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The last little bitI should probably let this go, but somehow cannot. A few years back the Hobbit and I learned that we were pregnant, again. We were of a certain age, so there were tests to perform, but our joy was complete as we headed back east to spend holidays with the family for a few weeks. When we returned to California there were multiple messages waiting for us on the answering machine. Each of them couched in increasingly urgent tones. We would have to come in for “counseling.” Right away. It turned out that there was some irregularity in an amino fetal protein test that indicated an outsized chance that our unborn child would arrive in the world severely disabled. Spina bifida perhaps. Maybe Down’s Syndrome. Not our fault, nothing we had done. These things happen as a couple age. There was just time to “take care of things” under state law. Delay too much, and nothing could be done. Not in California, anyway. How sure were they? we asked. Our hearts dying inside of us. As sure as they could be without performing an amnio centesis. Which procedure in itself carried the enhanced risk of a miscarriage, and the results from which would not be back until we had crossed the point of no return for “taking care of things.” They were very sympathetic. Very watchful. Ready to take immediate steps as the gravity of their words sank in. Not pushing. But fully prepped. It was our call. Just don’t, you know: Delay. Too much. I tell you, gentle reader, it is a cruel hard thing to go from a cost-free intellectual bias towards life to being faced with a potential lifetime’s burden of a child with very significant demands on your time. A child who will never dream of Harvard, nor even of San Diego State. No trips down the aisle for a marriage, no grandchildren around the tree come Christmas time. It is in effect a kind of test, although, it is not intended to be – just an unlucky spin on the wheels of genetics. The test is this: What do you believe – really believe – and what do you only pretend to believe? What’s really important? It will sound absurd perhaps, but we the two of us talked it out in our bedroom away from the other kids. The unassailable logic of it weighed against that hope which refuses to die, refuses to give in. And then, unable to make so weighty a choice based on mere rationality, we got down on our hands and knees and prayed on it. It will sound absurd because, although we seek the truth in things large and small, we are just not that kind of couple. The kind that gets down on their hands and knees and prays on things. And between ensuring ourselves of the certainty of a comparatively easy life on the one hand, and a significant chance of unshiftable cross to bear on the other, with a willing surgeon’s intervention all that stood between those two choices, we could not choose. Because against all reason and logic there was that heartbeat, strong, insistent. Singing its own glad song of hope. And in that inability to choose we ultimately decided – explicitly decided – to give it up to God: With us be as it pleases you.
And there she is, fourteen years later. Honor student. All around great kid. Force of nature. Blessing from God.
Do you ever wonder what you’re here for? What it all means? I don’t. 77 comments to The last little bit |
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Just to be cautious here, I’m pleased at the outcome for so many who endured incorrect tests only to give birth to a fully-abled child, but to equate the child being born intact as being a testament to faith (as thebronze and others seem to) suggests that those whose children were not are being punished. I was a potential abortion candidate (me the fetus, not me a parent), my mother suffers enough guilt over my “imperfections”, as if somehow she were to blame–without her faith being implicated. The reality is, I have many friends with disabilities that would make parents despair–including spinal bifida–all are important contributors to their communities and families. Thank you, Joe, for the way you characterized your child…
Bravo Zulu Lex. I had five, only one didn’t turn out wonderful. He became a marine, and a good one.
Giving it all up to Him is never a bad thing, even if it does not work the way you’d like; He will always be there to comfort you. It’s all a matter of trust, and like Lex, I trust Him.
There’s a certain kind of peace in that, you know.
A former boss went thru this nightmare as well. Trisomy 18 was the possible outcome – a child with disabilities so severe that he/she would not live for very long. And a horrible life it would be. She agonized for a week over what to do – only to find that her due date was calculated wrong, bringing her into the safety zone. That child is now 7 years old, healthy and happy.
Lex – thank you as always for sharing such a personal experience.
Thanks, Lex. I really understand and appreciate your response.
BTW, in regard to virgil’s comment above, I can’t speak for the UK but can say that in Canada, it’s an issue that seems to be really coming up on the radar screen recently.
We know the experience all too well. Our’s began with the first ultrasound. When they told us there may be a problem they also wanted to remind us there was “this other option.” We both knew there was only one option. As long as there was a heartbeat that was our child. After many trips to Univ of Ala, Birminham and many tests, our child died in the womb at about seven months. We’ve since had two more children (healthy, perhaps too healthy! They sure eat a lot!) 14 and 12 now. We thank God for all our children. All three of them! May God bless you and thanks for the wonderful story.
The decision you faced is exactly why I declined amnio for both pregnancies. I did not want to know if something “might” be wrong. I wanted to know if the heartbeat was strong and if the baby was growing. If those two things were happening, I knew I could face any issues that arise after birth. There were no issues- both were born very healthy.
Sometimes not knowing is a blessing.
