I am Your Worst Nightmare

Stella's Grave

Stella’s grave on her 4th birthday

I am your worst nightmare.  I am a living, breathing example of bad things happen to good people.  I am a picture of what it looks like when it happens to somebody else.

I am the mother who has buried her child.  Twice.  It is not easy to be friends with me, because at some point, you will inevitably think about the deaths of my daughters.  And you will know that your children can die too.

Rose's grave on her 3rd birthday.

Rose’s grave on her 3rd birthday.

I am the mother whose every special occasion involves a trip to the gravesite.  To not one but two tiny graves positioned caddy-corner to each other.  I am the mother whose daughter’s names are written in bronze plates embedded in the ground, just above their bodies.

Our family is your worse nightmare.  We are the story on the 10 o’clock news.  We are the faces of tragedy. What has happened to us is “beyond what you can even imagine.”

We are the parents who have lived what you hope you never will. On two separate occasions, three years apart in the same wing at the same hospital, we have had to make the decision to take our child off of life support. We have watched while death turned our children’s bodies gray and purple, bloated, swollen, stiff.

If you have known my family for any time at all, when you see us together, you will know that there are people missing. Seeing our faces means that you have to face the reality that you may not outlive your children.

Knowing me, knowing us, means that your worst nightmare could come true, because it did come true.  For me. For us.  For someone you know.

BUT…HE is Sovereign.

Knowing me doesn’t make it more likely that the same tragedy will happen to you. Knowing us also doesn’t make it less likely that the same tragedy will happen to you.  Because, God is sovereign. He decides what He will allow to happen to whom and when.  He wants you to trust in HIS plan for your life, no matter what has happened in mine.

BUT…HE is Good.

God is Good regardless of what happens to us.  He is good regardless of whether we believe He is or not.  Romans 8:28.  Even after watching two of my daughters die, I still believe God works all things together for good for those who love Him and are called according to His purpose.  I still believe in His Master Plan, which one day I will fully understand when I am with Him (and my daughters) in paradise.

BUT…HE mends the brokenhearted.

While it may be true that not a single day of my life goes by without joy intermingled with sadness, God is close to the brokenhearted.  He is close to me in a way that I haven’t really experienced before losing my daughters, a way that I’m not sure is really possible without utter brokenness.  He binds up my wounds over and over again.  God is the great Healer.  He can heal anything.  His way of healing is not always our way of healing, but He can and He does.

Psalm 34:18 “The LORD is close to the brokenhearted and saves those who are crushed in spirit.”

Psalm 147:4 “He heals the brokenhearted and binds up their wounds.”

AND…HE has conquered death.

Death is not the end, and death cannot permanently separate us from God nor from our loved ones if they are with Him.  To quote Princess Bride, one of my favorite movies of all time:

“Death cannot stop true love. All it can do is delay it for awhile.”

Romans 8:38-39 “For I am convinced that neither death nor life, neither angels nor demons,neither the present nor the future, nor any powers, 39 neither height nor depth, nor anything else in all creation, will be able to separate us from the love of God that is in Christ Jesus our Lord.

Heb. 2:9 “But we see him who for a little while was made lower than the angels, namely Jesus, crowned with glory and honor because of the suffering of death, so that by the grace of God he might taste death for everyone.”

1 Cor. 15:57 “But thank God! He gives us victory over sin and death through our Lord Jesus Christ.”

I know it is scary for you to know someone who proves that bad things happen to good people.  Twice.  I am your worst nightmare.  I am the mother who has lost two of her children.  You don’t want what has happened to me happen to you.  I get that.  There is no sugar coating what has happened to me, to our family.  It is horrible, painful, terrifying, sad, isolating, gut-wrenching, heartbreaking, and unfair.

I would never want what has happened to us to happen to anyone I know let alone anyone I don’t know.  There’s no guarantee it won’t.  There’s no guarantee it won’t happen to us again.  But there’s no guarantee it will.

BUT, GOD.  God is Sovereign.  He is Good.  He is close to the brokenhearted, and He has conquered death.  I am living, breathing proof that life after tragedy exists and there is beauty in brokenness.

I am the proof that God is bigger than everything.  Even Real Life Nightmares.

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Don’t make me Feel Bad

I’ve had conversations with several friends recently who’ve told me they’ve avoided using social media because, “it makes them feel bad.”  That, if they’ve had a good day, and other people are having a bad day, then other people bring them down, and if they’ve had a bad day and other people are having a good day, they feel bad that they aren’t having a good day.

I’ve fallen victim to allowing social media to dictate how I feel, too, and I think it’s totally wise to avoid it if it has that much effect on our moods.  But, I also think we are too preoccupied with “feeling bad” and how to “feel Aunt Patty and Finn crying about the ocean 2good.”

Our culture has taught us to avoid things that make us feel bad and focus on things that make us feel good – cars, clothes, shopping, food, mani/pedis, technology.  We’ve taken this even further.  Jobs.  Relationships.  Even churches.  We consistently choose what makes us feel good and avoid what makes us feel bad.

But why do we feel bad?  Do we feel bad because of false guilt? Do we feel bad when we really shouldn’t? Like, for example, if you feel bad because you don’t measure up to someone who has more than you (comparing yourself to others).  Or, if you feel bad because you physically aren’t able to help someone you know needs help (guilting yourself for your own limitations).  These examples aren’t healthy versions of “feeling bad.”  These are examples of shame.  Shame is feeling bad for something you shouldn’t feel bad for and have no control over. God doesn’t want you to feel bad for these kinds of reasons.  Do you feel bad for something that shouldn’t cause you to feel this way?

