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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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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No Tears

Mommy and Daddy with Rose the night before she passed away.

Mommy and Daddy with Rose the night before she passed away. We are trying our best to “smile” just a little here.

I don’t cry much, especially not publicly.  I’ve never been able to just tear up and let my outsides match my insides.  I just can’t for some reason.  I get choked up to the point that I can’t swallow.  I want to cry.  I want that release.  I want other people to know that I am in pain.  I want them to know that their pain affects me too. But I just…CAN’T.

I rarely cry.  Don’t let me fool you.  There are plenty of tears.  Just not visible ones that help you to know that I’m sad and hurting.  Actually, I’m way sadder now than I was even a few months ago.  I MISS MY DAUGHTER.  I miss both my daughters, but I’ve learned to live a little better without having Stella.

I live with PTSD. I live with the images of my little Rose lying there with her belly splayed open, her eyes squeezed shut, her hands freezing and puffy.  There were a few who saw her the day before she passed away.  Let me tell you, what she looked like then didn’t even compare to what she looked like the next day.  I knew the instant I saw her she was gone.  It amazes me that the medical staff were not able to say that with certainty.  But, I knew the look of death.  Discolored, cold, bloated stiff. Fluid seeping from every orifice.  Her tongue swollen to three times its size, and her mouth gaping open. You know how kids sometimes play dead and hang their tongues out of the corner of their mouths?  It really happens, you know. Sounds disgusting, doesn’t it? Sounds like something you don’t want to imagine?  Well, I didn’t have to imagine it.  It was real.  My little girl died right in front of my eyes.  For the second time.  My second little girl, my Chinese rainbow.

The thing is, I suffer silently.  No one asks; I don’t share.  This is the burden I live with.  All the time.  Every day.  There is never a moment when I don’t think of my daughters, yet I’m constantly forced to move on and accept life without them.  I was finally getting to the point when Stella’s death stung just a little bit less when it happened all over again.

I’m not perpetually depressed or a mental case (although I joke with my hubby about going crazy).  But, you see, I live in somewhat of a fog.  A very lonely fog.  I went through this with Stella for about 2 years.  I couldn’t think completely straight.  I needed people more than ever; our family needed people more than ever. People distanced themselves. Once again, I find that to be true.  I need people more than ever. Our family needs people more than ever.  This is a very hard season in our lives.  VERY HARD.  Our struggle is not easy to see.  It’s not like someone who’s lost a job or who’s gotten attacked while they were exercising.  But it’s just as painful. Excruciating.  And there’s NO END to the pain; there’s no remedying the situation.

People draw their own conclusions.  Some people think we are ungrateful.  Some think we’re complainers.  Some think we need counseling.  As the one going through the grief, I’m telling you what we need MOST is FRIENDSHIP.  We need people to help carry this with us, to be there for us, to lighten this load a little.  To stop making excuses and avoiding us.  I don’t mean the generic, “I’m here for you,” or “I’m praying for you.”  I mean the, “Let’s hang out” or “Can I take the kids so you and your hubby can relax and talk about Rose together?” or “Could I be there with you while you peel her name off the wall?”  or “Can I help you create something to honor her memory?” or “How are you feeling about Rose today?”

Our family is SO WEARY.  It is by the grace of God that our family is still functioning.  It is by his grace that our marriage has not fallen apart.  But, we are suffering.  Silently.  Mike, too.  Because you don’t see his tears, don’t assume that he is not hurting.  HE IS.  The most wearying part of suffering is doing it alone.  We NEED you, FRIENDS.  God put us here to be the hands and feet of Christ.  Hands can pray, but they can also help.

We didn’t expect to find ourselves in yet another season of loneliness and suffering, especially not three years to the month after losing our first baby girl.  The fog was just really beginning to lift from the grief of losing Stella.  Here we are again.  Do you know how much I hate sounding needy?  I do. We do. We CAN do it ourselves (with God’s help of course), but God put people in our lives to do something.   We won’t always be the “needy ones,” but because of what God has called us to walk through right now in our lives, we do need help.  We find ourselves continually discouraged and alone.  Me, Mike, and our family.

God is our refuge, and God is our Strength.  BUT, HE also uses His people to strengthen others.  Just because you don’t see our tears, it doesn’t mean they’re not there.

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