CHD Week: It’s the absence of fear…

Flipping the switch and expecting a light to turn on.

Sitting down and expecting the chair to support you.

Closing your eyes and expecting them to open again.

All these things, some small, some big, exhibit faith.

How…when life throws you the biggest mountain to climb in a diagnosis a child’s heart that may not beat for a lifetime….when in climbing that mountain boulders and rocks are rolling down making that climb more difficult (whether its in a difficult surgery, additional diagnosis, struggles in recovery, fear, money, marriage woes…)….do we – those in the Heartland that are believers – still have faith?

Some of us…struggle…some of us….are steadfast.

All of us…are learning to pray without worry, love without anger, have faith with fear.

Elissa’s faith story – Heart Mama to Isabelle – Hypoplastic Left Heart Syndrome

One of my heart mama friends is posting various commentaries written by other mamas on specific topics to raise awareness for Congenital Heart Disease this week. The topic I wanted to write about is how the diagnosis of CHD affected my faith.

There is a story in the Old Testament about a woman named Hannah who was childless and prayed for a son. She went to the Temple in Jerusalem (I think- I am assuming it was there because…well….there was only one and that was it) and pleaded her case  to God. A temple elder thought she was drunk and scolded her but when she told him why she wept, he softened and prayed with her. She promised that if she were to get pregnant, she would dedicate him to God.

I prayed in synagogue when I was pregnant with all of my children. I made my own promise of dedication in exchange for healthy babies whom I would love. On March 5th, God gave me His answer. Hypoplastic Left Heart Syndrome. My baby would not live without surgical intervention. It still takes my breath away.

Here’s the thing- for most people, CHD brought them closer to their faith. For me, it had the opposite effect. I was (still am most days) angry. I want to know why He gives mothers babies and then takes them- through no fault of their own. I want to know why he has given me the good chance that I will outlive my daughter, that she has a 50% chance of making it to adulthood. Why would He do this to me and countless other people?

After seeing another mother lose her baby after receiving so much hope, I lost it. I couldn’t bring myself to say that I would send prayers to people who asked for them. I am afraid to. I feel hypocritical doing so. Part of me ‘wishes’ that the child recovers or the parents receive the strength they need, but I cannot formally pray. I try. Especially for the mamas I have come to know and love, and whom I know believe so I want them to get what they need.

I had faith until it became clear to me how much I had to lose. Isabelle’s middle name is Faith. When I was terrified of what we were getting into after her diagnosis, I wanted to remember what would hold me together in spite of my anger. Sometimes it occurs to me that we were chosen to have Isabelle. She is such a love and has blessed my family in so many ways. She has shown me a strength I never knew existed in myself. In those moments, my faith comes back for a little while until the fear creeps back in.

My hope is that once again I will get to a better place with all of this and be able to open my heart to the God I loved. There was a time I really believed that I was the daughter of God and He loved me. I wrote it in my journal after struggling through my first year in sobriety after hurting so many people including myself. I felt so awful and my good friend told me that I shouldn’t be so hard on myself, that I was loved by something greater than me. It helped me get through some really down days when I could barely look up from the sidewalk. . I had faith until it became clear to me how much I had to lose.

A very wise woman once told me that faith is the absence of fear. I know she is right.

Erin’s faith story – Mother to Caylen – Heterotaxy syndrome

I always thought my faith was strong, that it gave me the strength to face the adversities and obstacles in my life; but also helped me to appreciate the little and big things, to find joy in everything.  That is until Caylen was born.  We were told we couldn’t have children that we would have to adopt.  So, imagine our surprise when we found out I was pregnant.  It was a difficult pregnancy due to my age (40), my diabetes and other health issues, and that I had back surgery the year before.  As far as we knew, the baby was fine, though, no issues there. 

The last five weeks of my pregnancy, I started showing signs of preeclampsia, but without the high blood pressure.  I swelled badly, my amniotic fluid increased exponentially.  Finally, at 38 weeks, Caylen was born by c-section.  Caylen was born not breathing.  She was rushed to the NICU and we didn’t hear anything for hours.  When the doctors finally came to talk to us, it was to tell us that Caylen was born with heterotaxy, with multiple CHD’s, and that her chances of survival were very, very small, and that perhaps we should contact a funeral home.  We were in shock, completely divested and speechless.  Just 14 years before, my brother and his wife had lost twin girls who were born too early due to placental abruption.  We just couldn’t believe God would take another child from our family, not again.

