rest of the fetus?
Carhart: Then I would go back and attempt to either bring the feet down or bring the skull down, or even sometimes you bring the other arm down and remove that also and then get the feet down.
Question: At what point is the fetus...does the fetus die during that process?
Carhart: I don’t really know. I know that the fetus is alive during the process most of the time because I can see fetal heartbeat on the ultrasound.
The Court: Counsel, for what it’s worth, it still is unclear to me with regard to the intact D&E when fetal demise occurs.
Question: Okay, I will try to clarify that. In the procedure of an intact D&E where you would start foot first, with the situation where the fetus is presented feet first, tell me how you are able to get the feet out first.
Carhart: Under ultrasound, you can see the extremities. You know what is what. You know what the foot is, you know, what the arm is, you know, what the skull is. By grabbing the feet and pulling down on it or by grabbing a knee and pulling down on it, usually you can get one leg out, get the other leg out and bring the fetus out. I don’t know where this...all the controversy about rotating the fetus comes from. I don’t attempt to do that. I just attempt to bring out whatever is the proximal portion of the fetus.
Question: At the time that you bring out the feet in this example, is the fetus still alive?
Question: Then what’s the next step you do?
Carhart: I didn’t mention it. I should. I usually attempt to grasp the cord first and divide the cord, if I can do that.
Question: What is the cord?
Carhart: The cord is the structure that transports the blood, both arterial and venous, from the fetus to the back to the fetus, and it gives the fetus its only source of oxygen, so that if you can divide the cord, the fetus will eventually die, but whether this takes five minutes or fifteen minutes and when that occurs, I don’t think anyone really knows.
Question: Are there situations where you don’t divide the cord?
Carhart: There are situations when I can’t.
Question: What are those?
Carhart: I just can’t get to the cord. It’s either high above the fetus and structures where you can’t reach up that far. The instruments are only 11 inches long.
Question: Let’s take the situation where you haven’t divided the cord because you couldn’t, and you have begun to remove a living fetus feet first. What happens next after you have gotten the feet removed?
Carhart: We remove the feet and continue with traction on the feet until the abdomen and the thorax came through the cavity. At that point, I would try ... you have to bring the shoulders down, but you can get enough of them outside, you can do this with your finger outside of the uterus, and then at that point the fetal ... the base of the fetal skull is usually in the cervical canal.
Question: What do you do next?
Carhart: And you can reach that, and that’s where you would rupture the fetal skull to some extent and aspirate the contents out.
Question: At what point in that process does fetal demise occur between initial remove...removal of the feet or legs and the crushing of the skull, or I’m sorry, the decompressing of the skull?
Carhart: Well, you know, again, this is where I’m not sure what fetal demise is. I mean, I honestly have to share your concern, your Honor. You can remove the cranial contents and the fetus will still have a heartbeat for several seconds or several minutes, so is the fetus alive? I would have to say probably, although I don’t think it has any brain function, so it’s brain dead at that point.
Question: So the brain death might occur when you begin suctioning out of the cranium?
Carhart: I think brain death would occur because the suctioning to remove contents is only two or three seconds, so somewhere in that period of time, obviously not when you penetrate the skull, because people get shot in the head and the don’t die immediately from that, if they are going to die at all, so that probably is not sufficient to kill the fetus, but I think removing the brain contents eventually will.
The day after Ciarra turned three years old, the case was decided. By a 5-4 majority, the Nebraska law was struck down, as were all other state laws banning partial birth abortion. The type of abortion discussed above, however, was allowed to remain. Called a D&E (Dilation & Extraction, it is the most common form of abortion used in the third trimester.) In 2003, however, the federal government enacted a Partial-Birth Abortion Ban Act. Late term abortion is still legal in the following states: Connecticut, Florida, georgia, Illinois, Indiana, Maryland, Montana, New Jersey, New York, Pennsylvania, Texas, Virginia, Kansas, and Washington DC.
