My life is not how I thought it would be

November 3, 2014

Filed in: God, Homepage, Life, Thoughts

I realize this could be a controversial post, but so much has been swirling around in my head for the past couple weeks that I just HAVE to get it out. On Monday, Oct. 20, I learned that a beloved co-worker of mine, Jackie Ortiz, was murdered, just a few miles away from where we live, and her 20-year old son was recently charged in that murder.

A couple weeks before that, I became familiar with the Brittany Maynard story…and before I was able to finish this blog, she decided to go through physician assisted suicide and end her life through the “death with dignity” law in Oregon, b/c of her terminal brain cancer diagnosis.

And I also read about a UK woman who has a 47 year old down syndrome son, who wishes she had aborted him every single day.

I think every one of these stories could be captioned with the phrase, “my life is not how I thought it would be.” But it is the life we were given nonetheless, and what we do with it matters.

Rob and I did not plan go through infertility…only to adopt a daughter, who would have a very rare genetic disorder, and for that disorder to cause her brain damage, loose milestones including the ability to hold her head up, sit, stand, eat or move properly. We were never prepared to receive a conversation from a neurologist who told us that Reagan would never do anything and that our job was to make her comfortable. I never had in my plan to enjoy a meal with my daughter while she fed through a feeding tube and I ate with a fork. I didn’t think we’d need three different excel spreadsheets with complicated formulas in there to figure out the lysine content going into Reagan’s mouth. I certainly never planned to watch my daughter have seizures…seizures that would cause her harm and cause my husband and I and our entire family unimaginable pain. Pain that makes you want to stop breathing and makes your heart feel like like it’s going to beat right out of your chest.

The neurologist who told us Reagan would never amount to anything was wrong. Seven months since Reagan’s crisis and she is eating, drinking through a straw, sitting, standing, laughing, cruising, holding things with her hands and doing impossible things according to the neurologist who saw her during her hospital stay.

Here’s a secret…NO ONE’s life is turning out exactly as they planned. And I’ve learned that’s one of the main points OF this life. There’s only one place you can find hope, and it’s not in yourself or in your circumstances.

Thinking of Jackie’s family, I can’t imagine their pain. The brothers who lost their mother…and a brother at the same time. How do you reconcile that in your head…and in your heart? Jackie was FULL of life and her smile and laugh and her high heels walking with authority to and from the closing table caught everyone’s attention. I still can’t believe I won’t see her walk by my office and ask about Reagan. She was vivacious…and she is gone and everyone is in pain and in shock and shaking their heads asking how this happened and why did her son do this? It’s awful and it’s painful. B/c of Jackie’s death, it has opened up the discussions among my coworkers about life, death and eternity…the death of someone you know and love MAKES you think of your own mortality and answer questions you might not be comfortable posing to yourself on a regular basis.

A lot of people think Brittany was brave in making the decision to die and that everyone should have that right. I respectfully disagree with this. I believe our lives are in the hands of God and that he determines when it’s our time. If Brittany is brave to end suffering early, are others who decide to fight to the end not brave?

I don’t believe a Dr. should be able to prescribe a pill to end someone’s life b/c they have a medical degree. For comparison, what about someone who is suffering from terrible mental illness? Many people who are mentally ill are in indescribable, possibly incurable pain and mental anguish and torment. Should we give them a pill to “die with dignity” and save those around them from the pain? Or what about Alzheimer’s…there’s no cure for Alzheimer’s and I can say first hand that it’s incredibly painful for all involved to watch someone suffer from that. Who’s to say in both these circumstances people aren’t in indescribable pain like Brittany? Do you believe they should be prescribed a pill to “die with dignity”? How can we as humans determine who should be allowed to have the prescription and who should not? We aren’t called to play God.

I’m heartbroken over Brittany’s decision to end her life…and in doing so, she cut her husband’s wedding vows short. I would want Rob to be there for me to the end and I would want to be there for him to the end, even in the face of suffering. I believe it’s unnatural for people to take their own lives and it doesn’t save anyone from pain as seeing a loved one die is painful altogether. And death is a part of life here on earth.

There was a little girl in my community named Caitlin…she was four years old when she was diagnosed with terminal brain cancer and her legacy has had an enormous positive impact on anyone who is familiar with her story. What if her parents decided to give Caitlin a pill to allow her to die with dignity? I’m actually horrified to write something like that b/c we know that it’s not our choice to do that…maybe it’s easier to understand that since Caitlin was only a child.

