Sunday, February 7, 2016

Day 7 - Hope, Benjamin, Evie & Elijah

I have had the privilege of sharing our story on the 28 Days of Hearts Blog for a couple of years now.

You can read our previous stories here.

But just in case you don’t have all day to read our stories (lol), here is the Sparks notes version of our story.

My husband, Dan, was doing his fellowship in neonatology when a baby with hypoplastic left heart syndrome was born.  The pre-adoptive parents chose not to adopt because of the heart defect and the bio mom chose not to treat and let the baby die.  My husband fell in love with this baby and we adopted her.  Three heart surgeries later and Hope is now a healthy 16 year old.

11 years later when we decided to adopt again, Hope asks if we can adopt a little boy with a heart defect like hers. We prayed for our little Tigger and when we came across this picture, we knew he was our son.

Ben was 3 ½ with uncorrected transposition of the great arteries, VSD, and ASD.   We were told that there was no hope for surgery to correct his defect but we could do palliative care.  A wonderful group of heart mamas reached out and told us not to accept this.  They advised us to send our records to Boston Children’s Hospital.  We did and Benjamin had surgery to correct his TGA.  They treated his pulmonary hypertension and he has done wonderful.

We knew as soon as we came home with Ben, we would adopt again.  We were presented two files of severe heart kiddos, who we would name Eli and Evie.

I knew Eli was my son the moment I saw his face.  Eli had no main branch pulmonary arteries.  He had TOF with MAPCAS and pulmonary atresia.  After a 14 hour surgery at Stanford, where the amazing Dr. Hanley rebuilt Eli’s pulmonary arteries using his collaterals, Eli has done incredibly well.  What a miracle this little boy’s life is.

Dan read little Evie’s file and even knowing all that could go wrong, all he could say was “why not!”?   Evie has a single ventricle.  Evie was a very sick little girl when we met her – 26 months, 13 pounds, oxygen saturations in the high 40’s, and unable to sit unassisted.  She had surgery for a BT shunt at a local children’s hospital and had her Fontan surgery done in Boston.    We had a front row seat to the miracle of Evie’s life.   She has completely blown us away!

All four children have done amazingly well.  So well in fact that when Boston called to tell us that Ben’s lung pressure numbers were low enough for us to consider closing his VSD, I wanted to scream “NO!”.  We have been through 8 open heart surgeries and numerous heart catherizations.  The children have had a few complications but for the most part have done so well.  I don’t want to rock the boat.  I don’t want to take the chance at another heart surgery.  I know it doesn’t always go well.  We’ve watched children who have faced major complications, had extended stays in the hospital, and those who have passed away. 

I wanted to be done, to allow them just to be children, and not have to think about the “what ifs”.  We had a wonderful year of no complications, no worry over who would have surgery next, no deciding if this was the right time to proceed.  No heavy discussions about whether or not to risk the surgery that might extend their lives or to enjoy the time we had left with them.  These are hard discussions.  They are, above all, just children and watching them just live their lives is a beautiful thing.

We know we have been blessed or lucky or whatever you want to call it.  Having also had a child die, I know that fervent prayer doesn’t always bring the outcome you wish for.  Being blessed has nothing to do with deserving it.  Being blessed doesn’t always mean your child lives or doesn’t have complications.  I do feel blessed for my children’s lives, but I am also blessed by Kyle’s death.  I give all honor to God because I know that a child’s life and worth are not measured by how many days we are allowed to love them or by how easy and uncomplicated their life is. 

Kyle lived 5 days and he changed my life forever.   His loss still hurts 28 years later.  I have learned to live with the loss and cling to the promise of forever, but it doesn’t mean it is easy. 

So why do we choose to adopt these children?   First and foremost, we have felt God’s leading time and time again.  We have chosen to be obedient and He has blessed us for this obedience.

I remember wondering, when we adopted Ben, how many days of loving him would make the pain of losing him worth it?   When I held him that first day, I knew it wasn’t a matter of how long.  My life was better because I saw Benjamin’s sweet face, refused to be consumed by the fear, and allowed my heart to love him. 

A friend once said to me “Even if you get to China and they die while you are still there, it will have been worth it.  Loving them is worth it.”   This statement is a truth that I believe with all my heart.

One day last week, I woke up our children and started getting them ready for their day.  I realized Evie hadn’t joined the group so I yelled her name.  She still didn’t respond so I walked to the doorway of the room and yelled again.  She still didn’t stir.  I walked half-way across the room and yelled again.  Nothing.  She was sleeping on her stomach, so I couldn’t see her face or see her chest moving.  I walked up to the bed and yelled again.  By this point my heart was racing and I was wondering if I could live through the loss of Evie.  These are very real thoughts that I try hard not to dwell on and honestly most days I don’t even think about it.   I reached out to touch her, praying that she wouldn’t be cold.  I shook her and she finally moved.  She rolled over, stretched, and said, “What mama?”   I picked her up and held her tight and thanked God for one more day with my Evie.

Evie has a BIG personality.  Evie makes my life better.  Evie makes me laugh every single day.  Evie loves BIG!!!    As I held her I thought about the fact that someday she will not wake up.  Someday Evie will leave us.   It is most likely that I will outlive her.  So why would we chose to do this?  Or as others have asked, “Why would you do this to your other children?”   Why would we set ourselves up for that much pain?  Why would we choose it over and over again?  Why?  Because their lives are worth it.  Because they make our lives so much better.  You can ask any of our children and they would tell you the same thing.

The lessons I have learned from our children are numerous, but here are a few:

·         Never, ever take a day for granted.
·         Forgive easily.
·         Live in the moment.
·         Never stay angry.
·         Always choose to laugh.
·         Love BIG!
·         Pink is a beautiful color.

·         When you are obedient to God’s call, the blessings are immeasurable.
·         A life that has worth isn’t necessarily a long one.
·         No child should die alone.
·         No child should go through surgery alone.
·         There are too many children who die alone.
·         There are too many children waiting for a forever family.
·         Things aren’t what matter, family does.
·         Choosing to love is always the right choice.

Maybe you are hearing the call.  Maybe you are afraid.  Maybe you have seen one of the children listed on the side of this blog and had your breath catch.  Don’t be afraid to love.  Love is always the right choice.   If you are considering a child with a CHD, please read through these blogs and reach out to these mamas.   They are always willing to talk truthfully and pray with you.  My prayer is that more and more of these children will find their way to a loving family and it will only happen when others step out in faith.

“To love at all is to be vulnerable. Love anything and your heart will be wrung and possibly broken. If you want to make sure of keeping it intact you must give it to no one, not even an animal. Wrap it carefully round with hobbies and little luxuries; avoid all entanglements. Lock it up safe in the casket or coffin of your selfishness. But in that casket, safe, dark, motionless, airless, it will change. It will not be broken; it will become unbreakable, impenetrable, irredeemable. To love is to be vulnerable.” – C.S. Lewis


Andrea O. said...

"Love is always the right choice"

Amen to that. Thank you for sharing your beautiful family with us, my friend.

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