Blogs Are Stupid

Doesn't anyone believe in Dear Diary anymore? What happened to the joy of putting actual pen to paper? And why does every ordinary Jane and John think they can write well enough to burden the world with their scribblings? It’s a mystery that badly needs solving. My first entry contains my thoughts about blogging and will set your expectations. The rest will probably be stream of consciousness garbage, much like you’ll find on any other blog. Perhaps we will both come away enlightened.

Thursday, November 01, 2007

A Precious Gift

Yesterday, after a busy morning of errand running and a chaotic but heartwarming trip to Diminutive One's classroom for a Halloween poetry reading, (he is a born poet, if I do say so myself) I stopped at a small corner store where a local farmer sells produce.

Because Halloween is still very warm here in the South, we usually don't carve our pumpkins as early as people in colder climates might, but we normally don't wait until Halloween night either.

But it's been an unusually busy week, and pumpkins have not been high on my list of priorites. And truly, pumpkin carving is not quite as important to my kids as it once was.

I chose my pumpkins and a container of ripe, red, sun warmed tomatoes and went into the little building to pay for them.

Inside was Farmer John, a big beefy man who reminded me of home, and two older women. One of the women was curled up in a big overstuffed chair, giving a baby a bottle. The baby was wrapped in a blanket, which I thought was strange, because although the day had started out chilly, by noon it was probably close to 75 degrees.

There was a sheaf of thick blonde hair showing out of the top of the blanket and the sounds of a hungry baby enjoying it's bottle could be heard above the low sussurus of conversation.

"Can I peek at your baby?" I asked. Though the longing to have more of my own has faded away, I still can't resist a baby.

Something that I couldn't identify flickered briefly across the woman's face, but it was quickly replaced by a smile.

"Of course!" she said brightly.

I went over the look at the baby, a girl, and saw instantly that something was wrong. The baby, who appeared to be 6 or 7 months old, had a pififully misshapen head. It was terribly flat in back, but rose to a peak almost directly above the child's eyebrows. Her ears were very low slung and her facial features appeared disproportionately large.

She suckled vigorously, but her sky blue eyes were vacant and unfocused. I wasn't sure if it was milk bliss that caused her dreamy appearance, or if she was neurologically impaired.

It took me a couple seconds to realize that she was probably suffering from Microcephaly. Babies with Microcephaly typically look like this.

I smiled, though it broke my heart. Poor little sweat pea.

Her grandmother gazed at her lovingly. "She is so content when she's eating." she said softly.

"Oh, they all are, aren't they?" I said, striving for a casual tone. "Gosh, I miss my boys being that size. They're almost as big as me these days."

"Don't I know it!" she said. "All mine are grown and gone, and now I have to spoil (she pronoucned it spole) all my grandbabies."

I went back to the counter to pay.

"Do you keep her full time?" I asked.

The woman's eyes never left the baby as she spoke to me.

"Oh yes." she said. "We take turns so she won't have to go to daycare. This is our fourth grandbaby. She is a precious gift to us."

She looked at me then and I thought I saw a challenge in her eyes. But she would get no debate from me.

I met her gaze squarely and said, "Your children are so lucky to have you. And she is absolutely beautiful."

Her face softened a little bit, and she thanked me.

I paid for my purchases and left.

As I climbed back into the van, I realized that there were tears in my eyes, which is unusual for me. I'm not a crier.

But it wasn't sadness for the baby, or pity for those burdened with her care. It was the woman, with her fierce love and her refusal to see the tiny blonde baby girl as anything but perfect that had touched me so deeply.

I thought back to the days when Pre-Pubescent One was a baby. When he was 5 months old, a gal my age, whose baby boy was only three weeks older then mine, moved into the unit next door to ours. I had been terribly lonely up to that point, so I was immensely grateful for her company. We became fast friends. She introduced me to another woman with a baby boy roughly the same age as ours.

Our boys looked and acted like any healthy infant should. Zach, the third woman's baby, did not. His hair was flaxen blonde and his eyes were the purest cornflower blue. From the eyebrows down he was the most beautiful child I've ever laid eyes on, and when he had a hat on (which was most of the time) he looked like any other baby.

But if one looked a little closer, they would see that his beautiful blue eyes were curiously empty and that his hat seemed unusually large for his little body. That hat was filled with his head, which was hugely swollen and covered with a lacy blue network of delicate veins. He had been born with Hydrocephalus.

Zach, like my son, was born when prenatal diagnostics were becoming widely available, but somehow his condition was not detected until birth. The damage to his poor little brain was catastrophic.

It was difficult at such a young age to determine how much awareness he really had, but the doctors felt that beyond feeling basic physical sensations such as cold, wet, hunger, and pain, he had very little sentience. He was completely blind, and would never walk or talk or have control of his bladder and bowels.

I felt tremendously sad looking at him, as I contemplated the hopelessness and pointlessness of his existence.