•even after fetal viability, states may not prohibit abortions “necessary to preserve the life or health of the mother;” •“health” in this context includes both physical and mental health; •only the physician, in the course of evaluating the specific circumstances of an individual case, can define what constitutes “health” and when a fetus is viable; and •states cannot require additional physicians to confirm the physician’s judgment that the woman’s life or health is at risk. •29 states permit abortions to preserve the life or health of the woman
I was beginning to understand just why these women hated me. I was one of a very few voices trying to hold back the tide of termination for fetal defect that was about to sweep our tiny community. Studies at the time had the termination rates for prenatally diagnosed babies with DS at 84%. Somewhere in the innocense of my mind Pre-Ciarra, I had known about abortion. I was already firmly entrenched in the prolife movement. I had been an unwed teen, I had faced a crisis pregnancy. I had read the books, heard the stories, lived the very real fear of an unintended pregnancy. I knew which side I stood on very well, and was determined to continue sharing my testimony with others. More than anything, I wanted other moms who got a prenatal diagnosis to hear my story, Ciarra's story. To learn firsthand that it was going to be ok. I believed that seeing my beautiful child, her smiling face and beautiful almond eyes, would give them pause, as they made their decisions. This was possible. This was do-able. This was a CHILD.
Nothing could have prepared me for the brutality of the world I suddenly found myself in. There was no arguing, it was very real, these were the Doctors themselves, talking about how to best kill an unborn child, words like "exsanguinate" and "disarticulation" stuck in my head. I was stunned, disturbed, and horrified to realize that the words being bandied about in court very specifically pertained to children just like mine, just because they were just like mine. I was learning that the words the Doctors used were whitewashed in society as a whole, "Fetal defect", "birth defect", "Prenatal screening" were all acceptable ways to describe the very same things the Drs so bluntly discussed in Carhart: killing babies because they would be born just like mine.
I dove into advocacy, and I dove in completely sure that I could use our experience to show others that there was nothing to fear. I was convinved that seeing kids like Ciarra living their normal lives, would be evidence enough. If *I* could do this, anyone could.
I was wrong. The vile, hateful, cruel words of the women who had terminated and didnt want me to share my testimony followed me. They ridiculed me. They ridiculed my child. They mocked her, laughed at her, and scorned anything positive I wanted to share. I tried so hard to turn the other cheek, but I was falling into a maddening pattern of creating enemies. And no one would listen. The worst part was, the people I entrusted with advocating for my child didnt believe that this issue warranted their concern. They were afraid to take on the "abortion issue", and in shying away, I believe they were tacitly implicit in the genocide to come.
I was screaming into the wind, and I simply could not wrap my head around the fact that the people who COULD help stop it werent interested. It was too dangerous for them. I was on my own. Be Not Afraid. I was honored to be one of the first contributors to the site. Monica, Shelley, Michele, and I were each others rocks during that time. And somehow, despite all that was against us, we managed to save lives. We were effective, united, and powerful in our ability to share hope.
Still, the Down syndrome community was sitting in the corner with their hands over their collective ears, humming a tune to drown out the maddening noise of the slaughter of thousands of babies around the world as they refused to take a stand. Baby steps were happening, BabyCenter was beginning to see the problem of unfettered access to the pregnancy boards by both extremes. Rules started to be put in place, if you had not given birth to a child with Ds, you couldnt post on certain boards. if you hadnt aborted for DS, you couldnt post on others. The battle lines were being drawn. But privately, I was still ostracized and derided for my determined stance. I wrote letter after letter to the national groups, begging them to take a stand, to do SOMETHING, before it was too late. Just to firmly say "we think aborting for Ds is wrong". To say ANYTHING. They chose intead to stay silent.
We eventually decided that we should get more formally organized, and we all put our heads together and chose a name that reflected our great passion and belief in the sanctity of life. Our group would be called The International Down Syndrome Coalition for Life (IDSC).
As Di explains it:
I had long believed that all life was precious. Long before I ever laid eyes on my sweet girl nearly 7 years ago. But something happened after she was born. The moment she was born, the medical staff mourned her as if we had lost her. The silence in the room was palpable. It was broken only by the nurses who told me she would not be able to do this and that. Then one nurse looked at our baby girl, and truly with a pain in her voice said, "Can you believe 90% of parents who find out their baby has Down syndrome abort them?" I think she was thinking out loud, and did not mean to say it. And then the physician that told my husband and I that we were irresponsible, because we could have "done something about this." That was day one.
Because of the lack of support near by, I and others in my area turned to message boards for support. My heart was broken by the reaction of the medical professionals, and the stark reality of that one well meaning nurse. I needed to talk about this, and the prevailing attitudes of the medical community in general, concerning the abortion of babies with Ds. When I would, I was told that it could not be discussed. When I turned to Ds advocacy groups to express the grief I felt by this on the day my daughter was born, I was met with, "We are sorry, we have a position to not have a position." I felt helpless to advocate on this issue. I felt silenced.