A couple weeks ago NPR did a story about Brittany on the Diane Rehm show [see transcript here]. Barbara Coombs Lee president, Compassion & Choices was on the show and was in support of of Brittany made this statement,

“no harm has come from giving people like Brittany Maynard dominion over her life.”

Dominion over her life. Wow. I suppose you say something like that if you don’t think there’s any higher power and so yes, be autonomous over your life. But as human beings, we are not sovereign. Only God is sovereign and He has a plan, for everyone’s life…even for Brittany. It was not Brittany’s time, God did not call her to her eternity, she chose to go early.

Dr. Ira Byock chief medical officer for Providence’s Institute for Human Caring offered the opposing viewpoint to Brittany choosing to medically end her life said this:

“Over 85 percent of them, like Brittany, are choosing to die, hasten their death because of loss of control, because of a sense of feeling of burden to their families, you know, because of losing the ability to enjoy life. This is from easily obtainable data that any of our listeners could get from the Oregon State Department of Health. We’re in a cultural situation now in which people are feeling that their lives — the quality of their lives are being commodified.”

The problem? A lack in the value of life. It does not exist anymore.

Downs Syndrome
Gillian Relf, wishes her 47-year old son never lived. What she’s essentially saying, is that it’s a pain in the ass to take care of a special needs child and so I’d rather have aborted him b/c MY life would have been so much easier…and the things I WANTED would have happened. MY life has been so disrupted…and while I love my son, I wish I could erase the 47 years of him being on this earth.

Her words:

I know our lives would have been happier and far less complicated if he had never been born. I do wish I’d had an abortion. I wish it every day.

She does not know that her life would have been happier or far less complicated. No one knows what even the next hour will hold. And so to make a statement that encompasses your son’s entire life and to say that had he not been around, EVERYTHING would have been SO much better is foolish.

Think about the impact
Did you know that in the Netherlands, doctors are free to decide whether a child born with a disability should live? The government has come up with a guideline of standards and if the medical team believes that the child — or the parents — would face significant suffering, then that infant can be euthanized. {excerpted from Joni Eareckson Tada’s article, here}.

Do you think Reagan would meet that criteria in the Netherlands? She probably would have while we were in the hospital.

Saturday 2

taken four days after her metabolic crisis.

If you read this blog you are all familiar with her story. You know how low our valley was and you know how far we’ve come…and you know it’s not easy. And you know that we have gone through a lot of suffering and that our path is very difficult. However, we have hope…we have Jesus and there is power in his name. And you can see Jesus’ healing power just by looking at Reagan. Is Reagan terminal? No. Can her genetic disorder (Glutaric Acidemia type 1) also kill her? Yes. But her life is in God’s hands and we have hope b/c of that.

Brittany’s story and her final decision to end her suffering shows me that she had no hope. She felt out of control and wanted to be autonomous in her decision to end her life. But I am fearful that she has flung herself into an eternity of even more suffering since God was never once uttered in all of her statements, videos or interviews…and it is so upsetting to me.

When Brittany went from this life into eternity, I believe one of the first things that happened was what Romans 14:11-12 says:

As I live, says the Lord,
Every knee shall bow to Me,
And every tongue shall confess to God.”
So then each of us shall give account of himself to God.

Everyone’s life has value and we do not have the authority to commodify a life.

But God chose the foolish things of the world to shame the wise; God chose the weak things of the world to shame the strong. – I Corinthians 1:27

The best response to losses or thwarted hopes is praise: The Lord gives and the Lord takes away. Blessed be the name of the Lord. Remember that all good things–your possessions, your family and friends, your health and abilities, your time–are gifts from me. Instead of feeling entitled to all these blessings, respond to them with gratitude. Be prepared to let go of anything I take from you, but never let go of My hand. — Jesus Calling devotional.

comments +

  1. Monica Richter

    November 3rd, 2014 at 3:30 pm

    Well expressed. Thank you for saying it. It needs to be heard. Feeling very thankful right now.

  2. Sharlyne

    November 3rd, 2014 at 7:41 pm

    Oh Man! You nailed that! Amen!

