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Dad, Mom, and baby Meghan

Dad, Mom, and baby Meghan

Meghan through the years

Meghan's age

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Trisomy 21 trio of cuties

10 Things Every Child with Autism Wishes you knew

Friday, October 1, 2010

31 for 21 - day one, the value of a person

Yesterday all three little gals had a dental check-up. Kara and Amanda always do OK at doctor visits, I think they were taught to behave for such things at their orphanages, or else...both of them are pretty good patients, it is uncanny, and kind of makes me sad. A little orneriness is good. (wink)

Kara climbed up on the chair and cooperated for the most part. Amanda kept pushing the tools out of her mouth with her very agile tongue LOL, but our Meghan, well, she seems to believe that freaking out and being uncooperative is the best way to get an exam. We told her numerous times, if she would just sit there and let them look, it would be easier for her and then everyone else. After we got home she repeatedly held her mouth open to show us how good she can be. She was embarrassed about her behavior, and that is a good sign, maybe next time will be better?

The exam went the way it usually does, Kara's teeth were perfect, Amanda was good too, no visible cavities with either (most of her baby teeth are already covered in crowns), but Meghan had 3 baby teeth (that had sealants on them), with cavities in between the teeth. They want to sedate her and work on those three teeth in January, the closest appointment. My heart was already pounding at the thought of anesthesia for Meghan again. Tom and I were both afraid of that, she has been awful about us helping with her brushing lately and she also seems to have inherited the bad tooth gene from Tom and I. Yes, there is such a thing, Amelogenesis Imperfecta. I was told that mine was represented by very thin enamel and soft teeth. What a great thing to pass on to your kids huh?

We take the girls to a pediatric dentist, he is good, his office staff is also very good. We are lucky to have great dental insurance for the girls, a primary which pays for most of their work and a secondary that pays for everything else. No out of pocket expenses for the little girls. High insurance premiums, yep. LOL.

The office was packed yesterday, children were laughing and playing in the little play area they have built for the kids. A playhouse that includes a fun slide, all but the slide enclosed in Plexiglas. When we came in the children were running in and out of the house, laughing and playing. Meghan got excited seeing everyone and ran to play with them, Kara followed her. Most of the children who were having so much fun left and went to sit with their parents. Two hid in a alcove built into the house, none of them would play with my children. Not one child spoke to them.

At first it did not register, I was watching Meghan slide down the slide and Kara was looking out and smiling at us, Amanda was firmly planted on Tom's lap, she does not do well in noisy places with lots of children. I was focusing on my children, then I realized all the other children had left and whispered to Tom, "where did all the kids go?" he said he noticed it too. I looked around the room and saw one mother actually glaring at me, I was stunned, what was wrong with these parents? Had they all taught their children to fear kids with disabilities? They were acting hatefully towards me and my children. I got mad, I wanted to say something, but did not, my girls were laughing, playing, and having a great time, so I pushed it back in my mind to mull over later.

We fear that which we do not understand.

That is the simple truth of that situation, and for some people, is that trepidation turns to anger as a coping skill, fear is hard to deal with, anger, well, we are better at that one. Could I have used that as a teaching opportunity? I suppose, if I wanted to cause a scene and speak up, sure, but my children notice angry feelings and I wanted them calm for their exams. I do not think the parents sitting in that room wanted a calm and sincere conversation about Down syndrome. I was so relieved when we were called back; at least the dental assistants and office staff are very sweet to us and our children.

I did not think about the behavior of those parents and their children until we got home. I had already been contemplating the reason people fear having children with disabilities, I had been doing extensive reading the night before, and maybe it also made me more aware of others reactions to my family.

The night before the girls appointment, I was reading over topics I wanted to go over in the blog this month, I found this website and read about termination of pregnancies due to prenatal testing. Something I have tried to reconcile in my heart and mind since Meghan was born and I was asked endlessly "Did you know before she was born" fully meaning "Surely you would have terminated had you known". One of the books they discuss was written by a woman who chose to terminate: Testing Women, Testing the Fetus by Rayna Rapp (click on the link, it is a good article, upsetting to be certain, but eye opening)

The two passages I am sharing upset me the most, it seemed so simplistic, these women seemingly made the decision for purely selfish reasons, surely they were not that cavalier about the lives of their children? You can see very clearly that they talked themselves into their decisions, and it seemed so logical to them, and made so much sense at the time, I wonder how it felt later though? Truly, how should it feel?

These two quotes stood out the most in my mind and heart, while the author read one thing into their words, I read something else entirely.

"Are White Women Selfish?" Rapp analyzes and decodes the language of "selfishness" in the self-descriptions of Anglo women. One woman, who is characteristic of these interviewees, explains, "I just couldn’t do it, couldn’t be that kind of mother who accepts everything, loves her kid no matter what . . . Maybe it’s selfish, I don’t know. But I just didn’t want all those problems in my life." Rather than considering the possibility that such narrations reflect genuine conflict over the question of selective abortion, Rapp suggests that these women are unwitting victims of both pro-life propaganda and an atavistic ambivalence about the entry of women into the workplace.

We did not have a prenatal diagnosis, I was an AMA (if you were one, you know what it means) and they wanted me to do ALL THE TESTS, and I refused. As an AMA, I felt my pregnancy was a gift and there was nothing I was going to do to threaten my baby's life. I had 4 ultrasounds, routine blood tests, and saw the midwives every three weeks, but I did not do the AFP, and I certainly refused the amniocentesis they insisted on. I was prepared to be "One of those kind of mothers, who loves her baby, no matter what". I cannot understand anything else, it is who I am, I loved my children when I carried them in my womb and I loved my littlest girls as I carried them in my heart.

