No one truly knows God’s Plan Anyway, so just Shut up!

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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

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About Jessica Emilia

Mother, wife, grief survivor, dancer, yogi, feminine, baker, cook, lover, fighter, perfectly imperfect, optimistic, pessimistic, reader, writer, funny, sarcastic, compassionate, emphatic, sympatheric, HR Pro, anxious, confident, supernatural, hocus-pocus, friend, daughter and momma again...

18 responses »

  1. Having carried a ‘fatal’ baby myself (albeit unknowingly), I had to think about what I would do this time around if we had the same diagnosis.

    I think I would try to do the same thing you did—induce to deliver. There is something in me (no judgement to anyone who has) that does not want to think about a D&C at that stage in the game.

    I do believe this ‘right to choose’ crap does not apply in this situation. The ‘choice’ is still an end that no one wants….

  2. I read your blog often, but I usually don’t comment. I have to tell you though, that I feel like each person has to make the decision for themself. Early induction what was best for you, and carrying to term is what is best for them. I honestly don’t feel that there is a right or wrong way to do things when you are in this situation. You have to do what is best for you and your family. Either way, it is unimaginable and horrible, and I’m sorry you had to go through it.

  3. At my last deadbaby meeting, there was a couple there that made the decision to terminate a ‘fatal’ baby. The discussion around this went on for sometime. Toward the end, one person suggested that opting to terminate seemed to be the more difficult decision to make than choosing to go forward with the pregnancy knowing the prognosis. I’ve been thinking about this ever since…

    Reese is right: Regardless fo the choice, the result is awful and wholly devastating.

  4. I don’t know what I would do if I was in your shoes, like you said, either way the outcome is the same and it sucks.

    I am also a Christian and I also *do not* believe that it is part of God’s plan for our children to suffer and die. I can’t understand exactly the magnitude of what you’ve been through, but I have lost 3 babies early in pregnancy and heard similar comments about God’s plan and will and that everything happens for a reason. No way. I can’t believe that a God who is supposed to be about love and grace WANTS my children to die. I can’t believe that he wanted your Emi (or Daniella) to suffer and die either. He never wanted this for any of us, and I don’t understand why he lets it happen. It just sucks.

    I don’t think you are cruel to make that choice, and I think God is sad to see little babies die too. I think he would understand your choice, he watched his own son suffer and die after all.

  5. I’ve known several women close to me who “chose” to terminate for medical reasons for fatal conditions. it was the single hardest thing they ever had to do in their lives. one woman had to do it twice, for unrelated genetic conditions. they each wanted those babies more than anything. the “choice” was not their own. it was made for them, as you said. yet they carry tremendous sadness and guilt.

    no parent should ever be in that position.

    one woman seriously questioned her faith as she knew her church would not support her decision, just at the moment she needed it most. she never told anyone in her community.

    you do what’s best for you at the time. there is no good answer. be gentle with yourself, jaded.

  6. I think you did what was right. When my grandmother was suffering horribly with cancer and was scared and could no longer talk we asked that they pull the plug. Of course we wanted her around longer, but we would have just been prolonging the inevitable and she was in immense pain and she was terrified. It was better off to let her move on to somewhere safe, somewhere she belonged. I know it isn’t the same thing, but the point is the same, it was a very hard decision and I think continuing to allow someone to suffer when you know they aren’t going to make it anyway is really rather cruel. I can understand why some people would do it though, they are fervently hoping that maybe God will save their baby, or that maybe the doctor was wrong (etc. etc) they also probably wanted to spend more time with their baby.

    But to cast judgement on others for making the more difficult decision is a horrible thing. And isn’t it somewhere in the bible that it says not to judge others? (Sorry I’m not christian I don’t know for sure, but I think it’s in there somewhere.)

  7. Don’t question your decisions, Jaded One. I think everyone does what is best for them in their heart. I don’t believe your decision to terminate means you love Emi any less than those Moms who carried to term. You did it out of love for her. I am sure it was unquestionably the hardest decision you had to make in your life. I never fully understand people who consider themselves to be religious, yet are full of judgement. It seems like the most obvious contradiction in life to me. And I find, at least here on the internet, that the religious zealots are often the most judgemental. In my Christian view, a good person is accepting of other people’s choices, regardless if they would have made the same choice.