  3. Robin

    November 4th, 2014 at 12:00 am

    It’s so very odd to see this statement as an argument for your point, “I believe our lives are in the hands of God and that he determines when it’s our time.”
    Do you suppose that Brittany has thwarted the hand of God? How little value you place in the sovereignty of God. Regardless of what you or I or Brittany wanted for her life God’s will does prevail. Just because you do not understand why it is as it is does not negate the fact that He will always have the final say in life and in death. Nobody dies before their time.

  4. Anne-Marie

    November 4th, 2014 at 1:16 am

    Hi Robin, thank you for commenting.

    Yes, I do believe God is sovereign and that he is in control and I place tremendous value in his sovereignty. However, let’s not forget that God has given us free will, and we can use that will to point people toward God or away from him. Brittany chose to take her own life, and not leave her life here on earth in God’s hands. That is the definition of suicide, physician assisted or otherwise. She chose to end her suffering. God never said this life would be free from pain, worry, suffering, etc. He did say he would walk alongside us through it and never leave our side.

    Maybe we have different world views, but if you are a believer like me, then consider the path God’s own son walked…suffering unimaginable pain and humiliation…and even Jesus, God in human form, asked if there was any other way besides the cross (Matthew 26:39: “O My Father, if it is possible, let this cup pass from Me; nevertheless, not as I will, but as You will.”)

    Brittany did not bend to God’s will, she bent to her own. Yes, God is still sovereign and he still reigns and his will prevails in the end, when our eternities are set…forever, that is the final say in life and death. God was not surprised in Brittany’s decision, and he knew she would go this route when he was forming her in her mother’s womb. I don’t believe that’s what God wanted for her, I believe he was saddened by her decision to end her life just like he is saddened when anyone takes their own life. But b/c God is sovereign, he will still be glorified through this situation.

  5. Pat

    November 7th, 2014 at 12:29 pm

    I love your response to this comment. God’s sovereignty allows for man to make poor choices, it does not negate man’s ability to choose. Free will does not negate God’s sovereignty. The comment implies that because God allowed this event, He orchestrated the event. Any time our choices are in opposition to His will they are poor choices, not divine acts.

  6. Anne-Marie

    November 7th, 2014 at 1:18 pm

    What a great way of putting it. Simple and understandable. Thank you for commenting.

  7. Georgianna Baeza

    November 4th, 2014 at 7:43 pm

    Thanks for your post and your replying. I’ve been very thoughtful lately and the decision of Brittany added more to my meditations.
    As I meditate in the facts of life, I get to the conclusion that we can’t not leave aside God’s revealed will to his children through the Bible. His word should be our guide, inspiration, and the foundation for every single thing throughout our walking in this world.
    Thanks again for your words. They have always been a great blessings to us .
    Your daughter is always in my prayers. She couldn’t have better parents.

  8. Anne-Marie

    November 4th, 2014 at 7:45 pm

    Thanks Georgianna! And thank you so much for your prayers 🙂

  9. Georgianna Baeza

    November 4th, 2014 at 8:01 pm

    I forget to tell you that my mom had an older brother who suffered from bacterial meningitis when he was three years old. The consequence of that kind of infection in the early thirties when antibiotics were not an option, resulted in a severe , irreversible, brain damage. My grandma took care of him until she died. Then my mom took the place of his care taker . For more than twenty five years mom bathed, dressed, fed, took him out every Saturday and did everything in her hands to make him happy until last year when our every lasting baby passed away for a liver cancer. He was 80 years old.
    Through my uncle’s simple life we learned how much a person can be loved no matter how simple a life can be. We learned that happiness can come from someone who can only give love , an honest smile, and that could make our days as nobody
    else could . We learned that a life can not be disposed, and that life values beyond a person mental or physical condition . What my mom learned from my grandma, is a lesson to me. I took care of him for three years. The eyes of my son and my daughter were there as I took care of our 80 years old baby. We miss him. Something is missing in our family. And Christmas is not the same without him. Praised be the Lord forever and ever . Jesus is the King of kings.

  10. Julie

    November 8th, 2014 at 5:55 pm

    As one who has walked a similar path, I would be the first to say that having a child born with williams syndrome has had it’s challenges and very pain filled days. I must also say that because of the pain, our entire family has found faith in Christ and totally new lives. What a blessing! In addition I would like to add that I agree that God is the one who gives life however how we die is not what determines where we will spend eternity. It is our heart condition and ONLY God can know that.

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