A powerful read, Lex; thanks. As the parent of a child with Autism, I’ve gotten over the crushing realization that my son will always struggle to have a normal life, and instead have learned the joy of raising such a unique and loving little soul. I’m glad my wife and I weren’t faced with a similar pre-natal decision as yours.
Your writing and story telling is always excellent, Lex. This is simply wonderful and it displays your love and honor for our Father.
It’s too late in the post to add my tale, but I will add that I recently read something written by a pediatrician who just treated a child with Down’s symdrome–and realized it was the first time in years he had done so. When he began they were common. It was stunning proof to him of the dirty little eugenics practiced at the hands of the OB/GYN, that statistically such children almost didn’t exist anymore (even if other categories of problem children do). Wait until someone develops a test for the autism gene, or the ADHD gene. We know China works that one for the female gene pretty well.
[...] last little bit The last little bit | Neptunus Lex I should probably let this go, but somehow cannot. A few years back the Hobbit and I learned that [...]
God bless you, Lex. And all of yours.
As some here know, I have three wonderful children. My middle child, my only son, the only male born to my husband’s family name, and all that that implies…was perfect. He developed well, healthy and perfect until age 2.
Then he began slipping away. By three, he was profoundly autistic. There’s no history of anything similar in either family, and we went back generations (I have 5 generations alive in the same county, with memories of many before.)
We have worked and slaved, and yes, paid. We have hoped, and dreamed, and sweated out the apparent beginning of another severe disability–he now has intractible (uncontrollable) epilepsy. He will be 16 in a month. He has made gains, and he is so charming and beautiful. He is happy. But he is behaviorally impossible to keep at home, he must have arm’s-length supervision whenever awake.
If someone could have shown me this, while I was carrying him, would I have aborted? I believe I’d say no…but I am a better, stronger person than I was then. I believe my faith, my God, would carry me through–He hasn’t failed me yet. Though I fail Him regularly.
My son will never contribute anything to the world around him, more than a smile. (And messes!) But the gifts I have been given, because he lives and grows, are beyond measure. I have seen the mettle of my husband tested to the breaking point, and he’s a far better man than I ever dreamed. I have been very blessed. I have made many good friends, and helped others in situations similar and dissimilar, and learned that every family is different, and can bear different things, but that most of us can bear far more than we know.
For those of us whose children (or other loved ones) become disabled for any reason after birth (including age) the choice is not abortion–but abandonment. There is always the option, as a doctor advised me when my boy was 3, to “just find a place for him and get on with your lives.” There are those who choose that option.
But I could not, never could, never would. Wherever he needs to be (lately, a residential school 250 miles from home, and now, a group home 5 miles away from my door!! HURRAH!!) I will be involved. I will always be involved in his life.
And when I finally learned that the choice was never between a “normal” boy, and an “autistic, epileptic” boy….the choice would have been between NO boy, and “autistic, epileptic” boy….that’s when I began to agonize less, and accept the way things are. There was never a “normal” boy in my future. I am simply grateful for the two years we had, a gift beyond measure.
And I cherish the boy I was given.
Thanks for letting me share.
d
Doorkeeper: thank you for YOUR courage in sharing your story. I’m thrilled to know that your precious son is so close to home now; I remember you talked somewhere about the distance and how it never set well with you.
I admire and am in awe of people like you and Michelle – who take what comes your way with grace and dignity, if not for yourselves then for those who can’t make the same decision on their own.
Wow, I read the last few comments at work and had to close the browser and walk away for awhile.
Thanks, Kris, but speaking for myself at least, I’m really not sure there is much to stand in awe of. None of us really know what we would do if faced with the choice Lex described, I don’t think, not until we were actually in the moment. And what if the ‘wrong’ choice was made … I can easily look back now and cringe at what might (not) have been. But like doorkeeper said, when the choice is between the child you know and love and abandonment, I don’t think many of us would walk away. How could we? People do what they do for the simple fact that there are no other choices. Or that the other choices are unthinkable. And to tell you the truth, I realize how lucky I am in that my child’s situation could have been much, much worse.
But when it comes back to Palin (didn’t all of this somehow have something to do with her?) … I actually heard the best (okay, in my mind, the only good) argument against her being VP yesterday. It has nothing to do with a teenage pregnancy or being the mom of five, per se, but the simple fact that she is the mother of very young child with Downs. And those of us who know what means, know what it means. Sure money can provide good care and plenty of therapy but … sexist or not, that is a troubling point for me. Then again, she was Governor before having Trig and likely wouldn’t have given that up either. And it’s not like it affects her ability to be a good VP, but it does give me pause.
Damn — I’m humbled to be in the (virtual) presence of so many strong and wonderful families.
God bless you all. Thank you for sharing your experiences.
[...] summarzing his story, if you consider which “this” he’s talking about. It’s a hard story. It’s a story I didn’t know was so common. Read the comments; everybody’s coming [...]
