ok, here goes. this is a major post. yesterday i was searching the net for other meckel gruber families and i came across some blogs after a very long search. out of respect for them i am not going to link to those blogs. they were all Christian families, and hardcore too. like me, they all loved their babies dearly from the moment they found they were pregnant. they cared for themselves and their growing babies and then the unthinkable happened. like with my Emi, they received a lethal prognosis. the decision was excruciating for my husband and i, but we decided to terminate the pregnancy with an induction of labor at 22 weeks. these women choose to go to term. now i have to say i respect their decisions, but i am so disturbed by it. i pride myself on being an open minded individual but this decision unnerves me and i don’t know why. i don’t know what makes me angrier, their uneneding faith in God and his ‘plan’ or that they said that they loved their child and therefore could not go forward and terminate the pregnancy. they said life was precious and they are no one to intervene. they feel that only God can take the child away.
first off, just incase anyone has a doubt – I LOVE EMI AND LOVED HER FROM THE MOMENT I KNEW I WAS PREGNANT WITH HER, ASIDE FROM THAT I AM FULLY CAPABLE OF LOVING AN ‘INPERFECT’ CHILD. ok got that out! how dare they even imply that someone that goes through with an ‘interruption’ of a pregnancy due to a lethal prognosis (or even a poor prognosis) does not love their child. how do they know?
secondly they talk about interrupting God’s plan. what the fuck do they know about God’s plan? really. isn’t the whole Christain faith about God and his mysterious ways? (and by the way I consider myself Christian). i don’t beleive God wills disease and devastation. i do beleive God allows these things to occur, but most importantly he allows us to make decisions. doesn’t the scripture talk about God knowing the heart of a sinner? HE knows the action, but more importantly HE knows the heart intimately and the why. God knew the turmoil in my heart, HE knew the love i had for Emi, HE knew the dreams and hopes. HE knew it all. when i begged HIM to save her HE heard me. when i cried out to HIM in anger and helplessness i know He heard me. i personally felt it was cruel to let her go on. i read the research. i understood that her kidneys were not working and never would. i understood that in my womb, she would never move-i never felt her move. i remember a sonogram was performed before the diagnosis and the doctor was trying to ‘wake’ her so that she would move. he was pushing on my abdomen, but we just all laughed and thought she was all snuggly and sleeping in mommy’s belly. it wasn’t that. not by a long shot. she was simply unable to move because of the drastically low levels of amniotic fluid. no kidneys, no urine, no amniotic fluid. then she was anencephalic. we were not talking diminished quality of life, we were not talking special needs. we were talking L-E-T-H-A-L. death was certain.
and in all honesty i don’t beleive that God’s plan was interrupted by my decision. God is all powerful, last i checked. He could have stopped it. And no, I was not testing God, I was excercising the free will i beleive HE lovingly offered us. At 22 weeks and a few days she could have lived, miraculously i’ll conceed. I delivered her vaginally, so she could have lived. it did not happen. personally i find it cruel to prolong the inevitable. cruel to know she was going to open her tiny mouth at birth and gasp for air only to die anyway. Emi was going to die. her neural tube was supposed to close at roughtly 4 weeks of pregnancy and it didn’t happen. therefore the decision was already made for us before i even knew i was pregnant.
i know this view is highly controversial, but it is not something i took lightly. rather it is something that until this day i am at complete peace with. two days before my induction i begged God to take her away and to eliminate my need to decide; i did not want to play God. i begged him to compell me to carry to term if it was the ‘right’ thing to do. nothing. the next day a sonogram revealed the first stages of heart failure. technically this may have eliminated my active role in determining her fate. but i still feel i went through with it, because we will never know if she technically passed away due to heart failure or the stress of the induction combined with her abnormalities.
currently one of those bloggers is pregnant again with another baby with meckel-gruber. i will breat it down further. her first pregnancy was a meckel gruber baby which she carried to term. the baby only lived a few minutes. her second pregnancy was a miscarraige. she is currently at the end of the first trimester of her third pregnancy; it is unfortunately another meckel gruber pregnancy and she plans to carry to term again. it upsets me to no end when people talk about what God wants and what HIS will is. we don’t know. if God really did not want a termination to occur, i don’t think i would have been placed in that situation. but if he knows His children, and the way they were raised and what they are likely to do, then i bet he had an idea of what i would do. people that claim to know his will and claim to know what’s right or wrong are the real assholes, because they are the ones that are intent on playing God and placing judgement when he himself says that judgement is His. God gives us free will and i boldly beleive that we are not so much judged by our decisions, but by our motivations. my motivation: i wanted to free my baby and myself and my family from further pain.
after writing this long post i realize that what troubles me about their paths is not so much their decision, but rather the questions that their decisions and the motivations behind them raise:
are they crazy, courageous or selfish enough to carry to term?
does it say more about them than me?
is it cruel of them?
was it cruel of me?
what does God think?
is God really concered about our decsions (carry to term or terminate) or rather is he more concerned with what we do in the aftermath?
i truly beleive that my last question is really an answer. i beleive that God is less concerened on the how or why, but rather concerned with what occurs afterward. did we grow in our faith? do we have more character? do we appreciate life and others more? have we evaluated our place in life? our relationships? the direction our lives are taking? what are we doing with the precious life we were given? what are we doing with our gifts?
and in the end what is the difference, right? to carry or not to carry? the outcome is the same. where we go is the difference, and how we might change and affect others is too. i think that is what matters. i feel a little better now.
*******whew, before the onslaught, i just want to add that i am NOT condeming the decision to carry, but rather:
1. the beleif that NOT carrrying equates to not loving your child
2. the beleif that God would condemn one decision over another