Or do you feel bad because something is causing fear in you?  Do you avoid topics that are uncomfortable or disheartening because you can’t handle feeling bad?  Do you see bad things happen to good people, and you can’t imagine these things happening to you, so you avoid anything to do with them?   Friends, God doesn’t want you to avoid things that are scary or depressing or hard because you’re afraid.  God is Sovereign, and He wants you to transform your mind, not conform your mind.  (Romans 12:2)  When you give in to fear, you’re doing what everyone else in our society does.  People all around you choose the things that make them feel good and bring them comfort.  Are you avoiding the hard and scary things that God could use to change and refine you because they make you feel bad?  Are you avoiding people in your life that you could bless because they make you feel bad?

Do you feel bad, but you shouldn’t, or do you feel bad because you should?  There’s a good kind of “feeling bad.”  This type of feeling bad is conviction, and God gives us our consciences so we can hear Him speaking to us about how to grow in the grace and knowledge of Christ (2 Peter 3:18).   This may take a variety of different forms – from making a change in your own life to learning how to reach out to others.  Is God trying to speak to your heart to move you to compassion or to take action, but you push Him away because you “feel bad”?

There are lots of reasons we shouldn’t “feel bad.”  But, there are lots of reasons we should.

I know that, often times, in my own life, “feeling bad” has led to so much good.

Let’s stop being so scared of “feeling bad” and figure out why we feel bad, if we need to get rid of this feeling, or if we need to allow God to use this feeling to change us.

“For we are God’s handiwork, created in Christ Jesus to do good works, which God prepared in advance for us to do.”  Ephesians 2:10

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Sweet Soul

Recently, at a friend’s thirty-one party, I had to answer the grab-bag icebreaker question, “What is your favorite bumper and why?”  I couldn’t think of anything clever off the top of my head, so what did I do?  I cheated, of course, and googled “bumper stickers.”  The first one that caught my eye was perfect.  So perfect.  And I’ve been thinking about it ever since.

Such a perfect bumper sticker.

Such a perfect bumper sticker.

My Stella Rose, who was born on October 4th and passed away today – October 9th - four years ago, changed my view of people forever.  She burned the value of each in every person into my heart in a way that nothing else could.  Because every person IS a soul…and every person HAS a body, not the other way around.

When I was pregnant with Stella, I was terrified of what she would look like when she was born.  I knew she would not look like a “normal” baby.  Even though we had not undergone any genetic testing when I was pregnant with her, because she had major problems with several of her organs, I suspected that she had some sort of syndrome.  Babies with syndromes often look – I don’t know a nicer way to say this – scary.  I knew Stella had all limbs and all the fingers and toes, but I did not know much about her facial features.  Even though I had tons of ultrasounds during my pregnancy, it was rare when I caught a glimpse of her face.  Most of every ultrasound was focused exclusively on Stella’s heart.

It sounds so shallow now, but I was worried I would have trouble loving her or bonding with her because I wouldn’t think she was “cute.”  What if her appearance was so different that I couldn’t recognize her as my baby?  What if I couldn’t bear to even to look at her?

As I younger person, I wasn’t really afraid of people with disabilities or how they looked. But, raising my own child with special needs was a completely different ballgame.  It terrified me.  Having a husband with a Special Education degree who had taught children with significant needs made always made me wonder (well, more like worry) that God would give us a child with special needs.  And, He DID.  Even before I knew the specifics of Stella’s condition, I had a feeling.

When Stella was first born, she didn’t look that different to me, but during the first five days of her life, the way she looked seemed to change every time I saw her.  The baby swollenness decreased, and Stella’s disproportionate and malformed features became more and more apparent.  Mike came back from the Egleston with pictures of Stella on his phone, and I barely recognized my daughter.  Her appearance was a bit startling, as were the tubes that were connected to her.

As the week went on, and Stella’s heart failure worsened, her body and face swelled horribly.  It was devastating to watch.  And I haven’t really shared some of the “scary” photos until now, because I was worried about what other people would think.  But, I’m not worried about sharing them anymore.  This is her story.  This is what happened to her, what she looked like, and what I watched my precious baby go through.

In the end, it didn’t matter to me what my daughter looked like.  I loved her.  I still love her.  I will always love her.

God brought this sweet soul into my life to teach me many things, one of which is to see the soul in every person, no matter how their “shell” appears – larger or thinner or “perfect” or disfigured”, no matter what abilities or disabilities or special needs she has.

God brought Stella into my life to show me how He LOVES. And to show me how to love a child with special needs as my own.

During the five days Stella was alive, I saw her SOUL.  From the moment she was born to the moment she died in my arms, I saw her, and connected to her on such a deep level that didn’t require her to look or act like a normal baby.  God gave me a new understanding of love when he gave me the gift of Stella.

Less than a year later, we chose to adopt a child who did not look “perfect.”  And, I love her.  Deeply.  I’m not sure that would have happened if Stella hadn’t changed our hearts so much.

It is just so amazing to me that God creates souls.  Every person IS a soul, and every person has a body.  Not the other way around.

 

 

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