Monday, September 23, 2013

Ponderings of the Week

It has been over a week and a lot has happened, but I can't get the conversations about the ethics of prenatal testing out of my head. Perhaps it's because I disagree with people I respect, or perhaps it's because in the future I hope safe and accurate testing can lead to effective therapies in-utero. It could be the realization that someday we may have another baby and I may be in a place that I would want to be prepared. Then again, I may not. The truth is I don't know how I will feel in the future, but I do know that no adverse diagnosis would lead me to allow the premature taking of my child's life, and that is why I do not object to these tests being developed.

I've rolled over the arguments I have in my head. Would anyone advocate for the removal of early pregnancy testing because most abortions are in the first trimester? Of course not! Sometimes we have habits or take medications that would harm a baby in that critical time. Would we say that Dr. Lejeune was wrong for discovering and making public that Ds is caused by Trisomy 21? Of course not! We who have a specific diagnosis for our children and know those who do not are well aware how important concrete evidence is when pursuing treatment. Countless families see countless doctors trying to get someone to name whatever it is curtailing their child's development. I thank God I have a little piece of paper with Mae's chromosomes all lined up for me to see and to show her doctors. Still, that discovery of Dr. Lejeune's led him to a lifelong battle against those who would exterminate our precious children for their chromosomal count.

I realize that the development of some of these tests are probably meant as an aide for women who would rather end the pregnancy early than later. I wouldn't cry if those people sat bare bottomed on a red ant pile. However, I also realize that my experience with Mae's diagnosis was in the minority. Many parents are scared, overwhelmed, sad and grief-stricken that they did not get a healthy baby. They may have done better to get time to process and not dream of the mythical child they didn't get if they knew in advance. This comes back to giving those parents the facts about having a child with an adverse diagnosis and giving them counseling that will help them not to make a decision out of fear of the unknown.

Which leads me to my second rumination of the week; the destructive force of fear. I'm not talking caution, like not letting your two year old play unsupervised in the cul-de-sac. I'm talking the fear that convinces us that we had better not walk a path that will surely be hard and result in epic failure. I really think some of these people who deem prenatal testing as a moral evil are doing this out of fear because of the drastic number of people who do choose to terminate. These lovely people have been waging this war with the doctors who give the news with condolences and directions to make their "appointment" when they are ready. They are the front-liners who see the world through the lens of the war they fight. Who could blame them? Not I! And yet, as I read one woman's assumption that everyone who asked if she knew before birth was implying she should have known and she should have aborted, I reflected that I never thought like that. Don't get me wrong, people have asked me if I would have had Mae if I had known, so I know that attitude exists. However, when I encounter that question it seems to be more of a question of preparedness. "Did you know before she was born?" almost always was followed with a sympathetic noise or face when I answer I did not. I imagine those people were sad I had to find out on a day that was supposed to be full of joy.*

When I hear about early and accurate testing it fills me with hope. I hope that those who test positive find that with time they have the confidence that they are as ready to be a parent of a special needs child as they were ready to be a parent the first time it happened. That it's okay not to have everything figured out, they are in for an adventure. I hope that brilliant scientists discover ways to heal hearts and organs and give the right cocktail of supplements to the mother so the baby can have a healthy life. Hey, wait, look at that! Information, my friends, can and should be used for good.

What about those who choose to abort a special needs child? It comes down to fear, doesn't it? Well, here is what I would say if I were speaking to a couple thinking of making this choice:

    This is your baby. The reality is, you're not ready for this baby. That's okay. Did you know everything you needed to know about dating when you started out? Did you know everything about marriage to this particular person when you got married? Did you know everything about car and home ownership and every job you've ever held before you had it? No. You did not. And you can research as much as you want, but you will not know everything there is to know about your child until you give yourself the opportunity to be his parents. And you will love him. And you will be scared. You will cry sometimes, but also, you will laugh really hard the way you used to in middle school when you couldn't catch your breath and you wondered if anyone had ever laughed to death.
    At first you will listen to everyone, but one day you catch yourself telling off a therapist or doctor or whatever professional in front of you because that person dared to box in your child. It will set your blood boiling when you hear the term "splinter skill" (because it's a talent, no more or less), and you will refuse to wait until that child is delayed to teach him something new. You'll expect him to have manners and to clean up his messes and you'll send him to his room. And you will become more yourself and you will be surprised how delightful that can be. You will fall in love with your spouse over and over and over. Or  you will terminate and this will be an adventure you never had. Because of fear. Do not be afraid. Be hopeful. You won't regret it.

*Look, yes, it's joyful to have a baby, and no one needs to be treating a baby who arrives with a disability as anything less than joyful, but let's not kid ourselves, a lot of parents feel real sadness when they discover their baby is born with any kind of a condition. They aren't bad parents and people who feel sympathetic aren't jerks. Jerks are people who ask if you would've "kept" the baby if you had known.