Until I met Michelle. Michelle was putting all of the facts and information out there, and I was stunned. I read what she had to say, and tried to work through my mind how this could possibly be happening, and so many people don't know about it, while others will silence those who do from sharing it. Michelle was the teacher, and for those of us who would read the facts that were sent our way, we were the students. She was silenced, but I heard her. In fact, four of us heard her, and together, we acted.
In time, I knew that if we all came together, and calmly shared this information, we could at the very least support each other concerning this issue, and hopefully actually bring it to the attention of the greater masses, and maybe help to prevent this from continuing.
As Michelle said, on that day, the IDSC for Life was born. We all took up, where Michelle left off. She had educated so many, with facts and figures, that still today we try to share so others can see it with their own eyes, directly from the words of those who advocate for decreasing the incidence of Down syndrome. As everyone well knows, there is only one way to do that, and that is through abortion. There is no cure for Down syndrome, so decreasing its numbers is simply not possible any other way.
Over time, we have grown from a few moms believing we needed to stand together, to thousands of people, from all over the world, including self advocates, who are standing together, telling the world that ALL life is precious. We have been joined by some parents who believed the lies and pressure to abort their child for a Ds diagnosis. We are always praying for hope and healing for them, and they join us so they can advocate on behalf of their child that they loss. They will be silent no more.
For that matter, Ibby, Kayla, Kris, Michelle, and I, will also be silent no more. This issue effects all of us. From the moms who live with the pain of professionals pressuring them to abort their baby all the way through their pregnancy, to the mother who did, because she believed the professional when they told her it would be a difficult life, to those of us who are hurt by the implication that we "could have done something about this." the culture of death affects us all. And we will be silent no more.
And so this powerful new group was born. Advocating for all children with disabilities, but especially for children with Down syndrome, Diane, Kayla, Ibby, and Kris have proven that a united front does bring about change. And Monica is on the board, as well, still fighting for every child's right to life.
I am honored to have been a part of the IDSC for Life's conception. I am honored beyond words that a huge part of their outreach is to extend welcoming arms to women who have aborted for DS and regret their decision, who in turn help other women struggling with the choice. I pray that some of the women who will turn to IDSC for Life are some of the very same women who I battled for so long. I want peace for them, and for me. I believe that is possible.
I am hopeful for the future, despite the astonishing termination rates, because finally it is ok to talk about it out loud. I am forever grateful to Di and the others who stood beside me bravely on the front lines, and gave me the ability to step back and regroup while they took the lead. IDSC for Life is a force to be reckoned with, and I hope you will check them out!!
I have spent the last 2 or 3 years sort of out of the battle, licking my wounds, healing. But in the last few weeks, I have realised how much I miss being on the front lines. I have told Di that I am finally ready to rejoin the IDSC for Life, in whatever role they want me. It is time to step back in and become an advocate again. In the words of Justice Scalia:
JUSTICE SCALIA, dissenting. I am optimistic enough to believe that, one day, Stenberg v. Carhart will be assigned its rightful place in the history of this Court's jurisprudence beside Korematsu and Dred Scott. The method of killing a human child -- one cannot even accurately say an entirely unborn human child -- proscribed by this statute is so horrible that the most clinical description of it evokes a shudder of revulsion. And the Court must know (as most state legislatures banning this procedure have concluded) that demanding a "health exception" -- which requires the abortionist to assure himself that, in his expert medical judgment, this method is, in the case at hand, marginally safer than others (how can one prove the contrary beyond a reasonable doubt?) -- is to give live-birth abortion free rein. The notion that the Constitution of the United States, designed, among other things, "to [*69] establish Justice, insure domestic Tranquility, . . . and secure the Blessings of Liberty to ourselves and our Posterity," prohibits the States from simply banning this visibly brutal means of eliminating our half-born posterity is quite simply absurd.I am optimistic enough to believe in us. And you? Please stand with us, for all life.
For more historical information about termination for DS, and the silence of the advocacy groups, please read Eugenics, American Style
Tuesday, January 24, 2012
I will admit, part of my return to blogging is also this: "you never hear from the olderrrrr kids parents, because their lives are just awful, they are burdened, they arent little and cute anymore and they just stagnate."
Eh, bite me.