Is it just me, or does the First Dude never seem to be mentioned as a possible caretaker for little Trig? I’m sure he could maybe fit it into his schedule when she’s at the office.
In fact, I’m betting they already have an arrangement on this. They just didn’t happen to figure they needed to share it with us.
Max, that is my thought and hope, too. They seem to have a good family support system and I’m with you on thinking it’s probably already been worked out as to how they’ll manage. The First Dude looks to me as if he could handle about anything he set his mind to, just like Sarah.
Did I mention I’m crushin’ a little on the First Dude?
Lex – among all your postings, many of which have struck a chord in my heart, this and your “Statement of Faith” have touched me most deeply.
Thank you for being a Man of Integrity and Honor. And, the Hobbit as well for following God’s leading.
You set a fine example for me and my sons to follow.
God Bless You, the Friend Whom I’ve Never Met.
You know, I’ve said this before, this is your best post yet. You just keep raising the bar for yourself.
It’s faith bro. You do the right thing because you got the right stuff. Eeerily similar situation for us..I spent a whole at sea period thinking deep thoughts after that dam test came back…BTW, my firecracker ballerina is 13 now…
Been in the woods and on the road for the last coupla weeks..Lots to catch up on in here. Missed the B.O.H. convention thing totally(sorta planned-heh) with only once a day cellphone sitrep from agitated better 1/2. Lots of good stuff in here to catch up on Lex. Presently in your ‘hood for 2 days of bidness, flying out tommorrow. Celebrated McCain’s dam fine speechwith Macho Fatittas at Miguels and uno Margie…burp.
Gotta see what what ‘Mander is up to. I’ll bet he’s crowing about the VP pick. Hell, he’s been suggesting it for months now! It’s almost like he’s advising the campaign! I know he was touting McCain ballcaps but….
b2
Dang, Lex! What they said. I mind an account by a Nip Naval Aviator (not Sakai) about meeting an old guy in an SBD. The bomber pilot could have (maybe) escaped, but immediately turned to engage with his nose guns. Lost the fight, but he was like, game, y’know?
Turning into the fight,and facing it, and doing what’s right, and letting the rest go, yep. Wish I were as good at that.
Miss BirdLegs: I’m with ya on that! In fact, I’m crushing on the entire Palin family. I suspect that with them they all take care of each other. Piper slicking down Trig’s hair with her own, um, spit was just beautiful to watch. It’s a true family – any possible warts and all. I would imagine discussions about who takes care of whom just don’t need to happen – it’s instinctive.
McCain*Palin 2008 – it’s what we need!
Having a husband who is always there and always involved, even when he’s thousands of miles away and his hand knows the feel of his gun better than of my hand….and knowing that I am so very lucky, and so much luckier than most (families with autistic children divorce 95% of the time)
) with help from his better/other half will probably take a leading role in Trig’s care and scheduling. I know a number of fathers, who, for whatever reason, are the sole provider of services and sanity in their children’s lives. One is autistic himself, and does splendidly.
I think probably the First Dude (will he become the Second Dude? Or the Vice First Dude, or what?
If the choice had been for her to stop working, and stay at home to manage Trig’s needs–and it will take 40+ hours/week–or to be VP, that would be one thing. But I don’t see VP and Gov as being that different. Perhaps it’s my naivete.
And there are many families, unfortunately, for whom there is no choice. Moms without dads, or with dads who can’t help (sometimes there’s good reason there) and Moms with multiple issues–I knew a family some years ago where the mom worked part time, cared for two special needs children, her ailing, elderly mother-in-law, and then was saddled with an unpredictable illness on her dear husband’s part. I don’t know if she survived, but I do know that for the few years I knew her, she received very little help from all our vaunted social programs.
BTW, anyone know what happens if a VP quits? resigns? God forbid….
d
Doorkeeper: Agnew resigned under a criminal cloud, Nixon appointed Ford. Nixon resigned, Ford became Prez and pardoned Nixon. It was all very icky-poo.
My wife and I had tried to get pregnant for 6 years with no luck. The week we received the referral for the fertility clinic we found out she was with child. In our first join visit to the doctor she discussed the various tests and asked us, “Would you consider termination if your child has any major disabilities?” I quickly remembered my time in elementary school. Here I had shared a building with those students having intellectual disabilities and there were 2 children in particular that every time they saw me, would run up and hug me. My mother still recounts how one ran up while I was playing kick ball and hugged me in the middle of a game, and I standing there with a look of, “How do I get this girl off me?” Whether disabled or not, the potential for love and growth, although limited is there. My wife and I both gave a resounding “No!”
Thanks for sharing Lex. The trust is appreciated.
To add a little bit to Justthisguy’s answer to doorkeeper, the President appoints a new Vice President, and then he or she has to be approved by Congress, much like a Cabinet Secretary.
What an outstanding post. I have a feeling that I’ll be thinking about it long past the time when I’ve navigated away from your site. Thank you for sharing your experience.