Why?

I woke up this morning and looked frantically on Facebook for an update about Baby Rowan.

She is a month older than Evan and I became quick “friends” with her mom on Facebook although she was thousands of miles away in Idaho.

Baby Rowan has hypoplastic left heart syndrome – basically – born without half of her heart.

She fought the good fight but is now playing with the Angels and getting kisses from Jesus.

I immediately looked over at Evan – snoozing and snoring in his Boppy – only an arms length from me.

It was midnight and he was sound asleep, but I had to pick him up, hold him close, tell him I loved him.

The Heartland is a place no one wants to be.

But, so many of us are stricken with congenital heart disease, so many, that we band together.

Moms and Dads – praying for each other, our babies, for surgeries, for recoveries.

We rejoice together when another baby makes it through surgery, does well in recovery, gains weight, sits up, smiles…you name it…we find a reason to celebrate.

But we also grieve together – the pain of the difficult journey we are all on – when suddenly – or not so suddenly – another young warrior passes from this fallen place to a place no longer filled with ouchies.

I know we all think it but are afraid to say it.

“Why did he/she not make it…but mine did?”

“Why is my child thriving…but hers/his is not?”

Breathe…..

“Is my child next?”

The painful reality of our lives and the desperate need to spread awareness about congenital heart defects runs rampant in our community.  We need our children’s struggles, their fight, the success, the sorrow – we need all of it – to mean something.

Seeing as Evan has only had one heart surgery and not his open heart surgery – I constantly pray that God will let me keep him.  I tell God, “I know Heaven is a much better place than here – but I promise I’ll do my best to make sure that he doesn’t know the difference – that he knows joy, he knows unconditional love, he knows compassion.”

I beg God.  Every. Single. Day.

I have a hard time asking God, “Why does this happen to babies?”

Because in the same breath, I still have to praise Him for my healthy girl, Isabelle.  I have to praise Him for getting Evan through his first heart surgery and letting Evan thrive.

I could ask…”Why my child?”

But I also have to ask, “Why my child?”

Why did we get picked to deal with the pain?

Yet.

Why did we get picked to also experience true, unrelenting joy?

Why does Evan have to suffer?

Yet…

Why does he still have a smile that radiates Your goodness?

Why does he have to have a heart surgery?

Yes…

Why was he so fortunate to have been born in this time, this now, where a heart surgery is even possible?

 

The pain is so great because our love for our children is so deep.  Without love there is no pain.

The greater we love….the greater the pain.

It’s the dichotomy of this journey that I am still learning to juggle.

The bad with the good.  Because the bad is so awful – no one should ever have to bury their child or even think about it.

But the good is so great – seeing a child grow and thrive after heart surgery – grow and thrive – not just survive.

I never, ever want to know how it feels to lose a child.

The fear…unfortunately….is always there.  The terrible thoughts….never go away..even on Evan’s best days.

 

Since I’ve had Evan – I ask lots of questions when it comes to faith.

I need faith to be concrete instead of abstract.  I need cause and an effect…one that I can touch, feel, hold.

I don’t see the air…yet I still breathe.

I don’t question breathing…I just do it…because so much around me says that it exists – the green grass, the light breeze, the people all around me breathing in and out.

I try with all my might to have that same sense in my faith.

Just pray and have faith…even if I can’t see it…because so much around me says that it exists – the fact that my Evan is still here today, the fact that in the darkest time we’ve experience I’m still able to stand, the fact that I still feel joy amongst all the sorrow that surrounds me.

 

I always thought when I would meet Jesus I’d ask Him, “Why my Evan?” with anger and pain….

But, as the days pass and I watch my boy grow, I watch him nestle into our family of four, I witness the pain in the Heartland as we lose another warrior but also see the impact a little, brave girl had on this world….and watch how the tiniest of bodies shines and becomes the Light for so many..

Instead, I now know that I’ll have to ask Him, “Why my Evan?”  in gratitude and humility.

 

To my heart family – to those who have gone far too soon – I pray for comfort and peace that transcends understanding.  Thank you for sharing our fighters for the world to see the Light.  I grieve with you for your loss…

 

Comments

  1. Sandra martinez says:

    Words so true!! We are a family that rejoices and yes grieves together. We go through the same questions and instinctively we hold our little warriors tighter. Boy oh boy do we ever appreciate each second we have with them. We only have to be alive to die, whether we live 100 years or 6 months. Baby Ro oh how you are loved!!! <3 I will continue to pray for all.

  2. You spoke our heart so well. I told my husband the news this morning, and he just said, “Oh no…” and looked away. Everything you wrote- we feel each others joys and pain so keenly-it’s like nothing I ever would have imagined before we became residents of Heartland. Love to you and your ramily.

  3. Kristina Droblyn says:

    You have such a beautiful writing skill. I like the term “heartland”. It is a beautiful word to describe our world. We all know the joys of another day and the pain of a loss, and the fear of what next. Nothing can prepare you for the world we live in. I have grieved for many and felt joy for many as well. The pain they suffer is great, but they all see to smile through the pain. My girl is a joy and a blessing to our family. Not only has she blessed us with her “being”, but she has brought a whole new meaning to Faith and prayer in our house. I am a better person because of this trial. I have grown in ways you can not imagine. I give praise for that. ….I am so glad to have met you while we were together and I will continue to pray for Evan as he grows and prepares for his OHS. “acronyms” is another thing We learn as a parent of a child with Special needs. (OHS-open Heart Surgery) (PRS- Pierre Robin Sequence) SB-Spina Bifida TOF- Tetralogy of Fallot, and so many more that we would not of known…. Amen Amen

  4. Jen West says:

    Goosebumps!!! Beautifully written from an HLHS mommy that understands far to well! Heart hugs!

  5. Clyta Harris says:

    On January 4, 2011, my grandson, Will, was born with HLHS. At 8lb 4oz, he looked so healthy, but we had known since 20 weeks gestation that he had the problem. He had the surgery, and despite a small bump here and there, he survived and thrived! He went home with his precious parents who had waited six years for their first child to be born. We had so much hope that he would have a good life.

    On his two-month birthday, he started to have problems breathing–no fever at all, no obvious symptoms. My daughter and her husband got out of bed and rushed him to the hospital still in their pajamas. Will died one block from the hospital. Had he not been doing so well, the shock would not have been so great! We wondered and asked WHY so many times.

    Two months after his death, the autopsy report came back. The heart surgery was perfect. Will had contracted a staph infection, which had gone undetected despite three visits to his doctors that week. Strange as it may sound, I actually took a measure of comfort in knowing that the heart problem was not the COD. He would have been 18 months old yesterday; he had been gone 16 months yesterday.

    As Will’s grandparent, I realized something I’d never thought about before. Grandparents of lost children suffer a double grief–grief for the little one who has died, and grief for their own child who has lost a child. We know Will is in Heaven, but we miss him every day. We will be with him again, and that is our greatest comfort, along with knowing he is healthy and has a whole heat.