Immediately my parents began making calls, and those people began making calls and sending emails, placing Caylen on every prayer list they knew of and could find.  To this day, I credit all those prayers with helping save Caylen’s life.  Saving her was touch and go for a long time, but incredibly, she began to beat the odds and overcome all the obstacles in her way.  I see God’s Hands all over that.  Why?  Because it took her doctors over three weeks just to figure out all her heart defects, and the ones they knew about right away?  By all rights, Caylen should NOT have been able to live with them.  Even her doctors believe God intervened.

As for my faith, I was angry, I was hurt, divested, and I felt betrayed by God.  Even more so, I felt guilty, that I had done something to cause her to be born like this.  I was unable to hold Caylen until she was two weeks old.  I was scared that we wouldn’t bond, and I blamed God for this.  When I was finally able to hold her, from that point on, I spent hours and hours crying over her, asking “Why?”  I was confused as to why God gave us Caylen, only to take her from us again so soon.  I didn’t have the faith that He would save her; I only saw loss and pain.  It was my husband who held us together, praying, encouraging, loving, and helping me to see God’s love and mercy.  He encouraged me to pray, to talk to God, to LISTEN, and to give Him my pain. 

It was during one of my prayers of desperation, God literally spoke to me.  It wasn’t a voice out loud, but a voice in my head and heart, one that spoke with determination and love; it was a father’s voice to his child.  God told me He had given Caylen to us as an honor, not as punishment.  He blessed us for a reason.  He gave Caylen to us, not someone else, as no one else could love her, fight for her, advocate for her, teach her and guide her as David and I could.  No one could be better parents to this special child than us.  THIS is why He gave her to us.  Hearing this voice, hearing these words brought on another storm of tears, of pleading.  But, deep down, God helped me understand that it isn’t my place to know the why’s of all of this.  It’s my place to have faith, to believe in the unseen and unknown, and to trust Him to do what is best, whether or not I agree with Him, or understand. I still struggle with this, I won’t lie.  I still have fears and terror, anxiety and sleepless nights, tears and pain.  I still watch my child suffer, and wonder how to help her, and even how long I will have her. 

Through this journey and struggle, I have seen miracles done in my child – a life that shouldn’t be, is, it just IS.  I have seen her touch lives, and shine God’s love through to others.  Through Caylen and this journey, I have learned what true faith is, and what it isn’t.  I know many people won’t agree with me, and that’s okay.  This is OUR journey, and MY faith.  It’s what it means to ME, for ME, and what it does to help ME that matters.  I hope and pray that some people get something out of our journey, find a bit of hope or strength to help them.  I hope they see God in our lives, because believe me, He IS there, without a doubt.  But, faith is personal, it’s deep inside one’s self, and I can’t have it or find it for you.  I can just tell how I found mine and how it gives me a live better than anything I could have dreamed of or hoped for.  How it makes the hardest days bearable, and the good days amazing.

I had faith, but this beautiful miracle of life I call my daughter taught me what faith really is.  She is only on loan to us from her real Father, her Heavenly Father.  I don’t know how long we will have her, but we will cherish each and every moment with her.  Faith learned and lived through Caylen is praying for good cardiology reports, and praying for strength when her body falters.  Faith is seeing the amazing love shine from her eyes and heart, and hearing that sweet voice say “I love you, Mommy!”  Faith is trusting God to get us through the bad times, to lift the despair that those times bring.  Faith is letting God bring rays of hope and peace into the good and bad, seeing the joy in everyone and everything around us.  Faith is not knowing the bigger picture, but letting God and His glory paint it for you moment by moment.  Faith is trusting that if the worse happens, if He calls the light of our lives home before us, we won’t just survive, we will thrive.  We will honor her life and her miracles by spreading her story, helping raise awareness of heterotaxy and CHD’s, but above all spreading God’s glory to help other families see that having faith can make this journey bearable, make it memorable, make it shine with love and joy in the midst of the darkest, bleakest hours in the valley of the shadow of death.

This is my faith in the world of heterotaxy and CHD’s, and all the other many, many problems my sweet little girl faces on a daily basis.  This faith has allowed me to give my child up to a surgeon to have her heart stopped and repaired (will again) without losing my sanity.  This faith has taught me to pray for God’s will and direction, no matter what it is I want.  This faith is how I cope, how I survive, and how I thrive in a world no parents should know, but too many are faced with.  This is MY faith.

Comments

  1. These are beautifully written. Though I lost my son to heart defects in 2011, my faith has become stronger. I struggled at first to understand why my son would suffer for three months only to pass away but seeing what my son has inspired after his passing has helped me through. There is a law here in WV named after my son that requires pulse ox screening on every newborn. I know that Corbin’s life had purpose and continues to have purpose.

    Thank you for sharing. Heart hugs
    -Corbin’s mom