Friday, September 6, 2013

Quickly Taking It

This here is a story about how I'm already sick of school. Actually, I love my kids' school because the teachers think my kids are as great as I think they are, but also will laugh at their typical kid antics without changing that affection. What I am sick of is the sickness. Mine are the children who get horrendously ill the first few weeks of school just when I am super excited to get some housework completed without some muddy swamp-thing coming in to show me their newest friend that came under the fence from the woods behind the house. There has been a stomach virus, pink eye and a mystery headache/fever virus already. There have also been lies. One day they will realize you can't fool the girl who had 13 absences and zero fevers in one quarter of her third grade year.
The major issue with the OT seems to have been resolved, though we shall see next week. It was, above all, a miscommunication. Mae is Mae, not Down syndrome as her OT seemed to be expecting. That is not so say that Down syndrome doesn't factor into Mariana's person so much as to say, she's not what you expect. I imagine all people with Down syndrome don't quite fit the books. I said as much to the OT. I explained my predicament, that I know my kid, but I can't go and read all there is on Down syndrome because 90% won't be applicable and I don't have the time to wade through all of that to find the 10% that is. I said that I didn't want to hear about her delays. I get it, we live in that space. It's boring. Mariana may well be delayed (she is), but what has that got to do with what we do next? How does that even factor into her abilities and deficiencies? Truth is, it doesn't. Those stats are useful as far as they get you, but since we don't expect our kid to be anything other than herself, let's raise the bar. Let's find out how much she can do, what makes her unable to meet the goal and use her strengths to strengthen her weaknesses. Once that was out on the table our OT gobbled it up. I have to say, there is something uniquely satisfying about stating your needs and having them embraced. I guess I just needed some of these frustrations to adequately assess our needs and express them clearly. Lesson 4,789: Frustrations in life are better viewed as lessons.

I have a genuine question, but I'm not sure where to pose it. You see, I've been seeing a lot of postings on the Ds and other Trisomy pages about noninvasive prenatal testing. They seem to come down very strongly that it is wrong because it leads to the extermination of a specific segment of the population. My problem is that I don't quite understand this position. I do see how prenatal testing leads to abortions, I'm not disputing that. I just don't understand blaming the testing for the abortions. There are a lot of reasons women choose to terminate in the face of an adverse diagnosis, one of the largest is fear and a presentation by doctors that reinforces this fear. It's very hard to say that information that leads to so many deaths is neutral, but I think it is neutral information. I think this because I would never terminate a pregnancy, but I would pursue accurate noninvasive testing if I thought it would bring me peace and the opportunity to prepare. I also look at early noninvasive testing as potentially being useful should there every be a genetic therapy that can be utilized during pregnancy.

So my question is really along the lines of "What am I missing here?" Many people I respect, including those in the scientific field are very opposed to the development of these tests. I feel as though I am missing something vital to having a well formed opinion on this subject. All of these tests seem safe and accurate. Any direction at all would be greatly appreciated.

One day, I found this on my refrigerator:
After being dismayed that my fourth grader didn't pose this request as a question, I decided it was doable. I have curled her hair twice before school, only to have her walk out of school with poker straight locks. And to think, one day she'll probably share her mother's joy of having half curly/half straight hair.

Football season is now in session, let us all rejoice and be glad! Mostly because The Ohio State is the best team ever, and their little 2 point conversion tactics against Buffalo really ticked off the Michigan fans. A boy I used to babysit (and is my sister's nephew) plays for The Ohio State, and he's a good boy, well okay, young man. It makes it more fun to cheer for the good ol' Buckeyes knowing this kid is wearing the scarlet and gray.

Another sweet joy is that I am friends with some Michigan fans. One is up there in that place, and we were having us a little FB sass. I reminded her that Urban was named after a pope, much like her youngest son who is coming in the next few weeks. She didn't respond, which is all the sweeter.

We are sad about the Georgia loss in this house, but it's not the end of the world. These SEC weirdos are all about the SEC being the toughest conference in the nation, so they expect a loss here and there. Clemson is a tough opponent, unlike, well, Buffalo. Anyway, you can expect the Fryman kids to be doing the O-H-I-O dressed in their Georgia gear. It really rubs the Gators the wrong way, which makes us all happier.
Picture day was today, and I am super excited to see the results. I love picture day, but my lesser nature loves bad school pictures. I feel like it is a rite of passage for a kid to have a terrible school picture. My favorite are the boys in that super-skinny-big-teeth phase and the girls who had their mother's do their hair only to have the Florida humidity choose a different style that is much less flattering. Though I have to admit that with the digital age, I can't wrap my head around these bad takes. Last year Molly's was so terrible I thought she must have asked a heavy photographer if she was pregnant, except she said it was a man who took her photo. Maybe she asked him if he was pregnant. Who knows? I do know I tucked that bad boy right into the file folder that has all of her school photos, and if she's a rotten teenager I might even use it against her.
The mosquitoes are back. God save us all.
For more Quick Takes, visit Conversion Diary!

Thursday, September 5, 2013

18 Months

I have erased this post several times already, even though -not to brag- it included some pretty awesome writing. There just isn't a word or phrase that catches it just right. It's all wrong. If you want to know it, you kind of have to live it. The fact is that all the ways we've grown are ways I could have experienced with all of the people in my life. I have tons of opportunities to be more patient, have less misplaced compassion, more ordered compassion and increase my tenderness and discipline. But the truth is that Mae having Down syndrome makes me look at that truth and respond to it every day throughout the day. Because of this child I can become what God has been asking me to be all this time.
It started here:
 About 6 months ago, this happened:

And then it all hit the fan:

Here's to many more days of turning the world as we know it on its head. I love you Mariana, and so should everyone else.