  8. I have a lot to say about your post. First, Bless your heart. I mean that from the bottom of MY heart. You have endured an amazing event, and whatever you are feeling, you deserve to feel your feelings NO MATTER WHAT!
    So, I do think that your decision was more brave and less selfish than someone that decided to let the pregnancy go full term. I have seen many people and animals pass. With animals, the one thing that really kept me at peace about it was that I could give them the ultimate gift, an unselfish gift, one where I thought about THEM above Me and my feelings. I could give them an end to their suffering. Every day that you spent pregnant with your child was a blessing. But when it came time for you to make the ultimate sacrifice for your child, you did it. Kudos to you! You put your feelings aside for the health and well being of the child you love so much. No doubt that you are a fabulous Mom.
    Every situation is different. Every decision has to be made by the people in those shoes, never anyone else. In your situation, I believe that you made the right choice. But I do believe that God has a plan, I do believe he gave us free will, I believe that he guides us with his Holy Spirit. I’m reminded of the story of the man on top of the barn during a flood. He pleads with God, HELP ME! A piece of wood floats by, the man didn’t grab it. GOD HELP ME! A man in a canoe paddled by, but the man on the roof didn’t get into the canoe because he said, “God is going to rescue me. I will wait on God”. A short while later, a motorboat comes by, and again the man says, “No, I’m not going to go with you. God will save me.” The man finally succumbs to the flood waters. When he gets to heaven, he asks, “God why didnt you save me?” God said, ” I sent you a piece of wood, a canoe, and a motorboat. WHY didn’t you GET ON THEM?”
    Well we have so much to be thankful for with technology of ultrasounds, dopplers, xrays, MRI’s, incredible drs. I believe that GOD sends them to us and when they spell these type things out to you and you don’t heed their advice, well, you draw your own conclusions. God sent his messengers.
    My DH is an ICU Nurse. He is faced with life and death everyday. TOO MANY times to count, he has come home and relayed to me stories about patients that were brain dead and on life support that will live like that either until the end of their natural life (on respirators), or they will die of an acute problem (embolism, etc). SO many families say to DH, “We don’t want to kill Grandma. We can’t turn off the ventilators. Do everything you can, if she crashes, to sustain her life.” Which, painfully enough for the patient and nurses, means that they must run a full code when her body decides to leave this world. I’ve been told that you can’t do CPR effectively unless you are breaking bones. In an elderly patient, gosh, its just awful to think. But what it is to me is that they are thinking too much about their feelings and not enough about Grandma’s.
    I have droned on and on too much. Rest well, my friend. May you have many days of sunshine ahead.

  9. I stumbled accross your blog by accident. Bless your heart, you have been through too much for one human, and still manage to write so well (have you thought of being paid to write?).

    I have no good words to say on the subject of this post. I believe you did the very best you could under unimaginable circumstances. You are a wonderful Mom. No one should have to make the decision you had to make…and no one should judge someone who has been put in such a horrifying situation. Its so unfair, its sick. I wish I could just give you a hug.

    I hope you don’t mind if I stick around and keep reading..

  10. just wanted to say my heart hurts for you. nobody should ever walk this road of losing a child.

    i am sure some people think our decision to take our babies off life support was the wrong one but we made the best decision we could given the circumstances. our pastor said to us, “there is no right or wrong decision. it’s your decision and whatever you choose is the right one.” we have no regrets about our decision today…

    we all know you loved your baby more than any words could ever express. its not fair that anyone has to make these types of decisions. rest in knowing that god and god alone knows your heart.

    i am a *christian* too – just not super fond of the word…

    hugs to you…

  11. It just upsets me that people would criticise you in that situation. Even in a round-about way. I know there are many who would condemn a choice like that and it just makes me SO angry. I know what I would do in that situation. And to hell with people who wouldn’t understand.

    Like you, I don’t have an issue with people who make a different choice, knowing that either way sucks and that some people choose differently. What makes me angry is them thinking that they are doing the RIGHT thing and that everyone else is doing the WRONG thing. I won’t even go into the issues with the religion thing, since I’m not christian I feel like I don’t have a right to rant, LOL. But suffice it to say it irritates me when people say they know what their god wants.

  12. Everyone,

    Thank you so much for your words on this deeply personal topic. Hollie I thank you for relating your husband’s unique perspective, it helps to quiet the pervasive dull ache inside a little more.

  13. I did not have a clear “lethal” diagnosis but I did choose to terminate and I tried to make this decision for my son’s best interests, to avoid his suffering. It was also by induced delivery and was at 16 weeks, not 22. I will never know if it was “right” to do – no-one can know. But like you I loved my son A.

    The reasoning I tried to have for avoiding suffering for my beloved son would have been much clearer to me had the diagnosis been a lethal one. It wouldn’t have made the termination itself any easier at all.

  14. My wife tried to reach out to another “Christian” who found out that her baby has anencephaly and was praying to have her healed. My wife would not normally do this but she has the same name and birthdate as our other daughter. This lady came back extremely harsh stating that our story is not appropriate and god would never lead a person to induce early. My wife now is distraught and is wondering if she made the right decision. I just sent her this link and told her to read it. I understand that this person may not agree with our decision but to say that we lost faith is rediculous. We prayed for a healthy baby before we conceived, we prayed for her to be healthy for the 22 weeks we were pregnant with her, we prayed for her heaing when we sought our second opinion and god gave us comfort. I spent hours with our pastor asking if our decision was right, if we were killers, if we had to repent if we went through with this. I love my daughter and making this choice was the hardest decision of my life by far. I have ABSOLUTE certainty that if god was going to heal her he would have done so and if he wanted us to carry to term he would have put people in our path that would have steered us in that direction. If at any time our pastor, friends, family or even our dog would have said that they feel god telling us to carry to term we would have and if there was even a 1 in a million chance at life we would have taken it. Neither happened and I do not regret our decision at all. The bottom line is that miracles do happen but for whatever reason we were not meant to have one in this case. God loves us and he does know the heart.

    I am not suggesting that everyone who has an anencephaly baby should induce early any more than I would suggest that everybody should carry to term. I would, however, say that the decision is a very serious decision that is a lose/lose. Pray and seek for yourself and you will make the decision that is right for you.

    God Bless,

    Jonathan

  15. Jonathan,

    I am so sorry for your loss. I hope my story can help your wife see a different perspective and be more at peace with your mutual, but heavy decision.

    J

  16. free will is the hardist aspect of christains to truly see i would have to ask do you belive in healings from God ? and if so did you take away your babys free will to live?

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