His mother would bring him to our little gal pal group and set his seat among the rest of the babies. As they grew and became mobile, they struck out eagerly to explore their surroundings. Zach, of course, remained confined to his seat.

But curiously, they would return every now and then to bring him a toy or offer him a biscuit or a little pat. Sometimes, they would babble to him inquiringly, in sweet nonsensical baby jargon. Occasionally, one of them would bestow a gentle kiss upon his distorted brow.

They were taking care of him.

They were learning compassion and empathy and acceptance from a child who was scarcely conscious. And I realized then that his existence was not as pointless as I had naively supposed.

So he had taught me something as well, and I suspected that he would teach a great deal more before his time on this earth came to an end. We have lost touch with he and his mother through a series of moves, but I think about them often.

There have been many great advances in prenatal testing. We now have the ability to identify certain genetic markers. We now know the importance of good nutrition and the dangers of smoking, drinking and drug use while pregnant are well documented. And then there is the freedom to abort, of which, by the way, I am a strong proponent. As a result, such grave disorders are increasingly rare. You don't often see babies like Zach.

That seems like a terriffic boon for mankind. But is it really?

I certainly don't wish for more babies to be afflicted by such profound disabilities. But I sometimes wonder if we aren't biologically engineering ourselves right out of the ability to empathize, nurture, and truly appreciate the manner in which every living thing brings something of value with them into the world. I wonder if we are losing our ability to cultivate knowledge and gain compassion from those different from ourselves.

A Gift, she said. A Precious Gift.

Yes. Absolutely.



(Portions of this post excerpted from "Rethinking the Right to Die"; originally posted 05/06)

26 Comments:

  • At 9:05 AM, Blogger Magi said…

    A very touching and thought-provoking post. Thank you.

     
  • At 9:08 AM, Blogger Kathryn said…

    What a gorgeous post. Just beautiful.
    My niece was born with hydrocephalus and is truly a miracle child. She went trick-or-treating with us this year. She is smart and active, and you would never in a million years guess that she has a shunt (unless you felt the top of her head) or what she went through as a baby.
    Thank you for such a wonderful reminder that life is precious. EVERY life. We are all here for a reason.

     
  • At 10:17 AM, Blogger URBAN PEDESTRIAN said…

    Very touching indeed and the lessons in empathy still continue. My daughter has always been in classes that have integrated special needs children giving her so much opportunity to help with every day tasks, empathize with their struggles, defend them when required, look after them when they needed it. You're so right about how much this has added to her life and the lives of all the people with whom they are involved.

     
  • At 10:40 AM, Blogger Verry Sherry said…

    Thank you for this post.

     
  • At 10:42 AM, Blogger Veronica Mitchell said…

    This is beautiful. One of your best posts.

    You might be interested in this editorial from a woman with a Down's syndrome child. Her basic point: "If we might not have chosen to welcome her into our family, given the choice, then that is a statement more about our ignorance than about her inherent worth."

     
  • At 12:27 PM, Blogger liv said…

    Good one.

     
  • At 1:05 PM, Blogger Mrs. Chicky said…

    Now I have tears in my eyes.

    No mother wishes for a child like that but the women I have met with babies with birth defects are so fierce in their love that it inspires me.

     
  • At 1:38 PM, Blogger Hairline Fracture said…

    Wow. Just...wow.

    And thank you.

     
  • At 1:50 PM, Blogger flutter said…

    I don't think I can read you at work anymore.

    You are so right and these children are gifts, not burdens. Perfect in ways we are too imperfect to grasp.

     
  • At 2:01 PM, Blogger TZT said…

    I agree. A beautiful post.

    My grandmother came down with German measles late in her fourth pregnancy, so my aunt was born with the cognitive capacity that was never to exceed that of an infant. The doctors were right about that part, but wrong about how long she would live. Not past 10 or 20, they said - she died just three years ago, well into her 50s.

    I do wonder about the quality of her life, the degree of her suffering, and what she would have wanted if she were able to communicate. Any hair that she grew out of the top of her head, she pulled out.

    The one thing I do know is that her existence in the house of my mother and her siblings through their youth gave them a special quality that has not come as easily to their children. They have a fearlessness and kindness when it comes to touching or talking to people who look physically ill or infirmed.

     
  • At 2:32 PM, Anonymous The G-Ma said…

    My 43-year old hydrocephalic, cerebral palsied, retarded son still lives at home with me and his dad. We were advised when he was two years old to institutionalize him for the sake of his older brothers and sisters. We did not.

    He receiver one of the first atrial/ventrical shunts ever "installed." He has undergone over 50 shunt revisions over the years (8 in one year!), and I cannot count the prayers and tears I have produced for him and for us.

    Through him I have learned lessons I never, ever wanted to learn. I have perfected patience, and almost perfected empathy and unconditional love.

    He is soon going to work at WalMart, where he stocks shelves with three other people like him--differently abled is, I think, the currently preferred label.

