Heather was Mum to Emma
June 05, 2001 – April 22, 2011
Heather’s web site recounts Emma’s story but also her own battle with cancer.
I wholeheartedly commend it to you. Heather’s web site
On June 5th 2001 we were blessed with a miracle, her name is Emma Grace. Emma was diagnosed with a rare form of cardiomyopathy referred to as Histiocytoid Cardiomyopathy. This required our angel to undergo a heart transplant at the fragile age of 4 months old.
Looking back on the past two years of my life as a wife, mother, and friend, I have come to realize that life as I knew it will never be the same. I wanted to share some of the things that have been heavy on my heart over the last few weeks.
When I first found out about Emma’s cardiomyopathy, I was devastated. This was a perfectly normal pregnancy up until that day, April 4, 2001. There were no major events, there were no signs or concerns. I went to the doctor that day in a rush, already having made plans for what the rest of my day would entail. I remember the exact moment it seemed that my world had fallen apart.
I think back on the events that unfolded, I think about the pain that completely took over my entire body, and the anger that I had no idea what to do with. I remember driving the 45 minutes to the children’s hospital to see the fetal cardiologist. I remember looking out the window and crying as I bargained with God on how “we could make this work.” I remember, out of no where, saying “I can handle anything, but I can’t handle a heart transplant. . .” Little did I know that that was exactly what the Lord had planned for our family.
Sitting in the Fetal Cardiologist’s office, the only words I heard were “death,” “no chance of survival,” “there’s nothing you can do,” “she’ll stop kicking in about two weeks.” I left there crying out loud, “Lord, just take her now, make her stop kicking and take her now, because I cannot do this.”
I became a Christian when I was ten years old in Amarillo, Texas. I have always gone to church, my father was a pastor, my husband was a pastor. . . but it wasn’t until this point in my life that I truly understood what a “relationship with Christ” meant.
There are many phases of the grieving process, and I found myself going thru them at the speed of light. When we came home for the Children’s Hospital that day, I shut down. If I wasn’t completely silent holding my pregnant stomach, I was crying uncontrollably. I didn’t eat, I didn’t sleep, I didn’t function.
I, silently, questioned everything about my faith. I asked those questions that are all too familiar with those of us that have faced a crisis. “Why is this happening to my family.” “What did I do to deserve this.” “Why is God putting us thru this.” My faith never waivered, but my relationship with Christ took on a completely new meaning. It was real, raw, and completely open. I shared my feelings in ways I had never thought possible. I experienced emotions I never knew were in existence. I became “Real” with my Father. I shared my anger, I shared my disappointment, and I shared my desperation. The bottom line was that I finally realized that this “thing” we call Christianity isn’t about what church you go to or what ministry you lead. A relationship with Christ is just that, a relationship. And any relationship can only thrive if it is bathed in honesty and openness. I have never been so open as I was during those most desperate times. I realized that, in fact, when I said “I can’t,” I was completely right. . . . I can’t. . . but God can. .
So much happened so fast in those first four months. So many goodbyes were said to my little girl, so many things were done to her little body, so many emotions filled the hearts of everyone around us. We prayed for a miracle, we prayed for complete healing. . . but the Lord had other plans for us. I learned that “claiming healing” and understanding the complete and awesome power of Christ were two different things. I am still, to this day, learning that lesson. You see, I believe that the Lord is able to heal Emma, but I also realize that it may not be in His plan to do so. That was a hard realization for me to come to. Many events got me to that point. Many emotions, many tears.
At one point I had to break down, I had to show I wasn’t strong all the time, that I wasn’t this tower of unfailing faith. I was human, I was hurting, I was angry, and I needed to be able to share that. I think that one of the things that is so detrimental when someone is facing a catastrophic event is for those around them to tell them “how strong they are.” It is okay to not be strong. . . it is okay to break down, It is okay to be “real.” That is when healing can take place. It does not mean that your faith is any weaker. It does not mean that your prayers are any less powerful. It means that you can be completely open and honest about your devastation.
I remember when this point came for me. I remember standing in my living room and “having it out” with God. I remember telling him that I needed something to blame, I needed a place to put all this anger, I needed a place that I could come and break down. He showed me that place. . . it was in Him. I could be all these things in Him. He, after all, was my Father. He knew my heart even before I spoke the words. Why in the world would I think that just because I didn’t share my anger with Him, that he didn’t already know?
During the past two years, a lot has happened with my family. A lot of changes have come about. A lot of “compromises” have been made. The transition periods are never easy, but I have come to depend upon this “openness” with my Father to get me thru.
I believe the Lord can heal Emma, I pray fervently every day that He will, but I also realize that this may not be His will. I realize that despite my heart’s desire, death for all of us is inevitable. What I have learned thru this, though, is that time is precious. The lives that we (those of us who have faced these situations) touch along the way is where the “ministry” is. My daughter’s legacy will live on long after this disease takes her life. Her testimony of God’s Grace, even if he does not spare her life, is MIGHTY. He formed her, He breathed life into her, and He will carry her thru this. He will carry us all thru this.
I greatly appreciate your prayers for my daughter and my family. Please continue to keep them in your prayers. One thing that I do ask, though, is that when you are praying for healing for my daughter, you pray also for His perfect will to be completed in her, whatever that may be.
Pray for grace and understanding for her father and I. Pray that we will understand the path that He is leading us down. Pray that our hearts will continue to be “open” and that we will not feel the pressure to constantly be strong. . . for in our weakness, HE is strong.
Please pray that we will be open vessels. That our lives, and the life of our precious Emma Grace, will minister to every person we come into contact with.
I am going to leave you with a verse that a dear friend of mine has placed upon my heart for comfort. “Having Done All, STAND.” Knowing that we have done all that we can for our daughter, we are commanded to “Stand”. . . stand in the promises of the Lord.
Thank You for all your support.
You are a blessing to me.
Heather (Emma’s Mom)
” Three times I pleaded with the Lord to take it away from me. But he said to me, “My grace is sufficient for you, for my power is made perfect in weakness.” Therefore I will boast all the more gladly about my weaknesses, so that Christ’s power may rest on me. That is why, for Christ’s sake, I delight in weaknesses, in insults, in hardships, in persecutions, in difficulties. For when I am weak, then I am strong.”
2 Corinthians 12:7-10
Now read what happened when Heather got cancer