I had always been shocked when a person of faith chooses termination, how could they, when they believe all life is sacred? This next persons POV opened my eyes to the hows, but I still cannot understand their whys. So another quote from Ms Rapp's book:

People of faith are already interpreting such choices theologically, and their language begs for engagement. Carefully distinguishing the termination of a planned pregnancy from the abortions of "other" women, Christians are seeking theological justification for their decisions to terminate disabled fetuses. One woman explains that her pregnancy "interruption" was providential, another that God was testing her to see if she would be willing to return his angel to heaven. In a desperate attempt to bridge choice and faith, many who choose to "interrupt" their pregnancies (the common phrase in these cases) embrace the idea of the transmigration of souls, expecting that the terminated fetus will return in a subsequent pregnancy, wearing a new, improved body.

While I saw the first woman as being very self involved and scared of change, the second passage upset me. You see, when I look at my children, I see perfection. ALL of my children, not just those lucky enough to be born into a body with 46 chromosomes. My girls with 47 are beautiful, striking eyes, adorable smiles, impish grins, loving souls (most of the time *G*) and more than anything, they are just children.

Why do we fear having a child with Down syndrome so much in this world? Why did people call with their condolences with Meghan came into our lives? Why did I have to help so many people in my social circle see, really see, her humanity? Why did it take so long for a woman in my Silver Sneakers class to say; "You know, she is just a baby" quickly followed by "When I heard about her being born, I expected some gross deformity, everyone was so sad, but she just looks like any other baby with some minor differences. If anything she is funnier and more aware than most babies I have seen". (Meghan could not go to day care because of trachealmalacia, so I was allowed to bring her in her infant carrier into my fitness classes while I taught, she stayed with me in the class for a few months). It is not a surprise to moms who have children with Down syndrome that those 35 people grew to love and accept my Meghan? Because they most certainly did! In their time babies born with disabilities were hidden away in their homes or given to mental institutions, sometimes forcefully taken "for the good of the community", most had never seen a child with cognitive delays. Who said older folks cannot learn, then most certainly can and do. Meghan taught them!

Yesterday I saw this post on Facebook, and I copied it:

In the book, a deposed pope has gone through many trials and tribulations and it is the time of the Second Coming. When he meets the Returned Christ, the former pope is afraid and unsure much like the apostles when Christ first arose. This passage takes place in a mountain hideaway where children from a school for Down Syndrome are among those present. The Returned Christ is speaking about one of these children as he holds her.

"I know what you are thinking. You need a sign. What better one could I give but to make this little one whole and new? I could do it; but I will not. I am the Lord and not a conjurer. I gave this mite a gift I denied to all of you--eternal innocence. To you she looks imperfect--but to me she is flawless, like the bud that dies unopened or the fledgling that falls from the nest to be devoured by ants. She will never offend me, as all of you have done. She will never pervert or destroy the work of my Father's hands. She is necessary to you. She will evoke the kindness that will keep you human. Her infirmity will prompt you to gratitude for your own good fortune... More! She will remind you every day that I am who I am, that my ways are not yours, and that the smallest dust mite whirled in the darkest spaces does not fall out of my hand... I have chosen you. You have not chosen me. This little one is my sign to you. Treasure her!"

I do not agree with everything this passage says, I do not see Meghan, Kara or Amanda as unopened rosebuds, instead they are fully bloomed roses complete with the thorns, imperfect as all humans are. I do not idealize their humanity as more than others nor do I see them as less than anyone else. My daughters are more like other children than unlike them, but they do have an innocence, a sense of wonder that we walking around with 46 chromosomes lose before adulthood, and such a shame too, as everything to a child is miraculous, and so many adults who happen to have Down syndrome see the miracles every day of their lives, most of us miss them. They take the time to, while we rush about like mad fools, chasing the brass ring, looking for something to own, something to help us gain status, looking to be wealthy, and adults ( I speak only of those I have known personally) with Down syndrome I know just want to show their love and have a strong desire for people to just SEE them as another person in this world, to speak to them and really take time to LISTEN to what they have to say. Why do we always notice differences in one another and why do we believe that those difference mean more than any other aspect of our humanity?

I would love to see less of the behavior and attitudes I saw yesterday in that dentists office, that is my most fervent wish.


GoldenAngelsWorks said...

I am so sorry that those parents and children treated the girls like that.

You would think that the kids would just keep playing and having fun. Whether they were playing with the girls or not. Instead, treating them like they had something they could catch.

I totally agree with you. When I was pregnant with Patty they did an ultrasound and there was something on her brain. They wanted me to do an amnio and I told them no for 2 reasons....
1. If God wanted me to be a blessed mother of a Downs child then I would love her all the more.
2. I had already had 3 miscarriages and since that is a possibility when they are done. I was not going to take any chances.

I seen a young down's boy in the store the other day and I was just amazed as he would point to the numbers of the registers and count as he pointed. He did wonderfully counting to 6.

I dream of a day when I can meet you and your girls and give them big hugs.

Amy Paegel (Joshua's mom) said...

Oooh I loved reading the passage from that book! So thought-provoking! Now I'm off to see if I can find the book, to read more... Thanks for sharing!

Beautiful artwork featuring children

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