    Not every family can do this. We were blessed by our fierce determination to provide him with love and challenges and discipline, the comforts and frustrations and fun of a big family.

    He is in his room right now playing Resident Evil on Play Station II. I have tried to play this game. Not a snowball in hell chance! So, there. He is differently abled, indeed and can beat my butt, that's for sure.

    Thank you for offering your insights about the preciousness of all children. They, like so many of our possessions, are not disposable.

    You moms of so-called normal children, celebrate their perfection and vow to instill in them empathy and sympathy for others, for animals and old people and ugly people and awkward people. Kathryn said we are here for a reason. Find your reason, sacred to you, and hone its practice.

     
  • At 2:36 PM, Blogger Amy York said…

    Yes, thank you for that reminder. A precious gift, indeed! And thank goodness that sweet baby has a grandmother that loves her so that she'll always feel special!

     
  • At 3:48 PM, Blogger margalit said…

    A lovely post. But I must say that not all microcephalic children are so severely deformed. My daughter is microcephalic, and she's perfectly normal in looks, and always has been. She does not have a pointy head, she's got a TINY head... at 15 it measures the size of a toddler. Hats are a problem.

    She does have some of the learning difficulties of microcephalism, but like any defect, there are degrees and I wonder if posting such an extreme example might not unfairly promoting the worst case scenario.

    As for hydrocephaly, it's been a known and diagnosed brain disorder for well over 40 years. It used to be called 'water on the brain' and shunts have been used effectively for many many years. A friend of mine has a daughter in her 30's with a shunt. That this child didn't have proper medical care inutero is shameful, but every child should be examined by ultrasound and treated at birth if any problems are discovered.

     
  • At 3:50 PM, Blogger Jen M. said…

    You are wonderful.

    What a great post.

     
  • At 10:54 PM, Blogger SUEB0B said…

    What a lovely post.

     
  • At 12:49 AM, Blogger creative-type dad said…

    Wow...

     
  • At 4:32 AM, Anonymous cerebralmum said…

    I am a strong proponent of the right to abort, myself. But as I knew that I had no intention of doing this, I chose not to have any prenatal screening. The results were irrelevant to me.

    When I was growing up, my mother and her friend started a branch of Riding for the Disabled in our rural town. There were children and adults with such a wide range of issues; genetic and congenital disorders, and disabilities resulting from injury.

    I can't imagine what it would have been like to grow up without the experience of having those people around me. Every one of them enriched my life and my understanding of life.

    This was a truly beautiful post.

     
  • At 7:44 AM, Blogger Avalon said…

    My very good friend has a daughter born with a very poorly understood syndrome, Tuberous sclerosis. She is now 17 with the mental capacity of 5 or 6 year old, and a host of other related medical problems.her existence has defined my friend, and I believe, made her a better person. Their family would not be complete without that child.

     
  • At 9:04 AM, Blogger Jenn said…

    I am a crier, so, yes, I'm crying.

    I'm grateful to live in a world of choices, kindness being the most important choice of all.

     
  • At 12:00 PM, Blogger Wife Soup said…

    You always seem to manage to bring tears to my eyes. What a great story.

     
  • At 7:09 PM, Blogger Ruth Dynamite said…

    Putting everything into perspective, BA. Thank you.

     
  • At 8:20 AM, Anonymous Kelley said…

    Well said.

    My boy is has severe Autism (I hate the word Autistic, he *has* Autism but it doesn't define him as Autistic suggests) he is at a mainstream school and has many 'friends'. The whole school community care for my boy and that was evidenced by more than 30 kids coming to his birthday party last week all with very carefully thought out presents. All totally appropriate. So even though I bitch and moan about him on my blog at times (like tonight for using my toothbrush as toilet paper - again) he is here to teach us all compassion, tolerance, acceptance and pure innocent joy

     
  • At 9:57 AM, Blogger Pendullum said…

    Precious...
    Simply precious...

     
  • At 4:24 PM, OpenID spacellama said…

    What a profound post. I've had similar thoughts over the years, but I've never gathered them so clearly as you have done here.

     
  • At 1:08 PM, Anonymous april poe said…

    my name is april poe i have a son who was born with microcephaly he is 12months old and his head is only 13inches around he is the love of my life and i also have a 3 yr old who loves him very much we have been working with doctor after doctor and none of them know what they are doing in his situation. you r so lucky to have such a wonderful gift even though our childeren are less than normal than some kids. it makes me smile when i see other just like me going through the same thing.

     
  • At 8:14 PM, Anonymous Anonymous said…

    This story touches my heart. I am a 20 yr old single mother of a 2 year old girl with Microcephaly. She can only hear and feel..thats her only way of communication. She weighs almost 30 lbs. but needs to be carried everywhere. I love her (Logan) with all my heart but being a teen mother I am going crazy! It has really taken a toll on my life.

     

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