It is quite the OPPOSITE, actually. Ciarra's life doesn't revolve around Down syndrome. It lost its big BANG for us, and we just went about living our lives. Sorry to disappoint the haters, but..well, life is going JUST fine...if you count a boy-crazy teen with hormones, a penchant for VERY loud music, video games, junk food, and the quest for a bigger and better social life as "fine".
So, lets update where we are at 13, shall we?
Chances are, Ciarra will NOT marry Devin. Chances are also pretty good *I* wouldnt marry MY first crush in school. It is not a tragedy. Its just life. She may get her little heart broken, and yes, it is a little harder to explain the fact that Devin just isnt likely to return her crush. I live in the real world. Devin does not have Down syndrome. Ciarra DOES. While he is a helluva nice kid, he is not terribly likely to fall madly wildly passionately in love with a girl with DS. But he can be her friend, and he is. And he treats her with dignity. Thats enough. For me, anyways. We are working on it with her. And yes, there is ALWAYS the possibility that some typically-chromosomed young man will love her back. (Have you ever seen the movie Mr. Blue Sky? wouldn't that be awesome, amazing, stunning, and totally cool? Living in real life doesnt necessarily mean we dont still have dreams. They're just different dreams.) But reality is, that isnt likely. Is that sad? Maybe a little.
Wouldnt it be nice if life could just be we get to choose the boy we love, and he would love us back, and we would always be exactly, totally everything he ever wanted? Yep. But life isnt like that. and we all...ALL OF US...DS or not...go through the ups and downs of love and heartache. Ciarra is no different. And so we see this as not a tragedy of her not being able to attain her one true love. We see it as a life lesson all of our children will have to learn. Love sucks sometimes. And someday, if you are lucky, you do find JUST that guy, the one you can share a life with and be happy. The one who loves YOU, 47 chromosomes and all. I see that in Ciarra's future.
Just not with Devin. ;)
7th grade has been very good so far. (Can you even believe it? that tiny little girl over there on my sidebar is actually THIRTEEN years old. A seventh grader. Shocking, even now.)
I minds well get the bragging out of the way.
Ciarra got a 92 average on her report card last semester.
She is THRIVING in Social Studies. LOVES it. They are doing the stock market game. I am told she is in First place. How? Well, she chose her favorite things to base her stocks on: pepsi, chocolate, apple (the Ipad she lives on) and mattel toys. Too funny.
I sometimes wonder what the typical kids parents think when they hear Ciarra is in first place? Is someone HELPING her, or what? LOL. Ciarra's classes are modified to some extent, fewer questions, bigger fonts, open book tests. she is nailing it.
Her teacher, who is amazing, said to me "She isnt just doing ok, Michelle. she is doing AWESOME!"
Honestly, education, inclusion, special education, modifications, all of those words we live with every day..sometimes it is these extra thoughtful kind words that we remember most. I think those words filled my cup more than any of the negative words can ever UN-fill.
Inclusion works! But it is a process that can drain you, beat you up, and leave you wishing for something better...and then leave you high as a kite at how well it CAN work.
Also, Ciarra has gotten it into her head that she is a social butterfly, and I am her captain. EVERY day she asks me "Who's coming tomorrow?" Every day. Several times a day. She believes she HAS to be having playdates every day. Someone MUST be visiting, someone MUST be making plans with her. Or she gets lonely. She is downright spoiled in this regard. I dont know many typical kids who have friends over EVERY day. Being that mom that is so overly worried about her emotional health, I about kill myself trying to make it happen. Friends..constantly. Going to the movies, bowling, playdates at the house, bounce place, kids museum...go go go.
I also hope that as those years pass, I will remember to keep blogging, keep recording her life story. Not just for her, or for me, but for all the parents who will come along and wonder what it is really like to be a teenager with Down syndrome. This is it. Real life, no whitewashing. The good and the bad.
PS: for those who asked about Jesse and Kristin?
The three of them are not a storybook kind of family. There are no rose-colored glasses here. They fight. Ciarra annoys them. They annoy her. No one treats anyone with kid gloves, they just are very real. she isnt breakable, and they arent, either. Siblings. Love and hate and slamming doors. But they love one another, and I adore them.
And Jim is Jim. Hunting, fishing, working. Loves his family, loves his dogs. Loves to hunt. Jim.
Saturday, December 31, 2011
RIP dad. I know you loved me, even when life was horrible, and everything got in the way. I hope you are at peace now, with Gram and Gramp. Watch over my family, and please help me find peace myself.